Defining what is AS and what isn't

longman said:

I'm 63. I had an adult diagnosis about 10 years ago. OK my Asperger's is at the mild or manageable end, and I haven't needed to access services. So I may be a bit out of order, where many people on here have much more marked difficulties, if I try to relate my perceptions to theirs.

But there is a long standing problem of getting autism to be taken seriously by health professionals including GPs. And you can argue that's just down to prejudices and blinkered professionalism (well I do air that view on here often enough myself!).

GPs' biggest problem is just total lack of awareness.  In my own case, it caused my last GP (had to move GPs because of the problem) to wrongly attribute autistic traits to mental health problems and caused serious problems for my family).

Back in the 70s, if you didn't get diagnosed with something more psychotic, with associated inappropriate medication, or treated only for conventional depression, many people manifesting symptoms we would now class as autistic spectrum were simply brushed off as having immaturity problems or social inadequacy.

In the latter half of the 70s, working closely with students, I remember being told by a GP how so much of their resources were taken up with people who couldn't sort themselves out properly, due to immaturity or inadequacy issues they could sort for themselves.

In the 80s and 90s most people with these symptoms, if not requiring more marked intervention, were simply foisted off with relaxation exercises, assertiveness training and psyco mumbo jumbo packages like parent-adult-child, that were supposed to be a cure all for social inadequacy.

We've really only seen much progress in adult diagnosis within the last decade, and that includes many whose difficulties weren't picked up in school. And we are still witnessing extraordinary failures in support post transition from teenage to adult, for people with a diagnosis.

You have to ask yourselves why?  Is it purely down to ignorance, or a conspiracy to keep down the numbers diagnosed in order to save money?

I do believe there is a secret dictat to diagnose only the most serious cases, but there is also deep ignorance.

In the last decade before I retired I was engaged in disability support at the teaching level in a university, liasing with student services to support colleagues to support students as well as working directly with students. I was there for the beginnings of the progressive increase in undergraduates and postgraduates with autism diagnoses.

Not only did I gain experience of students on the spectrum and their support needs, I also witnessed public perception, and perception of people there to help. Autism generated a lot of adverse reactions, mostly because the behaviours seemed to many totally disproportionate from the contexts they arose in, and meant a lot of advocacy, trying to explain to others why things happened that didn't make sense.

I think that people on the spectrum, often having alexithymia, means we cannot adequately explain what we are feeling or how it affects us.  Sometimes something can overwhelm you without you actually recognising why.  So sometimes an attempt at an explanation, where you try to find the nearest version of events can be unimpressive to an NT who doesn't know what the experience felt like.  Also, with communication being our deficit, we perhaps don't know how to put it across the best way anyway.

I've also been on disability working groups at local authority level, and seen similar conflicts and issues.

Many parents on here report the public reaction of other parents and bystanders if their AS children have a meltdown or other behavioural reaction. The public invariably perceive it as an upbringing issue. OK there's a need to educate the public, but it is proving difficult to get this across.

The same, however, happens with adults. Many people's reactions to behavioural issues in autism are unsympathetic, especially if an individual otherwise seems able. Educating the professionals and public isn't making any headway.

Partly I think it is due to extremes/levels.  Even if we manage to find some words to explain it, what an NT might experience the same thing as could be way less.  Also, as we perseverate and obsess, the same thing for an NT could be an irritation or slight worry but to an autistic person could turn into an all-consuming phobia.

A large part of the problem is that some things people on the spectrum complain about, or offer as explanation for unusual behaviours, don't seem credible to others, or seem to be close to general experience where other people manage.

Someone just cannot experience what we do if they are not autistic, I don't know any way round that.  Like you said, if we seem otherwise capable, they tend to be judgemental and disbelieving.  It would appear to their mindset e.g. as drama-making or attention-seeking and they will also, like GPs, fall back on mental illness as an assumption.

OK collective/cumulative impact of many traits is part of the problem - a trait may be less significant on its own, but collectively with other traits becomes a serious handicap.  Elsewhere there are qualifications that can be made about the frequency, persistence, disorientation effects or knock on effects that help peopole understand the problem. It is a complex condition with lots of interdependencies and cross-over impacts.

Are we just producing lists which just as lists don't impress professionals or the public at large?  Are we sufficiently qualifying or explaining the impact of these traits? Are some traits not as valid or effective in explaining autism? Are some traits not really autism at all?

IntenseWorld says "I'm not talking about an endless list of complaints, I know there will be a core of applicable behaviours and traits".

But what is that core? Is it just the triad of impairments, because that on its own doesn't adequately explain behaviours. It tells you there are these behaviours. But both professionals and the public seem to be having a great deal of difficulty understanding why.

I do think the triad of impairments is simplistic, and as you have said many a time, does not accurately reflect the daily experience of an autistic person.

I keep pointing out that the triad is a diagnostic tool, not a definition of day-to-day difficulties.

