New here - working on getting a dx...

iVillage Member
Registered: 03-27-2003
New here - working on getting a dx...
2
Sat, 08-02-2003 - 3:49pm
Hello, my name is Terri. I have 7 year old GGB triplets. My concerns are with the B in that group.

He's an interesting kid to say the least. Since he was 2 1/2 he has been the dino-boy. He knows more about dinosaurs than probably 99.9% of the adult population. I tell people my son is into dinosaurs and people will say, "Oh yeah, so is mine." Well, they just don't get how INTO dinosaurs this child is. He can read the names of over 100 dinosaurs, tell you in what period they lived in, where they lived, what they ate, how they ate. At age 5, he could recite all the geologic time periods since the beginning of time in order.

In addition to this, he doesn't make eye contact even with us much. He can't look at someone more than 10 seconds. His social approaches are often (not always) inappropriate, particularly with girls. He'll go and grab and girl around the waist and hug her until she tries to get away. On the last day of school, he ran around kissing every girl in the class. He knows the right line to ask someone to play, and sometimes uses it - if he thinks about it. He often plays alone at recess even though he is well liked by the kids in the class, they don't go to him unless they want to play dinosaurs, monsters or some other kind of creatures. When he's playing alone, he'll sometimes go someplace else if a group of kids comes to play in his area.

Anyway, each of these traits can and have been for a couple years been explained away by other things. The thing that gets me is that he has all of them. If it were one thing, I could understand the explanation that a lot of kids get into dinosaurs or a lot of introverts like playing alone. But he just seems to fit this group of traits that is called Asperger's.

Here is the thing - in our area, the official dx process is long and expensive. ...and this is for them to tell me something I pretty much already know. At this point, from my own research, I'd be surprised if they told me he didn't have AS. In fact, I'd probably get another opinion. He has to do all this psych testing, SLP testing and after that - IF they both agree that AS is likely, he gets to go to the neuropsych (who is now taking appts in December). I know that I need to know for my peace of mind and to ease his mind (he's just starting to realize he's different at age 7, but at this point, he doesn't care.) I think it will help his teachers and school as he gets older too.

Oh and I have a friend who has a masters in early childhood special education and has pretty much seen him in a lot of different situations that is absolutely sure he has AS and she said she's known since he was in preschool.

So, can someone commisserate with me about this - I feel bad putting him through all these testing and stuff, so tell me why I need the official dx. I feel I need it, but is my feeling worth it?

Thanks,

Terri

Terri, mom of 12.5 yo triplets in 7th grade - ds w/ AS, 1 dd/ dyslexia and 1 dd gifted
iVillage Member
Registered: 07-11-2003
Sat, 08-02-2003 - 5:49pm
Hi Terri, welocome to the board! :)

I know it's a long and arguous road to get a dx but I always recomend that you go ahead and do it. I'm not a big fan of lables but the dx will open up services to you and your ds that otherwise might not be available. You're right, it can be expensive, and treatment *can* be even more so, but there are avenues you can persue to minimise the costs AND make the proccess easier on your ds and the family.

First, have you spoken to his school yet? Under IDEA (Indeviduals with Disabilities Education Act) the school must conduct a full evaluation upon your request, free of charge. And if you don't agree with their findings you have the right to ask for an outside eval from a private dr or organization, at the school's expense. Does your ds have an IEP (individualized Education Program)? If not then push for one. If he does then call an IEP meeting and push for a full ASD review. With money being so tight for schools, especially recently, they try to get out doing the things they should by simply not telling the parent of all their options. For more infor mation of IDEA see this link: http://www.nichcy.org/idea.htm It explains IDEA and what what the students and parents have a right to. The school is also responsible for making sure the sudent gets whatever needed treaments (Occupational Therapy, Speech Therapy, Social Skills Training, etc) at the school's expense.

Also, have you looked into any local governmant programs for the Autism Spectrum? You didn't say where you lived, but quiet a few states have programs available through county services that assist families and children is obtaining a complete ASD review and reciving any treaments needed. Some churches do as well. There are also organizations such as the Davis MIND Institute that go the extra mile to help families sort through the red tape and get the services they need. Even though there is still a lot of help needed there is more help available than most people are aware of.

As far as whether or not it would be worth going through the rigamarow to get the dx, in the end it's up to you. But having that silly peice of paper is like a ticket to all the E-Ticket rides. Some of the rides are good and some are frustrating as heck. But there are things that can come up later that it might be handy to have the dx for. My 12yo dd (PDD) didn't get her dx until she was 11yo and it was harder and longer to get the services she needed when puberty came along b/c we first had to go through getting the dx. I have two other kids on the spectrum, both got dx's early and life has been MUCH easier in raising them. They were able to get the services they needed right away, at the ages they would have had the most impact.

Well, I'm being pestered now so I have to get going. I'm sorry if my relpy sounds a bit clinical, I'm being distracted at the moment. But I am looking forward to getting to know you better and hear more about your son. :)

Peace,

Candes

iVillage Member
Registered: 03-26-2003
Tue, 08-05-2003 - 7:49pm
Hi Terri,:-)

I totally agree with everything Candes said. I am in the middle of getting a diagnosis for my 4 yr old son. We go in September to see the psyciatrist. I'm hoping he agrees that he has Aspergers. I already feel that he has Aspergers and treat him like he does. We have alot of support and they agree that he probably has it. We are doing everything for him as if he already had the diagnosis. I have read alot on the subject, and like you, would be totally shocked and want another opinion if he says he doesn't think he has it. I will be so glad when we do get an official diagnosis because then I will feel like I can finally move on. Right now I feel like everything is up in the air and I hate that feeling. I want to know for sure what I'm dealing with so I can move ahead. I hope this helps.:-)

Susan

There are 4 things you cannot recover.
1. The Stone.......after the throw.
2. The Word........after it's said.
3. The Occasion......after it's loss.
4. The Time.........after it's gone.