Finding Out
“Your son has Autism Spectrum Disorder”
My husband and I both took our son to his Pediatric Developmental Psychologist appointment. It was going to be three hours long and we all needed the emotional support. My son was completely himself. So we knew that whatever happened, the doctor was getting an accurate picture of who he was. My son had a lot of experiences with doctors from some unrelated medical issues (look! there’s another topic for later), and we never knew what his reaction would be to a doctor. So I had to prepare him very carefully for this appointment. We went into the room and the doctor did her tests, made her observations, talked to us about what we were experiencing with our son, and then sent us out while she compiled the diagnosis. A half hour later she called us back into the room and told us that our son had Autism Spectrum Disorder Severity Level 1- which meant he needed a little support- similar to Aspergers/High Functioning Autism, but she said they were no longer using the term “Aspergers.” Although, I will still use it, since it seems like most people including the doctors he has worked with are still using it in reference to my son.
My mind went immediately to “How do we help him.” I had already anticipated the diagnosis and I had already made my peace with it (I suppose I will save that for a different post), now I just wanted to get on with it and get him the help he needed. I felt such an urgency to get him early intervention RIGHT NOW! I read 3 books about Aspergers and watched videos online of adults and teenagers talking about what Aspergers meant for them. I began to realize that I didn’t really want to obsess with the research because you can drowned in it pretty quickly. I just wanted to deal with my son and his specific needs. After all, I kept reading how every child with Autism was different. The only way for me to stay sane and positive was to just focus his exact needs and who he was at that moment. As they say in AA- One day at a time. My Dad is a recovered alcoholic, so I know a lot about what the alcoholics say.
Our next step was to meet with the School District to get him services through them. We had a great IEP team and they could see within the first 3 minutes of meeting my son that he was on the spectrum and he would need to be enrolled in a Special Education/Special Day Class twice a week in the fall. I felt a gigantic sense of relief. I felt so horrible that I had not gotten him early intervention sooner and I was so glad that now he would be getting it. I had no idea at the time how long it would actually take to get services after you have a diagnosis.
So we were going in two intervention routes- clinically and educationally. After our IEP in June, our next steps were to get him assessed with Speech and Occupational Therapy clinically. He needed social speech therapy to help him learn how to have back and forth conversations and interact socially. He needed occupational therapy to help him deal with his anxiety, fears, and reactions to them (I will save that for another post as well). The assessment process was looooong and at some points very frustrating. We also decided to switch insurance companies in the middle of it, after we learned that Kaiser had better coverage for mental health. Our son qualified for occupational therapy thanks to an insightful assessor, but he did not qualify for speech, thanks to an unprepared assessor. She was testing his language skills, which were not his issue. His specific issue was social language, but she did not read his report, so she did not know that and did not test him for that.
I was confused and upset, but after talking with the occupational therapist I decided to look into ABA therapy, which I had originally dismissed. He had automatically qualified for ABA as do all children within Kaiser with his diagnosis. I had believed that ABA was only for children with negative behavior issues, and my son didn’t really have any “behavior” issues as far as hitting things or being violent in anyway. What I didn’t realize is that “behavior” is everything you do. His inability to look people in the eye, difficulty with reciprocal conversations (back and forth conversation), poor social skills- those are all behaviors that he needed to learn. So once I was educated in ABA, I was so excited that it was available to him. Even better, was the fact that they could go into his classroom and work with him one on one! What a dream to have a professional in his classroom helping him learn how to interact with peers and helping him develop tools to deal with his anxiety. Just to get an idea of how long it can take between ASD diagnosis and getting services- My son was clinically diagnosed in May 2013 and didn’t start OT until November 2013 and ABA began in January 2014.
Mama Never Knows- I was so used to traditional medical issues- you find out you have a broken arm, tendonitis, clogged artery and you are immediately treated. But if you are diagnosed with a mental issue it will take many, many months and a lot of hoop jumping before you will even begin to get treatment. It doesn’t make any sense!
