Stimming aside, what makes YOU autistic?
I recently heard from a blind woman on the autism spectrum who was looking forward to meeting me. I found her perspective on her ASD interesting so thought to share how our dialogue went. Here it is….
SHE SAID:
I have HFA/AS and I’m really proud of it.
I heard Nobody Nowhere on tape and Somebody Somewhere, and I’m getting
the next book.
I hope you’re okay with your autism/Asperger’s after trying to be so
normal. Nothing to offend you, but I’m kind of against normal and
don’t think autism’s a monster. I don’t know if you think that anymore
either.
ANYWAY….I found this interesting, the ‘really proud’ thing, the ‘normal’ thing, and I wanted to find out more about EXACTLY which parts of this person’s ASD so excited her, so made her proud etc.
SO I WROTE:
Hi, which part of your AS are you so excited about?
Autism is often underpinned by different things for different people.
The fallout of various things which have been termed MY ‘autism’ includes gut, immune, metabolic disorders
and mood, anxiety and compulsive disorders
and significant meaning deafness/meaning blindness (agnosia)
I love being me
I have a personality which includes almost exclusively solitary traits (solitary, vigilant, idiosyncratic, artistic and self sacrificing) which could easily appear more ‘autistic’ than many though I don’t confuse it with my autism.
I’m not fixated on being ‘normal’
but nor do I confuse these conditions nor the over all autism label that resulted from the combined effects of them (in MY case) with my selfhood.
AND SHE WROTE BACK:
What I love is the sensory thing. Whenever I hear the word or feel fur
I get overly excited.
I WROTE:
in other words you may have the idiosyncratic personality trait with a tendency toward high excitability (perhaps enjoyable levels of hypomania) and enjoy sensory associations with certain words
the idiosyncratic personality trait occurs in people with or without ASD
SHE ALSO WROTE:
I don’t want to fit in with the NTs…
I like the sounds I make and the way I rock.
AND I WROTE:
So do those who meditate, do Zen Buddhism or are drawn to Shamanism
again its not specific to ASD.
(As I learned she is also blind, and those without that visual stimulation commonly enjoy the sounds and movements they make,
so this pride in rocking and making noises may equally be part of pride in self stimulatory behaviours associated with being blind).
SHE ALSO WROTE
I don’t have any medical
problems that came with my HFA/AS. I might be more high-functioning
autistic than AS. I don’t know, I’m just really proud of the signs and
everything about the autism spectrum.
AND I WROTE:
Many non autistic people fit the signs too
its all a matter of degree
SHE ALSO WROTE:
I like the obsession part, too.
AND I WROTE:
There’s a DSM distinction between OCD and obsessive-compulsive personality disorder (OCPD).
OCPD is an extreme form of the conscientious personality trait (the extreme of which is called obsessive-compulsive personality disorder).
Of course both OCD and OCPD occur in non-autistic people too
and sent her the link:
http://www.ptypes.com/type_passions.html
SHE ALSO WROTE:
I always have to have an obsession/something I really love and think
about all the time.
AND I WROTE:
Sounds like you like being the PERSON you are
me too.
I do also think that being blind and having ASD may sometimes be occupationally and socially limiting,
so it would be a very valueable thing to enjoy one’s fixations to fill those social and occupational gaps.
In this exchange what was interesting was that she was describing enjoying being an obsessive-compulsive non-conformist…
basically BEING HERSELF as an idiosyncratic and conscientious personality.
I wondered of Temple Grandin’s iconic statement that she wouldn’t want to cure her autism because it is who she IS…
what exactly does SHE mean when SHE says this?
If she says that she loves being a visual thinker… well, ok, but 60-65% of the GENERAL POPULATION are predominantly visual thinkers. If she says she prefers not being a verbal thinker, then only 30% of the general population predominantly think verbally, so she’s enjoying being like the other 70% of the general population who tend not to predominantly think verbally either.
If she loves being an obsessive, then so do workaholics and inventors with the conscientious personality trait who have pushed it into personality disorder proportions, however constructively or destructively they manifest that.
If she feels having ASD makes her a good logical thinker, then around 10% of the general population excel in this too.
Being proud of oneself is a good thing and being proud of oneself as a person with a label is equally a good thing.
But being proud of one’s label or one’s label as the entirety of one’s pride in one’s self is different. ASD is nothing to be ashamed of, but equally, I don’t know if being defensively proud of a label makes sense either.
