I Had Asperger Syndrome. Briefly.

Jon,

Your negative diagnosis makes no difference to anything apart from how it’s made you feel. You’re the same person you were prior to your assessment, and your difficulties still stem from the same source as they did prior to your assessment.

This is unfortunately one of the problems I see as inherent in the whole labelling process; once you go for assessment, the outcome can have a negative impact whichever way it goes: When I was diagnosed with Asperger's, I became very depressed as I felt that that this was confirmation that nothing would ever change for me, whereas prior to dx, I had always imagined that my difficulties might still be transitory, or even that they could be blamed on other people (for instance, I just happened to always get jobs working with cliquey weirdos and one day I’d find a work team who would be different!) For me, receiving a diagnosis just made me realise that It was me who was the ‘weirdo’ and that they were normal (heavens forbid!!!)

I’m only recounting this, to try and explain that even a positive diagnosis may have led to you feeling  equally depressed now.

Having said that, if you feel that the diagnosis was wrong it may be worth seeking a second opinion. I don’t know who you went through obviously, but the psych with my local NHS adult learning disabilities team who diagnosed me, basically said that if I’d received a conventional ‘tick-box’ type assessment from the local private organisation usually subcontracted in our area to perform Asperger's assessments for the NHS, I probably would not have received a positive dx. He claimed that it was only his own special interest (sound familiar) in Asperger's, which had led him to take a further degree in Asperger’s Studies on top of his general psych doctorate etc, which had led him to gain an understanding of more subtle and atypical presentations, and that basically, this is a level of understanding that is lacking in most diagnosticians....which is shocking when you think about it!

Having said that, goodness only knows how you go about getting a second opinion, and even then, how you know if the so-called experts really have the level of knowledge and understanding required to make an accurate assessment not simply based on a tick-box approach. I was lucky in a way I guess, as I just happened to be referred to the local learning dis. team for other reasons and this psych just happened to pick up on my Asperger's symptoms.

Maybe someone at the NAS help-lines could advise you as to how you go about this. Whatever happens, I hope that you start to feel a bit better soon! And as far as tradesmen go, I have exactly the same problem (as I’m sure do lots of people....they’re in your HOME ffs....where you’re supposed to feel safe from intrusion!) I’m studying from home at the moment and when they’re here I swing between hiding all day long in my bedroom under the auspices of studying,  or babbling incessantly at them so they just think I’m some kind of looney! I hope yours have left now and that your home is your castle once again! Good luck with everything!

P.S. Hooray for supportive partners – they’re worth their weight in gold!!

i really don't know what they bean they have been cured some people with autism think they have been cured maybe because some of them have fond love when they wasn't into finding love before and no longer do things they use to do so they think they have been cured i don't know.

Hi, Daisygirl,

I found your post interesting. The idea that depending on your circumstance dictates how obvious Aspereger traits are. That I agree with. I am 39 and recentlly went for an Aspergers assesment. The result was that I am not. I was very nervous before the assesment and once I got going I just talked and talked. My parents were very dismissive of the idea. My partner and I both thought I had Asperger traits but the assesment said I wasn't. Since then I feel like my difficulty with social interaction , depression, failures, low confidence are all my fault and I should be able to do something about it. I am frustrated and in the back of my mind still think I might be somewhere on the spectrum. My life is pretty limited. My partner is great and I wouldn't ad she gets me doing things that I would not even consider on my own as they involve some form of communication with people. I paint and make music lots on my laptop and have a part time job. If eveything stays the same things can be OK. I have less and less 'friends'. I don't socialise and hate talking with trades people. There are builders at the house now so I have gone to the library to hide. I dread talking to them. OK I am going on and this doesn't seem to relate to the post anymore.

I think perhaps the key point here is the fact that the young man in question states quite clearly that he was going through a socially awkward phase. Surely if he had Asperger's he would have exhibited some Asperger-like traits before his late teens. (regardless of whether they were recognisd as such or not, they would still have been present to some extent - wouldn't they??) Perhaps his mother's biggest mistake was not taking into account whether or not his social difficuties (eg “failure to develop peer relationships appropriate to developmental level”) had existed prior to this. However, you would expect a mother trained in psychology and who claims to be an 'Aspergers specialist' to have thought about this before branding a typically stroppy, withdrawn and faddy teenager with Aspergers.

