Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Aspergers diagnosis versus identification

April19

Circus Tightrope by Donna Williams If you identified with AS, wanted to confirm your own identification with the label, but had no significant disabilities why would you seek a medical diagnosis?

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 β€Ž
@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 πŸ˜‰ 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