Great we have this Push for Action campaign to increase awareness. But it is still an immense uphill struggle. I think there is an urgent need to better understand what it is we are trying to explain to health professionals and the public to gain their sympathy and understanding. 

longman said:

I'm 63. I had an adult diagnosis about 10 years ago. OK my Asperger's is at the mild or manageable end, and I haven't needed to access services. So I may be a bit out of order, where many people on here have much more marked difficulties, if I try to relate my perceptions to theirs.

But there is a long standing problem of getting autism to be taken seriously by health professionals including GPs. And you can argue that's just down to prejudices and blinkered professionalism (well I do air that view on here often enough myself!).

GPs' biggest problem is just total lack of awareness.  In my own case, it caused my last GP (had to move GPs because of the problem) to wrongly attribute autistic traits to mental health problems and caused serious problems for my family).

Back in the 70s, if you didn't get diagnosed with something more psychotic, with associated inappropriate medication, or treated only for conventional depression, many people manifesting symptoms we would now class as autistic spectrum were simply brushed off as having immaturity problems or social inadequacy.

In the latter half of the 70s, working closely with students, I remember being told by a GP how so much of their resources were taken up with people who couldn't sort themselves out properly, due to immaturity or inadequacy issues they could sort for themselves.

In the 80s and 90s most people with these symptoms, if not requiring more marked intervention, were simply foisted off with relaxation exercises, assertiveness training and psyco mumbo jumbo packages like parent-adult-child, that were supposed to be a cure all for social inadequacy.

We've really only seen much progress in adult diagnosis within the last decade, and that includes many whose difficulties weren't picked up in school. And we are still witnessing extraordinary failures in support post transition from teenage to adult, for people with a diagnosis.

You have to ask yourselves why?  Is it purely down to ignorance, or a conspiracy to keep down the numbers diagnosed in order to save money?

I do believe there is a secret dictat to diagnose only the most serious cases, but there is also deep ignorance.

In the last decade before I retired I was engaged in disability support at the teaching level in a university, liasing with student services to support colleagues to support students as well as working directly with students. I was there for the beginnings of the progressive increase in undergraduates and postgraduates with autism diagnoses.

Not only did I gain experience of students on the spectrum and their support needs, I also witnessed public perception, and perception of people there to help. Autism generated a lot of adverse reactions, mostly because the behaviours seemed to many totally disproportionate from the contexts they arose in, and meant a lot of advocacy, trying to explain to others why things happened that didn't make sense.

I think that people on the spectrum, often having alexithymia, means we cannot adequately explain what we are feeling or how it affects us.  Sometimes something can overwhelm you without you actually recognising why.  So sometimes an attempt at an explanation, where you try to find the nearest version of events can be unimpressive to an NT who doesn't know what the experience felt like.  Also, with communication being our deficit, we perhaps don't know how to put it across the best way anyway.

I've also been on disability working groups at local authority level, and seen similar conflicts and issues.

Many parents on here report the public reaction of other parents and bystanders if their AS children have a meltdown or other behavioural reaction. The public invariably perceive it as an upbringing issue. OK there's a need to educate the public, but it is proving difficult to get this across.

The same, however, happens with adults. Many people's reactions to behavioural issues in autism are unsympathetic, especially if an individual otherwise seems able. Educating the professionals and public isn't making any headway.

Partly I think it is due to extremes/levels.  Even if we manage to find some words to explain it, what an NT might experience the same thing as could be way less.  Also, as we perseverate and obsess, the same thing for an NT could be an irritation or slight worry but to an autistic person could turn into an all-consuming phobia.

A large part of the problem is that some things people on the spectrum complain about, or offer as explanation for unusual behaviours, don't seem credible to others, or seem to be close to general experience where other people manage.

Someone just cannot experience what we do if they are not autistic, I don't know any way round that.  Like you said, if we seem otherwise capable, they tend to be judgemental and disbelieving.  It would appear to their mindset e.g. as drama-making or attention-seeking and they will also, like GPs, fall back on mental illness as an assumption.

OK collective/cumulative impact of many traits is part of the problem - a trait may be less significant on its own, but collectively with other traits becomes a serious handicap.  Elsewhere there are qualifications that can be made about the frequency, persistence, disorientation effects or knock on effects that help peopole understand the problem. It is a complex condition with lots of interdependencies and cross-over impacts.

Are we just producing lists which just as lists don't impress professionals or the public at large?  Are we sufficiently qualifying or explaining the impact of these traits? Are some traits not as valid or effective in explaining autism? Are some traits not really autism at all?

IntenseWorld says "I'm not talking about an endless list of complaints, I know there will be a core of applicable behaviours and traits".

But what is that core? Is it just the triad of impairments, because that on its own doesn't adequately explain behaviours. It tells you there are these behaviours. But both professionals and the public seem to be having a great deal of difficulty understanding why.

I do think the triad of impairments is simplistic, and as you have said many a time, does not accurately reflect the daily experience of an autistic person.

I keep pointing out that the triad is a diagnostic tool, not a definition of day-to-day difficulties.

Great we have this Push for Action campaign to increase awareness. But it is still an immense uphill struggle. I think there is an urgent need to better understand what it is we are trying to explain to health professionals and the public to gain their sympathy and understanding.