Aspies For Freedom

Hi, I am Thomas' dad. Thomas was diagnosed with AS about 1½ years ago. My problem with that diagnosis is that I truly believe that it is not correct. My wife on the other hand has taken it very much to heart (she has issues of her own, and if he is "sick" then she hasn't failed as a mom), and this is proving to be quite a strain on our marriage. Basically my point of view is that Thomas is reacting to the way our marriage is, and the signals that we send as parents.

Until we moved and Thomas started in a new kindergarten there were no problems at all. In the new kindergarten he was met with rejection (the kids were a tight nit unit), and there were very little grown up support to help him integrate. We, the parents, tried very hard to get new house and garden sorted out, and Thomas felt left out and rejected. He reacted very strongly to the situation with a lot of crying, and rage. Rage generates rage and we did not handle this period very well to say the least. Thomas self esteem plummeted and he started hiding under the table, and things like that. Eventually I started to handle the situations differently, giving him the support that he needed, and we vere able to make small progress.

Then Thomas started school.... This in a small town where most of the class came from the same kindergarden that he went to. So, rejection from the group continued and support from the teacher was non existant. Thomas started playing the clown and otherwise keeping to himself. He used a lot of time going to the toilet to get away from the others, and so on. In comes a school psychologist saying he should be tested, because he needs help. We say OK, we know he needs help. So we go to the tests, no epilepsi, a bit of bad coordination, nothing serious. The doctor thinks it wrong that he has trouble standing on one leg. Guess what, he has a flat foot. Does she notice? Nooo. Does she care when told? Naaahh. We go for the ADI interview. They misinterpret our answers to suit them. We go for the ADOS test. They create an intimidating environment and subject him to tests that are stupid. When he starts fidgeting they say it's because that he has AS.

Now we are stuck with a diagnosis that is wrong, and I really would like to know what can be done to get rid of it. How in Gods name do I get them to retract it? How do I handle the issue with my wife?

Anybody out there who can give me some pointers?

Regards

Thomas Dad

That's somehow harder to do than to to say:( How do I justify or explain to my 8 year old boy that I want him to be submitted for tests? Do I just say, Thomas you behaved weirdly a couple of years ago, and were diagnosed wrongly, so now we want you to take the tests again? That is not fair to him, but then again letting him grow up with this diagnosis and special treatment that makes him stand out in class is definitely not helping either. On top of that, if my wife keeps up with her behaviour then I/we run the risk of him reacting to her. This can be misinterpreted by a psychologist.

What really bugs me is that they found what they were looking for. How do I make sure that I get him reevaluated by someone who is actually objective?

I am somewhat lost here. If he is misdiagnosed, as I believe, and he is receiving special attention, how can that benefit him. Who has ever benefited from special treatment which they didn't need? If I treat someone as if they are someone or something else, and I do that at an age where their personality is to be formed, do I not make a negative impact on their development?

I wish we could do just that. However, my wife insists on extra ressources at school, and keeps bringing up the subject in a matter like "I can't take it anymore. I need help handling him." etc. etc. Problem is, she creates confrontations with him, and then blames him for reacting to the pressure that he feels.

Point taken. I truly don't wish to offend anyone here. However, my wife considers this diagnose a disease (as well as the doctors ). That is the only reason that I quoted her on that point. It gives an indication of the "pressure" that I feel.

My intention is to be able to look at myself on my dying bed and know, that I never lost faith in my boy, and never gave up supporting him. That of course, also means that if - for some reason - it should actually be the correct diagnose, then I will still be all that I can for him.

Been there, done that, didn't help
Yes, at times we do have a problem communicating. I feel that she wants to be right, and she feels that I am arrogant. Funny thing is, we mostly feel that way when the issue is Thomas.

We have a very fair division of chores. Most of her friends and colleagues envy her. Not blowing my horn here, just stating a fact.
She has never had a pet, and only sees the problems not the advantages. I know from my own experience how much good a pet does to a childs self esteem.
Yes, you are right. There is a fair amount of rage inside of me. Every day I have to fight an uphill battle to compensate for her treatment and attitude towards our son, as well as making sure that our marriage stays on track. It is tiresome and lonely.

I don't feel that I am making excuses as such. I feel that I try to protect him and give him the best start in life that I can. I admit that he has had issues, yes. I also admit that he still has issues with low self esteem, and needs to be helped in learning how to interact with others. I just object to the diagnosis because I don't believe it is correct.
A flatfoot is also known as a splayfoot. He has two of those It is a condition where the small bones in the foot/feet has not grown together and created the arch below the foot. It is ammendable but it does take a long time.

Thomas was the essence of a boy with a high self esteem until he changed kindergartens. Good friends and loads of attitude. Always happy. Outgoing. Everybody adored him and he had no issues with eye contact, repetitive behaviour etc.

Thanks for sharing that, I appreciate your thought. What ever did happen to diversity?

For some reason, here why I reside the tendency is to place grown ups with AS in a protected environment, and only accept sheltered employment etc. It can be a very crippling diagnosis to have, especially if you do not qualify for it. That being said, should he actually qualify (which still remains to be seen) then it won't alter much for me (I hope). He will still be my beautiful lovely boy.

