Comment on ‘Asperger’s Syndrome is not an excuse…’

I read a post this morning that got me thinking (now removed, but was about someone’s concerns that a person they knew might be pretending to have AS), and what follows are my broader thoughts around this issue generally, not specifically the situation they described.  I had not previously considered the fact that the speed at which I lapped up my Asperger’s (AS) diagnosis might lead some people to suspect that I had jumped on the proverbial band-wagon.  I am not sure why someone would choose to say that they have Asperger’s, given some of the problems and reactions it can create, but then I guess Neurotypical (NT) people might get something out of it that I can’t perceive.

I self-diagnosed before my official assessment, and this occurred so rapidly (I had only read one article when the penny dropped) that I guess it could be seen to be very quick.  But as to whether it is too quick, I don’t think so.  Asperger’s is one of the few individual differences that you can go your whole life without knowing you have, but which has a significant impact on every aspect of your life.  When you receive a diagnosis as a child you grow up knowing that you are different.  You may not appreciate exactly what that means until you are older, but you probably have a parent or another adult advocating on your behalf, and explaining things in a way that you understand.  Your diagnosis (unless hidden from you) does not come as the same bolt out of the blue.  But if you receive your diagnosis as an adult, perhaps like me after 10+ years of adult life, and without anybody ever suggesting it as a remote possibility, it can be an immensely profound and life-changing moment.

As soon as I realised, *everything* started to fall into place, my brain *immediately* and frantically started reframing everything, going over every part of my life, everything in my past that had gone badly, all the things I struggled with and didn’t understand why, the things I assumed were my fault because I was weak, lazy or just not good enough.  And it’s not only me, very recently I have watched a friend go through the same thing.  Within 24 hours of her moment of realisation she had reassessed her relationships with her family, her partner, her children, they way she lived her life, her job, her choices, so many things because everything looked different immediately.

For me I continued this process for months and months.  I was obsessed.  Asperger’s, and my Asperger’s in particular, became my new special interest.  I read everything in sight and talked to everybody I knew about it.  There was so much to process with my new-found insight, so much to revisit.  I had to train myself not to bring it up in every conversation I had with every person I encountered.  I had to learn how to differentiate (if possible and appropriate) where the Asperger’s ended and I began, what was due to my different way of thinking and my difficulties, and what was due to my personality, upbringing and experiences.  In my house, my (unofficially diagnosed Aspie) partner and I have borrowed a phrase from special education, “Naughty, not Autie”, to call each other out on things that we are blaming on our Asperger’s, but which we are just trying to get away with.  It is an affectionate reminder to ourselves and each other that despite having Asperger’s, we are first and foremost people!

So anyway, the reason that the post got me thinking was that I really, really hate being questioned and second guessed about my diagnosis, who gave it to me, whether they were ‘qualified’, whether I’ve had a second opinion(!) etc (I mentioned this in yesterday’s post 10 things not to say to someone with Asperger’s).  But I also really see this person’s point of view, I too would hate to think that there were people pretending to be neurodiverse just to gain some advantage (although I still can’t see what that would be, living a life of pretence is just about my worst nightmare).  If someone feels they need to pretend they have AS when they don’t, then it suggests that they do have issues, even if they are not because of AS.  In general, I don’t think healthy NT people live an Asperger’s life for the fun of it, or just to get free rent and sit in their room all day.

Such a person would (I imagine), irrespective of official diagnoses, still need support and understanding with the difficulties they are facing.  There is already so much disablist propaganda at large in the UK at the moment, newspaper stories about ‘scroungers’ and ‘benefit cheats’.  Suspicion of and hate crimes against people with all types of disabilities are on the rise; I do not want people within the autistic community viewing each other with the same suspicion.  If this person does not have Asperger’s, then they will soon self-diagnose with something else and move on, and people whose lives are genuinely affected by autism will remain, here for each other.

© Catastraspie, 2012.

the spectrum...

the spectrum... (Photo credit: Norma Desmond)

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23 Responses to Comment on ‘Asperger’s Syndrome is not an excuse…’

  1. AspieSide says:

    I recently had someone on twitter make a comment about how Asperger’s is the new black and something about how I should be who I am and not try to be fashionable. It was actually very upsetting for a bit since I am self diagnosed and trying to get an official diagnosis so that I feel authentic. Although that is proving to be difficult where I live so I may always be self-diagnosed. Which is fine. I am not trying to get any supports although I would like some understanding and acceptance from my employer. Like I don’t mean to be fidgety in meetings. I can’t control it!!

