Defining what is AS and what isn't

longman said:

Sometimes I suspect that reactions to auitism are similar to CFS/ME (Constant Fatigue Syndrome/Myalgic Encaphalomyelitis).

It's funny you should say that, I have cited Christine Miserando's Spoon Theory in a couple of places, as bearing remarkable parallels to Asperger's.  Christine has lupus, which I think may be similar to ME.

It became fairly widely reported in the 1980s, and wasn't taken seriously by the medical profession for many years. For one thing it was hard to diagnose, largely qualitative, something also true of autism/aspergers, especially at the milder end. So the diagnosis lacked precision.

Back in the 80s and 90s lots of people went down with this, including several friends who suffered dreadfully from its effects and the lack of support they got. Nowadays you tend not to hear about it so much, but that is because the medical profession have finally got their heads round it, and people who contract it get the right medication and the right treatment.

The problem with ME was it seemed to fit into the popular imagination as an excuse for staying off work. Basically the main symptom was rapid exhaustion, so by lunchtime you couldn't do anything, or in more marked cases couldn't get out of bed. People who had it were treated very poorly by employers, social services, DHSS, and GPs.

The trouble is the symptoms could be identified by the general population as common feelings, induced sometimes by ill health, but equally brought on by stress. So people who developed this were deemed to be over-reacting to stress levels most people managed. So it was easy to be prejudiced.

It was exacerbated by press reports and media attention.

OK CFS/ME was probably viral, autism is neurological. The problem is still public perception, and the way the health service reacts, especially as diagnosis is something vague.

But the symptoms of autistic spectrum can mostly, at least at the milder end, be defined as people appearing to make more fuss over things the general population seems to have to a degree.

There is nothing worse than the "pull yourself together" attitude.  I've even had it from my own husband.  It's pathetic, unhelpful and they have no idea.

This is why I don't like the concept of spectrum, especially one grading linearly into the general population. This lends itself to the idea that rather than being more severely affected, some people just aren't trying hard enough.

Nor me, I feel angry when people (even professionals) say that "we are all somewhere on the spectrum"!  It's absolute rubbish.

Please note I'm not justifying this perception. But I think it is a large part of the problem getting autism recognised, especially amongst people nearly able to manage.

So there is a need to QUALIFY the traits rather than just list them, and the triad of impairments doesn't by itself help convey the difficulty. NAS needs to look at how AS difficulties are described.

I really think that developing a diagnostic brain scan will help so much with this type of problem.  If it's on a brain scan, they can't refute it.  They ought to also look at the reactions an autistic person has or the effect on them, to being in what NTs view as a similar situation they might have.

longman said:

Sometimes I suspect that reactions to auitism are similar to CFS/ME (Constant Fatigue Syndrome/Myalgic Encaphalomyelitis).

It's funny you should say that, I have cited Christine Miserando's Spoon Theory in a couple of places, as bearing remarkable parallels to Asperger's.  Christine has lupus, which I think may be similar to ME.

It became fairly widely reported in the 1980s, and wasn't taken seriously by the medical profession for many years. For one thing it was hard to diagnose, largely qualitative, something also true of autism/aspergers, especially at the milder end. So the diagnosis lacked precision.

Back in the 80s and 90s lots of people went down with this, including several friends who suffered dreadfully from its effects and the lack of support they got. Nowadays you tend not to hear about it so much, but that is because the medical profession have finally got their heads round it, and people who contract it get the right medication and the right treatment.

The problem with ME was it seemed to fit into the popular imagination as an excuse for staying off work. Basically the main symptom was rapid exhaustion, so by lunchtime you couldn't do anything, or in more marked cases couldn't get out of bed. People who had it were treated very poorly by employers, social services, DHSS, and GPs.

The trouble is the symptoms could be identified by the general population as common feelings, induced sometimes by ill health, but equally brought on by stress. So people who developed this were deemed to be over-reacting to stress levels most people managed. So it was easy to be prejudiced.

It was exacerbated by press reports and media attention.

OK CFS/ME was probably viral, autism is neurological. The problem is still public perception, and the way the health service reacts, especially as diagnosis is something vague.

But the symptoms of autistic spectrum can mostly, at least at the milder end, be defined as people appearing to make more fuss over things the general population seems to have to a degree.

There is nothing worse than the "pull yourself together" attitude.  I've even had it from my own husband.  It's pathetic, unhelpful and they have no idea.

This is why I don't like the concept of spectrum, especially one grading linearly into the general population. This lends itself to the idea that rather than being more severely affected, some people just aren't trying hard enough.

Nor me, I feel angry when people (even professionals) say that "we are all somewhere on the spectrum"!  It's absolute rubbish.

Please note I'm not justifying this perception. But I think it is a large part of the problem getting autism recognised, especially amongst people nearly able to manage.

So there is a need to QUALIFY the traits rather than just list them, and the triad of impairments doesn't by itself help convey the difficulty. NAS needs to look at how AS difficulties are described.

I really think that developing a diagnostic brain scan will help so much with this type of problem.  If it's on a brain scan, they can't refute it.  They ought to also look at the reactions an autistic person has or the effect on them, to being in what NTs view as a similar situation they might have.