Thursday, December 31, 2009

They're sticking to the wrong diagnosis...

The change of diagnosis I requested for my son with ADHD and additional autism is not granted.

I wrote about his development and after that took the DSM IV diagnostic requirements for autism.
He fitted almost all features.

Then I took the same list from the diagnostic manual they use for schizoid personality.
None of the features fitted.

I even mentioned his characteristics that provide evidence against a diagnosis of schizoid traits (when you can call that a diagnosis. Hmm).
  • no schizofrenia in the family history.
  • limited non-verbal communication.
  • Strong need for routines.
  • limited interests.
  • he has no hallucinations, non-realistic perceptions, no need for social withdrawal, no pseudo-psychotic (nor borderline) episodes.
In his files it was stated they didn't find any indication for impulsiveness.
Well, it's one of the characteristics of a typical ADHD'er, and we're constantly confronted with his impulsiveness. We're kind of used to it and still we feel bothered by it.

It was said in the reports he didn't have any special interests.
Well, I guess gaming all day isn't special enough, otherwise it would be clear that that is his special interest.

There are only 2 problems that might point in the direction they're thinking.
  1. He showed a remarked change in his behaviour around age 17. It almost seemed we were speaking about late onset autism.
    But... the woman who questioned me never ever asked if there were circumstances leading to that change of behaviour.
    Discussing the matter at home with a friend was all we needed. When you're too close, you sometimes miss the obvious.
    School stopped, sports stopped, and with it the social contacts that came with these social events. Added to it: he lost his girlfriend and his older brother moved out.
    He had to find a job to be able to study the subject he wanted, but as a consequence of the recession he couldn't find a job.
    He lost too many things at once for a kid his age, and couldn't cope. In fact he didn't take any initiative to move on.
    But he didn't get psychotic, didn't hallucinate, didn't withdraw more than that he went to spend his time on what he liked best.

  2. Chaotic thinking.
    When they couldn't decide what his diagnosis would be it was mentioned that his thoughts were chaotic.
    I can understand that a person who doesn't know enough about autism and ADHD and hasn't lived with such a person for some time, might see nothing else than a mishmash of thoughts without any interdependency.
    Considering the fact that an autist is very susceptible for all sorts of influences that provide information, like lights, sounds, but also sensations from his own body and even his own thoughts, we can understand that there's a constant influx of items of information that trigger a thought response.
    Someone who can shield himself, someone who is able to discriminate between relevant and non relevant information, will pay no attention to irrelevant influx and simply have no or less thoughts about that, and he will be able to stick to his line of thoughts.
    Selective perception is in autists either extremely good, or extremely bad.
    When the person is impulsive, that means he'll follow these new impulses, follow these new lines, new threads of thought and he'll land far from what he wanted to tell, for instance.
    Combine the two and you'll see the way of thinking of my son. (associative and non selective thinking)

    When he was young conversations went like: "Mom can you help me with my homework? Why is he shewing? There's a tap running upstairs or it's raining, have you heard the birds this afternoon when it suddenly started to rain? I think they all startled and made each other jump up, we have jumped during gymnastics and I did well, did you get that cardigan you wanted? (trying to find out if I did well)I was feeling cold this afternoon. Not now but I would like a hot chocolate, I never get one and you never help me with my homework. You always seem to be distracted when I talk to you. "(Yea, trying to find the inner links. LOL!) OH, and this was said in one breath, without the pauzes I created with interpunction.
    When he grew older he learned to keep thought by himself, so a monologue like above was even more fragmented to the listener.

    Add memory problems and you'll have my son trying to make something clear to someone who doesn't know him.

    I bet she thought he was rambling like a nutcase. Maybe she even thought he saw something flying by which she couldn't see.

    There's a sharp difference between autistic+ADHD chaotic thinking and the inner world of the chaotic half fantasy mind of a schizoïdic person.
And to be honest, I'm not sure how much effort was put in to understand him.
When you could see how many language mistakes were made in the report....

I feel they've made a mistake, and I've found plenty of arguments to underline my statement that the diagnosis needs to be on the autism spectrum.

I've worked with psychotics, I've been trying to have conversations with people who were in the middle of a schizophrenic episode, I know the difference.

Neuroleptica have been offered.
Well, I've seen the detrimental effects on people who were not indicated to use them.
Me oh my.
Unless that psychiatrist is able to convince me completely I can't take the responsibility of accepting that kind of medication for a boy of 18.

Interesting is that during all the years he was in contact with his former psychiatrist and this psychiatrist never ever the question has been raised whether he was suffering from schizoid traits.
I've been asked quite some times, however, whether he was autistic beside having ADHD. By his former psychiatrist, at school and even by friends.
But a formal diagnosis couldn't been made, because that was in the time that here in The Netherlands the combination of the two was thought to be impossible.

I don't want to go in detail here, but it's clear the last word hasn't been said and written about it.

My son doesn't have schizoid traits, he's got autism.

Because of that desastrous school he went to we were not able to see it well. We just sensed it.
Because the way our household was run, the way our upbringing was for a large part to promote development in autistic children, he benefited from what he got, and thus we couldn't see his autism as well.
But it was there.
No schizoid characteristics, but plain good old autism.

But ofcourse, it's a huge effort to review what they have done and certainly not done during their diagnostic process.

I wouldn't care a lot, if it wasn't that as a consequence of the diagnosis they provided he won't get the special help he needs at school, to get a job, nowhere.
And I have to say... with the introduction of "schizoid traits" in the diagnosis of autists we're back to where it all began. At the place where autistic people were told they were schizophrenic and they got medication that made them worse, they were admitted at mental facilities and never got out.

What did we autism advocates of the first hours start with?



Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!






This post is part of a series
about lack of knowledge,
lack of consensus between disciplines
and the need for a formal diagnosis
with a psychiatric label
to get support for a unique individual
with autism.
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