On the other hand, maybe he actually does have Asperger's, but due to the right support/education/opportunities in life or very high levels of functioning in other areas has found ways of circumnavigating the difficulties caused by his Asperger's: apparently (according to my psych), this is why my Asperger's was not diagnosed until I was 40. After struggling throughout school, followed by many unhappy years with various mental/social problems, I found the strength (with support) in my late 20s to stop numbing myself with drink/drugs, put myself out there and grab some qualifications and work opportunities. As a result, although it was not easy, I think I'm capable of passing myself off as neurotypical for the most part, and even though I still struggle outside of my own small social group, I have learned the rules of social engagement through studying others, and trial & error. I'd say I'm now quite expert in judging how others are thinking/feeling etc, and am also a very good actress, in that I make sure I give the correct responses and behave appropriately!

To all intents and purposes, I probably appear 'cured' of the difficulties I had in my youth - but inside I still dread nearly all social interractions with people outside of my friendship group and can never relax as the brain cogs are whirring 19-to-the-dozen due to constantly assesing the behaviour/mannerisms of others and the appropriateness of my responses to them.

With my own friends however (who are generally somewhere to the left of neurotypical and have been through similar issues to me in the past), I am usually very comfortable and generally feel able to empathise instinctively.

Perhaps it is for these reasons that as longman said, "....there is an established myth about aspergers, widely prevalent amongst GPs and other health workers, that it is "something you grow out of"." Because on the whole, it is people like me who are willing and able to shout our mouths off about our autism!

I guess this is the problem with any 'spectrum' condition - that the media and general public only get to see the stereoptypes - and with autistic adults, these appear to be either classically autistic adults who are minimally or non-verbal, often requiring high levels of support (and portrayed in the media as 'sympathy cases'), or as Daisygirl pointed out, adults with Asperger's who have been fortunate enough to have been instilled with middle-class aspirations, a reasonable education and enough love and support to get out there and write books/appear in the media etc.

I find that the more I learn about Asperger's and Autism, the more questions it raises!

P.S Sorry for the length of my post.......I have a tendancyto do that sometimes! Perhaps I should have said 'hi' before steaming in there eh?!

P.P.S 'Hi'

Those who reached adulthood before the condition of Asperger's was recognized had no alternative but to cope and/or adapt, regardless of whether they were middle or working-class, since they were not eligible for either support or disability benefits.

Addionally, people who are now being diagnosed in their 60s or 70s grew up in a time when treatment for 'mental illness' was pretty basic and people were unwilling to voluntarily admit to problems of this nature - better to cover-up as best as one could.

Please clarify?

If I've read your post correctly: it makes a difference to the severity of aspergers whether you are working class or middle class?

You clarify at the end that there is a class component to asperger awareness, which I can accept. I suspect a lot of undiagnosed aspies are from poorer working class backgrounds and there propobably is a tendancy for middle class families to pursue diagnosis. That's a pattern I could anticipate finding in the literature.

But I did get the sense from what you say, that being from a middle class background and a more secure environment means you are less likely to have significant impairment.

This is important. Is there evidence for such a pattern? Moderators do you know of any research on class and aspergers?

Observations like this can influence the way psychologists approach research on autism.

I agree with DaisyGirl. Most people with aspergers who appear in the media are from comfortable middle-class backgrounds, with family support, reassurance, and financial security. A person with aspergers from a working class background, particularly if their parents or they themselves are poor, are less likely to appear in the media and are more likely to have developed  challenging behaviour, so although AS is a biological condition that CANNOT BE CURED, some people are more favourably advantaged because they live in a more secure environment. This is not always the case, but it stands to reason that this will be a factor as to how well a person can adapt. So there is a class component to Asperger awareness and the impression of the condition that is projected to the general public. This cannot be ignored.

I also wonder whether the USA over-diagnoses AS more than in the UK? Just a thought, particularly since the USA has no publicly funded health-service with its stringent NICE (National Institute for Clinical Excellence) guidelines.

I would add also that there is an established myth about aspergers, widely prevalent amongst GPs and other health workers, that it is "something you grow out of".

There's a reason why that myth persists, despite NAS Campaigns and the Autism Act:

Children on the autistic spectrum are very visible, focus of scientic research, main focus of funding, and because education is compulsory, exposed to an analytical process that brings to the fore concern about "difference".

