Tuesday, March 2, 2010

Update and my thoughts about schizoid-autism



Yesterday I had a hell of a migraine.
That I'd been caught up in the Olympics and was very tired didn't help.

Well, I took a slow day, dealt with the comments of the gentleman of the house (does he knows the requirements of being a gentleman???), and went to bed earlier.

Took a sleep in today instead of walking through the house at 5.30, and I'm feeling better now.

I need to get in a normal daily routine asap because important meetings are scheduled.

The first one is tomorrow with the psychiatrist of my third son, the son who got a wrong diagnosis.

I've been observing him even better than before and I've seen nothing that makes him deserve the label: schizoid.
Not even as a prognosis.

When I objected against the wrong diagnosis I threw all my data and stuff on the table, because I knew my diagnosis was right.
But I'm considered first the mom and then the professional, so it's mom against the autism expert.

Well, living day to day with someone sure gives a better insight than seeing someone 4 to 5 times a year for 10 minutes, and a diagnostic procedure that takes a few hours, mainly of filling in questionnaires,ànd with someone else.

We sure have things to talk about tomorrow.

The guy is all smiles and fun, but I'm not all too happy with the fact that I had to tell my son the diagnosis and had to discuss the proposal to take medication on top what he has for ADHD.

Ofcourse I was as unethical to tell him that I am completely against medication indicated by a diagnosis someone can't agree with.

In an emailconversation the psychiatrist wrote that we phenomenological agreed.
That's a very interesting remark.

Because it means we've observed the same. (Phenomenological means: seeing reality as it presents, without explanation).

Isn't assessment about taking notion of what's really there?

I've put the observationa aginst his diagnosis and against mine.
And the definition and observable data fitted my diagnosis better.
No one can dispute that.

So why on earth stick to a diagnosis that doesn't fit the book and sure doesn't fit reality?

Is it ego?
I'll be kind to him.

Maybe the main question tomorrow should be:
"What point to you want to make by disagreeing?"

With my diagnosis he will get the proper support to get education, a proper place to live and a job, and the chance to outgrow his diagnosis.
He won't be labeled too much, as autism is accepted right now.

With the diagnosis of schizoid traits (which, by the way isn't a diagnosis at all) he won't get the support he needs, but will be considered a freak.
People won't try too much to get his best behaviour shown, because they will be afraid to put too much pressure on him and make him freak out.
There are no special funds for education and job support, and living in a protected environment means institutionalisation.

Ofcourse we're considering a second opinion.
But who dares to go against the diagnosis of the socalled top expert?

So I feel I have to take this on myself.

Between you and me, I think there's a new introduction of the diagnosis of schizoid personality into the area of autism which is unwanted.
That someone conducted research between 1990 and 1995 under a small number of children doesn't mean that this research is still valid today. Especially not because it was mainly research on children which were already diagnoses by others and probably treated too.
I understand some scientists go back to their roots at the end of their carreer and want to make a statement they will be remembered by.

In the past I had to take up my knowledge and stand straight in front of a professor of obstetrics and gynaecology who just started research under pregnant women which was not only unethical, but also bases on the wrong scientific basis.
He didn't like the fact that I confronted him with that, especially not because I was such a young woman and not even a medic. But when he heard I took part of the education in medicine by one of the most famous neurologists, he decided to have a look at my opinion after all.
That he withrew the researchproject and repayed all the funds says enough, doesn't it.
And that he wanted me to enter his ethical committee says even more.

Maybe it's time again to take such a firm stand.

I don't think people are helped with a diagnosis of schizoid characteristics or traits, unless that's the only true diagnosis.
Introducing the term schizoid at the autism spectrum doesn't do justice to autism itself and certainly not to the people dealing with it.

When we're confronted with late onset autism symptoms that doesn't mean there was no autism in the first place.
I've made clear that in the case of my son circumstances made it impossible to observe well, and they enabled symptoms to be explained in multiple ways. Circumstances even were the best one for young people with autism, so the real problems didn't even surface.

In case you're reading this post:

When the circumstances were gone, autism revealed itself in full.
Late onset autism is a description of the observable reality. It doesn't state that there was no latent autism.
I've read that you've written in the past that schizoid characteristics reveal itself during puberty.
Maybe... but that doesn't say that symptoms which reveal itself during puberty are schizoid characteristics.

It's agreed upon in science that the symptoms need to fit a certain descriptions and need to follow a set of rules.
They fit my diagnostic set of rules better than yours, so my diagnosis is better.
I can explain any disagreement in a better way.

One of the main issues is interest in social relationships.
A person with schizoid characteristics is not interested in relationships.
My son is, and he enjoys them to bits when he feels people accept him the way he is.
He feels sad he can't understand social mechanisms, he doesn't understand jokes etc etc.

He's on the autism spectrum.

So give me the joy of knowing my son got the right diagnosis and can go on with his life with the support he needs.


Grrrrrrrrrrrrrrr




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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