I use the label in association with my achievements because I like to shake up the stereotypes and give people at all levels of functioning things to aspire to, and some very challenged people with autism are also artists, musicians, poets or just talented at ‘being’ (it’s actually an art in itself)…even if they’re not all Temple Grandin’s gifted geeks and engineers.
Essentially if people with ASD are going to talk about being specifically proud of their ASD, it may be a useful exercise for them to explore exactly which parts of it they’re proud of, so they can distinguish whether they are proud of their individuality or their condition.
Donna Williams
http://www.donnawilliams.net
autistic author, artist, composer, screenwriter
Gee, you write such thought provoking stuff Donna.
And you are so objective too. A wonderful quality which is all too rare these days.
You are a breath of fresh air.
Most other people cannot help but write from a biased point of view.(myself included)
Reading your piece, I got to thinking about my own personality traits(I’m not autistic) I am sure that I have ADHD(not officially diagnosed)I have mild OCD as well as anxiety issues too.
All these traits my autistic son has too.
This is me (Furball) I don’t know what kind of thinker I am. A lot of those things I don’t know, but thanks so much FUR putting me in your furry blog! 🙂 I aggree that loving autism is different than what one thinks of themself. Again, I don’t know what I think about myself or what kind of thinker I am. I just turned 26. I took that as a compliment, the info in the blog. Another thing I really love but don’t think about allll the time is furrr!!! I just love it!
-Furball Ball-of-fur
Hellos to Kathy, Furball and Donna.
How I agree with the penultimate paragraph (the part about ASD and how one’s achievements are allied to this). For instance, I grasped the basics of HTML after two weeks intensive study. Yesterday, I wallpapered part of a room and picked up the skills after an absence of eight years!
I have clicked on the P Types link and happy to have noticed similarities with myself and the Creative personality. I’m at my happiest when independent – much to (sometimes) the chagrin of my fellows. For example, I was at my happiest today on a lengthy train journey with few people on board, a window seat, and the moorland scenery passing by. Hours later, rush hour… different story.
What makes me ‘Stuart’ is a combination of wanderlust, quest for perfection, ample drawing/writing materials and being unable to keep still for too long. 🙂
Stuart.
Very good article. I agree with this wholeheartily.
I tend not to drell on labels since they do not really adequately deascribe people. Of course in these day and age labels are required to eligibility for services and programs. When I discribe myself, I mention my strengths and talents, beliefs, and my weaknesses and differences in contexts of my gifts.
Debbie
What’s wrong with her saying that her personality is at least partly a result of her autism?
OCD falls under “mood, anxiety and compulsive disorders,” which you list as part of your autism. However, when she mentioned her OCD-like symptoms, you dismissed them as a personality trait that must be unrelated to autism because it is not exclusive to autism. Surely “gut, immune, metabolic disorders” aren’t exclusive to autism either.
She seems to be proud of some of the ways autism manifests itself in her. Therefore I see nothing wrong with her saying she’s proud to be autistic.
None of the symptoms you mention are exclusive to ASD, though, so I’m confused as to why you seem to be using that criteria to distinguish between “idiosyncrasy” and “condition”.
Personally, I think it’s hard to draw distinctions between “self” and “condition” for conditions that affect the mind / brain, and I don’t think there is an essential distinction to be made. So I can understand why people get nervous when lofty terms like “cure” are flung around, even if those same people wouldn’t mind relief from a variety of unpleasant mental and physical symptoms of their condition.
My philosophy is essentially that we are the idiots of tomorrow
because there is NOTHING that is exclusive to ALL people diagnosed with ‘autism’
and previous ‘diagnosis’ in the 1800s or ‘moron’, ‘idiot’ and of the 1940s-1960s of ‘psychotic infant’ or of the ‘1970s’ of ‘disturbed children’ have now been replaced with ‘ASD’ and we are on the cusp of finding the criteria for the label have been expanded for funding purposes and in fact we’re often talking about those with multiple identifiable conditions which when combined result in ‘autistic’ patterns until underlying conditions are addressed wherupon many become ‘less autistic’.
So this is purely a sociological exploration not of my views, but for people to explore how THEY distinguish condition and personhood. The reason is that once one has a label, unless specifically told which parts of one’s functioning and behaviour are particularly ‘autistic’ one can label any part of it as ‘part of the autism’.
This is fine, its a choice, but in proclamations of pride in being autistic, versus pride in being a person with autism, then it’s a useful forum for people to safely explore that hopefully without fear of crusades, witchhunts etc.