My fear is that when Thomas reacts to my wifes behaviour then she will indirectly influence the result of the test. If she batters his self esteem just prior to the testing then I know that he will react accordingly - start fidgeting etc.

Thanks for all the input to all of you. Please keep it coming.

He's in third grade by now (8 years old), so he is in school. The school loves the diagnosis, it makes it possible for them to have extra ressources allocated which comes out of a different public fund

I really, really try to think of whether he loses out. I am a grown up, I can more or less make my choices, and accept the consequences. If I loose, then it can be by choice. If Thomas looses then it is not his choice per se.

Yes, it is a nice name, isn't it?

Worst case scenario includes protected sheltering when he becomes an adult, and sheltered work, if any. It also means no employment - even if you are highly functional - in branches like defense or police. I think that is an extremely high price to pay for a wrong diagnosis

Not me But, then again, those doctors could have made me just about anything they wanted. They found what they were looking for. In the papers we received after the testing and the diagnose, they had written - prior to seeing Thomas - that they suspected AS. How nice is that?

It is, except that they make sure to inform school, and childcare. It also is accessible to public employers....

That is exactly what I am looking for. I just need to know how to go about it. At what age, and how do I make sure that the reassessment actually carries any weight when the first test was done by a public child psychiatry unit?

My nephew is diagnose AS, and he is as normal as me. Loving, caring, outgoing, no obsessive behaviour of any sort. All you could wish for   His mom (my sister) messed up his life, and he is headed for the worst case scenario i described. Probably today he is not fit for anything else. It is so sad.

You don't. I really appreciate your input.

You don't undermine my feelings. I am here because that I need input to the situation that I am in. You provide good input, even though it is not related to the reassessment issue. Does that clarify?

I'm guessing you mean the post about my nephew?

My nephew, god bless him, is my sisters son. My sister is a chapter in herself. Manipulative, obsessive, manic-depressive, attention seeking and a compulsive liar. She will do anything to get attention. Including mess up her childrens life so bad that they will become institutionalized. That is what happened to him. It breaks my heart to see.

I live in DK

She has trouble letting him make decisions relating to himself: What he should wear, when he should do his homework etc. When he stands up for himself and speaks his mind she sometimes comes down on him like a ton of bricks.... That's the control freak speaking it's mind   That is another challenge, how do I put it when I think that she is the one who needs counselling. That's not easy to say polite...

Thank you

Well, how should I describe him? Feel free to ask, I will try to answer as elaborate as I can.

I wouldn't know if I was in denial, would I?

What is the DSM-IV?

When Thomas went to the first kindergarten, before we moved, he was part of a group that were could "The fantastic four". They were always together as a harmonious group, and they were really good friends. This was one of the very hard things for him to cope with: Loosing friends and having trouble making friends in the new kindergarten. At the new place most of the boys had been to nursery school together and had known each other for about 4 years.
The doctors made a big fuzz about the fact that he was interested in dinosaurs from age 3 to 5. I really don't understand why that should be such an issue. He has two over stimulating parents and he is an only child. We read a lot about dinos in those days, but today he really isn't interested in them any more. Now it's swimming and computers. He's taking up roleplaying games next month.

I agree, but at what stage?

I will keep that in mind

I'm getting good at paddling   I actually went unemployed for 18 months and took care of the house, and Thomas when he came home from school. IMO the changes that he made during that period of time was significant. He had lots of friends visiting and he really started being positive and outgoing.

I divorce is a no go, for two reasons:
1. I swore to love her for better or worse.... And I stick to that.
2. The statistical change of having custody as a man in DK is somewhere around 5%. I am not a gambling man, and a 95% of leaving him with his mom without my being able to intervene is, as you probably guess, unacceptable.

You are not being offensive.

Sure I will - rather honest and blunt, than dishonest and polite

It does seem that people may get this impression, I did not aim for that and I don't need that. I did ask for advice on how to go about the reasessment.

I could not agree more, there are a number of reasons why one might show these - for lack of better word - symptoms. AS is IMO just one of them.

That is a valid point. I would like to counter with a question. This behaviour - energy, attentiveness and boredom - is it as such unnormal in young boys who does not have AS?
I do not think that Thomas is more clumsy than other kids his age, he just have a problem with splayfeet wich can affect his balance.

Maybe, just maybe, the first position arises from the fact that I have read the psychologists file on Thomas? The second position arises from my being present at the ADOS and seeing how it was conducted? The third arises from the fact that the psychologist gave him a rubber strawberry and a tiny toy car and told him to make up "a game" with them. So there you have a kid in a situation he is not used, with a person he does not know, being videotaped and "monitored" by two other adults and you are telling him to make up a game using these two items (pardon me for thinking that is stupid!)?

Unfortunately I am not based in neither the US or the UK, so the first to points does not apply to my situation. The third I could, and would, accept if I believed it to be right. I have no issue with AS, not in me or my son or my wife or anybody else, provided that it is a correct diagnosis.