In an online world, diagnostic labels have become cultural currency. Where once you might identify with your homies by wearing Adidas or Nike, now you can say whether you are exploring, self diagnosed, peer diagnosed, formally diagnosed and with which labels. If you don’t like the labels you had or feel they did you harm or were the wrong ones you can shop for those you identify more with and if you don’t get the label you want you can keep seeing therapists until you find one who agrees with your own self assessment. In the meantime people can be on waiting lists for those therapists, therapists who hand out labels for things like access to services. So what type of therapists might help validate those in need of identity validation? A life coach helps people explore identity. A mental health social worker helps people with identity related dilemmas, the confusion, anxiety, alienation these cause them and helps people adjust their lives to better fit with how they see themselves. A psychologist may help explore identity but generally focuses on pathology and how to solve it so if you’re really wanting to explore identity and celebrate it not treat anything, a psychologist is probably not your person. A psychiatrist can give you a label for an illness according to a DSM and offer to medicate it. So not sure that’s going to help those suffering from an identity they feel doesn’t fit or a new one they want validation for.

Is the world unfair, unequal, has no place for oddities? Guess what… life’s tough, people won’t understand you… nobody will care about your ‘shit’… and that’s a symptom of a serious social disability called OVER POPULATION… it can be cured by condoms… if we cure it enough we’ll all stop taking each other for granted – guaranteed. Fact is Dr Phil and Oprah have lied… the world was never meant to be kind and equal to all… its overpopulated, has bred greed and competition and heirachy and hypocrisy.. its time we faced up to the fact we are too selfish to care about the planet and too selfish to care about any children but our own ones, and too selfish to care about any groups but our own homies and essentially if we had to walk 5 miles to the next human we’d really appreciate them whoever they were

A diagnosis of subclinical AS may help those who are looking for identity validation but don’t see themselves as having any significant level of disability. And disability is also relative. Any human being with a strength will have a related weakness. It’s how we all work, all we human beings, no exceptions.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Is Asperger’s real? The case for subclinical Aspergers.

Paul Harthill
Piece of mind. I always knew i was different from everyone else and was constantly mis diagnosed but found out i had ASD when I was 30 and it made a big difference to my quality of life.

Jonathan Hanna
I agree Paul, you do need that confirmation so you can learn to accept who you are and grow in the process, well that was the case for me anyway.

Donna Williams
So Paul, you a) didn’t experience yourself as having significant disabilities b) wanted a new diagnosis which you felt fitted you better than the others you’d been given?

Carmel Anne Jones
Peace of mind, knowing who I really am.

Paul Harthill
The only reason I pursued that was because my son had just had a diagnosis of ASD

Donna Williams
Jonathan, if you had no significant disabilities why seek a medical dx? And why not accept what you feel you know and work through that as part of your o
Carmel, if you didn’t experience significant disability why would a medical dx give peace of mind? And can the whole of one’s selfhood be reduced to really JUST a condition, to a DSM checklist?

Paul Harthill
@ donna, My difficulties were mainly social problems, my interaction with others was pretty poor but with the correct councelling I have become more sociable. You need to remember that were talking about ASD and not classic autism here whe…re a physical disabily would be more likely. It wasnt the case that i wanted a new diagnosis, I had kind of always known I was on the spectrum but to have it confirmed and to recieve the correct councelling and help greatly improved my quality of life and after all isnt a diagnosis of something there to make sure the correct treatment can be given>See More

Donna Williams
Paul, your son would have got a dx on the basis of noticeable significant level of disability… a medical dx is not done for children doing identity exploration, so why as a parent would you simply not say… ah, yeah, I can relate to some of that… why also want a medical dx if as a parent you didn’t have significant disability?

Laurie Drago
services!

Donna Williams
Laurie, agreed 100% if one requires services then one must be experiencing problems, disability… and thats a good reason for a medical dx. Paul, I agree that counselling is the point… that is one has social difficulties its awareness and counselling that helps. And no, I’m not pissed off, I just feel that having an entire world of humans getting medical diagnosis for every…thing may not be as useful as getting counselling and guidance, particularly if its primarily and identity issue… but in your case you’re saying it was more for you than an identity issuesSee More

Paul Harthill
The first step to dealing with a problem is to correctly diagnose it. How can someone get ASD specific councelling if no one actually knows thats whats up with them?

Donna Williams
You know Paul, when I was 2 I was medically dx’d as psychotic, I had no say in it, in mid-late childhood assessed as disturbed, no say in it… the first USEFUL dx was at age 9 of language processing disorder… at least it was practical…… I got a dx of autism in my 20s but by accident… I didn’t know why the diagnostician was doing tests, asking questions etc… I wanted him to help me find the other people ‘like me’… looking back I think I needed help by not another dx.. the dx is worth nothing unless it comes with real informed guidance.

Paul, I even agree re checklists and identification, just a medical dx seems to me to say this person has a disability and that’s fine if their condition IS a disability to them.. otherwise it should be presented as information about differences and the person counselled about management of those. Paul, you said the key word – a PROBLEM – but many who are currently seeking dx say their AS is not a problem… I hear from people who want one for cultural and identity reasons, as part of celebration of their differences… not because t…hey feel it is a problem to them… so I’m wondering how counselling services could help them better with that journey.. identity is a valid journey… but if one doesn’t feel one has problems then perhaps thats the job for a life coach not a psychologist/psychiatrist… which is the folks who dx ASD

Fiona Brammall
Donna what counts as a significant disability? To get a dx I would have thought you’d HAVE to have significant difficulties in relevant areas – otherwise they would simply say it wasn’t ASD. I consider that in some areas I have significant …difficulties but of course these things are subjective. I think that’s one reason I’ve so far found it difficult to get a diagnosis. For me it is mostly an identity thing too. I feel misunderstood a lot of the time and having seen my daughter diagnosed with Aspergers (and earlier my son with autism) I realised that it explained an awful lot of things that I didn’t understand about myself before. I feel that counselling cannot be done effectively without a diagnosis. Mind you, finding a counsellor who understands AS is still not easy, but I have the feeling that the psychologist I’ve just found will be able to help me out no matter what her assessment is.See More

Paul Harthill
people are constantly misdiagnosed, I was myself for year s. Was also told i was psychotic, then i was schizo, then bipolar the n something else and nothing helped me to sort myself out but with the diagnosis of ASD i was able to get the correct help for me. Fiona, I found an ASD specific charity who done counseling, all their chancellors are asd trained and have to some extent experience of the condition.

Donna Williams
so clearly you had some problems there Paul… one doesn’t get those other dx’s without significant functioning problems, so a medical dx to clarify what is and isnt’ going on makes sense there. But if you weren’t in that situation… if y…ou were someone who had never had a dx and you found yourself idneitifying with AS and felt you had no disability etc, would you still want a medical dx just to validate a cultural/identity need?

Jonathan Hanna
You make an interesting point Donna. I needed my diagnosis so I could truly come to terms with my AS, it’s like I didn’t believe I had it until I was clinically diagnosed. The diagnosis has allowed me to progress so much and it has also allowed me to access support services that without a diagnosis I would have no access too.

Donna Williams
Jonathan, if you needed services then you needed a medical dx. as for belief, if all one needs is belief, then one should believe what one believes and stick with that if it helps, ditch it if it doesn’t.

Sondra Williams
donna I to ask of that same question often i to seem some who are of diagnosed or self diagnosed that say they have of autism and I to watch and see so much function and ability and lack of anythings that would indictate of autism to me……. and i to say to self what the heck/////I to be of to give anything to change places and for self woud then be free from many things that binds me in this life that I to have not ability to function in or around the barriers that are of set strong and firm in my make up of a being.

Paul Harthill
Donna, ruling something out is one step closer to the solution. I have access to so much now and since beginning my counciling etc I am now a full time musician with no problems getting on stage to play guitar and sing, before I had my dia…gnosis it was a nightmare for me, so full of stress and pannic that sometimes I wouldnt do the gig or id get drunk to try cope with the feelijngs. the pr evious mis diagnoisies were due to other factors going on in my life though.

Jonathan Hanna
I can see where you’re coming from Donna and it’s great to hear other opinions and points of view, it’s a great way to gain knowledge and other perspectives.

Donna Williams
And I feel there’s a strong need for a new type of therapist… someone who works with issues of identity, belonging, the need for culture… and I don’t think psychologists/psychiatrists dx’ing ASD are the people for that… but I think Life Coaches are trained to help people on that kind of journey

Paul Harthill
Sondra, theres a difference between ASD and autism though, a big difference.

Claire Ryan
Donna, my daughter has Asperger Syndrome and wasn’t diagnosed until she was 11. She had been struggling with so much for a long time but it wasn’t until the point she could cope no more with her anxieties that we took her for assessment… …She hates her diagnosis which I think is sad but I don’t think we would have taken her for assessment (despite struggling socially) if her mental health hadn’t suffered so much… My son was diagnosed with ASD age 2 as he was having absences, he regressed, lost all his language and all interaction skills he had learned…. They both now go to specialist schools as they can’t cope in mainstream schools….Can you have autism, ASD, or AS if you don’t have significant differences or difficulties? How can someone have such a neurological difference and not find our society difficult to live in? Personally, I feel so many people are being diagnosed when they have traits but not necessarily all traits… After all autism traits are present in everyone to some degree… If services are being used by people who are finding themselves, what about the people who really need them? I do have a diagnosis of ADHD but I don’t use it in anyway as it doesn’t impact my life negatively… It’s not who I am, it’s a reason for my way of interpreting things along with my personality and life experiences.. Personally, I agree with you.

Sondra Williams
ASD just means autism spectrum disorders and thus autism is of one of them so not much a difference but in presentation form aspergers to autism yes agree a big difference

Donna Williams
Sondra, I think if we could RESPECTFULLY help people distinguish between a) autism, b) AS, c) AS/autistic identity then we could have people who address each properly

Sondra Williams
Claire if a person is of correctly diagnosed and is of struggling like you daughter then she is of correctly diagnosed and needs of all the supports and care that support her functioning at her best.

Lisa Marie Beddell
Hi i was diagnosed cos i was having severe difficulties with myself and didnt know why after i was diagnosed and the letter came thru nobody helped me except mental health wkrs that knew noting about autism i was expecting something sum kind of help offered but nothing autism related to help me cope better ive always had difficulties but never knew why until i was 23.

Donna Williams
Claire, I’m not sure if you can have medically diagnosable autism, ASD or AS without significant differences or difficulties but I did know one adult who drank up to 15 cups of coffee to make herself sleep deprived and agitated before going… for a dx for AS and to her joy she then got one… so I ask why do that? For her it was about validation, identity, belonging… but isn’t that a great length to go to? And there should have been something else for her… soemthing that validated her identity related journey but din’t require her to essentially abuse herself to secure a medical dx. She now is someone who feels her AS is not a disability, only ever a gift… but you see my point re services etc… she should have had help, sure, but not necessarily the psychologist/psychiatrist for disability when she was then very sure she had only diffability. Her previous dx had been schizophrenia.

Lisa Marie Beddell
Its been practically useless england with autism specialists i mean where are they? off to timbuktu i guess.

Sondra Williams
it was explained to me since ASD is of also known as pervasive developmental disorder it also means that one who is of dx should have a history documented through out the life of their developmental issues and or a history of misdx such as …some things that line up with mental health and or with the old term or mental retardations. and that the symptoms of ASD must pervasively interfer with daily life or impact it to the point of having much areas of dysfunction meaning the person is of pervasively challanged. these things of pervasive can be mild in some areas and significantly challenged in others. but it must interfer and have a STRONG developmental history documented throughout their childhood.

Fiona Brammall
I guess in saying it’s an identity thing it does sound like I wouldn’t know who the heck I was unless I was officially an “Aspie“. It’s not that strong a thing – it’s like you say about ADHD, Claire, it helps to explain certain aspects of b…ehaviour and personality (and I may well have ADHD and/or Aspergers – there are strong hints of both and they do often overlap and make dx of either one trickier). The thing about ASD is the “S” for spectrum. It’s not like a lot of other things where you just tick things of a b&w list. Some people can tick all the boxes and some are a lot harder to slot in to this “pigeonhole”

Eleanor C. Ayakura
I don’t see the point of diagnosis if you need services of any kind, I don’t see why I should need a certificate just to be accepted in the Aspie sub-culture as I often see. I understand you may need to ask a doctor to know if your self-diagnosis… was correct or just a weird idea of yours, but my shrink said I match the traits but since I am adult and highly functioning there is no point in labelling… should I struggle and see tons of docs just to have a paper that says what I already know?

Sondra Williams
doona that is of true some try too hard to be of autistic like to obtain of the dx and others of us dont need to try we just are….

Laurie Drago
I have a friend who is very smart but needed social skills she was dxed and getting alot of help, Social Skills shes going places doing things a normal 17 yr old would do with alittle guidance, she was isolating b4 this. shes high function aspergers

Donna Williams
I’ve known adults terrified they won’t get the diagnosis they are longing for. I ask why are you wanting one and often its because they already feel they identify and want that validated so their peers in the forums see their identification as legitimized. But perhaps its the IDENTITY journey they need legitimised so that instead of then reducing all they are and ever have been to a DSM checklist they can explore openly where they do and don’t fit and what they want to do about that. Sondra, equally, lets respect people’s identity journeys. Identity is as important to some people as understanding speech is if you’re meaning deaf or navigating a kitchen when you’re object blind… so we may not understand people’s urgency re identity validation but that doesn’t mean it isn’t fiercely important to them… look at the wars in the autism world… clearly identity matters hugely to those fighting to defend it. And Laurie, your friend is an example of a need for services, particular OT, REAL help with everyday functioning… psychologists and psychiatrists generally have never provided that… but sometimes I think a dx of things like Social Emotional Agnosia or Dyspraxia or Social Anxiety etc would serve people better re OT services than umbrella terms like AS. Lisa, maybe some of the specialists who should be helping people with services are booked up with people who need only identity validation! In which case unburden the services by sending people to those in the best position to actually help them with their needs – functioning needs or identity related validations/guidance.

Eleanor C. Ayakura
In the new DSM there will be “subclinical autism” and “normal variant” that are mild variations of ASD and are NOT “disorders” nor disabilities. Fine, I agree that being slightly autistic is just fine, but isn’t it weird to have a doc diagnosing you with a personality type?

Claire Ryan
Eleanor, that is exactly what happened with my mum. She was hospitalised with mental health problems from the age of 15 and periodically all through her adult life and has been given diagnosis after diagnosis that never made sense to her. Since my children were diagnosed, she has read all she can to try and understand them and in doing so has realised she has many AS traits and doesn’t need a Psych to tell her that!! She now understands who, why, what etc from her past and has been able to work through and sort/process all those confusing experiences in her life so they make sense now. She certainly didn’t need yet another diagnosis to do this and has come off all the meds these Psychs prescribed incorrectly too… She started this part of her journey aged 70 and she is now 73… I for one am extremely proud of her…

Laurie Drago
I think Aspergers and autism should be separate much confusion in the world b/c they are both considered autism Low non verbal autism is nothing like Aspergers in my opinion my friend does too she says she is aspergers with a touch of autism she hand flaps and was sometimes inappropiate behavior class has really helped her in that area. Being dxed has given her alot more opportunities to social activity she wouldnt get otherwise

Trudy Allice Joyce
ot should have lots of funding! An ot when practiced well can help many people n many diff diagnosis! Ot z rock! The focus should be for all, no matter what, the ability to learn abilities to survive and cope in and with our environment where things are diversifying at quantum speeds :/

Sondra Williams
claire that is of what i to mean she had the long pervasive developmental history that supports her need for dx, if a person is of constant placed to mental health placed and or locked into them and has that strong school history of things then it supports a need for dx.

Lisa Marie Beddell ‎
@donna i was dx cos i was having severe emotional m.downs including not being able to function socially and headbanging your advice has been the first practical advice i have had since my diagnosis they just labeled me with A.S without explaining anything id like to go back to my drs and ask for a report abt what is going on.

Sondra Williams
Elanor i to think it helps clarify of the needs for supports and such. it is of also a need as Donna is of pointing out that we have a large sub group of self dx people or people urgently seeking of a dx because they identify but are of not with noted disability and or have a long history of developmental challenges or history that supports a dx beginning in childhood.

Annette Stanton-Harkness
I sought a diagnosis not only because I had some unexplainable disabilities, but because I wanted a confirmation of who I was, not just for me, but family and friends, some of whom denied the dx at first despite it.

Sondra Williams
Lisa that is of one of the things i to hate when i to read that some give out dx and then do not give off recommendations for supports/services that can help of you that is of what makes of me angry. it is of like being told oh you have a life threatening disease but then does not tell you a plan for care…. just wrong and yes ASD can be of life threatening for some if they are of not being properly supported and given support of services they can build to agitated states and end of life through suicide.

Claire Ryan
Laurie, what about people like my son? He had no speech, no communicative intent and very limited developmental skills when diagnosed with ASD. Now he can talk using very advanced language, he is highly intelligent and fits the criteria for… Aspergers. He in my opinion has moved along the spectrum as his skills have progressed. Aspergers doesn’t mean a little amount of autism, it’s a functioning style and i know many adults with AS who have massive sensory and interaction difficulties, lots of autism if u like yet are highly intelligent and able to function very well given the right environments and support… Personally, I think the difference is between autistic traits and real Aspergers/ASD/autism. Difficulties cannot be defined by language and IQ abilities… There is so much more to it than that.