I think we’ve had similar discussions to this, Donna especially on ‘what’s normalcy mean.’ I wonder if, as a society, we are becoming so caught up in the importance of labels for insurance or respite purposes that it’s like a fad. Seems rather strange to me when someone mentions their child is “slightly autistic” – in a bragging tone of voice and how many doctors they’ve been able to see. It doesn’t really have much to do with money – here anyhow as our medical covg is pretty good. I remember in the mid 80’s when the fad seemed to be to have one’s child on Ritalin – yikes, the semblance to both of these fads (& to certain adult health issues) to when I was growing up seems rather uncanny. Only back then, the bragging rights-fad was about how many jars of preserves one put up or how well one’s child was doing in school! I’m glad that lady likes herself as she is – that’s more than often a difficult place to get to. (and yes, I’m still awake at 3:30 a.m. now- my time!)
When I say I’m proud of being autistic, I mean all the traits I like about myself which, though perhaps not exclusively autistic, are more common with autism. In fact, I think *anyone* with the collection of traits I like about being autistic would be considered autistic, because those traits also cause many of the less pleasant aspects of being autistic.
“I have a personality which includes almost exclusively solitary traits (solitary, vigilant, idiosyncratic, artistic and self sacrificing) which could easily appear more ‘autistic’ than many though I don’t confuse it with my autism.”
To me, that’s far more *autism* than gut, immune and metabolic disorders (which aren’t actually proven to even be more common in autism), and about equally part of autism as meaning blindness, meaning deafness and compulsiveness. (Note: I left out mood and anxiety disorders as they are in between, proven strongly associated but not considered diagnostic of autism). A sociable person with gut, immune, metabolic, mood and anxiety issues would certainly not be considered autistic, if they also had meaning blindness, meaning deafness and compulsiveness they might be considered autistic or might not, depending on who was looking. But a solitary person, like you, with those traits, is clearly autistic.
Hi Ettina,
yes, in the 60s and 70s the personality range for autism was narrowly defined and being inherently solitary was an essential part of that. But since them we have found many things can exaccerbate such a nature… chronic depression in early childhood for example, being chronically ill, lethargic and cognitively overwhelmed or having sensory perceptual chaos contributes to low levels of expression and withdrawal in many people.
And whilst gut, immune, metabolic disorders don’t apply to most ‘high functioning’ people with ASD, they are relatively common in more impaired younger children with autism…some of whom physiologically recover without treatment as part of a strengthening immune system… but others may have diets which contribute to their challenges (no kid living on flavored potato chips and sugar drinks to the exclusion of all else can remain healthy after 18 months on such nutritionally deficient and often allergenic crap)…and some have inherited dispositions to gut, immune, metabolic disorders.
Also, whilst the rate of those with cellular disorders among those with autism may be low, if you look instead at the 1 in 4000 children with cellular disorders, most will present with developmental disorders, including, in some cases autism.
Since the 1990s, personality traits figure less and less in the diagnosis of autism…. so it has changed. I have met very sociable children diagnosed with autism in the last 5 years due to their cognitive, sensory perceptual and neuropsychiatric range of challenges.
Also, although I was always fiercely solitary, mania also meant that I sang and ran and squealed and jumped so being fiercely solitary can still have a very sociable presentation, although once people approach the person may either avoid, divert or retaliate against the interaction or try and interact but appears to do so in a highly solitary manner. The idiosyncratic trait for example, can be sociable but is highly solitary…. if you go to socialise with them you end up sitting with someone who may struggle to stop drifting off into their own world chatting to themselves obliviously. So some forms of solitary can also have a relatively sociable presentation too!
if you haven’t seen The Jumbled Jigsaw, it gives you examples how various PIECES of ‘autism fruit salad’ can interact in the overall diagnosis of one world which has underlying ery different combinations in very different people with the same diagnosis.
No autistic traits are universal to autistics or only present in autistics. You can’t pick out the ‘good’ and ‘bad’ and say only one kind of traits are part of autism.
Autism is a cluster of traits that are more common together. These include both good and bad things, and many things (such as my tangential thinking style, which causes both creativity and disorganization) which are both good and bad in different settings. Just because you like a trait doesn’t mean it is or isn’t in that cluster of associated traits. And solitariness certainly is part of the cluster of traits labeled autism. Certainly, sociable kids can be autistic, and non-autistic kids can be solitary. But solitariness contributes to the autism diagnosis, just as compulsiveness, processing problems, etc do.
