psych eval for autism very discouraging.. - Autism Spectrum Message Board

eweejoe · 04-05-2001, 09:12 AM

We took Keith to Knoxville for his psych eval yesterday. The doctor confimed his autism diagnosis, but said it was due to his TS. She had some very discouraging things to say, but in the almost 9 years I have been dealing with this, I have learned to follow my heart and not the "professional's" advice. She said that since he was so old that he probably would not benefit from the ABA therapy much, if any. I don't agree with her, although I know that the therapy is less effective on him since he is older. Makes me very angry that NO ONE has ever even mentioned autism to me..I have tried and tried to get someone to listen to me that I feel he's more autistic than mentally retarded. Not until I finally saw an article that linked TS with Autism did I finally realize that I was right, now that it is so late in the game. I was also told that every child that is autistic has some degree of mental retardation. (thought you guys would LOVE that one!) And, she said that it has nothing to do with the stomach, the diets don't work, and it is a 'brain' disorder. She gave me a link to a website that supposedly proves that Secretin doesn't work either. So, I left with the feeling that this is what I am stuck with and there's no hope. She also didn't agree with me that Keith went from a normal 'typically' developing baby at 6 months old to a total zombie after his first dose of phenobarb.(for seizures at 6 mo) She blames his 'zombie' state on the infantile spasms. He had them for a month before he was diagnosed and didn't regress at all. I have home video showing the significant change in Keith overnight. I also told her that I read online (on here) that phenobarb was the only known anti-convulsant to cause brain damage. She blew that theory off too, once again blaming the infantile spasms. Even after I explained to her that the medication didn't make them any less frequent than before he started taking it. We were lucky in the aspect that he didn't have but maybe a few clusters of them a day- whereas some kids have them constantly 24/7. His neurologist was even very optimistic that he was going to be fine.."As long as he is not having a seizure, he can learn". I am basically very discouraged right now. It will take me a day or two to get back on track, but I will. Like so many other people here, I would be willing to bet if Keith were her grand-son she would have a whole different approach to his treatment. Sorry to ramble on for so long (I am good at that). Please let me know if you have any advice/experience to share with me on this. As you can tell, the doctors are NOT up on things around here and I wouldn't have even gotten this eval if I hadn't pushed it. I know Keith's situation is a little different than most since he has a primary diagnosis of TS, but in a lot of TS cases, autism is NOT present. Thanks!

no_longer_sad · 04-05-2001, 10:04 AM

I’m replying to your posting just to let you know that I read it and feel saddened for you. It is extremely disheartening when we are told things we feel are not appropriate but find ourselves stuck when we are not listened to. We know our children best yet we still feel that some professional out there may see something we might have missed. In your situation, like all of us here, you’re trying to get the most information to enable yourself to get the best possible help for your child. And that is the right thing to do. However, if you feel that the information given to you is not accurate, seek out other professionals. I understand you said that your resources there are limited, but the great world wide web is offering so much to us now. Nothing we can realistically invasion is impossible so keep reaching for those stars. So, your child might be nine and may have passed some windows of opportunities, but I’m sure others exist. Don’t allow anyone to tell you otherwise! I’m just wondering about something your psychologist said to you. How is it that diet has nothing to do with it? If it is a brain disorder, doesn’t it follow that what we put into our
bodies DIRECTLY affects our entire body, as well as the brain since it is an integral part of the human body. I’m not saying here that diets will cause or cure autism, but everything consumed serves a purpose. It follows that too much of one thing causes stomach aches, cramps, etc. and too little of something leads to a deficiency. I believe you’re on the right track and you are absolutely right to follow your heart. I’m not clear on your son’s situation but believe me, it’s never too late. I am now looking into sensory intervention and it makes so much sense. Since all of our parts work in harmony with eachother, it follows that when one part is out of sync, it affects the equilibrium of our bodies as a whole.
I can go on for hours but this is enough for now.

Take care,

Sam