Changes in your AS kid from time of dx to now..

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Hi

I was wondering if you could share with me the behavioral and or other changes that have occured in you AS child since the time of diagnosis. What I am looking for is info on whether the behavioral differences noticed in your child at the time of diagnosis have become more noticeable or less noticeable? Has your child developed any tics/stims/visible signs of AS since time of diagnosis? How has you child changed from since he was 4/5 years old to now..I know that some of these questions are very intrusive and I hope I didn't cause offense

In some ways my son is more obviously AS, while in other ways many of the impairments have been overcome. He clearly doesn't walk, talk, or move like other 13 year olds, and he has different interests. But, at the same time, he's really comfortable in his own skin. He's learned to deal with his hypermobility / disgraphia, he's learned how to handle many social situations, he knows how to self-regulate to avoid meltdowns, and he knows the signs for when he can't cope and knows to escape the stress situation. He stims a lot more at home, because we encourage it (cuts back on meltdowns), but he holds it in during the school day. His sensory issues have mitigated over time.

Our situation is very much like DW's. My daughter is only seven and a half and has had the AS diagnosis for a year and a half. Since the diagnosis, she has developed some additional "symptoms" such as some OCD behaviors. I think this might be due to some meds she was taking but I am not sure since she has been off the meds for 6 months and still has the behaviors. She has developed a stim of flicking her wrists in the past 6 months and it is quite prevalent. Her meltdowns are FAR, FAR less in frequency and intensity. This is due to some behavioral supports that we have implemented such as a strict schedule. Her social issues seem to be more pronounced but I believe that is due to her getting older and her peers are becoming more socially mature-leaving her farther and farther behind. We changed her diet nine months ago and I believe that has helped tremendously with the behaviors as well-her frustration tolerence is better. However, she "zones out" far more now than she did and has perfected the art of shutting down instead of acting out when she is overwhelmed. Her sensery issues seem to come and go. It is impossible to know what has gotten better due to my own understanding and subsequent adaptation to her issues and what is just changing due to her own maturity. It seems she matures at a much, much slower rate than same aged peers. The change in my daughter from age 4/5 to now is remarkable in my opinion. At age 4/5 she was having daily meltdowns for hours on end, had trouble commincating her needs, was extremely defiant and agitated much of the time. Now she is much more comfortable in her own skin (most of the time) and while there are still meltdowns they ususally only occur in circumstances where we have deviated from our routine or some event occurs that was not predicted. The most influencial piece for us was getting in a school that supported and accepted her differences instead of trying to get her to change. That, by itself, changed our daily life immensely.

We've had two polar opposite experiences:

One was not necessarily diagnosis-related: I finally figured out that DS's ordinary snail-pace to school was because of a tic regarding lines on the floor. When we finally talked about this with him, it became considerably worse, because he was no longer supressing it.

We just finished the whole diagnostic process including the ADOS and a speech test. DS is measurably relieved, and this has come out in his behavior - prior to the diagnosis (even though we knew it was something,) my poor son was convinced he was just a bad kid (despite numerous assurances otherwise.) Just having an understanding of Aspergers, and meeting other kids with it has made a measurable improvement in his behavior, because he is more likely to understand his own needs, and be able to explain them and ask for accommodation. We still have a long way to go, but just taking the shame away has been HUGE.