Sondra Williams
yes Claire that is of so true when people look at Carly or Sharisa they can see from their eyes that they appear severely impacted by autism but their intellect is fully intact. so low or high should not be of ever identified by intellect,… I to only use those terms for daily living skills such as self help skills of dressing, feeding, toileting, those sorts of things. and these things have nothing to do with intellect at all they have much to do with movement and processing and much of the same sorts of terms donna uses to describe things. Most with autism can present this very uneven development and have huge gaps in cognition but are of not as intellectually impaired even though it may appear that way.

Annette Stanton-Harkness
You said that perfectly Claire. I would’ve been moderately autistic as a child, progressed to asperger’s and now most people have no idea. Now where do I fall on the spectrum?

Eleanor C. Ayakura
In the new DSM along with other changes they are going to consider mental retardation as OUT of the ASD criteria – one can have it or not but the severity is measured on typically autistic traits.

Selena Svars
To think that people would allow themselves to be bullied out of discovering their status just because someone fears there are “too many of us” and that we may steal some of their “limelight”.

Cat Taylor
that doesn’t make any sense as severe autism can be the very thing that renders someone mentally retarded.

Fiona Brammall
I am trying to come to terms with WHY I am seeking a dx – I clearly cope with life more easily than my big sister, who almost certainly has AS but doesn’t really seem interested in being diagnosed. I think it would help her in terms of the services she accesses (getting the right kinds of help) but the people who are important to her won’t be influenced in any way by a piece of paper and I think she knows she fits the description pretty well and I think that has probably helped her. As for me, when I was assessed last year I was surprised at how disappointed (and kind of surprised) I was at the result. I didn’t think I would really mind either way – I just wanted an “expert” opinion. Well I didn’t feel I got that at all – the pysch talked down to me as if I knew nothing about ASD and tried to tell me how much SHE knew but really it felt like a joke as she didn’t seem to know anything about AS in women and girls. She refused to ask my husband for his perspective, even though I had explained that he was leaving me as soon as returned to Canberra.
My current pysch is very pleased that she will be able to speak to both him and my mother to get a rounded view of me, and so am I. She has already said, after one meeting, that she wouldn’t have picked me as having AS straight off but she can see plenty of traits (and has heard some useful stuff from mum). She said if it is AS it seems quite mild (at least now, as a 40 year old!), which I totally agree with, but she’s very understanding of the fact that I must be there for a reason. The reason is that I DO find a lot of things quite difficult despite being quite bright and in some ways very capable. I am at a point where I haven’t had paid work in over 13 years and I would like to find some direction. I feel that if I can understand better the way that my mind works I might be better at working out what I am capable of, what my limitations are and where my strengths lie.

Claire Ryan
I saw once on a non- verbal severely autistic child’s report that he had been diagnosed with Dyslexia… That to me is ridiculous! He couldn’t possibly have taken the test. His autism was his barrier to inter…acting and having motivation to communicate/ learn typical things etc.. how would we know if he was mentally retarded though? He could be using far advanced scientific thoughts and strategies when making the feather he loved to drop, pick up, drop, pick up etc. Maybe he wasn’t but to define a person’s mental capability by typical routes of learning when they are severely autistic, to me is unfair as they don’t stand a chance of coming out as anything other than mentally retarded. My friend was told this of her son who ‘couldn’t’ stack bricks in a certain way (among other things) thus failing a Psychiatrists IQ test… Well he liked to stack bricks his way and his autism meant that for this test he couldn’t or didn’t see the point so wouldn’t stack them the Psych’s way… He isn’t mentally retarded he is beautifully autistic and refuses to do things in any typical way until that way either holds motivation for him or makes sense.

Sondra Williams
cat for some yes I was of one of those with significant autism at younger years and was of dx as mild retardation, with severe OCD, anxiety, depression and my self talking was of felt to be of psychosis, I to self talked and echoed back scripts i to borrowed from TV and books or people and used them to try to communicate things that I to did not have of my own words for yet. it was often shared about me I to be of often stuck into a day dream state of just staring out blankly as if the world was not in front of me but within me.

Sondra Williams
some of my own kids started out with much autistic like presentations and by early school years their dx changed to aspergers, they are of still aspergers but some of my kids are of very functional now as adults in most areas but still struggle in other areas they may lose of their dx but then to me they would be of that sub group that was but is not considered of spectrum now sort of place in time, but currently they still have some limitations of things those that are of doing well have no outside supports at this time outside of counseling, and one who is of still in school she is of still on an IEP and has much challenges still in a variety of places but to met of her for a short time you would not notice of ASD in her right away, some guess of her being of ADHD instead.until they begin to know her more then they can see she is of definitely more than ADHD.

Cat Taylor
Claire. If someone has autism so badly that they cannot communicate; it would not matter if they’re an intellectual genius they would still have a mental retardation. There are many different kinds of mental retardation other than the “low IQ” variety.

Eliza Mariah
Couldn’t we just have have an all-encompassing label of Autism Spectrum? That way we can be part of the “club” without having to defend whether or not we have a “disorder”. My son said his first words at three and a half and no one but me understood what he was saying until he had speech therapy at age six. Due to sensory issues and bullying he started homeschooling at age 11. Now at age 20 he isolates and still has never made friends his own age, but I doubt he would be able to get a dx of even AS. Technically because of language delay he would be HFA. It’s all autism spectrum to me. I’m on it too but could only get a dx of social phobia so I have had a very hard time convincing my husband that I have AS.

Fiona Brammall
that’s interesting about your kids, Sondra. They sound a bit like me then. As a kid I think my mum knew something wasn’t right but no-one knew abut ADHD or ASD back then – I was considered to simply be hyperactive (it was all the rage in the 70′s, apparently) and never went to a professional. Mum just tried limiting sugar and artificial colours and struggled through as well as she could to get me through school without extra assistance. School reports usually came back saying that I could do so much better and I think people just thought I was bright but lazy. I really hate the word “lazy” because I so resented people for saying that when I was really struggling. When I see how kids can be helped at school now I wonder how I would have gone with some slight alterations or even just a little more acceptance from the teachers of my inattention, lateness etc. I hate the idea of using AS as an excuse for things but I do love the idea that people will understand why some things are really hard for me. I don’t want to stop trying to do my best – I just want people to see that I really AM trying.

Cat Taylor
ie. someone can have a mental retardation without being stupid.

Claire Ryan
I get what you mean but I meant that if it’s their autism defining what tests and activities they can and can’t/won’t do then it’s autism not needing any other definition despite not being able to demonstrate IQ abilities etc in typical ways… We will never know until their motivation to show skills in any typical way is developed… This is autism though… Mental retardation can be for many differences, reasons etc not just autism so needs to be looked at and defined separately. We may need to agree to disagree on this one as I think we are looking at it from different angles!!

CarolAnn Edscorn
Understanding one’s self creates inner peace which creates courage to take risks which can lead to previously unimagined success. Personal experience. Also–have found many kindred spirits–who once having explored the label, choose to not care about it past it’s purpose to them

Fiona Brammall
I’ve found it really nice to meet (both virtually and in the “real world”) women with Aspergers who have been really encouraging and have never doubted me when I have said that I identify as an Aspie. It’s really only the neurotypicals in my life who look at me sideways and say “really? I wouldn’t have thought so”. It IS a bit like being in a club and that is always nice when you’ve spent much of your life being a bit of an outsider. So yeah, it’s great that I don’t feel that I would have that taken away for lack of a bit of paper. One little thing that adds to my reasons for wanting a diagnosis is that, as a woman who “appears normal”, I would love to be part of the many research projects that go on, but I would feel like I couldn’t help anyone out without an actual diagnosis.

Donna Williams
Fiona, you said: “but I would feel like I couldn’t help anyone out without an actual diagnosis.”… but my view is that having a condition doesn’t qualify any of us to help anyone on a professional level… not even necessarily on a personal level… I subscribe to ‘if you’ve met one person with autism, you’ve met ONE person with autism’… a non-autistic person can’t have expertise on being non-autistic re the experience of any random other non-autistic person… there’s too much variation and variables… I’m an autism consultant but this came from a degree in Linguistics, Sociology, a post grad in teaching, several years voluntary experience in a consulting role, being a researcher/writer on the subject (including four text books) and progressively finding my appreciation for the DIVERSITY of the autistic population and its VAST RANGE of ‘autism fruit salads’ plus an encyclopedic mind didn’t hurt either came together to help me become after 5-10 years in that ongoing role a reasonable consultant.. but I have met families who followed advice from one or another or another who identified with the spectrum and found they had completely different opinions often unrelated to their child. so I think the idea of getting a dx to them presume its a qualification to work in a professional role is a fallacy and those with or without a dx should get the skills, qualifications, experience with which to professionally know the difference between and balance of their own experiences in their role as a consultant.

Rebecca Lili Roper
To get the right support

Kelly-Ann van Setten
I’m like Paul the very first poster, except I did experience disabilities (which never made sense because I started off as a “smart” person in life. It was so damn good to find out how dumb I am, I love it)

Elyse Bruce
Here’s an article about a young man who was diagnosed AS at 21 years of age. He would fall under the category of “no significant disabilities” but the diagnosis served a very important purpose for him:

http://www.walesonline.co.uk/news/wales-news/2011/04/18/i-grew-up-to-think-i-was-an-evil-young-man-and-i-didn-t-know-why-91466-28536173/

Eleanor C. Ayakura
Sondra – having a history of misdiagnosis or developmental disabilities is not obvious and largely depend on the context. The anglo-saxon world, as far as I can see, is largely medicalized and if you have a issue you are usually checked by a doctor. Very often, even when they don’t know what it is, they try to diagnose you with something. At least this is the impression I can gather. I live in Italy where, let alone a very poor awareness of what autism is, you don’t go to a psychiatrist unless you are a basket case; moreover if you are not intellectually retarded, childhood psychologists tend to say you have just nothing and need to try harder/grow up/fix yourself with the time. + many parents are too ashamed to have a “special needs kid” and live in denial as much as they can. As for the “retardation” issue – it is strictly related to intellectual disability that is to say *cognitive* retardation/low IQ. It doesn’t mean that retardation will now rule out an ASD dx, not at all – but it’s not going to be one of the criteria to consider any longer. While communication issues are going to be the core point. I’ll post a link as soon as I find it. Donna, in the case you mentioned that woman was even *cheating* to have a dx. So one cannot even say she needed it to be sure, because if you want to be sure you want your dx to be as correct as possible and therefore do not cheat.

Here you are the DSM link: http://www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSM-V-Work-Group-Reports/Neurodevelopmental-Disorders-Work-Group-Report.aspx

Annette Stanton-Harkness
Someone just mentioned something else that is important to me. With my diagnosis, I can now participate in the many studies that aim to help people with ASDs. I complete as many as I can now, and it makes me feel good that maybe my testing could somehow make life easier for someone else like me.

Cat Taylor
Yes that makes more sense. If someone can’t communicate at all IQ would be the least of their problems and wouldn’t be really testable anyway.

Sondra Williams
elanor I to need ot calrify i to not be to say it needs to be part of the current movement of dx but was saying for some adults seeking of an ASD dx that this dx of mental retardation might be of part of their past dx, issues, most psychologist will in evaluations will seek developmental history of a person they are of exploring as part of the whole diagnostic process.

Annette Stanton-Harkness
I just thought I’d add that I was diagnosed with borderline personality disorder as a teenager, and tested with an IQ of 130. So I guess back then, they really weren’t able to dx me correctly cause they knew so little about autism being a spectrum.

Devlyn Rhys Young
i believe it is in the humanness of ourselves that we seek to solve the puzzle of who we are as part of that spectrum of humanity – uniquely so, but to have a sense of the connectedness where there seems to be little or none… in my opinion… and, again, imho, i believe that is so for all those “differences” that are *not* noticeable to others but are overwhelmingly significant to our own selves and our ability to create, maintain, and nurture relationship to others, the world, and ourselves.

Sondra Williams
annette I to be of learned not long ago that borderline personality can over lap in presentation of Aspergers but the key difference is of that the person had a strong noted developmental history that supports Aspergers as the true diagnosis without that true history then it cant be of adequately assessed and then is of just that a personality disorder. I to learned of this by asking of several psychologist who diagnose of autism .

Annette Stanton-Harkness
Yes Sondra, it took me 35 years to find the right neuropsychologist who properly diagnosed me!! 35 years!! LOL

Laurence Benjamin Arnold
I would not seek a medical diagnosis in those circumstances, it would be pointless, however I might seek an alternative form of recognition.
I don’t have a diagnosis of Tourettes for instance, but there is a heck of a lot of Tourettisms I display, but the need for medical investigation has never arisen, and I only got a formal dx of Tinnitus, when I thought there was a possibility that I could ameliorate it somewhat, and that only since I was attending a hearing clinic for something else that was a problem.

Annette Stanton-Harkness
Learning my true diagnosis was like rebirth for me, and has only brought me true understanding of myself and my true purpose in life. I would never deny myself that experience of rebirth.

Paula Jessop
I think with this one we need to ask the difficult question about what is disability??? Does ongoing erosion of ones self esteem, confidence and personal identity due to feeling different but not being able to work out exactly why…which can lead to ongoing depression count as ‘not disabled’? I’ve met many whom strictly speaking do not have serious functioning difficulties but whom life has still been rather difficult for all sorts of reasons pertaining to being very AS…and for whom meeting others through self identification with Aspergers has helped…and whom diagnosis of Aspergers further assisted.

Laurence Benjamin Arnold
Disability is simple, it is the external circumstances of being what you are, it is not you, never could be you, it is construction in total. My mum told me a long time ago before my AS diagnosis, that I would have to choose whether to identify as disabled or not, not at some future time, but then. It is a liberating not a demeaning identity, because you recognise that it isn’t you, it is a great variety of things you have the power to change. Tis Foucault and resistance is it not? There is no one identity at all however, just a multiplicity of reflections, I am with the Buddhists on that one.

Donna Williams
Wow, Laurence, you’re mum’s discussion with you was fabulous! love how you worked with identity and AS.. that its about you, part of you, but its not all that you are… its that healthy lack of over-investment in a label that says you are your own person… see if we say “I AM Adidas” or “I AM Nike” for me that’s the same as taking Hans Asperger’s label and saying “I AM Autism”… its branding, just now we’re all online who cares about sneakers… see… so we have new labels to identify with our homies… but its all the same dynamic… Its not ‘real life’, real ‘personhood’… complete personhood… identity IS important, its journey is important… but over investment in it, complete fixation with it, social exclusion on the basis of it and only immersing with same same same and closing out the rest of life and identity as a result… well that’s not healthy and will stagnate development and shoot opportunity down so I’m with you… I’m with the Buddhists on the identity thing with ya.

Donna Williams
Interesting re Aspies who had once appeared more autistic… In Temple Grandin‘s book, Emergence, she says that at age 3 she was about to say singular words like ‘ice’, ‘go’, ‘more’ and by 3 and a half had overcome her stammer. She writes of at age 3 being told off for peeing on the carpet so taking the curtain and putting that between her legs and peeing on that as she knew it would disappear more quickly – that’s one very clued in kid! She could process a sense of self and other and awareness of consequences and how things worked (absorption, timing, avoidance of discovery) and yet she equally had tantrums and threw and smeared her feces… she wrote of playing tricks such as glueing down the toilet seat, tying her father’s shoe laces together etc… and many kids with autism couldn’t go get the glue and process the idea of glueing the toilet seat down for the purpose of annoying one’s parents let alone tie someone’s shoelaces AND do it for the purpose of annoying them… yet she clearly also had a loud booming voice she couldn’t notice was loud (happens in those who can’t perceive intonation), had temper management issues and greatly enjoyed winding people up, even strategically planning how to do so… so I can see why in 1980 when she was in her 30s how she and her mother found she as autistic but if AS was a diagnosis in 1980 (wasn’t in the English language until around 1994) then Temple would have had a dx of AS, and her behaviour was clearly pretty challenging but not necessarily because of the same issues as the kids I see as a consultant… I see kids who can’t process simultaneous sense of self and other, struggle to co-ordinate to tie laces or couldn’t go get glue, bring it back and use it to glue the toilet seat together in order to annoy others when they found it wouldn’t open… sure, its all still ‘autism’ but in terms of the type of help required, Temple’s autism would have required very different interventions to those of the kids I see whose information processing issues are the main obstacle, not ‘personality stuff’.

So even Temple was on the identity journey in her 30s when she got diagnose with autism… she’d been dx’d as brain damaged at 2, then her family progressively concluded by 4 that she was autistic, then at 15 Temple learned of her family’s conclusion and wanted to understand it, then at 30 she’d contacted Bernard Rimland in 1980 to discuss it and with her mother completed checklists in association with meetings, and out of that she came to terms with her history and condition, identifying with her autism and AS her autism, wrote emergence with her ghost writer Margaret Scariano in 1986 and became an iconic leader for those adults on the journey of exploring autistic identity.

