Need advice how to proceed for a not-yet diagnosed child..

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This is my first post, I'm new to this whole subject....

My son has not been diagnosed with Asperger's (as yet)

My son has been going through a rough patch in school (4th grade). Every day he comes back with tales of how someone had beaten him up, or called him names. The school says that he annoys the other kids and despite their "best" efforts this keeps on happening.

Till March he had had the occasional incidents with other children (~ once every two weeks or so), and the teachers have always noticed he's a bit odd. He frequently needs a personal invitation to take out books and another invitation to open them, doesn't take notes, but he's always gotten by OK in school, so we mostly ignored it. He also makes faces to himself in class and noises which has annoyed several teachers, and he loves chewing (like chewing shirts).

At home he does everything just like our other children. Generally he is the one with the most original responses to questions, and occasionally a sweet type of naive. He has had friends and even a best friend for several years (till March), and plays fine with kids in small groups. When he is in large groups or big social functions, or school assemblies he does get something I would refer to as "intoxicated" (but without drinking )

The school has been pressing (quite hard) for us to get a diagnosis, so that they can get the funding they need (in-class aide for several hours a week, and someone who will give the teacher consultations.

We took him to a psychologist who suggested he may have Asperger's syndrome.

But after reading the diagnostic criteria (and seeing a selection of youtube videos, he doesn't really match (no repetitive movements, no focused areas of interest, no adherence to routines, fine with changes, understands language metaphors and similies.)

It is our feeling now that if we do a multi-disciplinary evaluation, he could be categorized as either Asperger's or PDD-NOS (a number of professionals seem way too eager to hand out a diagnosis, even without meeting the child...

Questions:
1. Anybody in the forum regret having been formally diagnosed?
a. Has the label caused more harm than good for how other's view your child? (including parents, teachers and peers)
b. Has having a diagnosis ever been hurtful to their ability to challenge themself? (Do they use it as a crutch?)
2. Has anyone in the forum switched schools and "removed" the label.
3. Did you tell your child about the diagnosis?
a. He's not stupid, he asked us after the second meeting with the psychologist, "why did she ask me those weird questions, does she think I'm autistic!?"
4. Has anyone pursued treatment solely outside the school system? (My trust of the school system is not at an all time high)
5. Has anyone received a personal diagnosis without specifying a category?

Any help or insights would be greatly appreciated,
Thanks,
Harold

Hi Harold,

When my sons (age 9, both dxed with Aspergers) were first going through the diagnostic process I had many of the same questions that you do, but having the dxs has been a largely positive experience. I can only answer your questions based on our own experiences.

1. Anybody in the forum regret having been formally diagnosed?
I don't know about others, but we are actually very grateful for the dx.
a. Has the label caused more harm than good for how other's view your child? (including parents, teachers and peers)
My sons teachers know about the dx, but the other parents and students do not. The teaching staff makes every effort not to single my child[ren] out due to the dx and to keep it private. The "label" has benefited my children in regards to how they are treated by the teachers. Instead of being perceived as rude, lazy, whiny, difficult etc. and treated as such, they are treated as children with special abilities and challenges. And although the other students and parents do not currently know about the Aspergers dx, we are not fooling anyone with a pretense of "normal". The other kids know that something is up with my sons (one in particular). They have some unusual and off putting behaviours. It sounds like this is also he case for your son. I am not certain that it would be less socially damaging to be known as the kid with AS, than to simply be known as the weird kid? We may be more open about the dx as our sons get older, depending on their own preferences.
b. Has having a diagnosis ever been hurtful to their ability to challenge themself? (Do they use it as a crutch?)
I could see the possibility of this in future, but we have not encountered it yet.
2. Has anyone in the forum switched schools and "removed" the label.
There is no way my children could achieve their best potential at school without the accommodations and support that come with "the label", and so, emphatically no.
3. Did you tell your child about the diagnosis?
Yes. At first (end of Grade 2 when they were first dxed) we gave them a very simplified and positive explanation. We really focused on the parts of AS that make them special. Recently both have been more aware than ever of the differences between themselves and the other children, and so we've talked a lot about Aspergers and read books together (All Cats Have Aspergers and Different Like Me: My Book of Autism Heroes). It came as a huge relief to them that they are not alone in the struggles that they are having, and was another opportunity to reinforce all the positive and unique things about them.
a. He's not stupid, he asked us after the second meeting with the psychologist, "why did she ask me those weird questions, does she think I'm autistic!?"
My sons both asked similar questions. They needed more information about why they were doing the testing that they were, and what it all meant and they needed it coined in the most positive, self esteem lifting terms possible. I would not however, start bandying about any diagnostic terms if and until he is diagnosed with something.
4. Has anyone pursued treatment solely outside the school system? (My trust of the school system is not at an all time high)
We had our assessments done outside the school system. First of all the wait list was unacceptably long for us, and second of all we felt that for such an important and potentially life altering event we wanted the most in depth and thorough evaluation done by the most knowledgeable people. We also continue to seek treatment and support outside the school system.
5. Has anyone received a personal diagnosis without specifying a category?
I am not exactly sure I understand this question. When we first began the assessment process with our sons, we had no preconceived notion of what diagnosis would be given, if any, we just knew that my sons were struggling in school in a variety of areas. The autism spectrum wasn't even on our radar screens, so to speak, and when the psychologist first mentioned it I thought it was a preposterous idea! My sons were so bright and engaging! The only pictures I had in my head of Autism were rain man and the lowest functioning kids that you see on TV specials, but now that I know more about AS, I have no doubt that it is the correct "label" for them. I view the diagnosis as a tool that we use to help us understand them and ourselves, and to unlock services and support that benefit them...it does not define who they are, or limit who they can become.

Alice,
Thanks for the thorough reply.
Regards,
Harold

Very good questions Harold. The reponse from Alice was great also. I don't have the diagnosis of my daughter as of yet either. Your questions where things that cross my mind daily. As far as the "label",outside of who knows besides teachers and etc. If you choose to share the information then that is your choice. But I think in my own thoughts the "label gives us a place to start. If you know what your child has you can proceed to finding what helps,works and progress for your child. Labels are always there but if you don't have the dx then you are fumbling in progress for your child. I think with the dx label you can move forward rather than stay in backward,or staying the same. Just my thoughts.. Best of luck to you..