    But yes with self diagnosing I did go back and re frame many things. How various social interactions have been difficult. Because I am well into adulthood I have done my best to adjust to others. It is very helpful to now be able to logically think through why I am having an issue. It helps me be able to adjust better. I would like my son to live in a world where people adjust to him a bit more than I have to adjust though. Just saying. And sorry if this is a rambling comment- i haven’t had enough coffee yet.

    • catastraspie says:

      I’m sipping my third coffee right now!! Thank you for your comment. Yes it can be really hurtful when someone implies that diagnosis is somehow self-serving rather than being about self-understanding, so I’m sorry to hear about that tweet. It is really difficult to get an official diagnosis as an adult. I don’t know where you are based, but here in the UK it is very hit and miss depending on how old your family doctor is and whether they have expanded on their training around autism. I had to pay privately for mine, and a friend of mine is on a waiting list for a year to see someone for an assessment on the NHS. I agree that having that black and white bit of paper does help with employer understanding, although I also used this book, which was written by a colleague and is very cute http://bit.ly/HJWSxQ I disclose fully at work because it makes things less stressful for me and I don’t get so embarrassed doing the things I need to do (or crying – I do that a lot!) 🙂

      I would also like your son to live in a world where people were willing to do more adjusting. I think blogging is a great way to help people understand how to meet us in the middle, because sometimes it’s something so simple and easy to do, isn’t it! All the best.

  2. Mados says:

    Thanks for your great post. Re. researching Aspergers/autism obsessively and making it your new special interest… I guess I have been doing that over the past few year/s. I am not diagnosed, neither am I self-diagnosed. I had a ‘wow, this is it – that explains my whole life!’ experience when I first came across Asperger’s Syndrome when searching for information about noise sensitivity (big problem) and the search kept leading me into autism forums. Then I read other things in there and realised that many of the issues & mysteries I’ve struggled with (social ‘alienness’, don’t get social chatting, couldn’t cope socially with school and work e.t.c) and weird youth history with social isolation and obsessions may be characteristic of (female) Asperger’s Syndrome. I went on to take some online questionnaires and they all landed me on the AS side of the threshold, and I had a period of time where I felt certain that ‘that’s me!’.

    However, rather than self-diagnosis, the next step that followed was second thoughts. I took note of every trait and everything i did and can do that does not fit into the ASD characteristic. I also started to see a lot of contradictions in the descriptions of autistic traits and then: confusion about what defines ‘normal’.

    Also, while I read some very engaging and insightful ‘aspie’ blogs written by great people, I am put off by some of the autism community/advocacy jargon. Particularly the stereotyping of ‘NTs’ and the binary, political lines between diagnosed/self-diagnosed, HF/LF, autistic/NT… As if traits can only be defined in polar opposites and as if it is great to create uniforms out of them and pet each others’ backs all the time and say ‘yes, you definitely fit into the uniform like the rest of us, congratulations’. Very political and social and exclusive and tribe-like in its own way. All the stereotypes and tribe-jargon makes me feel like I don’t fit into any of those categories (neither aspie nor NT), and that my category is missing (if it exists).

    • catastraspie says:

      Hi and thanks for your reply and very interesting comments. I think my mum feels like you, that she is neither Aspie or NT but falls somewhere between with some traits. I know there is debate about whether it is a binary condition, or whether the ‘broad autistic phenotype’ makes it more of a true spectrum. Whilst I try not to stereotype, I find it helpful to use the term NT because it is short hand for ‘person not on the spectrum’, and my brain is so systematising that it likes to put people into boxes! Not in a negative way at all, just in a ‘so this is who you are and this is what I should do to best relate to you’ sort of way. I find the politics difficult to get my head around, far too subtle for me, and it is just another thing on the list of stuff to worry I might put my foot in it about! I see how it could be exclusive for people who already struggle to be included (is that irony? I’m never sure), although I have to admit that I like feeling as if I belong somewhere at long last.

      • Mados says:

        Thanks for your reply:-)

        My brain is very systematising too, and doesn’t like stereotypes because they creates too many problems with grey zones and biases:-)

        A psychologist I talked to (very competent, specialist in ASDs) drew a spectrum with one end labelled ‘systematic’ and the other ’emotional’, and then the normal distribution in the middle. He then placed ASDs the ‘extreme sys’ end and drew a diagnostic line that tapped a bit into the normal distribution’s edge and said ‘that’s where AS is’, on the edge of normality. Just on the NT side of the line, he added an ‘aspie personality type’, and ‘resident aspie’, which he said is adults who have learned so many coping skills that they don’t get diagnosed if they see a specialist as adults, but they would have got a diagnosis had they seen one as a kid. I think that was an excellent explanation that put the whole ‘diagnosis VS not’ boxes model in perspective. To categorise people as being either aspies or NTs (~applying the NT stereotypes to them) based on whether they’re on one side or the other of the line obviously creates incorrect stereotypes of a great number of people and with them internal divisions and politics.