I’m not sure where I am in that journey in relation to the public… it never really mattered that much to me to consider that… personally I was someone dealing with having been known as psychotic since age 2 (autism was childhood psychosis in the 60s), then disturbed, and who had understood myself best as meaning deaf. So I was really trying to juggle whether I was actually sane or not, or had I presented that way because I wasn’t coping with a visually fragmented and faceblind, meaning deaf world in which my processing of my body and ability to manage involuntary self protection responses was just driving me crazy! So I recognised myself as autistic before I was diagnosed in my 20s and it helped that I’d known the word since age 10… it was whispered around in my family… but I thought autistic meant ‘withdrawn’ and I knew I lived in my own world so that was no biggie to me… I wanted to understand the agnosias, the processing stuff.. and the Exposure Anxiety and its compulsive avoidance, diversion, retaliation responses and how to overcome it… I wanted answers… I wanted to meet others with autism to see if theirs was like mine, but beyond the surface similarities when it came to our underlying systems and what worked and didn’t, we seemed all different to each other … I was also needing spiritual healing, belonging… to know that as someone with disabilities I was in fact an equal and whole human being, and meeting others with autism, at all levels of functioning, all ages, that helped me feel our shared humanness and how parents and teachers could care and be humane with those who had related issues to my own… so I guess every identity journey is different, each for its own reasons, its own history.

I definitely conclude that an opinion is healthy, a diagnosis is required for services, and that for those on an identity journey, they need counseling, support, navigation in exploring and coming to terms with what is self, what is condition, what is disability, what is difference, what needs treatment and what is culture, what is excuse and what needs advocacy.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Aspergers diagnosis versus identification

ANNA KENNEDY:
1. How would you define bullying?
DONNA WILLIAMS:
Repeated intimidation/abuse on a physical, emotional or psychological level by someone in a more powerful position than oneself. Now that can be by someone the same age or size if you don’t have the ability to stand up for yourself, tend to freeze, break down, dissociate. It can be someone younger or smaller than you who has been put in a position of power over you. It can be done directly or online. It can be done by those you know or by strangers, by those you can identify or those hiding their identity. It can be done through photographing the person without their permission, through publishing details of their home information for the purpose of building hatred or inciting others to abuse them. Bullying generally involves isolating the person being bullied, gaining power over them. It’s often a narcissistic act by those who have weak self esteem and artificially puff up their egos through bullying others. Those who incite others to join the bullying may have even weaker self esteem or more insatiable egos in that their own bullying antics are not enough to satisfy their lust for power so they prop this up with inciting others to join THEM.

ANNA KENNEDY:
2. Were you ever bullied at school because of your autism and if so how did it affect you ?
DONNA WILLIAMS:
I was bullied at school from grade prep but didn’t understand it was bullying. The first bully would pretend to be a good twin then go around the shelter sheds, come back and be the bad twin and pinch, shove and slap me. I learned by my teens there were no such identical twins at the school. Essentially, I think kids like this are exploring boundaries, their own power, their good and bad sides and who they are or want to be. I think kids like this are morally and emotionally underdeveloped. They are often very intelligent but emotionally and morally, they are backward. I also think they have narcissistic tendencies or are in fact narcissistic and this may be because they were over indulged or the opposite. I feel this particular girl was intrigued by my severe face blindness and my complete lack of questioning of reality. She was waiting to see how far she could go, when she’d get caught. I think it was obviously unfair play, but it reflects more the lack of awareness about autism and lack of advocacy re teachers helping mainstream children to understand things like meaning deafness, face blindness… neurological differences. I also think there’s an assumption that all woman, young girls, even children in general are somehow flawless, that they can’t do cruel, deranged, even evil things.

In grade 1 & 2 I was pulled down from the monkey bars and kicked by a particularly narcissistic queen bee who was very proud of being the most popular girl in the school. She would line up her friends and count them off in ratings of popularity. She had girls competing to be her friend. I think she bullied me to impress her friends and because I didn’t admire or idolise her as other girls did. I think she was unnerved by realness. I think my autism perplexed and irritated her. Her brother had been friends with my brother until one day he said to my brother ‘is your sister one of them spastics’ and that really destroyed my brother’s ability to see me as human and equal, it socially isolated him, he became ashamed of me. But it also shows the social milieu of this girl, that she grew up in a family where the children were allowed to think of themselves as superior, special, talented compared to those with disabilities. The girl in particular had no problem with being exceptional. She was attractive, intelligent, fashionable, did dancing lessons and passed for ‘talented’. I just think some children are their parents’ ‘narcissistic object’ and so they haven’t learned to relate well human to human, not really. I had something she didn’t, something she could never have or be. She may have felt superior, but I believe deep down inside she was a hollow human being.

In grade 3 I was stood out in the corridor for around 1/3rd of my school year by my teacher because I had Tourette’s tics. In grade 4 I was stood in the rubbish bin by another teacher who threw chalk at me for the entertainment of the class. Being bullied by teachers was degrading, particularly the second one who utilised the class to increase his power of ridicule. I know these people were frustrated by my tics, echolalia, constant inattention, meaning deafness. I feel ignorance is part of that and they lacked training in how to not take my autism personally and strategies to manage my issues respectfully and constructively.

In grade 5 I was being taunted by the popular girls and this continued into grade 6 where it escalated to being encircled with chanting of ‘zombie’ and being shoved. By then I realised others were also bullied… for red hair, for having body odor, for having crooked teeth, for having a strange face or head shape etc etc… I was just getting it for being meaning deaf, meaning blind, lacking simultaneous processing of self and other, going into dissociation when confronted… I was the rabbit in the headlights. It perplexed these kids. They were unnerved by what they didn’t understand, were testing the boundaries, how far they could push, they were also struggling with their own narcissism and banding together with other narcissists to feel better about their own lack of humility, integrity, humanity… these were their disabilities. At the time it was very scary, more of my own disabilities than of them, my inability to get my mouth and body to respond. What happened though was it did respond after the events and these children found themselves suddenly picked off one by one when they (and I) least expected. They were suddenly pushed down stairs, shoved into the wall, had their hand grabbed and the desk lid slammed on it. So delayed processing counted for something and Exposure Anxiety may have frozen me when confronted but once it had lowered it was the bullies who were in trouble. The reputation for unpredictable retaliations meant they came to fear me (I was already deemed crazy). But the reaction of staff was that I was the one who was crazy, dangerous, and they couldn’t find out what the others had done to me to result in my progressive sudden violent outbursts.

In high school I was instantly set upon by one kid after another. At that point my father wrapped my fists in tea towels and trained me to box. I became an extremely good fighter, then I was harassed into fighting others, I was encircled and other kids were shoved toward me and if I didn’t hit they would just knock me out.

How did it effect me? I understood cruel humans existed. My own parent was extremely abusive on every level, so I started school aware of a very harsh world. So in a sense I took it in my stride. I didn’t cower because I wasn’t used to being protected. I also didn’t fixate on the bullies. I gravitated toward those who were kind, gentle, quiet kids. I found my own space or hung on the peripheries watching others. I climbed trees and spent my time up there. I was fairly content being the observer. I think my experiences made me quite the anthropologist. I do feel glad none of it was a shock. I feel glad I already knew harshness because this made me see the bullying in context, see the good people who were not bullies, see that bullies were a minority.

ANNA KENNEDY:
3. How do you stop bullying in mainstream schools and in the community?
DONNA WILLIAMS:
I think narcissism needs to be addressed. Why do we presume that constantly inflating people’s egos is the best motivator? Why do we fixate on who is winning, superior, gorgeous, exceptional, most talented, fashionable? Why do we rely on and promote extrinsic rewards? Why do we encourage children to identify with their expensive goods, their clothing brands, the hair style/tattoo/piercing they have, the drink can they prefer? Why do we emphasise heros instead of becoming the person we could most trust? Why do we overvalue pride and specialness and and confuse it with self esteem which comes with integrity, humility, a sense of our own equality? Why do we pander to the tantrums and whims of out of control egos? Why do we confuse overcaring/co-dependency and the learned helplessness it promotes with real caring and love (which is empowering)? Why do we hypocritically promote being ‘different’ then encourage fads where everyone competes to be the same version of different? Why do adults model blame politics or turning a blind eye on anything that might otherwise be ‘another burden’? See without looking at the broader context we can’t address the moral, emotional, mental, personality health of children. Sure, we can address ignorance about autism, promote equality in difference. But without looking at the illness of our current values, it is hard to change what happens in the world in general. How do we stop bullying? We challenge the values of society itself. We enlighten human beings not just about autism, but about their own issues.

ANNA KENNEDY:
4. How do you teach your child when to ignore and when to stand up to the bullies?
DONNA WILLIAMS:
There’s a game I use to help kids desensitize to insults. Its the insult-compliment game. You brainstorm a list of random potential insults and a list of compliments. Cut each out from the list and put them into a hat, a top hat is fun. Take turns drawing out and reading these in turns with each other or in a group. What happens is then when the person hears some of these at school, they are ‘just sentences’, plus they can then imagine a compliment/affirmation they could then give themselves privately to balance up the insult they heard.

I also think that bullies often crave attention and may be dramatic-histrionic, so whilst ignoring them often makes sense, sometimes ignoring them inflames them so they’ll escalate to the point of violence to ensure their ‘fix’ of a response. One thing is certain, they are seeking power, so degrading them usually won’t help, they are probably fairly experienced in their bullying and can simply take it up a level. So if ignoring them inflames them further you can agreed to ‘negotiate’. This should be with a mediator in a safe and supervised setting. There you can hear them out, why are they so uncomfortable? Could it be they are uncomfortable in themselves but they instead project this onto the person they bully? How can people help them to feel better about themselves without bullying? Are you really doing something that annoys or perplexes them? Are they lacking some awareness that could help them get over that? Are there things you can healthily do to reduce what’s annoying them? Having a negotiator respectfully talk to a bully about their own self esteem, about narcissism, about boundaries, can help them become a healthier person. The negotiator can also help the person with autism gain insight about how their own stuff is perceived, model advocacy skills, help them understand new strategies to reduce behaviors which may inadvertently perplex, embarrass or annoy others.

ANNA KENNEDY:
5. What support should be given to a child that has experienced bullying?’

DONNA WILLIAMS:
Bullying is often traumatic so those who have experienced significant bullying need treatment for trauma. But this doesn’t mean an overzealous supercarer needs to don a cape and fly to the rescue because their precious disabled child was slighted in some way. Life is full of surprises and knocks and great times too. We need the crap to illuminate how wonderful the good stuff is. Wish away every negative experience and you have someone who can’t measure how good anything is, takes it all for granted, has no contrast, and with that contrast often comes motivation. We need to help children to realistically measure the degree of what they’ve been through, what they’ve learned from it, the strategies they are missing or need to develop. Running from every knock and negative will not help someone’s development. Sooner or later we are all on our own to fend for ourselves, even if we’re 45, in nappies, in a residential care unit or day centre. All of us will ultimately fend for ourselves. The sooner we healthily empower children to do this, the better off they will later be. It won’t be a paint by numbers controllable life, but it will be an active, engaging one in which one is a more empowered (albeit perhaps still disabled) human being.

Sometimes just getting an overprotective/co-dependent carer to learn how to instead empower their child is really helpful. Carers who constantly fear on behalf of their child train the child to feel incompetent in a world of constant threats. An empowering carer recognises the potential threats but never loses sight of the benefits and actively works not on bolstering ego type pride but on more integral self assertiveness skills, even training in boxing or martial arts with which the person can have faith they can, if necessary physically defend themselves.

ANNA KENNEDY:
6. If the child with autism is the bully and does not appear to understand their actions how do you support them?
DONNA WILLIAMS:
It depends on what drives the bullying. Kids with Exposure Anxiety can strike the child they wish to greet because of involuntary self protection responses. Some kids are averse to intimacy and so fascinated by inciting carers to counter control them which gives them an enjoyable reinstatement of social distance. Some are drawn to the power of effecting a carer through attacking someone the carer protects (psychopathy). Some will torment or bully someone because they are playing out what they’ve seen on a DVD or game. Some will have sensory fascinations with hair and pulling it. Some will have Tourette’s tics that cause them to involuntarily slap objects, people or themselves. Some will have visual perceptual disorders where they can’t see the person’s face or body as a whole so may strike out just to gain space. Some will have language processing disorders that make them aversive to those using torrents of blah or certain voice tones that grate on them so they’ll target those with these things. Some will have PTSD associations which spill over into new experiences where a child reminds them of something that happened in another time or place. Some will have sadistic or narcissistic personality disorders in addition to their autism and confused with their autism. Some will have behavioral issues associated with pain, disorientation or imbalanced brain chemistry associated with gut, immune, metabolic disorders and resulting in mood, anxiety, compulsive disorders that spill out into targeting particular easy targets. So the strategy to help them understand their actions and support them depends on the range of underlying causes in each case.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Autism and bullying

This item originally posted here:

Welcome to Aspergion

In contrast, Chamak writes, you consider autism as “external” to yourself and that it must be fought because it is the root of your problems in understanding yourself and others. Is that an accurate depiction of your view of your autism, please? (Sorry for these questions – I am just very eager to check that people are not misrepresenting your views.)

DONNA WILLIAMS:
Chamak is being a purist, reductionist… Not all views must be black or white, left or right…. Life is more dynamic and complex than that.

My question is WHICH Ego-Syntonic (part of self) things Jim or Temple consider their ‘autism’… Schizoid PD?, OCPD?, Dyspraxia?, Sensory Integration Dysfunction? Sure… go for it, I’ll go with that.

But if you ask if gut, immune, metabolic disorders and their impact on brain fog, brain malnutrition, visual-verbal-body agnosias, brain injury or the brain chemistry imbalances associated with high Quinolinic Acid (ie mood, anxiety, compulsive disorders… incl things like Exposure Anxiety)… are Ego Syntonic (part of self)?… then I say, walk in MY shoes… then you tell me… these things don’t feel Ego Syntonic (part of self), they feel Ego Dystonic (conditions that impinge upon my experience of self, my expression of self).

Does meaning deafness, meaning blindness look autistic? You betcha. Do the compulsive involuntary avoidance, diversion, retaliation responses of Exposure Anxiety look autistic? You betcha? Does significant brain fog or brain malnutrition, food allergies or neurological impacts of gut, immune, metabolic disorders look like information processing disorders we equate with looking autistic? Yep, they can. Do tics, OCD, mood or anxiety disorders make someone look more autistic than they would without these? Yep, to the extent most co-morbids go undiagnosed and presumed ‘part of the autism’, especially in those without verbal or typed communication.

Take aphasia, there are many autistic adults just now gaining typed speech whose aphasia was presumed ‘their autism’ (particularly if they also had movement disorders or tics) who previously lived down to low expectations because of this. Do they proudly identify with their aphasia? A lot of them don’t and feel imprisoned by it.

So what makes OCPD, Schizoid Personality Disorder, Sensory Integration Dysfunctions or Dyspraxia so much SEXIER as ‘the autism’? Or does it come down to the spokesperson and whose name gets out there most pervasively? Then isn’t that about PR?

What amounts to autism in one person with no significant health disorders is different to what amounts to it in one who does…. do I ALSO have aspects of my autism that are ego-syntonic? sure… but I call those my personality … that happens to be an ‘autistic’ one… or dyslexia/dyspraxia associated neuro integration differences… I don’t feel any need to claim those are ‘autism’ because many non-spectrum humans have elements of those too…. but sure, if you want to call them my autism then I have parts of my autism that are ego-syntonic and parts that are ego-dystonic.

Do I confuse PTSD/DID with my autism… no… do I feel those with autism may have predisposition to dissociation – yes – and hence be more susceptible to dissociative disorders including PTSD, derealisation, depersonalisation.

Do I think EVERYTHING I am is due to my autism? That is ludicrous… I have curly hair, I like metallic blue, I enjoy nature, I’m an artist… so what? Those are about being a HUMAN, I’m a human. Does my art often express Exposure Anxiety, Agnosias, an autistic social-emotional reality? Sure. Am I so much more artistic because of my autism? Because of agnosias, yes, but we’re really being archaic in fixation with the autism word.

Sure, befriend the ‘Autism’ word, work with what’s crippling (like Exposure Anxiety), advocate for what you love and identify with, celebrate difference… but don’t paint autism with one brush… autism is not Temple-colored, its not Jim-colored, its not Donna-colored… autism is the unique color produced with each individual autism fruit salad in interaction with that person’s personhood and environment.

Don’t glorify health disorders, don’t be reductionist in claiming everything is one’s autism… that’s where I’m at… what I stand for – see the HUMAN BEING, no matter what condition/s they have.

There will always be those who are in love with the sexiness of their label
they will be threatened by those for whom its a health related disorder

Let those who need label related pride dissect the label, take the sexy parts, wrap themselves in those like a cosy blanket and seek to cast out the rest. But in the end someone will be a relic. I think we exited the behavioral model. Then we entered the (sexy) neuro differences model and we were fed all manner of new stereotypes that didn’t pan out, discovered that neuro differences were not unique to the autism population and those desperate enough painted themselves as Einsteins or X-Men but we got over it. Then we had a labeling frenzy until all services were overburdened and anyone with a label got the same funding. Now we’re entering a medical model which should see more equitable funding going not to labels but based on needs. I have no problem with that. I have no problem with society ‘growing up’.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Who IS their autism?

If we have autistic pride, if OCPD (Obsessive Compulsive PERSONALITY DISORDER) is commonly part of Asperger’s, is it valid to have “Personality Disorder pride” (PD Pride)? Would we accept that?…. pride in having Antisocial, Narcissistic, Sadistic personality disorders but to name a few….and how many of us would feel safe moving in THOSE pride circles?

CarolAnn Edscorn
There are several types of pride. Maybe we need to think of an original framework? Autistic hope, Autistic joy? Autistic belonging! Oh yep.

