what should we say to those who are dismissive about asd

Six postings back, recombinantsocks took issue with me about my assertions about the Triad of Impairments three postings previous to his.

Aspiedent also pointed out the sensory issues that are given separately from the triad.

The original posting is about people who are dismissive about autistic spectrum disorders. They don't take it seriously because they don't understand it. If they do try to understand it, they mostly find the triad of impairments which doesn't include a lot of the behaviours they see. Most of the training available is centred on the triad.

Recombinantsocks argument was, as I understood it, that the triad defined his disability.

But does it? I'm not saying that the triad is wrong in what it contains. My issue is with what it doesn't contain. The reasons it doesn't cover many aspects of living with autism is that the exclusions could be confused with other conditions - and as the triad is a diagnostic tool, it necessarily excludes these.

Take for example sensory sensitivity. This is a big subject divided into hypo and hyper and affecting all the senses, with lots of exotic names. But stop and think for a moment - unusually sensitive hearing, including hearing things others cannot hear, such as voices, could be confused with schizophrenia. So for that reason it is not in the triad.

But read the postings on here and one of the biggest issues discussed is sensory sensitivity. How much is then conveyed in training packages? 

Anxiety and depression are core features of autism, and may be directly related to autism. But they also occur in other mental health conditions.  Hence they aren't part of the triad. Yet they make up a large component of discussions on this forum.

Meltdowns and seemingly over the top reactions to everyday events are something that puzzle other people. It is not explained in the triad, because it could occur on account of other mental health conditions. But it is a recurring topic on this forum.

Bullying is widely typical of the autism experience, but bullying isn't definitive enough for the triad.

I could go on and on.... but I just reiterate, the triad is a diagnostic tool, not a blueprint for living with autism.

NAS relies too much on the triad, and often misses important understandings of autism. Take for example body language, explained at the start of their "What is Asperger Syndrome" section, but oddly not at the start of their "what is autism" section. This explains that difficulty reading body language affects out communication skills.

What it doesn't mention, which is just as vital, is our ability to generate the correct body language to support what we are saying,. It isn't just that we cannot read facial expressions properly, we cannot produce the right facial expressions that other people expect to see in order to follow the underlying intention of what we say verbally.

And that failure to generate the correct facial expression is what other people notice. If they look it up on the web, they wont find it explained, certainly not on the NAS website.

So from what they can find out, nothing explains lack of meaningful facial expression, meltdowns, anxiety, over-sensitivity, being easily taken advantage of......

Hence people are dismissive about ASD because most of what they see isn't explained as part of autism!

'nuf said......?

I once remember being in a queue in a shop and the person serving complementing a mother on her well behaved child. The mothers reply was "nice parents have nice children". I remained silent, but thought "you smug ********" try living in the real world. Not all children are placid little obedient puddings, some have personality and spirit. I had not even heard of aspergers then, and thought autism was a severe mental handicap. Little did I know, that I was on the spectrum.

Marjorie195 said:

I keep seeing posts here, that say that it is hard to "come out" because there are people who think that aspergers is not real.

Someone has just posted that people think aspergers "did not exist in my day". Someone else said that it was thought to be almost trendy to claim you have it, so formal diagnosis is vital. Misconceptions abound.

I am no good at sharp responses to this kind of dismissive remark. We do not think on our feet. Perhaps we should pool our ideas of what to say, when those around us are dismissive.

Sadly, the only thing I can think of sounds a little rude.

We used to be labeled geeks and wierdos. Now we are recognised as being on the autism specrum.

Can any one else do better please?

I sometimes try to explain about ASD as a spectrum rather than differing diagnosises. 

I sometimes point out the fact that it is recognised and acknowledged in the WHO International Classification of Diseases; Mental and Behavioural. 

I point out that Asperger Syndrome was first recognised in the 1940s by a German Doctor, but his work was not translated into English until approx 1980s/1990s. 

I sometimes just ignore them. 

