Last night, my son Justin, who is eighteen and severely autistic, reached over at the dinner table and pulled me in for a kiss. Nothing precipitated it (I was eating wings and solely interacting with them) and he took me by surprise. These are moments of clarity with Justin- he looks straight at me in all seriousness, and usually has a hint of a smile on his face. I treasure these moments, because compared to when he was much younger, they are few and far between.
And I am grateful for every single one.
Five years ago we went through a terrible period with Justin. He began having some all-consuming body movements we thought might be the result of a medication he was on, but turned out after seven different doctors and almost as many diagnoses to be tic disorder. We got him on the proper medication and he improved greatly, but it was a harrowing time for him and for our family. Thankfully we have gotten things under control and he is back to his mostly happy affectionate self, although he doesn’t express emotion nearly as much as he once did.
Honestly, we had thought we were out of the woods, but you never really are with autism.
Autism often comes with co-morbid disorders such as OCD, epilepsy, ADHD, and many others. My husband and I were completely caught off guard when he developed symptoms, as we had never heard of autistic people developing tic disorder before. It was so frustrating to hear diagnoses we just didn’t think fit the bill, and exhausting trying to find the right practitioners who took our insurance. Fortunately we straightened things out and he is doing well again.
But if we hadn’t kept pushing he might not have gotten the right diagnosis, and might be still suffering as he was back then.
My husband and I listened to our gut and did our own research on what we thought was happening to our son, and it all paid off. There are so many different choices to make when you have an autistic child- to do or not do ABA, gluten or dairy-free diets, to medicate or not medicate, etc. It’s really important to listen to many different opinions, but don’t forget to trust your gut too. Most importantly, be honest about how you feel something is working for your child, and don’t be afraid to speak up if you have concerns. Nobody knows your child like you do.
You will always be his or her strongest advocate if they can’t advocate for themselves.
We are fortunate in that we were able to help our son, and that he seems content with his world. This would not be the case if we had stopped listening at his first diagnosis, which was wrong. Try to keep an open mind to suggestions, but remember your opinion is valid too.
And never give up.
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