Esther Fillon Baker
Personally, I would not feel safe moving into that arena because the less labels the better. I am not ashamed of my son’s autism, and today and I can say that I truly accept him the way that he is. I mean everyone in society could be labeled with something or another.

Jaymz Dream-boating Dallymore
As one who has unfortunately recently been on the receiving end of an obsessive fantasist lady (4 the first time i hasten to add). I’d have 2 say that i’d approach such pride events with a degree of caution if in fact they existed. But ocd is different 2 me as it is less likely 2 impact on others. I recovered from chronic ocd anyway and now think my obsessions r more productive and in line with boundless enthusiasm but i feel in control of it. Whereas as a teenager it controlled me.

Anthony Julian
obsessions aren’t necessarily a bad thing… I think you’ll find there are also Aspies who are extremely passionate about their interests, career, etc. but don’t necessarily fit OCPD Jaymz, OCD and OCPD are completely different.
I really think it depends on what particular personality disorder you’re talking about. Anthony Julian I think likening Asperger’s to OCPD is another “one size fits all” example… I’d say it’s more likely that a certain percentage of Aspies fit OCPD – not all.

Rita Correia
Narcisistic don’t need it. Anti-social don’t need it. Sadistic don’t need it.
Depressed could use it, Co-dependent too. Histrionics would love it.

Libby Board
Strange Anthony I was up all night looking at research articles about the differences between Aspie obsessions and anxiety driven obsessions and how you would distinguish between the two in the Autistic population. I know some examples where a child’s anxiety obsession behaviour (which I believe were caused by the traumatic family situation at the time) were overlooked because of the child’s diagnosis of autism…

Olivia Connolly
I’d say no as people with PD’s have maladaptive ways of exploiting people whereas alot of peeps on the spectrum are aware of social limitations and either embrace being socially awkward, try to overcome it or have very little social awkward…ness if at all. People with PD’s are unaware of hurting others or simply dont care or are doing it to survive. I’m no expert but I think people on the spectrum have a self awareness and awareness of others that Peeps with PD’s don’t have. I think many narcissists are proud of their exploits of others, as are anti socials but borderlines exploit others in a need to get close or push away to protect themselves from being too close.

Caitlin Browning
As Ant said, I’m not sure pride (regarding OCPD) is the right word… I’m most probably OCPD (but not OCD), and to me it’s more negative than positive – I spent more time actively trying to counter the traits and symptoms of OCPD I display rather than embracing them. manipulation and exploitation are very specific traits and limited only to very specific personality disorders, not all personality disorders.

Olivia Connolly
Manipulation is common to NPD, Borderlines and anti social, but not typical of histrionics and a few others!

Anthony Julian
Caitlin, seeing OCPD as a good thing is all a matter of perspective… of course you don’t see it as a good thing, because being OCPD, you’re one of the world’s greatest perfectionists… and nobody is perfect! haha (also, I think all Aspie…s in general are “professional worriers!!”) But perfectionism can be a really good trait to have if used the right way… the obsessive-compulsive personality is an extreme of the conscientious personality – this is why I say that I know you will be successful in whatever you do.

Arlene Taylor
Donna – I guess I would see the difference as that autistic pride is celebrating a neurological difference and neurological diversity. ASDs are not mental illnesses but PDs apparently are. I would be concerned about people celebrating the… maladaptive behaviours of most PDs (borderline, narcissistic, histrionic, antisocial)… Also I think the origins of Autistic pride are partly based in people standing up and saying ‘just because we’re different doesn’t mean it’s bad and we can’t achieve’… Whereas a lot of people with personality disorders have behaviours that are considered harmful/unhelpful in the community (not just experiencing difficulties or being different or doing things a different way). No one has ever said people with PDs in genenral aren’t going to achieve, but that has been said about autistic people in the past. So I am all for autistic pride. But I would never celebrate say “depressive pride” or “antisocial pride” or “schizophrenic/bipolar pride”. But that’s just my thoughts on it.

Vince Ragetti
I think the ones with PDs often tend to be of the more militant type who expect the world to conform to them, rather than vice-versa. Others with AS and without any other personality disorders just try to get on with their lives the best they can, or they try to raise awareness of AS in a positive way, such as what you seek to do (and you do so admirably, Donna!) Also, if asked to explain ‘the AS’, I find that those with co-existing PDs often confuse the two, and are more likely to use ‘the AS’ as an excuse for their behaviours. I may be long-term unemployed, but it certainly isn’t through a lack of trying. I still find it ironic that I never have trouble securing voluntary work!! Says something, doesn’t it!!

Donna Williams
One of the things that really surprised me was the degree to which those with AS and PDs are more likely to be long term unemployed when their PDs are presumed to be ‘the AS’. Those who ONLY had the AS related information processing differences tended to take AS in their stride and try and put their potential to its best use.

Dawn Marie Comer
I’ve been wrestling with this issue concerning a family member who is (undiagnosed but clearly) AS and Paranoid Personality Disorder. Seth, you frame it perfectly–how to know where AS ends and PD begins. But it has been helpful to try to make that distinction at least–not all of this person’s difficulties are AS. And as this individual is rather militant and expecting the world to conform to him, it helps me to be able to say to myself, “This isn’t simply AS,” even while he tries to justify some of the worst parts of his actions as simply, “Asperger moments.”

Seth Kneller
Not that I am aware of having a personality disorder, but how would I know where my AS ended and my PD began?! To me AS is my life and I don’t know any different. Sometimes I feel as though the world should conform to me, mostly when I am tired and pissed off though. I guess I have to find some way to stop losing jobs through getting like this and then just wanting to drop out of life, which helps for a bit but then I realise I have no job and no money.

Vince Ragetti
Seth, unless you were solely educated in special ed schools, you can’t really say that you don’t know any other way. You would’ve been exposed to NT people, and people that see things differently. The question I pose to you is how much do you let your AS or PD define who you are. There are plenty of influences around, and people with AS have minds like sponges. It is possible to absorb the influences around you and go with the ones that are most beneficial for you and it makes coping with living in the everyday world a heck of a lot easier.

Gina Muollo
That’s a good point, Vince. All three of my kids are in mixed disability special ed schools. My oldest is autistic, the middle one is AS and bipolar, and the youngest is bipolar. The good thing about it is that, even though everyone there has DD, MR and/or mental health issues, no-one sticks out as being WAY different than anyone else, like they would in regular ed. I think this teaches them to be extremely less ignorant and extremely more tolerant of other people’s “problems”. I suppose the bad part of it would be that the “real world” doesn’t work that way. But wouldn’t it be great if it did?

Eleanor C. Ayakura
Celebrating difference doesn’t mean having an excuse for any random thing we can be doing.

Cat Taylor
‎Often I hear Bill Gates and Einstein being mentioned as “one of them” and used as poster boys. there are stigmas attached to most disorders but with autism there are positives. I’ve also heard x-men mentioned and even heard “we’re an evolutionary mutation“. clearly such people would fit better under a narcissist label but the problem with that is most know that someone with narcissism may falsely believe they are superior but if hey say they have ASD some may think they are genuinely superior and have special abilities/gifts. nothing wrong with wanting to be special but not in order to dominate others. perhaps there needs to be more concentration on self esteem and being real and based on the *self* rather than being based on belonging to a certain group.

Eleanor C. Ayakura
I think that Aspies are sometimes misdiagnosed with Schizoid personality disorder but it is not the same.

Chelsea Reinschmidt
I personally don’t like identifying with a label that is negative or perjorative. PDs are often stigmatized and so it seems identifying with that label and being proud of it would be difficult. It seems it may contribute to allowing yourself to be destructive since many of these PDs are destructive. (but not all of them of course). In the DSM you cannot be diagnosed with a PD if you have a PDD diagnosis. To me that seems like a good thing. I don’t believe in comorbid PD in someone with a PDD personally. Obviously people are misdiagnosed with a PDD sometimes but I think it happens less frequently than being misdiagnosed with a PD. Just my 2 cents on the topic.

Though as I stated earlier I don’t really believe all of these PDs are actually PDs. And while they are diagnosed in adulthood only they begin very early in life it seems. So seems suspiciously of a developmental nature to me. There are “mad pride” circles though I think that while having a different brain is ok, identifying with a label and believing that is who you are as a person is a bad thing and probably especially for someone with a PD.

Donna Williams
Hi Chelsea, no, you CAN be dx’d with both, I know so because I’ve worked with people formally dx’d with both. What the DSM means is that PDDs can be CONFUSED with PDs and vice versa. However, most diagnosticians in the last 5 years are not so ignorant as to believe that just because one has a PDD one can’t be blond, depressed, have Tourette’s or a PD. I’ve known just as many Aspie’s with prior dx of PDs as those with co-morbid dx of PDs. When they were dx’s with PDs before their AS, some were told their PD dx was a misdiagnosis, others were told they had both. When they were dx’d with a PD after their dx with AS they were usually told they had both, though I’ve known cases where the diagnostician felt their PD had come to outweigh their AS… that both were present but the PD was the greater issue/disability.

Chelsea Reinschmidt
In the US, they give you personality disorder tests to rule out PD before diagnosing AS. Just because diagnosticians diagnose both does not mean that it is valid. In the DSM you technically cannot be diagnosed with both for a reason. There are obviously doctors who will but it is not a valid construct because most with AS will fit criteria for both. And obviously we need to understand what is causing the symptoms. I understand you believe it is valid. I disagree. I guess we will just agree to disagree which is ok.

Donna Williams
I guess then you’d like to tell the forensic psychiatrists dx’ing those with both that they are doing something professionally impossible. So given what you’re saying, how do you reconcile that many Aspies fit OCPD, AvPD, Schizoid PD? Would you just say ‘oh that’s because its part of AS’? In this DSMIV for AS it does not state that AS can’t co-occur with PDs… it does say that Schizophrenia and other PDDs (Pervasive Developmental Disorders) have to be ruled out.

Chelsea Reinschmidt
interesting….I will have to get mine out and look that up again. I could have sworn that there could not be comorbid dx….maybe it is because I have HFA and not AS so for Autistic Disorder (which is what I have) you can’t have a comorbid PD. Sorry my mistake!

Donna Williams
just checked the DSMIV for autism too… no mention that autism can’t co-occur with Personality Disorders… again, just that if one fits another PDD (Pervasive Developmental Disorder) ie Rett’s or Disintegrative Disorder – then one wouldn’t be dx’d with autism.

Gina Muollo
In the US, if you are seeing a psychiatrist/counselor, you have to be officially diagnosed with a comorbid condition, even if it IS something directly associated with PDD such as anxiety disorder. The reason for this is purely bureaucratic because, even tho PDD is in the DSM4, it is not considered a billable mental health disorder. p.s. I’m not saying a true comorbid can’t exist, just that it doesn’t technically have to… I’m not saying a true comorbid can’t exist, just that it doesn’t technically have to…

Chelsea Reinschmidt
ah ok so for Schizoid PD it specifically states it cannot co occur with a PDD. Also says that for schizotypal

Donna Williams
AS would certainly have to be DISTINGUISHED from Schizoid and Schizotypal but that’s not the same as the two being unable to co-occur… for example, all that Schizoid is is a Solitary personality trait under extreme chronic stress, pushed …to disorder proportions, all that Schizotypal is is the Idiosyncratic personality trait under extreme chronic stress pushed to disorder proportions… and there is nothing that says those with any personality trait are excluded from having developmental disabilities. It’s like saying that people who have solitary personalities or idiosyncratic personalities couldn’t have AS. So do please send me the link you’re referring to. Interesting psychiatric article here… cites that Schizoid and Schizotypal PDs commonly co occur in AS:

Schizoid personality in childhood (DSM-IV)
Schizoid personality in childhood is defined by solitariness, lack of empathy, emotional detachment, increased sensitivity, at times paranoid ideation, and single-minded pursuit of special interests…. All these features are seen in Asperger syndrome, and comorbid issues (depression or behaviour problems in particular) are likewise similar for both conditions. On the basis of evidence presented in Wolff’s (1998) discussion of schizoid personality in childhood, we have concluded that there is significant overlap between schizoid personality in childhood and Asperger syndrome.

Schizotypal personality disorder (DSM–IV)
The DSM–IV diagnosis of schizotypal personality disorder depends on odd beliefs or magical thinking, bizarre fantasies or preoccupations, odd thinking and speech, odd, eccentric or peculiar behaviour… and appearance, lack of close friends and social anxiety. All of these criteria can also occur in Asperger syndrome, and Wolff (1998) regards “Asperger syndrome and schizoid/schizotypal disorders as interchangeable terms that identify roughly the same group of children”. The conditions do differ in at least three important respects. First, there appears to be an increased rate of develop-ment of schizophrenia in schizotypal personality disorder. Second, schizotypal personality disorder and schizophrenia co-occur in families and appear genetically related. Third, prospective research of children at high risk of schizophrenia (Erlenmeyer-Kimling et al, 2000) suggests that some individuals later diagnosed with schizotypal personality disorder developed without impairments in reciprocal social interaction and communication.

Chelsea Reinschmidt
What you are saying about AS and traits makes sense to me though. I was always under the impression that you could not attribute traits to both dx. Maybe I was misinformed.

Carmel Anne Jones
My parents suspected I had classic autism as a baby because I was so fixated on certain things and seemed quite locked up within myself. Pictures of me at the time show that I never really looked at the camera. But once I spoke at an early age, they put any issues down to my being “highly strung” or “shy” or “a bit slow”.

Nora Watts
ASD is a mixed bag but some of the bits are excellent. I can’t see personality disorders in the same light. There doesn’t seem to be an up side. How to make the ASD a mostly positive thing.. that is my thinking now. I find that parents can adjust to a ASD dx for a child but parents seldom adjust to a “your kid is f..ed up” dx. We can use all sorts of medical dxes but the meaning is clear.

Isabelle Monod
to come back to the original question, PRIDE : this is a word i never use because of it’s negative feeling ! defined as :an exaggerated positive evaluation of oneself, often based on a devaluation of others. It resuls in a king of attacheme…nt to oneself and aversion to others……….now, seen this way, self esteem is very different, & is necessary for everyone to progress via the understanding of one own self !like Chelsea says i’m who i’m ! this is how balanced it can be !

Jennifer St. Jude
I personally can’t imagine feeling proud of anything that causes me such grief. However letting go of the shame around it would be nice. While struggling with AS I also have issues around severe trauma. Letting go of shame is my goal… for it all. Hmmmm… Maybe I’m proud to be a survivor of it all.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Personality Disorder Pride?

Lorri McCallum
LOL! I think that applies to the teaching profession too! We all need to realise that every class has as many “levels” as it has members…and teach accordingly!!! I actually think that long term it is the easier option, even if it looks “too hard” in the beginning!

Christianne Palmer
Ah yes. I have seen ABA work very well and I have seen it not work and I have seen it be really quite damaging. And that’s just in my own son! (different times). Actually the hardest thing of all was saying ‘this is damaging him’ and stopping because I felt as if I had to stand alone. In reality I didn’t – I have met quite a few families who have made the same decision but at the time it felt as if we were the only ones. anyway a few years later life is good. I take him surfing and camping instead

Alyson Bradley AsPlanet
I love this line “sometimes its about growing up treated more as a case/condition than a person”. We are not numbers but real people, scary My take as an AS adult, we attach to like minded, as a child with parents like most daughters I was more attached to my dad. I have found autism and other children focus on others things when not coping, stressed, I know I do and have seen other autistic children do the same, while at the time the object may seem more important to them, I am sure the person is. Maybe we attach ourselves to those that do not try and get us to conform to what may never work for us as individuals.

Kristina Mendelis
question. in your experience did majority of ASD attach to just mother, just father or did they equaly attach to both. there was a research of ‘bulldog children’, these were second world war orphans. yet they were not ASD, these children did not attach to adults, they formed a pack and attached only to each other. what is your take on this?

Donna Williams
Hi Kristina, my take is that many faceblind kids with autism and those with Simultagnosia (who have visual perceptual fragmentation) attach not to their carers but a favorite object. It is commonly a rug with patterns, a light, some will attach to a piece of colored plastic. I attached to the patterned wallpaper, the light bulb, a comb, a green plastic ball, then to the mirror reflection. All were important and helpful, especially mirrors. I meet other kids attached to no humans or objects and my job is at least to first build some attachment to objects as an eventual bridge to humans. You may find this link about attachment interesting.

Flora Foster
Matt bonded with his blanket. Ryan bonded with toy cars.

Marie Richardson
Faceblindness explains a lot about me. I’ve never been a bond-er with people very well.

Valerie Bray-Arias
Me. all three of them did. Probably because I never put them down. My mother-in-law was always harping on me that my babies would be arm spoilt. But it worked out for the best. They are all very loving and amazing. And I really feel that holding them all the time was very beneficial.

Marie Richardson
Valerie, that’s actually how I was able to bond with my own kids. Well, that and formula-feeding.

Donna Williams
Hi Valerie, for kids with Dependent Personality Disorder (DPD) they fear independence as it means in their minds that the carer will get a life/identity which they equate with abandonment. The problem is when they are around 3, 5, 7 they are still trying to be 6 mths old and this is commonly confused with their ‘autism’. The mother is by then exhausted, confused. She knows the clinging is control but is afraid to dare set boundaries or protect her own. As she becomes a tool and loses her own social connections, identity, she then feels entrapped and caught between guilt, fear of external judgment, frustration, despair, sometimes martyrdom… all an overwhelming mix. As she pandered to DPD the DPD gets even more entrenched, especially as the child gets older. Ultimately any relationship she has with a partner or friends generally breaks down as the child with DPD tolerates no threat at all to their control over their carer, so essentially tries to engulf the parent and ensure they can’t speak to others, interact with them etc…. nothing that will risk their complete monopoly over them. DPD is a hungry beast, and involves attachment disorder, but because it is SOOOO clingy, most people don’t realise that the personality disorder of DPD involves a form of attachment disorder.