I tend not to worry about such dismissive individuals.  They are usually pompous idiots and I cannot be asked to waste my time with them! 

The most important thing I find that helps is absolute confidence.  If you explain with confidence and conviction what ASD is, it tends to disarm a lot of dismissive people.  There is a lot to be said for confidence. 

One point to remember is that the autism is just part of who we are. At one point I thought that it practically defined me but I think I have got past that and recognise that it is just one of my characteristics.

Electra, thanks for the recommendation. It sounded relevant to my own situation so I've ordered a copy :-)

We don't just run a different OS, we also have slightly different hardware and firmware that is tuned differently to non-autistics. Perhaps it's like running red-hat enterprise on an over-clocked cpu when other people are running ubuntu on a more stable hardware setup?

I hope that autistic people are moving towards defining themselves. The triad of impairments so beloved of clinicians is of little use in helping AS people understand themselves as valid and useful.

Being in IT I think of myself as running Unix when everyone else is running Windows. I don't have a programming error, I run a different operating system.

For use in work situations I have found a 40-page book by Maria Harder called Glimpses of Aspergers to be useful in helping NT people understand the different way in which we communicate and understand the world. You can get it from lulu.com and its also on iTunes for about £1.50. Maria wrote is when she was about to lose her job through communication issues and it helped her colleagues see the bigger picture and adapt.

www.lulu.com/.../product-16215920.html

I think it is not just NTs who deny the existence of autism. My Dad (pretty much 'stereotypical' AS) would pooh pooh the concept louder than anyone else I know. If I raised the issue it would fall into the category of "talking about ones ailments" which is a pet hate of his. And my mother, who has severe OCD and a superhuman memory for detail/time/place, suddenly developed selective amnesia when I told her I was investigating this.

I have several other relatives who would undoubtedly tick way more boxes than me on the triad of impairments. But they don't appear to have my sensory issues, and I have never seen any of them lose their temper as I can. All have successful careers, in fields where it is OK to be eccentric. One has commuted the same 5 hour route for 40 odd years, and sees it as a perk of his job rather than an inconvenience. Travels all over the world with other rail enthusiasts and always seems happy. I think he would be geniunely baffled why anyone would think he had a disability. 

longman said:

I agree autism is a very difficult concept.There is scope for improving the situation if there's enough resolve and momentum.

The definition is hard to pin down. I rant on there about the Triad of Impairments being used to describe autism and living with autism, even though its intention was to diagnose autism, by highlighting characteristics that distinguish it from other conditions. People with marked autistic traits may show obvious Triad characteristics, but some much affected by autism don't, and as you move towards those who are abler, the triad becomes harder to identify.

Personally speaking, I have been diagnosed based on the triad and all of my work issues have stemmed from that triad. I have continually fallen foul of my blindness to social situations and communication proglems to the point where I am, yet again, currently trying to retrieve my job from the dustbin. The training materials from NAS are absolutely essential for describing the issues to my employer. I also have some of the sensory comorbidities but these are much less of an issue for me. If you aren't diagnosed through the triad then you don't have an ASD. If you just have the sensory issues then I guess you 'just' have SPD Sensory Processing Disorder? I put just in quotes because I recognise that some people are seriously disabled by that. I am at the top end of the functioning spectrum and nobody spotted ASD in me for 56 years but the triad is absolutely and straightforwardly easy to diagnose in me.

I never try to describe autism via the triad of impairments because I think it works both ways. Those who go down this route invariably cannot put themselves in my shoes.

I prefer to go down the route of sensory issues, but even this has pitfalls because everyone has knows somebody who has some kind of (isolated) sensory issue but who is not autistic.

So I end up pointing out the severity of the sensory issues and the effects of a combination of sensory issues. I believe it is the severity and the combination that distinguishes autism from not autism. This usually has some effect.

