An Invitation to Know You Are an Aspie?
by Maurice Frank
This is a reflection on how aspies cope with the inconsistencies of diagnostic guidelines. If you are looking for a reassuring simple explanation of Asperger's you may prefer not to read this, just stick with web pages that are simple. But if you are confused whether you quite fit its criteria - in which case you do fit them, in fact! - or you are worried about satisfying doctors, or you have read conflicting information, this is for you.
Please know that aspies gather in groups, both on the net and in real life, without having to fit in with diagnoses. All autistic spectrum disorders, but particularly AS with its imprecise criteria and its varied nature, are journeys of discovery: there is always something surprising to learn from other people, like sensitivity to sound and light or needing less sleep in childhood, that you never knew before were part of the condition. In AS, and ADHD, I have both, the conceptual richness and variety of what there is to talk about in groups is quite magical, and not at all like a health support group for a simple physical condition. The people themselves can still include cynical jerks same as any other section of people can, I've seen that, but for the decent ones it's about finding different ways of relating socially, unlike the intolerant and unthinking ways of the normal world.
So it's lucky you don't now need a doctor's say-so to join in the world of the spectrum. Many workers on autism and organisers of groups are concerned at the unfair difficulty of access to diagnoses because of lack of understanding among doctors, of newly recognised conditions. There has been injustice in AS's slow rise to recognition: the first step was to have psychology acknowledge it exists, then diagnose a small number of people whose condition existing psychiatric ideas weren't good at explaining, then gradually reach a critical mass of realising AS applied to a wider range of people, before the public started to hear of it and groups started to form.
A natural next question was: what should groups do? Should they talk about AS or should they organise social activities with the motive of therapy for the uncommunicative? Of course this still varies from group to group, so you have to find the right one. It sounds natural there would be an instinct for the earlier groups, existing a few years ago, to choose the therapy route, but experience has shown that the discussing AS route works better, particularly for the many aspies who are full of intelligent ideas. Not everyone wants therapy, and therapy orientated groups can get into duff positions of not wanting to recruit the more actively thinking type of aspie. The message must spread to all places that the talking type of support group does work - and not only for aspies who want to talk. I'm totally incapable of light conversation and only open up to serious topics, and that's great, because this is about us being ourselves, no agenda of making us be normal. In fact, I have seen withdrawn types of aspie who don't like talking at all, who will sit through a group in total silence just listening to the others, then leave looking really pleased they were there and with a sense of belonging. I think that's wonderful. Only the autistic communtiy would realise such a thing works.
There is no need to miss out on your place in it because you don't have every feature you read that aspies have. You cans till join the intelligent talk based types of group, and you may confirm your aspieship by it, like me!! This is a missionary thing with me now. After aspies' proud social image of nonconformity first became really known, and remember that was still only last year, I was stuck in a quite foul frustration: knowing I was conversationally impaired and have been sticking out against the crowd's views all my life, knowing I had most of the AS features and could reasonably fit DSM4 and the image really fits me, but - inconveniently, I don't have any trouble with understanding metaphors, I don't take everything literally, and am quite normal at reading facial expressions. When I can't stand humour, which is often, it's through taking it seriously, not literally. Don't think I have any "conceptual impairments", in fact. So I couldn't be an aspie, because all the descriptions you read paint it as essential and defining for aspies to have those problems.
So why should aspies be allowed to say all those wonderful things about themselves, as if everyone who thinks like them about social psychology just conveniently happens to have the right problem with metaphors and facial reading too? There could be tons of really nice people on the edge of AS and deserving involvement in its scene, who are like I was just a few months back, unable to count myself aspie and telling people in good faith that i'm not one, while trying to explain there were still a lot of shared traits and calling myself "aspoid ADHD" in recognition of the 2 conditions' closeness.
For, okay I was already on the spectrum by having ADHD, and there is some ADHD pride out there, see Ray Reinbolt's website www.lifeconcept.org . ADDers always seem more introspective about discussing drugs and forgetfulness and have not developed the message of a different view of socialising that aspies, whose condition relates more directly to that problem, have developed. Adders have the right to feel included in the autistic spectrum message of difference, but how can we feel included when there is still bigot resistance to accepting ADHD in the spectrum? You can recognise bigots by their catchphrase "I think you have to recognise the differences", and to me it's like anti-semitism. It's a group prejudice and institutional conservatism, for workers who don't like new ideas to spare themselves learning about another condition. It's a total test of the morality of aspie pride that it shall have nothing to do with a sectarian attitude between AS and ADHD, when they are so similar in sensory and metabolic issues and spacey headedness and impaired intake of what others say. The skin sensitivity and active metabolism that lies behind my year round wearing of shorts can feature identically in both conditions, and is a pretty clear illustration that ADHD is on the spectrum.