Adults on the spectrum are invisible. Many are in institutions. Many are unemployed and in special housing or poor standard accommodation (as DaisyGirl explains). They don't have jobs. They don't have representation. They disappear after age 18/21.

The only way that will change is if the needs of adults are given a higher profile. NAS is trying to do that. But it may be necessary to embrace the concept that some people on the spectrum can achieve. Because that is one way of raising the profile.

Temple Grandin is clearly affected by AS but succeeds. That gets attention. In the UK the message seems to be "don't show your head above the parapet" (infamous metaphor in this country), because you'll damage the image of adult aspergers as a group of helpless needy people. Might be largely true. But the image isn't helping the profile needed to resolve the problem.

Bet that'll stir up a few protests. Glad of this forum.

Hi DaisyGirl,

I agree that media skew will likely create misunderstandings, but I have a different perspective.

Of course, as has been discussed before in these postings, I'm in the small atypical population, diagnosed on the NHS but on the "mild" side with good coping strategies, and I have to count my blessings, faced with the statistics for most aspies. I do have a stable home life in the sense that I live contendedly alone, no relationships or close friends, just lots of acquaintances. I live in my own home got by dint of hard work and saving and am retired after a rocky but mostly continuous career, though with a late start as this were bad when younger. I have published three books in my special interest area. I'm not claiming any financial support and just muddle on regardless.

But I admit that's fortuitous for me and untypical of most.

But what needs to be said here relates to how society works. Most disabilities are boosted by the success of those who persever despite their disability and society loves that (might sit on their couches and do nothing positive to help but they like it). And that's what gets funds. Take dyslexia, large body of successful sports personalities and public figures raise the profile.

I agree that's definately a no-no for a lot of people on the spectrum.

But autism/aspergers depends largely on funding from parents' groups and NAS owes its existence to dedicated parents groups. That gets the attention to children. It doesn't help adults that much as we are seeing.

You cannot just seal off aspergers as only for people entirely helpless and claim anyone succeeding is marginal and unrepresentative, because society is not responding to this in a helpful way.

You need to adopt a more flexible approach to whether some people on the spectrum can succeed without being branded "cured" or "phoney". Because unless you take a more flexible approach things are not going to change much. That's reality.

I wonder whether the phenomenon of Aspies finding themselves 'cured' will occur more and moe in media stories, because of the almost total prevalence of stories of the 'successful Aspie', who has an extraoridary ability, has written a book etc.

If you have Asperger's, are and adult, and are successful, or even just centred enough to write a book or appear in a TV show or documentary you will probably have one or more of the following:

• a stable home life.
• living in a pleasant home, you are not in danger of being thrown out of.
• have a supportive and understanding friends and/or family.
• are financially secure.
• working in a field you enjoy or are comfortable in.

If you are Aspie, and have some of these, your Aspie traits will be far less pronounced, you might even seem to be 'cured'.

Now, let's think about most adult Aspies, they will probably have one or more of:

• no security or stability
• financially insecure, or downright poor.
• isolated (especially the older they are).
• constant assessments to try and get their needs met, causing anxiety.
• relationship breakdown.
• no support networks.
• depressed.
• constant anxiety.

Of course their Aspie traits are plain to see, they will not be lessened, but magnified, and will in all probability have associated mental and physical health problems.

So, what I'm trying to say is that there is a skewing in the media to the more able and more supported Aspie, and this means traits are less severe. There are not many (any?) adult Aspies in the media with the fully expressed traits, simply because these Aspies wouldn't be comfortable in the media, and are so stressed by their day to day lives they couldn't write a book or attend and speak at a conference. No chance for a spontaneous 'cure' here.

This is one of those stories the press like to pick up on. His mother made him an aspie....to turn a phrase, as she was a psychologist and autism expert writing a film about autism and used her teenage son to exemplify the message. It subsequently turns out he was going through a phase of being socially introspective, and in fact has good social skills and sufficient grasp of social interaction to write strongly social books.

I'm reminded of Daniel Tammet's book "Born on a Blue Day" published in 2006, which impressed me at the time. I recall reading on his blog subsequently that he no longer considered himself to be on the autistic spectrum, and now it is barely mentioned on his website, he is wholly focussed on his memory skills.

The press like to pick up on conversion stories, but I think in this latest American tale it was the same as self-diagnosis - there's no indication of a proper diagnosis. So I wonder if it is anything to worry about.

But lets face it, if there's a road to recovery sounds good to me. I think its premature though.