Autism forums
Disclosure by Donna Williams
General social forums for adults on the spectrum are different to the primarily pride related, often more militancy oriented forums. I think adults on the autism spectrum are often relieved to realise they are not crazy but proud they are not crazy is a whole other level… especially militantly proud. ‘Proud’ is an emotion associated with inflation. ‘Relief’ is not.
The Aspies I meet in the physical world are generally shy of their diagnosis, some are embarrassed to mention it overtly or just desperately want to ‘just be people’, make no biggie of it, not make it a central feature. But I’ve met others at big autism conferences who seem far more militant. As a public speaker at these I’ve had them come in in their dark glasses and Schizoid poker face expressions walking in a team as one as though they are Borg and take a seat away from all others in the front row, placing bags to block the chairs either side from others sitting with them and then crossing their arms as if they are the gestapo there to vet how politically correct I am in terms of their culture/pride politics – no kidding! I’m sure these folks have little idea (or motivation to care) how one size fits all and scary this can seem. Fine if you are seeking to join a movement, don the ‘uniform’, and bleat the party line, but I’m hopelessly idiosyncratic. The Borg dynamic just doesn’t fit me.
I find extreme differences between those I meet in real life who have never adhered to the online culture thing and those who are deeply immersed in the online culture thing. I do think one can actually have AS and ALSO have turned into a badge wearing, T-shirt touting ‘I AM AUTISM’, ‘I AM AN AUTISTIC’ sort of poster child for the pride movement. But I also think there’s plenty who don’t have AS who are very quick to join any newly popularized label or cause that gives them an instant checklist identity and paint by numbers dictate of how to ‘do pride’.
Refusal to be ashamed is not the same as being proud. I refuse to be ashamed. I invest my pride where I feel I’ve worked hard and achieved something very difficult. I don’t invest in pride for the sake of self inflation because that is flimsy, destabilising, removes me from where I’m really at… it un-grounds me.
I certainly advocate when its important to but I advocate what is relevant, no more than that… ie… oh, I’m face blind… or you’ll have to slow down, I’m rather meaning deaf (verbal agnosias)… or I’m context blind, I grew up seeing everything in bits (visual agnosias)… so otherwise I don’t feel I need to explain my personality as we’re all different… sometimes I’ll say… its a good thing we’re all different, eh… otherwise we’d get bored with everyone being exactly the same. Sometimes I advocate about tics or stereotypies (which I pass off as tics… I have both) and will just say… don’t worry, its just tics… brain stuff… I’m still in here… still a person… my head hasn’t fallen off… is yours ok? Or if my speech tumbles or I can’t retrieve words well or my stammer steps in or my speech has become telegraphic, I’ll say oops, flat language batteries… bad language day.
I’ve also met those who join Aspie groups with agenda to identity-shop, to explore the ‘culture’ (condition as culture) and there’s those who welcome it and those who don’t, sort of like straight people entering the GLBTI world as ‘curious’ then ‘realise’ they just might be x or y or z. I don’t mind tourists but I won’t be part of the zoo they’re exploring.
I’ve known one person who gained curiosity in the Aspie world based on stereotypes of socially disadvantaged geniuses and who already have business ideas lined up, to supply themselves a wage. This person first needed to immerse themselves in the autism circles, align themselves with the movers and shakers, create a profile for themselves as ‘autism friendly’, then they mirror those in these groups, intrigue an Aspie enough to get a ‘peer diagnosis’ and ‘come out’ as self identified Aspie, then strive to market themselves with their business plan. Gather a disadvantaged group then apply for grants and funding and you’ll certainly have a better chance than claiming you’ll go gather them once you have funding. They had a history of failed projects and schemes and credit card debt of over $100,000.
Autism is a booming industry for both the curists and any ‘Aspie’ entrepreneur with a new service. I hear regularly from those both identifying and newly diagnosed with AS who want to use their diagnosis to start an ‘advocacy business’ but as soon as I mention they’ll actually need a professional qualification and experience based on that professional qualification I have been slammed as ‘jealous’ of what they have to offer the field, I have then been ranted at re how dare non-autistic people expect the same professional standards from them given they have the ‘qualification of living with the condition’ or I’m told how they already know everything they’d get from such courses or could learn it all in a week or few months by virtue of their immense IQ.
One women, who was already a New Age counselor, had been through her dolphin, unicorn, angel phases and had entered her autism one. She felt she was a reincarnation of an autistic boy and so had an inner map of autistic reality. Feeling a calling to utilise this reincarnation to join ‘her people’, she so desperately wanted a diagnosis as validation she drank 15 cups of coffee to ensure she’d be sleep deprived before the assessment and of course so impressed them with her subsequent agitation, anxiety, distractability and impaired information processing she got her diagnosis of AS. She immediately went on to utilise this as a qualification for expanding her business into the autism field.