      • catastraspie says:

        Yes I don’t deal well with grey zones either, and you are right, stereotypes have a lot of negative associations.
        I absolutely love the explanation he gave you, that makes SO much sense! It doesn’t help my natural desire to categorise people, but it lets me see why some people have things in common with me but don’t seem to struggle like I do. Perhaps my brain will accept a compromise of different ‘bins’ under the normal distribution curve! 😉

  3. Mados says:

    Another aspect:

    I had not previously considered the fact that the speed at which I lapped up my Asperger’s (AS) diagnosis might lead some people to suspect that I had jumped on the proverbial band-wagon. I am not sure why someone would choose to say that they have Asperger’s, given some of the problems and reactions it can create, but then I guess Neurotypical (NT) people might get something out of it that I can’t perceive.

    Just speculating:

    AS is probably the only mental* diagnosis that has a bandwagon. Some individuals who suffer from a more stigmatised mental disorder e.g. Schizoid or other personality disorders, may want to ‘take cover’ in an AS diagnosis to explain their lack of ability to live up to people’s expectations while feeling less stigmatised than they otherwise would. Also, AS has a reassuring ‘I am what I am’ quality to it – everybody knows it can’t change, while people with mental disorders may be under constant pressure to change and recover.

     
    *I know it isn’t technically a mental disorder, but it create obstacles in the same sense as mental disorders

  4. Mados says:

    I like his explanation too:-)

    I think it implies that two people who struggle the same and have similar* behaviour may end up on different sides of the line as adults, depending on whether they were diagnosed as a kid or not. Able to ‘pass for normal’ as adults but spending hard efforts to do that, struggling with sensory sensitivities and others’ social assumptions but able to hold down a job, have some friends, marry, have kids and be socially pleasant, appropriate & interactive for relatively short periods of time (then drained afterwards), communicate well, have learned to cope with the non-verbal side of conversations … and so on… Have overcome many issues + learned to disguise / control others.

    Good luck negotiating compromises with your brain:-)

     
    *Disclaimer: obviously two people never have precisely similar behaviour … anyway, that’s beside the point.

    • catastraspie says:

      I’m not sure I agree with that as a model for diagnosis, it sounds more like a deficits-based clinical model for service provision (the good old, ‘well you’re managing so you’re fine’ logic). I don’t think my Asperger’s has gone away just because I can ‘pass’, and I wouldn’t want to not have Asperger’s as part of my identity, because I feel like I need people to know how hard things are for me to do what I do. I used to live in the undiagnosed box (brain has overruled me on the compromise front for today) due to my level of coping, but it was a constant barrage of messages about how inadequate I was because I wasn’t better at the things I could barely do even at 100% effort. I guess things would be different now because I would know that I wasn’t inadequate, but I don’t like being judged and criticised for doing my best, and I find labelling myself the most efficient way of preventing that from happening. Cop out? Perhaps, but I’m just not there yet. I certainly have become more sociable since I ‘came out’ as Aspie, the rules have changed, the pressure is gone and I can just be myself.

      • Mados says:

        I understand what you mean and fully agree. My comment wasn’t normative… it isn’t a model for diagnosis as it should be, but as it probably is in many cases. What mean is that because people with AS traits are not diagnosed, it doesn’t mean that they don’t struggle just the same… which is also what you say. There can be fairly random reasons to whether people end up on one side of the other of the Dx line. Whenever you draw a line there’ll be some who are close on either side and where arbitrary factors play a role, one big one (probably) is how well they have learned to cope and disguise their difficulties, and obviously adults have had time to learn a lot that kids haven’t yet. It doesn’t mean they are not struggling, just that it isn’t as visible for an outsider anymore and may no longer meet official criteria.

        Point: that rigid assumptions based on which categories people are perceived to be in, are biased and conceal more than they clarify.

