Diagnosis...how and why?

Post Reply New Topic

Hi all...I am new to wrong planet, and I'm hoping some of you more experienced parents can help me. Last December my son's preschool teacher called me in for a conference and described some behaviors she had been seeing in school...flapping arms, "zoning out" (so unresponsive it's like he's on a different planet), playing alone or parallel playing, lack of eye contact, lack of spatial awareness, and sensory issues. This blew me away. Yes, I knew he had trouble with loud prolonged noises (garbage disposal, toilet, rushing water, etc.), and he was a late talker, even receiving speech therapy at age 2 (which he was dismissed from after 6 months), but I had never seen any of the other behaviors. My husband and I are teachers, in fact my husband is a special ed. teacher, and I was left wondering how in the world I missed this.

So, I tried to take him to a developmental pediatrician...there are only 2 in town, only 1 taking new patients, and that turned out to be a disaster. My son fought us every time we went, he hated it, and he has never been that way at the doctor before. She made a whole mess of diagnoses which she never tested for, including some for which blood tests are standard, and then didn't answer my questions when I asked her about it. To make a long story short, we felt she was more harm than help. So we found ourselves on our own.

We took our son to the school district for an evaluation and he passed all of their screenings, but his OT only passed by one point. Basically, we were finding out that yes, there's something not right, but it's not odd enough to qualify to get any help. We took him to a private preschool summer camp where he got 5 day/week speech therapy for 6 weeks and they focused on social language...saying hi and bye, sharing, taking turns. It was the first time I saw progress and felt that there was anyone wanting to help.

After reading John Elder Robison's books, I saw so much of my son in his experiences. I don't have an official diagnosis, and I'm not a doctor, but I suspect my son is somewhere on the spectrum. I found this forum, I've been just reading here and there, and thought I'd post.

So, I guess, after telling my story, my questions are these: How do you get a diagnosis for your child? What do you do if you and the teachers suspect something is going on, but you don't have anything official? And, second, what would be the benefit of an official diagnosis? I am researching ways to help my son with his individual "quirks" and that won't change with a label...is there extra help or other resources available for families once that label is given?

Thanks for any insight or ideas on this...