Sarah Justice
He has never had a bond with an object though had a major OBSESSION with trains. My son has currently made a bond with a deaf horse. Even though he knows she cant hear him he will stand in front of her stall til he can get her attention.

Marita Beard
Her blankie.

Marie Davis
I bonded with my blankie. I didn’t care if my parents left me anywhere.

Susan Mann
I bonded with nothing. Well, may be the wallpaper.

Rukmiati Stylianopoulos
Our son first attached to my breast, then my hair, and finally me as his mother. His Dad used to feel sad at their lack of a relationship but now that our son’s a teenager he has developed a close bond with his Dad and also older brother.

CarolAnn Edscorn
I fell in love with sparkies in window light. And sparkles in water.

Gabrielle Hogg
i first bonded with a soft toy that my nanna made me, it was a monkey and i had to take it with me wherever i went for the first 8 yrs of my life!

Reswobian Dreaming
I hate the One-size-fits-all thing. Going through school I met so many teachers that just want to do that because it makes their lives easier. It is pretty hard to get recognised as an individual. Another thing I remember at school is that early in my childhood I did not want to do the physical education routines or the join in dances. Besides the fact that I moved in a strange way which was the cause of a lot of bullying but when I was moving as the teachers told me to do I felt like it was not me. This person was telling me to make movements that were not part of being me. I felt humiliated. I’ve been told that I’m pretty high functioning in regards to Asperger’s Disorder. I remember being more attached to my Dad when I was very little because Mum was the one who gave out most of the punishment and was forcing me into hugs. I was scared of her. It was only when I reached puberty that I could relate better to my Mum on an intellectual and emotional level, that I could have a deeper level of sympathy for her. After she died I found out how much of a selfish person my Dad is and my relationship with him has become non-existent.

Sondra Williams
trees, rocks, sky

Devlyn Rhys Young
rocks, sparklies, tiny things (like from cracker jacks, gumball machines)

Christianne Palmer
Me. But he has always had a thing about straight lines – when he was little it was things like stairs. Now it is shutters – he adores shutters.

Ray Ray Taylor
I use to bond with paper, tons of it, all over my room. I now have a stuffed hippo I take everywhere.

Tanya Longbottom
Daughter – could not go anywhere without her little pink ribbon day teddy. She too was and still is fascinated with light sparkles. Also seeing her reflection in anything. Oh loves water! My son didnt really form a bond with anything in particular until he got older. Is very into cars, computers, anything he can make go – very mechanical.

Eil Vocal
A white bear with a great big face! Known as Snowy Bear, he is now a dirty gray.

Utami Purbasari
My autistic kid bonded with a plastic bottle

Isabelle Monod
first bonded with the trees as a baby, ( staying in Australia ), then back in France bounded with the ceiling lights, and then plastic water bottles, keys especially car keys, anything made out of rubber ( my cats have the same addiction ).

Kerrie Jane Berroyer
his little pale blue cat from a baby, still kisses it with so much love to this day…in fact he loves all soft things blankets, teddies those with big eyes and noses too…….as long as they feel great

Paul Isaacs
Well the first object I connected with was toilets. I had to flush them and watch the water go down the pan. I used to do this if I went around someones house or if we went out shopping.

Ruth Elaine Hane
I bonded with sunlight shining through lace curtains. Later shiny objects, coins, gum wrappers, rhinestones, dust motes that looked like sparkling stars. I stimmed on flushing toilets, turning lights on and off, opening and closing doors and listening to the sound of the latch and squeak of the hinges, also ringing other people’s door chimes. I liked to open and close drawers and look into snow globes, for hours.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Autism and Attachment

Christine Evans
Hi Donna, my 28yr old daughter is seeing a psychiatrist to try and find out what is wrong with her. he thinks she has Disorganised Syndrome, i think she is on the spectrum. Have you heard of this syndrome?

Donna Williams
It seems there’s still controversy as to whether it is considered a form of Schizophrenia (autism was also once called Childhood Schizophrenia and some kinds of Bipolar and DID was generally thought to be Schizophrenia and neither now are) or separate. Anyway, seems Disorganised Syndrome is very much like a mixture of Asperger’s, ADHD and some elements of mental disorganisation in Bipolar… wild combo. Here’s a link and the Abstract from it:

“Simple schizophrenia is a sometimes controversial diagnosis. Here we review the concept with particular reference to its history in diagnostic systems. Using an illustrative real case of a 25-year-old man, we show that there is a need to retain this diagnostic category, which may fit better within proposed dimensional (psychomotor poverty, disorganisation and reality distortion) rather than categorical classifications of schizophrenia. Symptoms of the disorder may be better revealed by functional assessment than by relying on descriptive psychopathology.”

I have CERTAINLY encountered those with Aspergers who fit the description in this case. Wild stuff… amazing what would happen in the Asperger’s population, particularly the Autistic Pride movement if AS was clearly distinguished from this Disorganised Syndrome… essentially we’d find there may not be ‘high and low’ functioning Aspies but those with and without Disorganised Syndrome. Now there’s a controversy! And given that Tony Attwood’s once quoted stats (saw it on the screen at a lecture) were that around 20% of those with AS develop co-morbid Schizophrenia (and keep in mind that probably just means ‘psychosis’) then we should wonder if this is sometimes Disorganised Syndrome as a co-morbid with AS.
Also, the disorganisation described I’ve also seen in salicylate intolerant people (those with impaired detox function) on high salicylate intake (and those swallowing fluoride toothpaste) so without the diagnostician covering that base these folks may never double check that basis for mental disorganisation.

Christine Evans
That is so interesting. thank you so much Donna. im getting fed up with these proffessionals who can’t give my daughter the help she needs, just give her a label and tablets and leave her to it! I knew I’d get more info from you! thank you x

Donna Williams
also keep in mind that gluten intolerance (not always Coeliac) will also cause mental confusion for some… 70% of schizophrenic patients in one study improved once they went GF… Casein (cow’s milk) effects me like LSD… so no mental organisation there either. worth a thought… plus Simultagnosia (visual perceptual fragmentation) is essentially going to present as context blindness… so could easily present as part of high level disorganisation … another idea is a 30 day trial on 2000mg L-Glutamine… an amino acid used to improve info processing and widely used in the autism and schizophrenic communities. Ya never know.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Where Asperger’s meets Schizophrenia?

Autistic children dissociate more than most due to chronic stress and information overload. This does not mean they develop DID. It does mean they would be more at risk of dissociative disorders along the spectrum of dissociative disorders such as Derealisation, Depersonalisation and also PTSD. DID is one of the most severe Dissociative Disorders. Hence only those who have experienced severe ongoing trauma usually would develop DID. It is believed that 25% of chronically abused children develop it and that there are predispositions toward dissociation.

Cheryl Law
thank you Yes my son used to do it all the time up to about the age of 8 to 10. he is 13 now

Anita Cameron
Thanks! I never knew that PTSD was on that spectrum of dissociative disorders. I have PTSD from childhood abuse.

Caz Lane
There was a film shown in 3 parts over here years ago called Sybil based on a real case. She had 26 different personalities as a result of horrific abuse at the hands of her own mother throughout her childhood. I highly recommend it but have some kleenex handy! There is also the book ‘When Rabbit Howls’ which is essential reading if you want to gain an insight into the condition-the lady who wrote it had no less than 96 personalities at time of writing the book!

Donna Williams
Yes, the one with 96 alters would have had Polyfragmented DID… which is more complex and further along the spectrum of dissociative disorders than DID and DID is further along the spectrum than DD Nos, which is further along than PTSD. Sybil, by contrast had DID, or at least today she’d be dx’d with DID. In real life, the real Sybil in fact passed for any other person you might meet. The rest was Hollywood.
http://www.youtube.com/watch?v=jhiBq8QqetY
http://www.youtube.com/watch?v=S4RfbTRqh54&feature=related

Tara, in United States of Tara, is an example of a simple case of DID… 6 alters (the minimum for dx is 3, the average is 10)… one form of abuse (sexual) over a limited time versus those dealing with multiple forms of abuse and multiple …abusers over 0-15 years. Tara and Sybil are also examples of people with DID who did not have developmental disabilities. There are those dx’d with autism who have been dx’d with DID. DID in someone with autism will present differently as it might in someone without developmental disabilities.

Alyson Bradley AsPlanet
If someone had say PTSD and/or DID etc.. I presume those differences may not always apply, as they recover from trauma etc… or will in part some aspects stay with them or does it depend on varied factors. I think I am answering myself

Donna Williams
Hi Alyson, people do recover fairly well from some dissociative disorders along the SPECTRUM of dissociative disorders… so people recover from derealisation, depersonalisation, PTSD takes longer, then DD Nos may take longer, DID takes around 4 years of therapy to recover depending on the severity/complexity, Polyfragmented DID is the most severe along the spectrum of dissociative disorders.

People can dissociate without it having developed into a dissociative disorder… perhaps just as people can be autistic – a developmental ‘disorder’ along a SPECTRUM of developmental ‘disorders’ without it being at a level where its a disorder.

DID used to be called MPD and was mistakenly presumed to be a personality disorder but its a dissociative disorder along a spectrum of dissociative disorders. BPD (a personality disorder) is commonly mistaken for DID. Those with BPD are more prone to dissociation than those with other personality disorders but most with BPD do not have DID and most with DID in fact don’t have BPD, though there are some with both – confusing!

Most people with DID do not appear particularly psychotic, nor are they dangerous. Those with both DID and BPD are more likely to be self injurious than those with DID who do not also have BPD. So the stereotypes of self harm, violence etc don’t apply to all with DID. Interestingly, in this study BPD has only a 53% crossover with DID but AvPD has a 76% crossover and Self Defeating PD (the extreme of the self sacrificing personality trait) has a 68% crossover…. so shy self sacrificers may be more prone to DID than Borderlines. Could this mean that those on the autism spectrum who tend towards AvPD and dissociation, if subjected to ongoing trauma, could have a higher incidence of dissociative disorders including PTSD, DDnos and if the trauma was severe and ongoing enough, DID?

Carmel Anne Jones
It seems hard to believe somebody would have 96 different personalities…

Donna Williams
Carmel, it does occur in polyfragmented DID… for example, to give you some idea of the process without being too graphic, an alter develops when a child faces unbearable loss, neglect, trauma including emotional, physical, sexual abuse, w…itnessing domestic violence, witnessing animals being tortured, imprisonment etc. Some experience one form, chronically, others for example living with a mentally ill, substance abusing psychopathic carer, may experience all levels. I was not polyfragmented… as best I can tell I have 8 + 3 animal alters – so 11 alters. But when I was about 12 one of my alters began to create ‘Donna Now’… she kept creating new ones with every new abuse… this was the start of polyfragmented DID. We didn’t progress into that as those with 100 or 1000 selves, but can you imagine daily abuse and the only way you can stop from walking in front of a car to end it is to dissociate each day or week into a new, untainted alter… that’s how it happens. But without those who experienced these processes talking about it, DID and Polyfragmented DID will seem just too bizarre for some to get to grips with.

Alyson Bradley AsPlanet
I do have BPD (type1) and probably had PTSD, I did detach myself from situations as a child to cope, memory wise there are chunks of my life I seem to of lost, but not sure I had DID, I would act differently depending on different people, a…ll to confusing for me, I just did a quick test and seem to be high on so many things, maybe crazier than I thought but all good because happy with who I am these days, and no longer impact on others mostly, well like everyone, there will always be the odd person. But many things on the basic test under personality disorder with a whole sub list with that seem to relate to bipolar and aspergers, I some how feel there is an interconnect with many disorders, or maybe the labels get changed over time!

Donna Williams
Those with Borderline generally have had more experience of derealisation and depersonalisation (parts of the spectrum of dissociative disorders) than most people might. It would also mean you probably had PTSD which is how someone with the Mercurial trait might escalate into Borderline (the personality disorder associated with the Mercurial trait). Those with Borderline do experience amnesic episodes just like those with DID. One of the main differences is that in Borderline the person takes on roles, in DID the person has dissociated into alters. As you said you would ACT differently… where with DID you ARE a different person, you’re not acting. Also with Borderline these are roles, they’re more 2D, archetypal, stereotypes. With DID these are more complex, whole identities with their own full histories, perspectives, tastes etc. Also the emotional instability in Borderline can be more extreme than in those with just DID even though the switching and fragmentation would be more extreme in DID, Borderline and Rapid Cycling Bipolar are hard to tell apart, just as DID and Bipolar are hard to tell apart (and many kids with autism are getting dx’d with co-morbid bipolar). Having AS would have meant your chronic anxiety levels would have been higher than most children due to information processing issues.

Alyson Bradley AsPlanet
To clarify for those that do not know I have Bipolar (type 1) apart from other diagnosis and who knows what else, but guess we all have many differences. Anyway my head is spinning, maybe I will sleep for a change, good night everyone

Donna Williams
Ah… THAT BPD, Bipolar, not Borderline… sorry… well I went for my medication review for bipolar and that’s when I was dx’d with DID!

Billie Rain
I really liked the way “Sybil” showed her internal world. there’s a great book called “united we stand” by eliana gil that explains DID in a simple and direct way. I’m polyfragmented, and the experiences I had as a child were pretty horrific.
thanks for speaking out, Donna.

Donna Williams
Hi Billie, it was REALLY hard for me this week facing up to having 3 animal alters. Polly started out knowing of 3 alters – her, Willie, Carol, though she thought she was the Core Self (until I arrived after 44 years). By the time we were dx’d with DID in 2010, we knew of 4 but found it hard to slowly face up to the other 4, arriving at 8. Accepting the 3 animals made 11… but facing having animal alters was so scary, even though we knew we’d been a rabbit at age 9, a cat all our lives, also been a bear. Even scarier was remembering when one of us started creating all the ‘Donna Nows’ and the level of things to reach the point this was the only way to not kill ourselves… the memories were so hard to live with, the reality of it all so overwhelming, Marnie desperately wanted to kill the body to rid all the memories, to stop all the PTSD, flashbacks, to never have to go back, to get all the horror out, no more nightmares or shaking, no more entrapment in silence (especially with communication disorders). I’m glad I didn’t become polyfragmented… it’d have been even messier for me re therapy… 11 is hard enough to work with! But I’m glad I had a window to understand the corner I almost turned which divides DID from polyfragmented DID.

One thing that really distresses me in the autism world is that the horrors I lived with re abuse and DID, once in the autism world I was told not to talk about alters, I was encouraged to talk of them as ‘characters’, and in public speaking I was encouraged to avoid mention of any of ‘that stuff’…. its like being silenced when I was already severely abused as someone without functional speech until 9-11 and even then only litanies until 13, then combinations of echolalia, stored speech, Donna-speak, Schizotypal poetry-speak, so until I went to university (and got academia-speak) I couldn’t make myself easily understood… so you can imagine how traumatising and confusing it was to suddenly find people being kind to me but subtly controlling my voice, wanting me to remain silent about a condition that effected me as much as my autism, its like being ripped in half, a world that accepts half of you, finds the other half filthy, contaminating, unmentionable. I’m allowed to talk about primary immune deficiencies (even those I was made to shut up by those who didn’t want to hear THAT side of autism because it didn’t apply to ALL) but not about DID. Yet many with autism had experienced other dissociative disorders – derealisation, depersonalisation, PTSD, even DD Nos, but it was just way too taboo.

Maria ‘Ria’ Strong
And probably in the DID world encouraged not to talk about autism.
Had a friend who used to teach at TAFE. She invited people from mental health consumer org in to guest lecture. They started “we may have had mental health problems, but we’re not stupid”. Next week, she brought in people from self-advocacy org for (mostly) people with an intellectual disability. They started “we might be slow learners, but we’re not crazy”. A few years after that, was in a workshop at an ABI/TBI conference. Question, what do you want people to know about ABI/TBI?. Immediate and more or less unanimous answer, “we’re not stupid, we’re not crazy”. Sigh.

Donna Williams
oh Ria, that’s hilarious, and tragic. So far I haven’t had the DID world detest me for having autism though its funny, those who aren’t autistic sometimes have EMOTIONALLY autistic or Selectively Mute withdrawn alters they refer to as ‘aut…istic’. On the internet there’s haters who pity me for being mentally ill (go figure) and portray me as having only one alter who was ever autistic… er… well in fact all my alters would have been dx’d on the autism spectrum… just some more likely with PDD Nos, some with ‘moderate autism’, some as ‘severely autistic’, some with ‘atypical autism’ and Willie (once she had functional speech by age 11 and litanies by 13 as having Aspergers…. as for the animal alters… well…

Love Sanchez-Suarez
for me, the topic of DID does scare me, i have to admit, although i don’t know you personally, i felt like i knew you a little through your music as one autistic person and now to find out you are really several persons, it was a bit discon…certing. also i don’t know what to think of it, whether it really is a coping mechanism as mainstream psychiatry says, or all those other people are really there like that other system (i mentioned in previous post comments) says. i mean i guess if things are going along and a person is living with themselves ok, maybe it doesn’t matter? Also yeah there is that “we’re autistic, not crazy” feeling. but what about being both?! a lot of the way autistics get treated could make anybody crazy. also there are all those other life experiences that may not have to do with who we are, but just things that could happen to anybody… in fact i am sort of trying to get a dx and the shrink wondered if i was really Asperger, or just had been raised by crazy people (not her words, of course, but general idea) and i said, why not both?! she didn’t know a lot of my social difficulties and processing differences, because she hadn’t seen them yet.

