Hi, my name is Tia and I am the mother of 4, wife of 1. My 2nd born, Nate, is 9 yo and has recently been dx'd w/ PDD-NOS. It was a really long road just getting here! I began suspecting something might be wrong right away while he was still an infant but got brushed off by dr.s as an over-anxious mother. I then decided that there was just something wrong w/ me, that all of his problems were directly related to my poor parenting skills. But, based on this theory, all of my kids should have had these issues and they didn't. We fought w/ the school for 5 years trying to get him tested for learning disabilities. This past January my brother came down for a visit. He works w/ "at risk youth" in his home state, including asd kids. One night we had a chance to talk and I explained all we were going through w/ Nate. He was amazed at the lack of help and insisted we get him tested for autism. I was shocked because I only had that "rain man" view of autism but he explained it was much broader than that.
So we began pursuing testing. I thought there would be a test that you would either pass or fail and there would be this definitive answer, lol. The first dr we chose claimed to be experienced, claimed to know what she was doing, but as we approached the diagnosis stage she became more and more vague and edgy. She said he couldn't be autistic because he sought affection and he couldn't have aspergers because he has a speech impediment. She decided on expressive language disorder and generalized anxiety disorder. She then referred us out for further therapies. Thank God she did! Unbeknownst to us, the st had already tested him for expressive lang. disorder and he did not have it. The dr never bothered calling her. The new psych. spent a long time going over testing results, administering new tests, observing him, talking w/ us, brought in his partner to review tests and observe as well and finally about a mo ago we got the pdd-nos dx. They also think that had he been seen earlier he would have gotten a flat out autism dx but that he's learned too many coping skills that are masking his difficulties, not actually making life better. He *may* end up officially HFA but for now it's PDD-NOS.
For so long my goal was to find out what was going on w/ him as if just knowing would somehow solve everything. I viewed dx as the end of the road and what I've discovered is that dx is really just the beginning. Since he started therapy he's actually gotten worse and withdrawn further. They said that would probably happen but it doesn't make it any easier. They promise things will get better and I pray they're right. So that's the LONG story of how we got to this point. I look forward to learning and sharing w/ y'all as we continue past this point.