Are the messages about autism compromised?

There have been lots of conflicting claims about the prevalence of autism over the past year. I wonder which messages the Government and health professionals are listening to, and whether the ones sent out by NAS are being countermanded by other claims.

The latest claim in the British Medical Journal is that the increase in diagnosis in the 1990s has levelled off since 2000, and that the yearly diagnosis rate is 3.8 per thousand (compared to popularly held views that it is greater than 10 per thousand, possibly 13).

The study was based on diagnoses each year by the age of 8, but that could be to do with the effectiveness of diagnosis, especially as with recession, and the evidence of parents trying to get their children diagnosed or statemented, whereby there might be a deliberate policy to reduce diagnosis to fudge the statistics. Another study in America suggests a 78% rise between 2002 and 2008, and why wouldn't it surprise me if the UK was trying to pretend things again? 

Who do you believe? And more importantly who do the Government and Health Professionals believe?

Another claim made a year ago in the Journal of Child Psychology and Psychiatry believes children can grow out of autism.  Well we know many GPs hold that view, and it seems to be reinforced from somewhere. The evidence is supposedly that groups receiving strong support show marked improvement in social interaction skills, but that's been known as a short term response to coaching for some time.

Funnily enough you can always get a daft wee bit of research done in the UK, if the money's the right colour, but spend £0.5m on developing training and awareness packages and there's no apparent outcome!

The puzzle with the "grow out of it" research is it has the usual problem with eye contact. It thinks that if conspicuous gaze aversion stops the problem has gone away.

I truly dispair. The two most obvious and persistent factors are poor use of eye contact, preventing assimilation of a wide range of non-verbal cues, and sensory issues/sensory overload. Both are pushed to the back of scientists' minds, the eye contact if it isn't obvious. No-one seems to have explored whether these are key causal factors. That might better explain short-term improvements.

But NAS needs to weigh up whether the messages it is putting out are compromised by contradictory messages coming from sources the professionals, and Government, hold in better respect. Like the British Medical Journal and the Journal of Child Psychology and Psychiatry.

Parents
  • Something I read on another forum:

    Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. Lawton shares on page 33 what Dr. Leslie Carter observed:

    “She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”

    And I like quoting this as well, because of the parallels with trying to function normally with AS/HFA:

    http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

    As for our experiences being listened to, until such time as there is a cultural change by the powers that be, to ask us what we feel and what we need/want, we will continue to get dictated to as to what's good for us according to them, research will never research all the right things and statistics will be based on what they want them to be based on, not on full evidence and reality.

    When I read things like that which I quoted above, having been said as part of a scrutiny panel investigating services for autistic children, it almost sends a chill through me.  That professionals could actively maintain such a "them and us" attitude and look at parents of autistic children like some sort of aliens who are asking for strange things or are actively attempting deception and coercion, is frankly ridiculous.  How can there ever be any hope?

    Well, you know what they say about people automatically imagining others' ulterior motives and actions because they are projecting their own?  I have never lied to a service about either mine or my children's conditions or the severity of them.  And yet, I have been blatantly lied to by top clinicians all sticking together in denial of the facts to cover asses.

Reply
  • Something I read on another forum:

    Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. Lawton shares on page 33 what Dr. Leslie Carter observed:

    “She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”

    And I like quoting this as well, because of the parallels with trying to function normally with AS/HFA:

    http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

    As for our experiences being listened to, until such time as there is a cultural change by the powers that be, to ask us what we feel and what we need/want, we will continue to get dictated to as to what's good for us according to them, research will never research all the right things and statistics will be based on what they want them to be based on, not on full evidence and reality.

    When I read things like that which I quoted above, having been said as part of a scrutiny panel investigating services for autistic children, it almost sends a chill through me.  That professionals could actively maintain such a "them and us" attitude and look at parents of autistic children like some sort of aliens who are asking for strange things or are actively attempting deception and coercion, is frankly ridiculous.  How can there ever be any hope?

    Well, you know what they say about people automatically imagining others' ulterior motives and actions because they are projecting their own?  I have never lied to a service about either mine or my children's conditions or the severity of them.  And yet, I have been blatantly lied to by top clinicians all sticking together in denial of the facts to cover asses.

Children
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