Donna Williams
Hi Love, yes, it is disconcerting to some Singletons when they realise someone is a multiple… it is… well which ONE did I know. So if you knew me through Nobody Nowhere, you’ve met Willie, met Carol and the others would have been in there in the writing or in moments of the writing and primarily I was the typist, the conduit, in a sense ‘channeling’ them as they told what they remembered as they remembered it. Remember how the styles shift suddenly all over the place in Nobody Nowhere? Some parts quite clinical, others just silly, others meandering, others sudden short sharp shocks….. well these were the styles and memories of different alters… split off parts of the Core Self, of me, except I was still in a dissociated, traumatised, sort of sleep walking state.

Then with the music, you’d have met several… Carol was the singer on the first two albums, but there are several of us on the Broken Biscuit album. Several of us write music and lyrics… some (like Anne) write poetry which others have converted. Some write classical music (like Willie) which others have converted into songs. Carol writes ballads like Beautiful Behavioural Mutations, Da writes surrealist silliness like All of You, Marnie probably wrote All Be Happy. Willie does the lectures, Da the characterisations during the lectures. Addie, Willie and Da take questions. Addie and Anne both run the book stall afterwards. So you have met most of us. All people, even Singletons, are rarely a fully cohesive whole. That’s why DID is a spectrum. Then there is the Core Self, which is like a basket that contains all the alters. That Core Self was split from the body for 44 years but it would still type and sometimes you could see it staring as if blind, not moving, sort of looking like someone in a Petit Mal seizure I expect.

Ruth Elaine Hane
Donna, we met years ago in Milwaukee, Wisconsin when you were an anomaly. You spoke about autism and shed light on my own journey, then, as you are today, by sharing personal information. I admire your courage and pluck. I called my overl…oad-shutdown place my “Nothing Place” I preferred it to facing my abusive father, I thought nothing could hurt me when I hid inside. I too, have been cautioned not to tell about my abuse and coping strategies. I resonate to the thread about functioning too well to be autistic. I return the you gave to me in Milwaukee: “Be strong, have courage!”

Donna Williams
Hi Ruth, wonderful for you to find belonging here. Thank you for speaking out.

Natasha Delgarno
Yes what an interesting thread, thanks everyone for your contributions and Donna you are amazing. I read a book last year on DID called “A Life in Pieces” by Richard K Baer, I could hardly put it down and it left me with such respect for the healing process.

Randy Klein
A man is defined by the sum of all of his parts.

Donna Williams
Randy, I agree!

Love Sanchez-Suarez
i have read at least one autistic “multiple system” who doesn’t think DID is a disorder, they think they are several souls coexisting in one body. they think it’s real. is there anything wrong with that view, in your opinion? Not sure if it matters that this system (or some of them anyway) are autistic, but that’s how i came to read them was through the online autistic community… so i mentioned it for that reason.

Donna Williams
Hi Love, just as in the autism and deaf communities there are those who see their conditions as ‘differences’ and those who see them as disabilities or disorders, the same is true in DID. I see MY DID as both a difference, a disability and… a disorder BUT I see it as a disorder in the sense of it being an imbalance, an extreme that is too large to easily manage… so in the same way that OCPD (Obsessive Compulsive Personality Disorder) is common in Aspergers but only some with it will find it too imbalanced or extreme to easily manage… others will feel its ok with them, even if overwhelming to others, or sometimes to themselves.

Devlyn Rhys Young
as DID (my preference is MPD) occurs as a coping mechanism, it unfolds upon whatever other personality traits a person is born with (like OCD, BPD, depression, etc)…it also unfolds upon those with autism. i have read that those with auti…sm and MPD can come to manage it best, because of the pattern-solving, puzzle-organizing type of mind they have. my ability to mimic and script well – and read others’ expectations- had/has me functioning quite highly although quite weird in many ways. b/c autism is on a spectrum, i had several alters who functioned way less autistic, so that i could teach, counsel, and live appropriately (mostly) in the world. each of my inner peeps sees themselves as real, complete humans in and of themselves, just wanting healing, friendship, and a way to interact cohesively and coherently within the one who people see as the presenting adult

Donna Williams
Hi Devlyn, I agree I’ve made a great DID patient as many of my selves have incredible problem solving skills I feel I wouldn’t have if not autistic. For example, Polly can use stones, sticks etc to externally mentalise, just as people did in the stone age… she can map out her feelings on the floor showing relationships between things. Da is a surrealist and systematician and came up with amazing ‘integration maps’ to weekly track our progress – awesome! Willie is a list maker and researcher of OCPD proportions. The cat alter, Ning, has an ability to scan each room we’ve ever been in and feel out the trauma spaces and the safe and sacred spaces. Anne paints the faceless works and keeps an art journal that tracks the process and dilemmas and lost memories in the system.

As for MPD it is a dissociative disorder (or difference if you like) not a personality disorder (just as depression/bipolar are not personality disorders, they are mood disorders, and OCD is a compulsive disorder, but OCPD or Borderline are personality disorders). So its really the P in there that is an anomaly. Although in DID each self has its own rehash of the personality traits the Core Self was capable of, what each alter takes is still part of that original mix of traits, so in a sense there IS one personality, just the alters have their own distinct rehashes… like a DJ doing a remix… its still made from the original materials. Perhaps something like DMID – as “Dissociative (and) Multiple Identity Disorder” would be most fitting which would keep the multiplicity but stop feeding the confusion re a Dissociative Disorder versus a personality disorder. As you know, those with DID are not personality disordered. Their alters don’t necessarily have any personality disorders at all (though they can).

MPD was never seen as part of a spectrum. As such people could never imagine THEIR place along the milder ends of the dissociative spectrum. DID is known as a spectrum disorder within the spectrum of dissociative disorders. It helps people understand the comprehensibility and validity of the condition.

Devlyn Rhys Young
oh, is that what they meant by DID; i couldn’t grasp it because it didn’t fit me. also, all what you said to me in the previous note is so right on with what i’ve experienced; too awesome… i mean that in a good way… i know there are many times it is not awesome, but – for me – to know someone who works similar to me, way cool. the spectrum itself seems genetic somewhat with my mom and daughters, but nobody is mpd like me… and i like the cat alter: maybe that’s why i can shapeshift as a shaman easily… curiouser and curiouser. stay dry and safe.

Donna Williams
Hmm, Da is amazing at characterisations, Carol is/was a chronic pleaser, Anne struggled to be more than a ghost with a body, I struggled to stay in much more than the fingers, feet and eyes, but none of us shape shift. The cat is always a… cat, the rabbit always a rabbit, the bear only ever a bear, so they don’t shape shift. Willie is fairly archetypal Aspie so no shape shifting there. Marnie neither. Rose neither. Addie neither. But helpers, therapists, troubleshooters… yeah, we got them. So no shamans here but Da, Addie, Willie are all good as therapists. Anne is good too… if its with silent people and via arts. Carol and Da are lovely as play therapists. Marnie’s ever ready with a healthy dose of reality. Polly isn’t shamanic but she’s very cool with using objects in external mentalising and she creates symbols for everyone.

Randy Klein
Then there is the argument of integration. Some are for it and some are against it. The point of comfort arrives when a choice is made. Regardless of what the decision is.

Donna Williams
Hi Randy, I have a friend with DID who is not autistic. Her DID came about in late childhood where mine began around age 2-3. Her alters don’t have early childhood histories, most of mine did and those that couldn’t remember before age 10 then did remember back to ages 4, 3, sometimes 2. Her Core Self remained present all her life. Mine was in shock and dissociated – what we think of as ‘asleep’, some people feel theirs got ‘killed’… essentially my Core Self thought it was a ghost. So her system didn’t want integration as they didn’t feel anything was missing. But mine wanted a sense of home (the Core Self to wake up), wanted to find their relatedness to each other, some wanted each other as friends, siblings, carers. So my system was naturally inclined toward integration. This is not to say some didn’t get exiled or exile themselves along the way. But now all are accepted for who each is and their importance in terms of past, present and future to the system as a functioning whole.

Alexei Maxim
I am very disturbed that people with DID and Borderline (BPD) (which I believe is the precursor to DID) are seen as somehow inhuman, mentally. DID and BPD are the natural human reactions to trauma, in my opinion. Would you agree, Donna? The more trauma experienced, the deeper the reaction goes, until it moves from an anxiety disorder, into BPD and then further into DID. I am trying to write a novel that will make people see these ‘disorders’ are natural human reactions to too much trauma and so I appreciate your view on it Donna. I am enjoying reading your myth-busting sessions.

Donna Williams
Hi Alexei, DID doesn’t progress into BPD and most with DID don’t have BPD (the two used to be confused but are now differentiated). Many with BPD do not develop DID but DO have dissociative disorders such as derealisation, depersonalisation and if subjected to trauma may be more predisposed to PTSD and further to DD Nos. If they experienced the same severity of trauma that causes DID, someone with BPD could develop DID in addition to their BPD. But generally they find most with BPD over indulge in fantasy and compulsively disappear into roles and those with DID compulsively dissociate into more 3D, fully developed and more complex alters. Saying that, one can certainly have both.

Also BPD (Borderline) is a PERSONALITY DISORDER which has DISSOCIATIVE FEATURES as opposed to a DISSOCIATIVE DISORDER. As such those with BPD are more prone to dissociative disorders along the SPECTRUM of dissociative disorders but BPD is not listed as a dissociative disorder. It is listed as a personality disorder. Where DID is listed as a dissociative disorder along the spectrum of dissociative disorders. BPD is also not an anxiety disorder. Though ANY personality disorder gets from a personality trait into being a personality disorder VIA chronic stress… unless one has two parents with the same personality trait and got a double whammy of it. Similarly OCD and Tourette’s are COMPULSIVE DISORDERS and Depression and Bipolar are MOOD DISORDERS and AUTISM is a DEVELOPMENTAL DISORDER (or difference) and ANXIETY added to any of these will exacerbate them. Hope that clarifies your important question.

Alexei Maxim
Thank you Donna for your elucidations about BPD and DID. I had thought DID was also a ‘personality disorder’. It is helpful for me to visualize the SPECTRUM of dissociative disorders and to realize that BPD affects how prone a person may be to develop something on this spectrum. I will study your opinion more. I thank you for helping me to understand this! It is a subject that I think people need to be educated on(including me).

Ruth Elaine Hane
Dear Donna, I’m sad that you were sensored, however had you exposed too much information before you were accepted as autistic, no one would have listened. I love your analogy of a basketball, you have a great team! After reading Nobody Nowhere, I read most of your other books. I feel an affinity to each of you, and all of you, since I was split until I had intense group therapy in my 40s. Looking back, I commend and embrace my survivor self for creating new people to carry on and not collapse into a deep depression like my older sister did.

Isabelle Monod
thanks Donna & everyone on this link for your honesty ! it’s so painful to hear that when one has gotten the ability to “talk” in a “significant language” ,one is immediately told to shut up, on subjects that don’t “”fit” what has been”decided” to fit !!! this is real abuse!

Jane Waterman
I’m having a hard week this week – memory and stuff, but i just wanted to say thank you Donna for furthering awareness that people with DID are not psychotic and not always mentally ill. There’s a very good book i just read called “five farewells” by Liz Elliot, about a girl growing up in the south with abuse and well just not about her DID so much as about having trouble relating to the world, and relating through objects and well i saw ourselves all over it. She felt a part of nature and light and water and stuff, well, we really related to that part too. Some of our people are more energy than anything – perhaps a moot point when you only have one body and many souls, but it kinda makes sense that we are entranced by different forms of energy when trying to relate to the world. The abuse stuff is hard to read, but i think you will really get a lot out of it. she talks about being mostly integrated now, but i really get the impression that all her selves are still there, they just overlap more now. I’ve known some multiples with animal alters. Donna it’s not something to be scared about.

Donna Williams
Jane, you are an angel… of course maybe one of your alters IS! Anne thought she was an angel/ghost/cat spirit. She’s now differentiated from Ning (the cat) so at least she’s freer to talk now. She’s still coming to terms with being human.

Donna Williams
Some great videos where the non-DID partner is being interviewed by the partner with DID.
http://www.youtube.com/watch?v=N_1zsU03tX4&feature=related
http://www.youtube.com/watch?v=dkwQoKR7qVA&feature=related

More DID mythbusting here.

Donna Williams *)
author, artist, singer-songwriter, screenwriter.

Ever the arty Autie.
http://www.donnawilliams.net
http://www.myspace.com/donnaandtheaspinauts
http://www.auties.org

This item originally posted here:

Myth busting and Dissociative Identity Disorder

Abbie Rich
that’s easy…everyone with Aspergers is like “Rainman”

Donna Williams
OK Abbie, as we know, only 1% of those on the spectrum are ‘savants’. We also know many with AS are gifted and that gifted is not the same as being a ‘savant’. We know Daniel Tammet had a brain injury and also has AS and that he is a sava…nt. We know savant skills also occur in some people with brain injury and that there are savants with sensory impairments. We also know people glorify savants, that its a means of marketing abilities of those with autism and so there’s high competition to be known as a savant. We also know that IQ is nothing to do with being a savant. And we know that many people with AS are no more particularly gifted than would occur in the general population – a myth busted!

Christianne Palmer
People with autism don’t have a sense of humour. Tell that to my 11 year old non-verbal son. Nothing he loves more than a good joke (usually pretending he’s going to do something naughty).

Donna Williams
Hey Christianne, as we know there are teens and adults diagnosed with autism who have become comedians. We also know children with autism have all different temperaments and personality traits – including those predisposed to humor and surrealism – and many also characterize cartoon and other TV characters and their slapstick antics. We also know that humor, silliness and surrealism can be used by some to divert from pain, fear, anxiety so in those with that predisposition, comedic skills could become more highly developed than for a child not facing the same issues day to day.

Abbie Rich
That ‘You made your kid that way’.

Donna Williams
Children with autism often have no significant brain injury and are usually not born into neglect or abuse or to mentally ill or substance abusing carers. Others, however, will be.

No degree of bad diet or abuse or neglect AFTER the age of 3 can make a non-autistic kid autistic. It could make a child APPEAR autistic but once the diet is healthy, or the child removed from abuse or neglect and in a healthy environment, the child would begin to recover.

HOWEVER, if a child was born into severe neglect and abuse, so that it was chronic before the age of 2-3, it would be a cert that the child would have developmental delay – ie PDD, that it would have attachment disorders like RAD, that it would have impaired neurological integration, sensory processing problems, delayed communication development etc…

In other words severe abuse and neglect from birth and for the first 2-3 years can probably amount to the same degree of impairment as any brain injury associated with oxygen deprivation at birth, infant stroke, brain injury from infection in infancy, fetal alcohol effect, head injury… all of which I’ve seen as a consultant associated with cases of autism and PDD Nos and PDD.

It is also possible that a child with a family history of autism will be born to a substance abusing parent, born into neglect and abuse and be more developmentally, neurologically, immunologically impaired than they would otherwise have been born into other circumstances.

Abbie Rich
That autism doesnt exist

Donna Williams
As for whether autism exists… something that presents as autism definitely exists… but…. if you distinguish speech aphasia, visual/verbal/body agnosias, verbal/oral/motor dyspraxia, delayed sensory and neurological integration, gut/immune/metabolic disorders, epilepsy, selective mutism, separation anxiety disorder, dissociation, derealisation, Exposure Anxiety, Social Phobia, GAD, OCD, tourette’s, DPD, OCPD, AvPD, NPD… etc… there’s basically nothing left in the fruit salad that is SPECIFICALLY ‘the autism’.

Diana Paige Sheeks
That Autism is caused by bad parenting.

Donna Williams
Hi Dianne, re parenting… if a child is meaning deaf/meaning blind and the parent uses long strings of blah with no gestural signing, representational objects, no hand over hand learning… then this is not bad parenting… but it is parenting that doesn’t help the person with the issues. Similar if a child is face blind or has social emotional agnosia and the parents keep changing their hair, clothes, never aiding the person to formally notice or interpret the things they’d never naturally even know held meaning. Similar if the child had extreme Exposure Anxiety and the parent was always in their face, pursuing, gushy, constantly increasing the sens of audience to every move they made. Or if the child had DPD and the parent pandered to it to avoid the child tantruming or doing emotional blackmail/self injury then the parent would actually make the DPD worse… so whilst ‘bad parenting’ in mainstream terms doesn’t cause autism, caring which is uninformed about the nature of their OWN CHILD’S particular fruit salad and what’s required to appear comprehensible, respectful, even sensorily cohesive, certainly helps!

