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Wednesday, September 30, 2015

Parent Perspectives

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At The Huffington Post, Catherine Pearson presents thoughts from autism parents:
The most difficult thing, for me, was getting all of my son's therapies set up. It's very time consuming to wait both for evaluations and openings. Jackson has apraxia of speech along with ASD, and he sees several private speech therapists, as well as the one from his school. With our first speech language pathologist, it only took about two weeks for an evaluation and we were scheduled to start therapy the next week. But with the second, it took three months to get evaluated and get a spot. It's so hard to search for the right help, the help that actually works. And staying strong for your child is a constant challenge. But being completely in love with them is not. -- Amanda, 32, Nevada

My son was just diagnosed as having autism spectrum disorder. I have a degree in special education, and I did my student teaching with seven boys who were all on the spectrum, and were all non-verbal. Leading up to his diagnosis I thought I would be fine. (We had suspected it for about a year.) But when I heard the words "Your son fits the criteria for an autism spectrum disorder diagnosis," I felt like I had been hit by a freight train. I was not okay. And I was not okay that I wasn't okay! I called insurance the next day to start the process of getting him ABA [applied behavior analysis], speech and OT [occupational therapy]. After I got off the phone, I thought about how I cannot imagine navigating that system not knowing what to ask for -- without knowing all the terms and who the good providers in the area are. -- Holly, 27, Washington
As I write in the book:
For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”