Advice from the school district.... to "wait on getting an official Asperger Dx" ??

iVillage Member
Registered: 01-26-2011
Advice from the school district.... to "wait on getting an official Asperger Dx" ??
8
Wed, 02-23-2011 - 1:26am

My son is almost 5, and beginning school next year. We still have not received an official Asperger diagnosis. He has had 5 out of 5 different GADS turn out "high probable" and everything I read about Asperger Syndrome tells

iVillage Member
Registered: 01-26-2011

Thank you so much. I want to print that out and put it on my fridge! I am glad I found this place. I am greatful for all of that. Today was a bad day. I needed this!!!

Avatar for skystrider
iVillage Member
Registered: 06-14-1999

Gosh, I thought schools had evolved passed this by now.

iVillage Member
Registered: 05-05-2003
By the way, diagnosing my son earlier allowed him to put a name to what made him feel awkward. It gave him some comfort. It also gave us an opportunity to help him develop social skills that he otherwise might not have developed if we had just waited.

We avoided labeling him by bringing up the AS only when it was relevant. In other words, no one really knew, but us, him, and his immediate teacher. He doesn't hide it, but there's just no need for him to mention it in everyday conversation. In fact his principal only just found out about it today.

The diagnosis was for his benefit so that he understood why he felt the way he felt. They say that AS kids are not empathetic, but I believe they're extremely empathetic, but shield themselves due to lack of social undertsanding. His feelings were always being hurt and he didn't know why. When he found out about the AS, he was able to manage and rationalize that confusion. He developed coping mechanisms that have kept him mainstreamed to this day.
iVillage Member
Registered: 05-05-2003
My son is 11 now and we finally got his diagnosis at about 8 or 9 and I'll tell you, it was a struggle. I was in the same position as you. I KNEW what I was looking at, yet the world around me balked and balked. It was incredibly frustrating because when I found myself in situations where I needed a word to explain what my son was going through, I would say, "I suspect Aspergers." and the response would be, "Has he been diagnosed?" and I'd have to respond, "No." That was always met with a look which said, "Suuure."

I had to become aggressive. I had to insist (politely, but bluntly) to the point that they did the tests I asked because they wanted to shut me up. Seriously, I first decided to go the route of the most respectable institution in my community which was Nationwide Childrens' Hospital. First my son had to get a neurological exam and then I was referred to their psych evaluation department. Because my son's case is so mild, based on their tests, they were going to assign the NOS diagnosis, but from being with my son day-in/day-out I knew it was much more clear than that. For some reason, if a situation isn't black and white, scientists are loathe to commit. The problem is that with spectrum disorders, ADHD, SPD and all of their companion illnesses, there are an amazing number of shades of grey. I had hit another wall.

I decided, the day before the meeting with the doctor that I was going to sit down and write a list of all AS symptoms I could find. First, I started with an introductory paragraph stating that while I was not a physician, my own research left me with no doubt that I was seeing AS in my son. I added that if the doctors at Childrens' disagreed with me, I would acquiesse, but they would have to give me a darn good explaination as to why. Then underneath, I wrote out a long list of every AS symptom I could find. In outline form, after each symptom, I wrote whether I'd seen it consistantly in my son, if I'd seen it occasionally, or not at all. Under that, I wrote any examples I could think of in which he had exhibited that behavior. I won't lie, it took hours, but when I was done, I emailed it to the lead examiner.

The next day we met and he said, "I'm glad you sent me your list. After reading it, I have to agree that your son has Aspergers." FINALLY we had an official diagnosis and its been alot easier getting action when it comes to any assistance my son needs.

Like I said, my son was not diagnosed till 8 or so, but that doesn't mean we didn't suspect something earlier. His social skills with kids were awful, but with adults he was fantastic. Still, I was the only one "evaluating" him, so I opted to wait till he was enrolled in kindergarten to decide on anything. I hoped that if anything was amiss, I'd hear feedback from the teacher and I did. At that point I got him the Tourettes diagnosis. After that I worked towards the AS diagnosis as I explained above.

No, kids don't "outgrow it", but they do outgrow some symptoms, develop new ones, develop new companion syndromes. It all evolves, waxes, and wanes. There are two things you can't do (in my opinion). You can't live in constant fear of the next thing, but you can't expect things to completely stabilize either. My best advice is to make sure that as a human being, you don't get lost in the whirlwind. You don't suddenly realize that your life is all about the AS. Make time time for you, for your marriage, and take the process of working with your child's issues as they come. Also, don't put the doctors on a pedistal. They're working *with* you and you're paying them. Good money I might add. I love our docs, but they ddn't come directly to us. I had to go through a string of arrogant boneheads to find the amazing men and women to help my son. Remember, you live with your son 24/7. Be flexible, but if you are convinced you're right, then your doctor shoud be flexible enough to listen.
iVillage Member
Registered: 02-28-2008

You can pursue all that without the dx and you teach him about neurodiversity without disclosing an uncertain dx to him.

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 01-26-2011
Thank you both for your responses. You are correct. Ca Regional Ctr will not give services for AS, but they will direct you to people who can help (if I understand correctly) and you are right, it probably won't change much educationally for him. I guess I don't want him to hear the word Asperger's at the age of 13 and have it feel like a bad thing. If you grow knowing it makes you special it won't seem like a biggie. I also need to find as much parent support as I can. I would love for him to receive behavioral therapy and I would love for my husband and I to learn how to parent some of his rigid thinking and OCD behaviors. I want to learn how to be the best mommy I can for him and I am not sure where to turn for that.
iVillage Member
Registered: 02-28-2008

The higher functioning a child is, generally, the harder it is to dx them young.

Andrea, mom to

Graham
Miles
Anson
Avatar for hokie1999
iVillage Member
Registered: 03-27-2003

I have no advice but am in a similar boat, except that my son is 8. I don't even know who to go to for a diagnosis. His teachers (this year and last year) don't see the things I see. My oldest son's therapist sees it and I filled out a form that definitely puts him on the spectrum. I feel just like you- I'm sure he has it and just want to know for sure. Largely so he will know. So he will know there is a reason that he is a bit awkward with other children, a reason that at 8 he doesn't have the coordination to ride a 2 wheeler, and so many other things. My impression is that it becomes more obvious as the child gets older. That's certainly been our experience- as a 4 or 5 year old he had some odd movements, and a different way of speaking, but it seemed within the realm of typical. But as he's getting older those things set him apart more. He's constantly pulling up his pants and just looks different int he way he moves, runs, and does many things. It's so clear to me.

Good luck to you as you try to get a firm diagnosis. I'll be watching this thread so hopefully I can find out who will diagnose!

Becca