Maxime Cossette
MYTH: People with autism don’t understand/perceive body language. They just don’t understand/perceive it WHILE THEY’RE TALKING OR WHILE YOU’RE TALKING TO THEM !!! little, but so important difference ( it may be not true of all, but of many of the verbal ones, especially Aspergers )

Donna Williams
Maxime, good point… not ALL people with autism have Social Emotional Agnosia! Many DONT Many DO. Those who don’t may be highly sensing… especially if they can’t see the whole… they learn to tune into tone, movement, very subtle shifts… and that can be utterly different to the Aspie with Social Emotional Agnosia yet cause its own set of problems! And its also true that someone MONO can’t easily SHOW you what they understand whilst tuned into to ALL OTHER because they cut off from SELF at the time. Doesn’t mean they don’t perceive the other stuff… and sometimes its simply there in delayed processing. But the psychologists are SO behind on this stuff… aiaiaiai

Nikhaylah L Peacock
I mentioned to another mother at pre-school that my son has autism, her response was that he couldn’t because he isn’t always flapping his hands and screaming!

Donna Williams
Hi Nikhayla, re flapping and screaming… there are kids with autism AND DPD or NPD who will tantrum because of personality disorder stuff, others simply because of information overload, others because they’ve learned it works to control the parent (and yes, they STILL have autism AND they can work that out), others with gut pain/ear infections/migraine who will scream because they have pain, others just plain frustrated as hell with their sensory perceptual confusion of sensory hypersensitivities or communication disorders or the entrapment of Exposure Anxiety and its involuntary avoidance, diversion, retaliation responses, or with severe chronic tics… and there’s those who just DISSOCIATE and IMPLODE who don’t scream, they disappear or become a TV character or a cat or….. As for flapping, babies flap until they can mirror facial expression/body language so its common in children with social emotional agnosia… there’s nothing particularly ‘autistic’ about it, unless you think Social Emotional Agnosia IS autism (as opposed to part of some people’s autism. Others will flap for the visuals, especially if they have visual/verbal agnosias and the movement makes them buzz. When they flap beside or in front of their eyes it can help them switch on the visual processing, be used to process info, or used to tune out visual flooding… but of course not all kids with autism will flap or scream… so personally I don’t like the presumption that ‘we all flap’ or that its ‘part of autistic culture’. That’s a BOLLOCKS!

Lisa Marie Beddell
I know they say we can’t love and will never find a partner also they say we can’t empathise

Donna Williams
ah, that we can’t love, empathise or find a partner… well, those with autism and NPD or psychopathy can’t love or empathise, but they may find a partner, and use and abuse them. Those with autism with Schizoid or Avoidant personality disorders may never meet a partner! Those who are Schizoid may struggle to show love, empathy and be easily left by a partner. Those with Dependent Personality Disorder may infuriate a partner who finds they have a big baby on their hands who married for a a mother replacement. Those with Social Emotional Agnosia may fail to get the messages to reciprocate expressions of love and may not see the signs that would lead them to empathise but once they know what’s hurting someone they can be as empathic as any human being. Those who can’t process simultaneous sense of self and other may keep disappearing when processing one or the other so may struggle to easily express love or empathy directly. Those with Exposure Anxiety may deeply love and empathise but continually avoid, divert, retaliate against the direct expression of it.

Sarah Hitchings O’Connor
autistic people can’t lie. Beth lies all the time!

Donna Williams

Hi Sarah, ah, lies. Again that comes down to personality. The Adventurous personality trait fears boredom, lives for excitement and they can be exceptional liars! Why? Because the extreme is Antisocial Personality Disorder – sociopaths! Can someone on the spectrum have the adventurous personality trait? OF COURSE!!! But there’s many personality traits which find it simply unnatural to lie, they can’t see the point, have no natural motivation to do so. And those diagnosed with autism tend rarely to be those with a strong adventurous trait… why? because they then dx THOSE ones with ADHD!!! how convenient! You see the idiocy, of course.

Maxime Cossette
Myth: Some people become autistic. You’re born like that, its genetic, you are or not, you cannot become autistic.

Donna Williams
Hi Maxime, re autistic people are born with autism… There are definitely those that ARE and there are those who show NO sign of autism until around 18-24 mths.

I believe in the future we’ll see those in the 2nd group fit things like Disintegrative Disorder (a toddler onset of dementia), have gut/immune/metabolic disorders which don’t trigger until going onto varied diet/vax regimes/catching full blown bugs they can’t rid from their system (ie viral load). And remember, if a baby is breastfed it will have its mother’s immunity until 6mths old.

Primary Immune deficiencies have a high association with developmental disability, including a percentage who will be diagnosed autistic. So those with IgA deficiency (the most common primary immune deficiency and effects 10-20% of those with autism) this won’t show the impact of primary immune deficiency until after it accumulates a viral load etc by around 12-18mths. This same group usually can’t digest cow’s milk or gluten or detox properly from salicylate intake so you wouldn’t see that impact until these things entered the diet for a while. If the child is breastfed then that’s at around 12-24 months of age. If the child is straight onto cow’s milk at birth, or soy (which reduces gut IgA) and is intolerant or allergic to either, then the associated neurological impairment might appear to be ‘from birth’ or ‘born that way’. Even if ‘autism’ ran in the family, if its not differentiated from gut/immune/metabolic disorders, you can’t be sure WHAT it is you’re saying is genetic.

So it may be that ALL people with autism are born with it, as that there are a percentage who are born predisposed to neurological/immunological/metabolic/gut disorders which MANIFEST as development disorders and RESULT in autistic withdrawal and behaviours.

I have also known children who were not autistic until the mother sunk into post natal depression and the child went into depression with her, possibly not because they were predisposed to autism, but because they were predisposed to DEPRESSION. Then the mother recovered but the child stayed dissociated, in their own world, developed things like DPD (Dependant Personality Disorder), it got called ‘the autism’, the parent unknowingly pandered to DPD/entrenched it. Voila, one case of autism.

So I think there are those born autistic and others who become autistic in the first 24 mths. I also know there are some older children and adults who had brain injury who if you met them, you’d be certain they were autistic as they have all the same processing issues and emotional responses to their disabilities as the child with autism. And there are those with chronic seizures in infancy who BECOME autistic but weren’t before the damage of the seizures causing progressive brain injury. And I worked with a man who became autistic at age 7. He was indistinguishable from any autistic child in his school. But he had speech until age 7, just anxiety disorder consumed him until his stutter became overwhelming and he became progressively more Selectively Mute and ultimately regressed etc.

Anita Ghazarian
That their ‘episodic memeory’ is poor. My son can remember events, ppl and places from the time he was less than 3 years old. Furthermore he can recall the context; for example he started recalling a therapy place we used to take him to when he was a toddler. He remembers, the place, the shops around that place, what therpaist he had and the other therpists and one on ones he had at home and school at the time: a complete slice of history.

Donna Williams
Hi Anita, yes some people with autism have REMARKABLE ‘serial memory’. This may also be a feature of those predisposed to PTSD and dissociative disorders. Some people with autism have the inability to forget. Hence why some can characterise and repeat entire TV shows.

Maria ‘Ria’ Strong
Far from “can’t make eye contact”, some of us told off for staring. Including me. Yes, tend not to make eye contact when I’m listening/talking to people, much more likely to look at their mouths. That’s a speech/language processing issue tho, not about eye contact as such!

Donna Williams
Yes, Maria, the problems with eye contact include – when people can’t see a face as a whole (the movement of a perceptually fragmented can make people feel ill/overwhelmed and peripheral vision restores cohesion),… people with AvPD may naturally avoid eye contact as do shy people,… people with Schizoid Personality Disorder or Exposure Anxiety may avoid it when initiated by others but stare if initiated by them, … people who are faceblind may be intimidated by expectations to recognise and respond as familiar… people with Social Emotional Agnosia may not get the messages people feel facial expression and eye contact give so may avoid or stare… people with NPD may be so not into anything that is not entirely to their own benefit they find no point in eye contact or the empathy others think they may get from it, … some people have become traumatised by the eye contact thing through the pathological fixation/pursuit/control of therapists forcing it!

Stacey Poppel Groder
Children with autism don’t care what others think. Conversation on the way home from school today: “my friend is going to hate me….” (because I told friend’s mom they had a test)

Donna Williams
Hi Stacey, yes, there are those with autism and AvPD or GAD who will FIXATE on what others think of them!

Marsha Dolan
That those with autism have no imagination…..pah!

Donna Williams
Hi Marsha, there’s be those with such severe visual perceptual disorders, such an inability to process simultaneous sense of self and other, such high Exposure Anxiety or Schizoid Personality Disorder they can’t dare to show themselves or others what they think, feel, imagine, those so overtaken by OCD or tics they have little space for volitional action/expression and any of these folks may have significant difficulty indulging in imagination. There are also those without these things who will simply not be naturally imaginative personalities and others who will be marvelously so, even take refuge in imagination or at least creativity.

Diana Paige Sheeks
MYTH: They should be institutionalized…or worse…sterilized! I’ve had that one posed to me a few times.

Donna Williams
Oh Diana, that’s such a painful one… sadistic, narcissistic, psychopaths should be sterilised. We don’t need any Myra Hindleys in this world. Those with autism with the intellectual or emotional capacity to adequately care for a child would need significant social supports to bring one up and if the child is born with similar issues, the parent may have too many of their own special needs to adequately help a child who has similar. Others with autism have made wonderful and capable parents. As for institutionalized, people are actually saying ‘rubbish bin’, they are saying they feel society shouldn’t see or know of or have autistic people… they are suggesting something akin to the ghettos of Nazi Germany, the next step of which was extermination. In other words anyone making such a statement is a bigot or worse and is demonstrating the lack of empathy I’d expect from a psychopath.

Kathy Williamson
The only people who have autism are children.

Donna Williams
Hi Kathy, of course autistic children grow up. Some DO outgrow their autism by age 5. I have seen it. Nobody knows which ones or why, and its not always due to diet, interventions, etc… sometimes its kids who had immature immune systems and recovered naturally as these matured…. sometimes its because the child was in their own world, dissociated and made a friend… seriously… we should do this as a topic… the things I’ve encountered as a consultant since 1996… but of course MOST do not outgrow their autism at all… some do outgrow parts of it, or adapt enough to get many more functions than they had, some even move from appearing autistic to appearing to merely have info processing issues but without behaving particularly ‘autistically’. Other children grow up to be as autistic but in an adult’s body. When I meet these ones often there is a whole fruit salad of issues that haven’t been understood or addressed and the person has then built their identity around all of that… they have BECOME their autism. Others will type about being entrapped by ‘their autism’ and in discussion with them it will become clear they are talking about a range of disabilities, not one thing… some addressable… many adaptable… some not.

Maria ‘Ria’ Strong
You can’t be autistic because you’re not like my child. You can’t be autistic because you can [whatever]. Because you can do [whatever], you must not need support in any part of your life.

Donna Williams
Hi Maria, oh the one size fits all myth… this is the one of people who can’t grasp autism as a fruit salad and its many combos.. the purists… the flag wavers who post their child on You Tube as THE face of autism… and if you try and help them grasp their kid’s fruit salad they FREAK OUT… because they are INVESTED in it being ONE THING… its become THEIR badge of honor, their EVIDENCE that as an undx’d Aspie they can prove their autism by proxy – boring!!!! Equally boring is the assumption of high/low functioning and that those who can put their all into getting through the day then collapse or regress are somehow indulgent and don’t require support. aiaiaia. Equally the opposite, that those who don’t automatically pursue skills must be incapable of discovering they could have any.

Carla Campbell Hay
I get fed up when people keep asking me , what is his talent or is he a good singer!!! I feel like screaming at some ignorant people!!

Donna Williams
Hi Carla, yes, some people with autism do compensate by overdeveloping a particular ABILITY but that certainly doesn’t mean all compensate that way… some will compensate by being silly/surreal all the time, by dissociating, by becoming a prompt dependent automaton, by sitting on the computer with computer addiction, by becoming a stim addict, by…. you get the picture. Yes, people are very ignorant. Best to maybe say, hmm, don’t know, why, what’s YOUR special skill?

Michele Nichols
does not like change….CRAP my son loves chaos and adventure…

Donna Williams
yep. those with autism and some personality disorders like the AvPD, live for routine, fear change, or those with Schizoid personality disorder will tend to stick to what’s logical/practical, and doesn’t give much away so they preserve their anonymity. Those with OCPD are so geared for control, achievement, perfection that novelty could counter those things so they tend to fixate on what they are already into and good at. Without the adventurous personality trait (or the Exuberant or Idiosyncratic traits), a person with autism may have little sense of adventure, need for novelty or excitement. In other words those who believe all people with autism don’t like change can’t distinguish things like AvPD or OCPD from ‘the autism’.

Susan Elizabeth Spann
That they cannot work or function in society.

Donna Williams
Hi Susan, there are non-verbal people who are authors and bloggers, two I know who are assistants in bookshops, some who are gardeners, several who are artists, some who want to be autism consultants. I know many people diagnosed on the spectrum who work in all types of jobs; social work, teaching, process workers, shelf stackers, waiters, cooks, delivery people, library assistants, dog walking, engineering, make up artists, IT, artists, writers, presenters etc…. and I know many who use OCPD or AvPD or NPD or DPD or just plain separatism or malingering as an excuse to cop out of the MOTIVATION, ENDURANCE and FOCUS it takes to even regularly check for jobs, put up an advert looking for any work, take or try work offered to them, or even show up regularly to something that isn’t 100% their ultimate interest.

Nadine Stavonina-de Montagnac
Ok, here’s one: I’ve never ‘suffered’ from my autism – but I suffered from a broken nose for looking ‘weird’ – the pain hurt like heck for days. I suffered from name calling – the pain hurt for years! And I’ve suffered from being rejected and avoided for being misunderstood – the pain hurt a life-time. Autism doesn’t make me stupid. If I was, how could I understand my ‘type’ and the ‘normal’ type and exist in two worlds?

Donna Williams
Hi Nadine, well, as we know people don’t suffer from neurological differences, they suffer from frustration, maltreatment, discrimination, exclusion, they also suffer from disorientation, derealisation, depersonalisation and any of these things can be due to disabilities associated with autism fruit salad. So we can say that people don’t necessarily suffer from autism, but they can suffer from the mental, emotional, social and communication impacts of disability. So if one’s autism does not amount to disability – and there’s those for whom it does not – then they are not suffering from their differences. If there are those whose autism does amount to an overwhelming level of disability or associated social disadvantage, then yes, they may well suffer in ASSOCIATION with their disability/ies.

Rachel Vivace
That we can’t smile, laugh, or feel emotions.

Nikhaylah L Peacock
don’t show affection

John Lang
Autistic people can’t contribute actively to society.

Tammy Simon
don’t want friends

Jessica Cotterell
can’t emphasize.

Robin V Schwoyer
can’t show empathy or affection

Marla Wise Miller
Have no imagination.

Shirley Buttram
I was asked by a doctor just yesterday and I quote “What are his limitations?” I promptly told him only God knows that. I don’t put limitations on him.

Marla Wise Miller
You go Shirley! To have a Dr. say that makes you wonder what kind of degree he has!

Grace Carbone Fava
I was told by a “professional/expert” Don’t you know your son wont amount to anything? pffft!

Dwight Gardam
Lack self-awareness

Courtenay Alexis Bell-Gimelli
Autistic people can’t be creative

Paula Jessop
A true quote from a general doctor “oh, I didn’t know adults could have aspergers”…

Janna Louise Hoskin Willard
‎”Autistic people don’t read fiction.”

Rebecca Briggs
‎”Autistic people can’t talk” I can talk so to some I must not be autistic. At least they aren’t like my kindergarten teacher who was convinced I was schizophrenic as a child.

Shirley Buttram
My son drives a car, and in July will receive an Associates Degree in Sacred Literature.

Courtenay Alexis Bell-Gimelli
Oh and a professor told me all females on the spectrum were”fat, ugly and tend to be unattractive in general.” She said this after I told her about my aspergers.

Leah Jane Grantham
‎”Autistic people can’t get married”
Buh?

Leo Pelayo
Wow Courtenay your from my side of the playground…have aspergers too, so does my daughter and she is beautiful

Sam Hadley
a teacher once asked/said to me “ohhhh, so what is he obsessed with, trains, planes or space”???

John Lang
The best one of all… Martin Bryant’s mother on 60 minutes the other week… “My son’s Asperger’s Syndrome made him carry out the Port Arthur massacre.” How fucked in the head is that!!

Marie Davis
A psychologist once told me you can’t be aspergers if you make facial expressions

Nanne Binghi Barkdull
Because I was “too old”. lol

Brendan Maguire
Are not able to have relationships

Jess Coburn
‎”but your son doesnt cower at the lights…” wtf is that?!

Laura Lewis
When you tell someone your son is autistic and they say oh but he looks normal. that gets me so mad. he is normal. he is autistic like I am a Mother

Brigianna Spencer
Not sure if this quite fits, but… the government is making us autistic to make us easier to control.

Sarah Justice
he doesn’t look autistic. i get that one alot. I ask them what they think autism should look like?

Cat Taylor
‎”will never say mum or I love you”

Dwight Gardam
And I thought autism awareness was increasing, apparently not. If these comments are a reflection of how many ‘professionals’ view autism, then we have a long way to go

Nick Avery
Your son will never speak, never hug or kiss you, never say he loves you, never attend a normal school, and will be in an institution by the time he is six. Wrong on all counts, Doc!

Sara Sanders Gardner
I’ve heard: “should never have children” “don’t want friends” “can’t teach other autistic people how to do things”

Laura Lewis
when people stare because of Clay’s meltdowns I just stare right back and ask them would they stare if he was in a wheelchair

Donna Elks Pittman
We just got a shirt for our 10 year old son that reads “KEEP STARING… I MIGHT DO A TRICK!”