When I say I’m proud of being autistic, I mean that the traits I have which I observe to be part of the cluster of traits that gets called autism includes many things I like about myself. You may decide to ‘re-label’ those things as something other than autism, but that doesn’t mean they aren’t part of that cluster. And in many cases, regardless of label, certain things go together. Solitary kids tend to be compulsive and obsessive and have distinctive mannerisms more than sociable kids do. Something you think is bad may be due to the same underlying trait as something you like about yourself – the difference lies in the context. I’m a tangential thinker, I wander off on tangents from my original thought much more than most people. When trying to clean, this means I start reading or playing instead. When thinking up a story, this means I connect together ideas others wouldn’t have thought of.
Also, regarding gut, immune and metabolic disorders, whether or not they are more common in autistics of any ability level, they are much less important to a diagnosis of autism than being solitary, which is why I think it’s very strange for you to view them as more ‘autism’ than being solitary.
Actually, I don’t view the physiological as more important than the personality aspects.
However, the physiological often means health treatment is essential to avoid escalation of allergies, chornic infections, chronic bowel disorders, liver toxicity, associated neuropsych disorders when an inflammed blood brain barrier allows toxins from undigested foods to cross into the brain (go read up on these processes in mitochondrial and immune disorders before commenting back on it so you know what I really mean)….and personality doesn’t need treatment so much as environmental adjustments, helping all to come to terms with the place of certain traits in social diversity, helping people channel traits into places they were more for them than against them… both are important but leaving sick kids sick, that makes no sense. Understand this is NOT the same as saying most people with autism have these issues but until you have met those in this situation, you don’t actually realise how much having chronic mental confusion, malaise, agitation, discomfort from health related issues contributes to giving up, giving in, retreat into one’s own self hypnosis just to wish oneself away… and nothing to do with being unloved either…. just imagine you got a virus, it messed with your brain, nothing seems right, you feel mucky and not with it…. not imagine that went on and on at greater or lesser levels your entire life… how would it effect your already solitary nature? Basically, it exaccerbates it. Yet accomodating that solitary nature won’t treat your health disorders (and to give you some idea, primary immune deficiency is still thought by some docs as untreatable, they are still just putting kids on permanent antibiotics until they ultimately become immune to them and die of infections, usually by their 30s rather than considering immune support….which specialists are just NOW using…. but if you aren’t involved in that area you wouldn’t know the challenges these families face and why they end up in the hands of quacks). Hope that helps you understand why both sides are important.
Your latest comment doesn’t seem to be much of a reply to me.
The way I see it, you can treat the medical issues, and you should, but they’re still autistic.
Autism is defined by a set of traits – solitariness, unusual pattern of interaction, intense narrow interests, need for routine, distinctive motor mannerisms, focus on details, echolalia, not speaking and/or difficulty carrying on a conversation. If you have enough of those traits, you are considered autistic. Some can be exarcerbated by stress, such as illness, but treating the stress doesn’t make them go away (in fact, I think psychiatrists would say if the trait was entirely due to stress it’s not autism – for example, post institutional syndrome can look like autism).
You said:
“I have a personality which includes almost exclusively solitary traits (solitary, vigilant, idiosyncratic, artistic and self sacrificing) which could easily appear more ‘autistic’ than many though I don’t confuse it with my autism.”
By the standard, agreed upon definition of autism, that is part of autism. In fact, a solitary idiosyncratic person, with no other autistic traits, could be diagnosed either PDD NOS, schizoid personality or schizotypal personality, depending on who is doing the diagnosing and the specific behavior involved. Certainly, I’d consider such a person as having significant autistic traits, even if they aren’t techincally on the spectrum.
It seems like part of your definition of autistic traits is ‘if I like that about myself, it’s not part of autism’ which is illogical. You don’t overtly state that you use that as part of defining autism, but your argument that traits present in non-autistic people as well aren’t part of autism seems selectively applied. By that definition, meaning blindness and meaning deafness are certainly not part of autism, because non-autistic people can have visual or auditory agnosia (for example, Clay in When the Brain Can’t Hear, who had severe CAPD). Neither are gut issues, immune problems or metabolic disorders because they are present in people who are certainly not autistic. Mood, anxiety and compulsive disorders are certainly present in non-autistics – you yourself mentioned OCPD which is one compulsive disorder.
I guess I see the potential for ‘autistic’ (the adjective) in all people.