Anyway, if you think you are not quite an aspie, please refer to my experience to feel sure of your ground in making contact with aspie groups, when you find them of course, because they are there to cover aspie traits and they include people who can't get diagnosed, etc. When you get to know aspies you will see very quickly that no writing on essential features should be read as a rule for everyone, and as they told me, none of us have every feature. It took the effort of finding a group to hear their reassurance that the trait of taking things literally doesn't matter or change the social signs of aspieship, and that I am an aspie. It was that easy: just step into a group and all obstacles are gone and I'm an aspie, my place in aspie pride was waiting for me to find it - after ages of fishing for anyone I contacted to tell me it and none ever would. How would you feel about that? People who I told about AS traits must have guessed the whole condition was really there: were they all unsure of their facts about the features I don't have, or all legally paranoid about expressing an opinion of probability in writing? It could be another problem: the mess diagnosis is in. This is what I find on the net: telling people I'm an aspie but don't have the problem with taking things literally, is accepted as totally sensible without objection, but in the old days, telling people I'm not aspie on exactly the same basis but had traits used to be accepted as equally sensible. people are not aure enough of their ground to argue with your overcautious self portrait, except when you meet them in groups.
That no one specific problem is compulsory to AS is the top thing that right now needs making better known. Doesn't it get rid of nonsense like PDD-NOS, the "not otherwise specified" label given to anyone who psychologists trying to keep AS within more exact boundaries than it really has, will give to people who they meanly don't want to diagnose as AS but can see are on the spectrum. Abolition of PDD-NOS is called for in the book The ADD-Autism Connection by Diane Kennedy which united ADD/ADHD with the spectrum. Yet at the same time there are disagreements whether there is a difference between AS and classical high functioning autism!
It's astounding that a figure like Tony Attwood should think theere isn't a difference, while less known authors who muddle up the 2 conditions and call HFA folk aspies can get really vicious book reviews trashing their credentials: seen some examples on the net. As classical autism has been realised for a lot longer than AS, where would the separate idea of As come from unless there is a difference? If you read an HFA story like of Alex Mont, unable to distinguish morally between lies and games without a rigorous explanation, that's not typical of AS. Aspies are not classical autistics gone mysteriously undiscovered. It only takes a little reading to dig out that the difference lies in HFA meaning that total a lack of social instinct or problems developing speech and language use. But, as aspieship is not to be denied to anyone with a collection of traits, and knowing some people on the net count themselves both AS and HFA, it makes sense a person could have both.
Opposite is the case of aspies who can't stop talking, literally at all, and in a group you are stuck there for 10 minutes hearing him out and drifting far off the original topic before you can speak. This seems like an involuntary Tourette type compulsion, and I think, from experience, it's absurd to count a person with it as having the same condition as aspies who, whether talkative or quiet, have a workable ability to stop to give you a word in edgeways. Non-stop talking should have its own name as a condition even if its sufferers have AS as well, and social skills activities for them should be a bit different, perhaps with a one-to-one conversation, though taking care not to offend them if they want to be included in a multisided one.
Wherever you are, if aspie group life has not reached you, know it is growing. Don't give up on it if 1 wrong type of group ever turns out badly: the wide scope of AS's traits is tipping the balance in favour of aspies organising our own society. I have been hurt by 2 internet groups, whose agendas were more about the politics of diet or parents wanting too much power in home education, than about AS, and I fight back at every opportunity, I don't walk away acceptingly. But their self interested nonsense is not in control of aspies. The prospects seem better in intelligent groups focussed on autistic conditions themselves, instead of on other causes, and where good or bad experiences of all things to do with the spectrum can be heard. So jump in, help aspies' momentum to grow now our moment is here. it's amazing to be in the first generation of self awareness of a minority who indict normal social behaviour, but it would have been nicer not to grow up in the Dark Ages. That's what all of time before say 2001 feels like now, you never want to return to it.
Maurice Frank - August 2003