Nicole Turon-Diaz
When telling a 20 something about Joey Travolta’s Short Film Camp and he said “You mean the autistic kids and regular kids make films together?” My reply “Yes!” His response “I don’t think that’s a good idea!”

Michele Nichols
empathise

Claudia Clarinet
I think Mike Savage’s remark about autistic children’s just needing a good spanking to make them behave would rank right up there with the worst things that I have heard. Not believing that sensory issues are real would be right up there too.

Louisa Martin
I hate than whenever there is a Maths question they all look at me, cos as I’m aspie I should be good at Maths! Also when people ask what is your special talent? (I usually say punching ignorant people)

Gisela Slater-Walker
Nurses in local hospital asked me (about my husband). What’s Asperger syndrome? Does he talk? Will he pull his tubes out? Is he violent?

Donna Williams
apparently REAL autistic people don’t have health disorders, don’t have co-morbids and couldn’t have anxiety/stress induced dissociative disorders. I’ve of course also heard we can’t feel abuse, that we wouldn’t understand we were abused b…ecause we’re autistic, that we don’t cry and also don’t have any sense of humor. I think this qualifies others for a diagnosis of SEVERE IGNORANCE with a CO-MORBID OF BIGOTRY whether this BULLSHIT comes from purists on or off the spectrum, identified with purist glorifications of the label or just as ridiculous demonisations of it.

Nicola Mortimer Mucklow
Its worth mentioning that those with the severest form of autism do actually have difficulty with most of the things mentioned above. In this age of promoting Neurodiversity, those most profoundly autistic people are unfortunately forgotten….
I imagine the carer or parent of a profoundly autistic person might be frustrated at the lack of services & discussion targeted at those least able.
Stereotyping is unhelpful, but for some on the spectrum it does correspond with reality or at least seems to. For those of us who only have experience of living with Aspergers or live with someone who has high functioning autism it is worth remembering there is also another face to the spectrum, that of those who live in a state of perpetual fear, unable to communicate & utterly locked in their world. Ps my son has HF autism, is happy, reads, writes, is empathic, has a fertile imagination, is demonstrative & has a girlfriend. : -)

Nora Watts
I can’t read this it is too funny /sad

Carla Campbell
My work collegue wen I told her my son is autistic ‘I bet he has blonde hair and blue eyes’!

Sondra Williams
that my youngest son could not be of aspergers because he was of too verbal, did not fixate to roller coasters and that he was of too smart

Keri Bowers
really not so specific, Donna… If I had just a penny every time I (sadly) heard a parent say “my child can’t (fill in the blank)”… I’d have a Starbuck’s coffee everyday for a year.

Susan Harvey
Unable to show emotion …. and my son who hugs and kisses me every day and tells me he loves me. Oh, and when he was around 5, he needed a good smack to sort him out! So there’s the answer, smack your children and autism wouldn’t exist – lol.

Monique Blakemore
‎”A person with Aspergers won’t know what to do unless told what is needed”. Hmm

Tanya Longbottom
Have heard a lot of these and it just makes me sad that people can really think these things. Why do we have to label or judge each other.

Lisa Marie Beddell
I think some autistics may get so frustrated with there difficulties they just say “i cant do this” out of pure frustration because thats how it feels at the time. there has been times i have just wanted to give up and said “i just cant do this anymore” it doesnt really mean we cant it just feels that way sometimes.

Gaia Charis Re
my severely autistic teenage son….’Do you REALLY think he’s in there somewhere ?’

Lisa Marie Beddell
Using the word “cant” is a dead end at least the word “challenging” and “difficult” have a glimmer of hope there.

Susan Mann
following my evaluation, the professional who diagnosed me with AS said to My best friend (at that time), “I knew she had it, as soon as I looked at her eyes.”

Gabrielle Hogg
one person said “oh i though Autistic people can’t talk” and she was the receptionist right next door to where my presentation was taking place! oh and another one Autistic people can’t live on there own or Autistic people can’t work!!!

Gillian Loughran
‎”So young man can you talk”. Doctor ‘s words to my son who I brought to his surgery to check if he had an ear infection. My son was so embarrassed. I was so angry. I told him that I thought it would be best if we went to see a homeopath. He sure wasn’t happy about that one.

Gabrielle Hogg
oh yes I get that one all the time. or everyone gets anxious and can’t talk so why do you need your cell phone added to the disability allowance and plus you can write.

Lisa Marie Beddell
Saying we cant live independently is a really bad one if somebody said that to me id probably give him an ear bashing i run my own home and have a first class honours so saying we cant be independent ggrr but its important to remember that some severely autistics may find living on there own very difficult

Susan Mann Reading
all of these comments, it occurs to me that many times, people with Autism become objects, not humans, when people hear the term Autism. The is quite ironic, really! I guess folks immediately start mentally retrieving popular media images when they hear the word Autism, and feel compelled to share what they “know” about it.

Gabrielle Hogg
but then its quite ironic when us Autistics well some of us see others as objects rather then people when we were growing up!

Lisa Marie Beddell
It seems to me they are hearing the word autism and instantly thinking that we all have classic autism because classic autistic sadly may not be able to do these things i think a lot of people have not heard of aspergers so instantly label all aspies as classic cos that is all that they have heard of understand ignorant yes but they may never of had the experience of have known somebody with aspergers.

Donna Williams
Hi Lisa, I have the opposite. I’m 30% meaning deaf at best and sometimes only understand 50% of the speech I hear. In waiting rooms I regularly can hear my name called and have no idea its a word, think its just noise. I struggle to fill… out a form as the lines seem random, struggle to get meaning from reading but am great with bullet points, mind maps. I sometimes can’t recognise a person who I saw on the other side of the table when they return 2 min later at the side of the table, and I’m context blind and still object blind if objects are put in places that don’t lend meaning and I don’t see them used… so I have to advocate… I have autism…. not Aspergers… because when people meet me and assume AS they do all kinds of things I can’t track at all and when I start to use my strategies instead of realising I’m a very clever person with autism/agnosias they thing, wow, this Aspie is sooo disabled… and I find that stupid and demeaning… plus they presume I can’t read non-verbal cues and because I grew up meaning deaf, meaning blind, face blind and seeing my world in fragments I’m really keyed into movement and tone… so they treat me like an Aspie and my non-verbal skills are really high level so I feel they are treating me as if I’m emotionally ‘stupid’…. so rather ironic

Susan Mann
My neighbor rented, “Joshua and the Whale”, because she knew I had AS, and demanded that I watch it with her. As was typical, she also invited another person over, w/o telling me. I was the one who had asked the local video store to order it for me, but the neighbor did not know this…rented it before I did. I had intended to watch it alone, for reasons most of you here will “get”. Any way, several times during the movie, she would ask, “Is that how you feel”, or laugh and say, “that’s how you are.” I know she meant well, but I couldn’t wait for the movie to end, so I could leave and go home.

Kelly Redden
People with autism dont look at you and are not affectionate. If a child is able to speak, they are not autistic. Unbelievable!

Lynne Festa
one dangerous belief that some doctors and dentists have is that people with autism don’t feel pain, so don’t need anaesthetic!!
i thought this belief had died out, but i know of a friend’s child who was recently refused pain relief for tooth extraction!

Ryan McReynolds
Oh gosh there are moments when I commented I am autistic myself and such persons have said “you sound intellegent.’ as if being autistic and/or disabled is suppose to mean stupid and I am like autistic don’t mean stupid, sure I am autistic but I have a brain, some people say I sound like a lawyer.

Donna Williams
when I was being abused my abuser told an onlooker, it doesn’t matter, she can’t feel it anyway. I had pain agnosia but did feel pain, I just couldn’t tell where it was an it didn’t connect to expression. As an adult I had severe PTSD from such things and the fact I had no ability to express it or gain help meant the only way I could …live with it was dissociation, ultimately dx’d with DID. So when F&%^ wits say to me “you couldn’t have autism if you have DID” I just keep seeing what happened… all the times I was openly treated as someone who had no ability to experience pain, loss, no emotions, and inside I had all of these… and the psychopath who found it entertaining to do these things to me because I couldn’t respond and because somehow as a person with disabilities I was apparently a lesser human, less than an animal because I was clearly a broken human… labeled psychotic at age 2… 1963… it was a licence to do what my abuser liked. That onlooker was a relative… several witnessed abuse and did nothing… I have spoken to several, forgiven them… all either took solace in the belief/hope that I couldn’t understand/feel it, others left because it was too sickening to watch, once I was older I got apologies once I was a speaking person and they knew I had felt/understood… as though NOW I was a human… they accepted this Nazism because my abuser was my parent… and because my abuser flagwaved her ‘burden’ at having a ‘thing’ like me. Progressively people did feel sorry I had a thing like a psychopath/alcoholic/narcissist/sadist for a parent, some regretted deeply they didn’t help me… and I comforted THEM as they cried over what they hadn’t done, over their guilt… tough one.

Barbara Jacobs
From my PhD research: a teacher of a child on the spectrum said, ‘He has got to work out ways to control his disability so he can be acceptable in social situations.He has got to try and become acceptable.’

Marla Wise Miller
Maybe somebody should write an article or book titled ‘Your Not Autistic if…..’. Then after each comment you could put a big FALSE!

Lisa Baker
How about what autistic people can do……. my dad upon hearing my concerns about my son’s development “he’ll grow out of it”

Lisa Marie Beddell
By using the word “cant” they are removing the possibility of even letting us try and undermining our self esteem to the point where we might even believe we cant we should be encouraged to try new things to embrace life for who we are i dislike it when people try to take the opportunities away from us by using the word cant

Marla Wise Miller
‎’Normal’ is in the mind of the beholder! In my book, normal is highly over rated! I am not autistic, but I have never been accused of being normal. One person said I was weird. Well, according to Webster, that was a compliment and I said Thank You!

Parasuram Ramamoorthi
people with Autism cannot marry and if they marry cannot have children.

Alyson Bradley AsPlanet
We have all the words here, too many, so all I have to say is the world is full of bullshit at times and its about time those that think, thought they were in control of us, please get a life, as its time to turn the tables. I feel who’s with me

Jodi Terenzi
My son was sliding cans off a shelf in the supermarket whilst flapping and screaming and I was just trying to get the shopping done, when a lady with a child in a trolley and what appeared to be a grandmother loudly said “She obviously has no control over that child” To which I replied even louder “SINCE WHEN WERE YOU THE EXPERT ON AUTISM?” she just put her head down and walked away!

Judy Endow
I was one time asked after a presentation if I had learned to tie my shoes yet. I am in my 50′s, raised three kids, have a master’s degree, etc – all things that were mentioned when I was introduced before my speak. After I answered “yes, I can tie my shoes” the woman told me that I did not have autism! I said, “Thank you for your opinion. My doctors over the years disagree.”

Ruth Hatton
How about this one? “She looks normal”

Jodi Terenzi
Ha! Because she is! I hate the word ‘normal’ and I hate it when people say “if he was a normal 13 year old” I call the majority of the population ‘Average’ perhaps I shouldn’t but I am an average person and My son is a very special person..hes not this nor that..he is unique like everyone else!

Tracy Hall
I was told I couldnt have aspergers cause I was too caring

Allison Chapman
I hate it when someone says “your son doesn’t know the answer or can’t ‘get’ it”, I always tell them that he knows all of the answers, it’s the question he doesn’t understand, so rethink how you’re giving the question. I also hate that some people label everything as “behavior” instead of looking further to find out what’s going on environmentally or physically like an infection, seizure, sensory overload or pain..

Tracy Hall
I was not diagnosed as a child although mum had me going to several therapists to find out what the problem was, all they said was it was her fault, she was making me behave that way. before my daughter was diagnosed I was also told her behaviour was my fault due to having post natal depression with her as a baby

Lisa Marie Beddell
As soon as i can im going to pay donna and get some help, cos i think i dont have aspergers i have autism no body can know what goes on in our own heads better than we know ourselves i know that im having difficulties and what im capable of and not capable and i kind of know talking to all these ppl with a.s and autism i just know in myself that my difficulties are slightly more than aspergers i certain i have h.f.a the other aspies say to me well i dont do that i dont have that many meltdowns.

Jodi Terenzi
Here’s a funny one! In the uk we have a soap opera called Eastenders..anyway..there were 2 characters on the underground railway, one of them was heavily pregnant and the other one asks “Are you o.k”? to which the heavily preggers one replied “No, Im in Labour” … Then my autistic son chirps up >”Is that near London”? lmao!

Randall J. Currie
Autistic people don’t feel the same as the rest of us.

Love Sanchez-Suarez
a psych major once told me “but you are obviously intelligent, you can’t be autistic”. i was also told by a friend that maybe i shouldn’t own a home, either, because i have made some mistakes. that maybe “people like me” should just rent. but i didn’t tell my friend she shouldn’t ever fall in love again just because she had 3 bad mistakes for husbands.

Rebecca Briggs
My Dad told me I was broken. Good thing I didn’t believe him.

Judy Endow
One time I attended an autism conference dance in the evening after having keynoted in the morning. A stranger came rushing up to me at the dance and said, “I want to know all about your potty training.” I told her that I didn’t remember my… potty training. She wanted my input for her child who she was having difficulty potty training, but sheez – it was an odd way to approach…..and I was thinking….now why do people find it so easy to spot my “lack” of social skills, but think nothing of asking something in this manner and context LOL

Richard Maguire
Autistic people are self centred

Jodi Terenzi
I was told My son would do ‘nothing’ would never talk..would never learn..would never understand..etc. And while I think he dosnt understand completely ‘Love’ I know he feels love from me and when he is sick..he cannot tell… me what is the matter..but I work it out..his head hurts..so its his tummy! It would be daft to make assumptions about Autistic people..their not fools and dont suffer fools either..Thats a brilliant quality in my opinion!

Judy Endow
I was told that I couldn’t possibly have autism because people with autism cannot have sex. (I have three children.) The woman went on to tell me in all earnestness that I could trust her because she was an anesthesiologist and had put a little boy with autism to sleep when he was having surgery and wasn’t it wonderful to know I did not have autism.

Sondra Williams
judy you seem to attract much of these bizarre stories of things you could be of to write a book but in all truth i to much so had of the giggles over this one of the sex things.

Leigh Ann Fowler
Oh, Judy, you’re kidding! You’ve been cured by an anesthesiologist! (Sarcasm alert)

Isabelle Monod
a pediatric psychiatrist , when i was asking for a prescription for my son to have “ortophonie” ”
( speech help ) raised his eyes to the ceiling & answered ” with him? i don’t know where we are going to find the language !”

Sraddha Cartwright
That an autistic person cannot be a capable, loving parent. As quoted by a psychologist performing a parenting assessment on myself and my ex… (Am a parent, with AS, of four daughters, two of whom are AS/SPD).

Love Sanchez-Suarez
i was asked by a former boss “so, with this autistic stuff, how does it work for you to have a love life?” or something like that. this was like 8yrs ago and she is not my current boss (she retired) and i know she meant it out of sincere curiosity (and her own history of love life confusions) but still… WE’re the ones with the bad social skills?!

Hope Elizabeth Welker
‎”…express affection.” It’s pathetic how many people STILL think that! My son is MUCH more affectionate than any other 16 yo boys I know!

Elizabeth Websdale
I was told by my sons autism specific school, when I asked for readers that autistic kids just learn the words off by heart they aren’t comprehending. He only needed enough reading to be able to shop when he is an adult. My son used to act… out the Dr Seuss stories he read to us. Again when his younger sister went through the school and we asked for readers the teacher said we are not used to students who can read. I notice someone further up in the comments mentions about those more severely affected on the spectrum. I guess that would include my two children. What I find sad is that people make assumptions about what they can and cant do and set restrictions on them. Don’t judge people on their “cover” by what you see on the outside. The hand flapping, the stims, the difficulty using the spoken word. Never assume you know them by just looking at them. That is the most ignorant assumption of all. I am rather tired of the labeling of people as high and low functioning autistic. Since when was someone a low functioning human being?

Love Sanchez-Suarez
also there seems to be a lot of non-linear learning in autistics. like a person will learn something but can only demonstrate the thing they learned some days, months, or even years later. and variety… ppl who can’t talk but taught themselves to read at, like, age 2. ppl who can talk one day and not another. anything is possible. i remember the same people who thought i was a screw-up in the social politics of a previous job, telling me they didn’t believe i was autistic, or if i was, then must be very HF. well, hello?! i was high functioning as a teacher (after 10 yrs of practice, i finally got used to it!) and low-functioning at office politics. i’m still LF at many things and HF at many others. it’s all so various. every person is so various.

Caz Lane
I had a nursery manager who, when I explained my then 4 year old was undergoing assessment for autism, proclaimed that she knew all about children with autism and ‘they are the ones that dont talk arent they’ just before she went on to brag… how she had abused the special needs system to obtain funding for her daughter who was too ‘special’ for a state school to go private funded out of the already strangled budget because of her sophisticated background and exceptional intelligence (of course because of her superior parentage) and who later refused to let a specialist in to assess my boy or reply to correspondence. She really was a deluded, ignorant, despicable being who should never have been allowed to work with any child given various outbursts of truly psycho behaviour she exhibited whenever her superior wisdom was questioned in any way (which was quite often oddly enough).

Carmel Anne Jones
Autistic people don’t have empathy. That’s the most ignorant comment I have ever heard about autistics.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

This item originally posted here:

Autism myth busting. War on myths and stereotypes