As for autism, the condition, I see that some personality trait collectives will continually respond autistically to chronic stresses and in some this will pattern their solitary and conscientious traits into disorder/extreme proportion levels so that they will function autistically on a relatively on going basis.
🙂
I also agree that whatever other parts of my autism fruit salad I have addressed and balanced out and managed, I remain, essentially an autistic person by nature. There are environments where it is endangering to be what others would abuse and so, in those pathological environments I have desperately hidden as much of my autism and autistic nature as possible. These days, however, I avoid such pathological environments in any ongoing way for they are a path to true despair, and that is deeply deeply unhealthy.
Choosing to not fight persistently at every turn to act non-autistically (and we have enough TV shows to mimic all that by adulthood if we are in enough endangerment to be highly motivated to do so) is not the same as choosing to act autistic, it just means one hides less of one’s systems, one’s adaptation and strategies, one’s autistic nature.
I am holistic in my thinking, and very fluid… do you know Einstein had the Idiosyncratic trait and is listed as an archetypal example of it… this trait is the one capable of complex holistic and fluid thought…anyway thinking this way is not necessarily any form of avoidance or denial but those without this trait may puzzle at why I avoid boxes. The idiosyncratic trait is also be nature stressed by expectation to conform, motivated by non-conformity, perhaps this feeds the fluid, seemingly aloof, nature of my replies. I certainly don’t mean to be frustrating, nor am I avoiding facing truths, its just my WAY in which I do them is frustrating to those without this trait who may work n a far more black and white reality where my thinking is more like labyrinths and confetti.
On my website I have some art in a category called Neoteric… it may interest you.
🙂
I’m back after a few years. I’m amazed that all the comments on here are good. I was mad at first about Donna’s (your (I’m not sure which style/form to type it in)) interesting thinking. I thought it was “denying” the combination in the all-together form as being something on the autism spectrum. Now I re-“read”heard the blog entry and the comments after actually finally experiencing the combination of hypomania and furringly-excited already stimming. It actually adds on to the excitement that is already there when I bang (not too hard) my forehead into fur. It’s even furrier or something (the experienced mental feeling).
Before I denied the thought of stimmed excitement as being hypomanic since I wasn’t at the time and I still got overly excited. It’s amazing what is changed/found out about in a few years.
Now I wonder about the amazing symptom combination of autism and bipolar. I think bipolar brings up new ASD things or it could temperarilly remove them then good thing they come back. I ended up having meltdown/panic attack combinations or sepparately. I like those. I’m still trying to get the after-affects when there’s the meltdown (where I hit my leg(s), make my usual sounds or try to run/escape the room/area and even want to be around only 1 or 2 people) which the panic attacks (where nothing is as autisticy and I make panic attack sounds instead and maybe no after-affects)… I’m still trying to get how the amazingness of that happens. I think bipolar adds on to it or like the after-affects probably adds or combines or something.
One big meltdown’s after-affects brought back the fear of brown (I used to have vision in one eye) which was amazing and it brought back the not wanting to be touched. The confusion came up when Dad said I also didn’t like being touched when I was at my maniciest in 2005. Unfortunately there are some manic times I had no memory during that October in the hospital. It’s an overly long story.
An example of taking away was before I went to the hospital, and the small amazing delay in reactions like answering questions or replying to people wasn’t there.
There’s also my “autistic mode” where my speech is kind of sepparated where it isn’t normally so it seems slower than it is. It’s amazing only another ungotten thing. It happens during or after an overload or in the after-affects of a meltdown even a short one. I’ve had one where there weren’t after-affects which was still amazing. The more autisticy after-affects happened last August where I only hit my leg for under 5-10 seconds then I noticed I was waving the top (bottom of my arm facing up) of my arm around. I didn’t talk as much and it was harder for a staff member to get my attention and like mania/included I was stimming with my hand on the chair (after sitting down) faster than I usually stim: and it wasn’t even stimming material (furry or soft). She told me to use my words where I usually do. I even moved my right hand and tapped her to get her attention where I would usually say something, and I came up with 2 signs like sign language only my own. There was 1 left-to-right one which meant bad and one where I wave/raise my hand for Yeah!. After that I was talking in my autistic mode.
The only problem is that when I suddenly was back to regular in not even a milisecond I noticed my awareness/consciousness was a little more there/back where I didn’t notice it unfortunately leaving that tiny bit when it happened. That is probably a manic part to it.
-Furball