I know of others who self identify who write that they enjoy their ability to contribute to shaping the definition of AS through participating in as many online surveys and studies as they can to ‘advance the field’. But in which direction and according to whose reality? Should they have to have a formal diagnosis before helping to shape a new definition of AS and how those with it experience it? In a world where people will hatefully fight any questioning of a self diagnosis or peer diagnosis as ‘elitism’ it is likely that soon any info derived through online studies will have to consider this may be what their participants deem as an affirmative to the criteria of ‘are you diagnosed with autism?’
Are people faking AS? Do they have subclinical AS? Do all humans have some degree of AS and if you fixate on those elements enough you can imagine you have AS? If we talk neurodiversity, then these people ARE clearly as neurodiverse as any, autistic or otherwise, so does it even matter?
This is the urban dictionary, not Webster, so it’s as rude and bad mannered as the Urban dictionary tends to be but surprisingly, it has a category for Aspie which, like it or lump it is reflecting how Aspie is being seen ‘out there’. Suggest anyone is faking and watch the sparks fly and the heads roll. There’s some fearsome emotions invested out there.
As a lurker 😉 I took one look at the collectivism, the entanglement, the hierarchy, the competitiveness, the conspiracy mentality, the militancy, the narcissistic self righteousness and co-dependent pandering in the autism pride forums that I decided I’d leave pride for those who needed it. As a Taoist, pride seemed rather imbalanced, as a Taoist with Buddhist leanings, humility seemed so much more important.
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
Interesting to read your opinion on this, although I have to say I am mildly offended by it.
I am proud to be who I am. I am relieved I finally found a diagnosis that fits what I have been suffering from all my life. I am not proud to be an aspie. I regard it as being a handicap. I my opinion being proud of it would be like being proud of having no legs.
And you may be right that there are ppl out there who just want to belong to some minority. The great thing about minorities is that you can always find at least one you belong to.
I have felt that I did not really fit in since I was 7-8 years old, and I’ve had many problems with this over the years. In school I have had some really bad years (not all of them and not all the time), and at some point before I reached 20 I promised myself that if I ever had kids, and they turned out to be like me, then I would simply take them out of school if they didn’t thrive.
Then I got a son, and it turned out he had some problems. He got his asperger diagnose in a rather early age and in the end the psychologist who lead the examination process said that after our first meeting 1½ years earlier she was pretty sure they would end up with a diagnosis on the autism spectre because of things I told about myself at that meeting. She also said I ought to get a diagnose myself, because adult aspies could have a bunch of difficulties living a “normal” life, and she thought the diagnose could help me.
I got a diagnose, but not a real good one. As you say it is easy to prepare for getting it. That psychologist recommended I got an examination a certain place where they examine pretty thorougly but then I had to come up with 7000$ instead of getting a free low budget diagnosis through public health care.
After that I have been through 2-3 years of rethinking myself. Relief, regrets, sorrow and so on, and during that there has been times where I have told about anybody I met that I have asperger’s. I think now I have come to terms with myself and I am pretty much back to regard myself as I did before I got the diagnosis.
I think in your writings above you completely overlook the fact that aspies have poor social skills. Aspies can have a very poor concept of what persons are, and one thing I believe aspies do often, is keep talking and talking about something they are obsessed with themselves. We can completely forget that other persons can have other interests and completely other ways to regards things. And this goes for other aspies too.
Combine this poor social skill with what Atwood calls an “arrogance/denial strategy” of coping in his complete guide to asperger’s, and then you have the aspie who keeps babbling about being an aspie and falling into that “them and us” thing.
You say you are a Taoist and humility is so important. A funny thing I see with humility is that the moment you want to impose it on others, then it quickly becomes a paradox. Then it fades and becomes vanity, or even arrogance/denial.
So let me try to sum up what a non faking aspie is according to you:
– a real aspie is someone who never reveals they have this syndrome. Instead they reveal the necessary ‘bits’. This is basically how I have come to understand NT’s do it. It is sort of a key to successful social interaction. And furthermore this is how you do it.
– the real aspies you have met are shy of their diagnosis, maybe even embarrassed of it and they definitely make no biggie of it. In other words, they are humble, just like you wanna be.
Real aspies are… like you. Well, since this pretty much means to me that you do not have a really god idea of the diversity of people in general, I am for sure ready to believe you are an aspie. But I also believe you are more vain than humble since you have created a concept of aspies in your own image.
I just stumbled upon your blog by accident, and I have never heard sbout you before. It seems you have a really good thing going for yourself as an author of many books, you have many websites and you are even a public speaker, and I think you are lucky because of all that. This means that you get in touch with many aspies, both the real and the fake ones, so you have a lot of experience with all these people you have met.
But I don’t think your personal experience is sufficient for jumping to the conclusions you make here. And a link to the urban dictionary does not really count as evidence for anything. For all I know you yourself could be the author of that description.