Sometimes I give a graphic description of what busy trains or airports are like for me. This is the perception not the effects. I use the analalogy of multiple coloured snowballs to depict the emotions that people send out. I try to get across how this with lots of unpredicable movement, and the general noise level can produce overload - especially when you are trying to navigate your way through it.

People can get a better handle on personal experience than they can on theory.

A retired primary school teacher told me that the local council refused to believe autism existed for years. It got them out of the obligation to pay extra to deal with it. As a result this council was behind others in its autism provision for year. It is now much better, but still a lot to do.

I have had people ignore my autism. My problem is that I am so high functioning that nobody can understand why I struggle so much with the "simple" things. This is a huge barrier to acceptance and understanding.

I think the problem is simply lack of understanding of a hidden disability/difference. Most people assume that everyone else is like them. It can be quite scary to realise that your perception of the world is not "real" but just one of many.

I think another problem is that Autism is hard to pin down: it manifests itself in so many different forms and has so many variations that people find it difficult to get their heads round it. People find it hard to look behind what appears as inappropriate behaviour to what might be causing it. [And parents get blamed for bad behaviour caused by the stress of external factors - which may include the person blaming the parents.]

I was in hospital for a week in february. Autism was denied on the ward because apparently it is only something that affects children. It did not stop autism causing problems. But the problems did ensure that they kept me in an extra night until appropriate support could be in place at home - and I was better able to fend for myself. There is a severe lack of awareness generally in the medical profession. If they don't know, how can we expect the general public to understand?

I take heart in the fact that children with autism become adults with autism. Children now have more support throughout their education (yes, I know you have to fight for it but at least it now exists), but there is virtually nothing once they leave education. I am expecting an outcry from parents in the next few years because of this.

Yes it is somewhat neglected by the NAS because of the focus on children, but you have to admit that they have significantly increased their focus on adults over the last few years - and this focus is still increasing. [By the way I do not work for the NAS.]

It is already the case that some parents are setting up their own businesses in order to ensure employment for their autistic child - because there is little available.

I agree autism is a very difficult concept.There is scope for improving the situation if there's enough resolve and momentum.

The definition is hard to pin down. I rant on there about the Triad of Impairments being used to describe autism and living with autism, even though its intention was to diagnose autism, by highlighting characteristics that distinguish it from other conditions. People with marked autistic traits may show obvious Triad characteristics, but some much affected by autism don't, and as you move towards those who are abler, the triad becomes harder to identify.

So why are all the training and awareness packages, including those produced or run by NAS, almost entirely based on the Triad of Impairments?

I think the analogy to a "spectrum" has been a huge tactical error. For a start it doesn't grade off uniformly - some characteristics are very persistent, others exist in varying degrees in different people. People who are able or "mild" can still be markedly affected by social difficulties and environmental sensitivity. But the real harm has been the implication that everyone is on the spectrum, which has dumbed down the concept of autism in the public's mind.

We are stuck with a conflict between disabled by autism and diagnosed with autism. I've a diagnosis of asperger's syndrome. I'm not "disabled" by it more inconvenienced by it. It had far worse impact when I was younger than now. There is a constant argument about whether people should be given the diagnosis if they are not genuinely disabled. Yet having the diagnosis does help those who can help themselves.

But as long as everyone argues the point we lose credibility.

This is still a childhood condition. Those originally diagnosed as children are now in their 50s, and there are many diagnosed as adults, but it is still strongly misrepresented as something that only affects people up to the age of 18 or 21.

Much of the misunderstanding arises because most of the campaigning is by parents, about the support of those who are minors. But the parents groups could do more to help adults with autism, and certainly to boost understanding of autism in adults.

Also there are a proliferation of "cures", and not enough counter argument that it is not curable. Some of the "cures" would amount to criminal fraud in almost every other context.

Despite Government "initiatives" and undertakings by the professional bodies for GPs and other health professionals, a lot of the mythology about whether people with autistic spectrum traits are genuine, or that you grow out of it, etc., are still mainly propogated by GPs. Why?

I don't feel, personally, that NAS is doing enough.