        Ps. Please keep in mind that this is my second hand interpretation of someone else’s concept (which was actually very well explained, maybe I haven’t managed to convey it so well…)

      • catastraspie says:

        Rigid, categorising… moi? Never! 😉 No you did explain it well, I’m just thinking around it and the implications. No different to any other clinical cut-off I guess, will have implications for people who fall ‘the wrong side of the line’ in terms of what they want or need. I’m just not surprised that my brain prefers the idea of a binary divide, much easier to deal with and provide for, gives more answers and peace 🙂

  5. Wow. That post you referenced was interesting. I left a comment there. Professionals in my opinion know very little about females with Aspergers. There are some, but very few. It will be interesting to see what this new wave of Aspie females does to the world. Hugs! Sam

  6. Mados says:

    Binary divides are easier to deal with, require less effort, and give peace of mind… That’s why stereotypes are so common in general. And yes, any clinical cut off line has that impact, that’s inevitable and OK. As long as people remember that categories are just that… categories, defined by people… They are not a universal truth or mirror of reality that can be used to define people in either category.

    • catastraspie says:

      In the UK the government are making changes to the Health and Welfare legistlation, and there has been a lot of people saying, “When you’ve seen one Aspie, you’ve seen ONE Aspie”. I hope they listen.

  7. arifmvega says:

    I am kind of struggling with this right now. Hearing the story on undiagnosed aspergers on NPR around 2 weeks ago made my head spin. Took the aspie quiz and it agreed. Still though there is so much stigma attached to it I cant help but feel nervous about a formal dx. What if they say no? My world would be crushed! lol.

    • catastraspie says:

      I think that’s a common fear, I know I was really worried that they would tell me I was imagining it and take away this knew understanding and explanation for my life. They didn’t, and I would imagine that if you identify with it so much, you are probably right. You know yourself better than anyone else, so it may be worth reading up on what would be asked at an assessment so that you have time to think of appropriate examples from your life. If you decide to go ahead, best of luck, and if you are happy with your own opinion then best of luck too! 🙂

  8. Quarries and Corridors says:

    I grinned at Asperger’s becoming your special interest – one of my long term special interest is identity, especially liminal (grey area) identities, and I first got obsessed with Asperger’s in 2004 when I watched and read a few TV documentaries and books. I identified really strongly with the AS ‘world view’ but didn’t think I fit the actual traits (the books were about people diagnosed in childhood) and thought I might be in the grey area between NT and AS.

    Since then I’ve been obsessed with the autistic spectrum and related conditions for at least a couple of months every two years, with a couple of stretches of years in a row. With every iteration I get a little closer to accepting that I have AS. I’ve gone through ‘not neurotypical’, dyspraxia (including diagnosis in 2007), ‘neurodiverse’, NVLD and now finally suspected Asperger’s after having met several stereotype breaking aspies, read a lot about how Asperger’s manifests in women and people who ‘pass’ into adulthood, and having been forced to recognise that I have sensory and emotional awareness issues that aren’t covered by anything else.

    It seems I’m (apparently very) lucky to live somewhere that has a good adult Asperger’s service and was able to get referred there by my GP for assessment with only an eight week wait for my first appointment (with less than two weeks to go now). I’m considering this ‘karma’ for having to have to pay for my dyspraxia assessment in 2007 and then having the NHS refuse the further assessments my EdPsych recommended.

    So thanks yet again for sharing your perspective and experiences of this!

    …and yes, I also consciously try to not make every conversation into a discussion on AS, but I guess I failed in this case 😉

    • catastraspie says:

      That’s a really interesting journey, thank you for sharing. Please accept my apologies for not reply to your comments sooner, I’ve been having a difficult month. For me, knowing that some of my struggles are due to AS, outside my control, and not my *fault*, makes them easier to deal with.
      In terms of acceptance I was probably the opposite and took it onboard immediately, but in place of denial I had a lot of self-doubt about trusting my own opinion, even after I had a professional diagnosis. I am a good few years behind you with my obsession, which only started in 2010, but I don’t see it shifting any time soon! I make myself wait a certain amount of time before telling someone new and try to limit the number of times (a day) I mention it to the same person 🙂
      I’m really glad you live somewhere with a good adult service, and that you didn’t have to wait too long for your assessment. Where I am it can take 18 months for a tertiary level assessment (AS clinic), plus several months’ referral time from GP to secondary services (CMHT). I have heard of people waiting up to 3 years from start to finish.

      • Quarries and Corridors says:

        Oh I wouldn’t say my reaction was denial, it was really just obliviousness. I kept gradually learning that I had traits that were evident to everyone else but that I had no idea about or thought were normal. The absolute breakthrough for me was a couple of years ago when I read this article http://news.bbc.co.uk/1/hi/health/8407857.stm and almost wept in recognition.

        Wow I really am VERY lucky to live here! I only asked my GP for a referral at the end of April and I’ve had my screening assessment already!

  9. Pingback: Incomplete thoughts around co-existing Asperger’s and dyspraxia | catastraspie

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