I’m diagnosed with autism. My original diagnosis was by a hospital, aged 2, after 3 days as an inpatient for observation. The diagnosis was in 1965, as a psychotic child – yes, age 2, that was what autism was in 1965, childhood psychosis. So I’m not diagnosed with Aspergers. I know many people with Aspergers with the same issues as you, relevant, real issues. I do not identify with them or as them. I have meaning deafness, meaning blindness (agnosias) most of them do not have, gut, immune, metabolic disorders most of them don’t have and have lived with mood, anxiety, compulsive disorders most of them don’t have. What I write is largely satire. So projecting personal judgements onto me about my writing here is rather futile. What do I believe? I believe that identifying with Aspergers is different to having a diagnosable medical/psychiatric disability or developmental disability. I also feel those who fit one or the other should ultimately be able to identify which they fit. As for me, I fit autism with brain injury, health disorders and additional PTSD and co-morbids. So unless you actually personally know me on a day to day level, its best not to project things onto me, and personally, as I don’t know you on a day to day level either, I’ll assume you’re also not an arsehole 🙂
Ok. Then I will assume you are writing a form of satire I do not get. What can I say? I am an aspie so I don’t get that kind of stuff. I take things too literally 😛 Or maybe I am missing some subtle hints in the language since English is not my native tongue.
I did not make a complete list of what problems I am dealing with, and I have not been aware of my condition for that many years, so I don’t really know what problems I have that can be related to ASD. And since the psychologists’ studies are still very young, I guess they don’t really know either.
If meaning deafness means you have problems understanding what people are saying if you don’t get any visual cues, then I am familiar with that. For instance I can listen to a song I like for years, I can easily learn the lyrics by heart and sing the song. But I need to read the lyrics as a text in order to really get what it is about and reflect upon it. I don’t know what gut disorders are, but every now and then I get a really bad feeling in my stomach, and my ex used to say I always had problems with this. She also always pointed out I am doing some strange thing with my hands. And – especially when I have been lacking sleep for some days – I can be a ticking bomb exploding with anger over something.
I said I am proud of being me. I am not really all of the time. Sometimes – and this usually happens when I am having some conversation – some really bizarre or inappropriate thoughts and images are popping up in my head. I think this is like something I have read about OCD. This is so bad that this will probably be the only time I ever mention it. This I am really ashamed of.
Anyway, I know that “don’t mistake the messenger for the message” thing, but I do not really agree with it. I think that a text is always a product produced by an author. I also think that the term satire can be used to disclaim responsibility of some author or editor’s opinion. And I think that making assumptions or judgements about an author when reading a text is inevitable. An example of this could be that in your reply above you make assumptions about my issues. Of course assumptions, judgements and perspectives changes the more you learn about something, but making them is in my opinon necessary in order to produce any meaning at all. If one looks at the words for producing meaning in a cognitive semiotic view, then the necessity of making assumptions or judgements lies implicit in all of the words for it: “grasp”, “comprehend”, “understand”. We should be happy it is so, because if not, then the two of us would not be able to communicate in a meaningful way since we have never met. This also means that one can’t really make some statement and then claim that people shouldn’t judge you because they don’t know you.
If we need to know each other on a day to day level in order to get the “real meaning” of each others writings, then how many days do you believe would be sufficient, and for how many hours each day? 😉
do not be ashamed of compulsive thoughts in OCD… a Cognitive Behavioural Therapist would work with this or you could at least learn more about it on You Tube for free. It is manageable through self training but usually also caused by high dopamine and low serotonin but medication alone usually isn’t as successful as CBT (Cognitive Behavioural Therapy) is for OCD.
as for knowing a person enough to make personal assumptions about them, depends on the person… I don’t feel truly known by anyone who hasn’t had regular face to face contact with me for two years. I take around 2 years to get to a point I become more than helpful and start to trust them with knowing me personally. Other people take 3 mths to reach that point. But knowing a person online, or through their musings as a writer, is not really knowing them. And this particular article was written for a particular reason, namely cyberbullying and people so ferociously political in their ‘pride’ they tended to harrass and exclude and denigrate anyone on the spectrum who didn’t fit their agenda. So actually the article was written to support the wider diversity of people on the spectrum who are not completely identified with their autism or experience some of it as disability or just don’t over invest in pride associated with a label etc. No more, no less.
Donna,
I have attempted to seek support on one of these forums and found it to be a horrible experience. It is not a supportive or helpful environment at all, but very much as you described. Certain persons bully and control the forum with there own agendas (including political and religious agendas) and the overall feel is not one of learning how to better cope in the world or with life, but how to insulate and protect ourselves from the supposed attack of the “NT’s”.
I joined this support group online support group because I have no insurance and can’t get therapy and there are no local in person support groups for High Functioning Autism. I thought it might help learn better skills so I could cope and maybe find employment and then move on to therapy that would help even more. There is a great lack of therapists in my state (Illinois) that work with adults with this. I have found a resource that may help me find employment.
I feel very lost now. I am 42 and I do not know how to keep struggling with this on my own. I have made some strides, but I also keep losing so much. Do you have any suggestions? Thank you.