One of the most frustrating things about living with autism is dealing with the unknowns. We don’t know for sure why this happened or how this happened to our child. We know of some things that might help, some things that definitely help (like speech therapy and OT), but we have no idea what our child’s future will be like as far as how much they can recover and function in society.
I listened to an interesting episode of The Autism Podcast recently. The guest was Beth Maloney, author of “Saving Sammy.” When Beth’s son was in middle school, he was diagnosed with OCD and later Tourette’s. Sammy was confined to home and faced being institutionalized for life. Sammy, Beth and their family had to deal with the stigma of a mental disorder, much as those of us who deal with autism do. She made a statement that really struck a chord in me. There are as many kids in the U.S. with OCD as there are with diabetes. Something like diabetes, a physical disorder, is treated with sympathy by society, but a mental disorder like OCD, Tourette’s or autism is treated like an embarrassment. This isn’t to say physical disorders do not deserve sympathy, of course they do, but mental disorders deserve the same compassion.
Long story short, Beth was convinced something else was going on in her son’s body. She had a gut feeling. She hounded the doctors to do more tests and it was ultimately found that he had a strep infection. Apparently there’s an OCD-type disorder caused by strep called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep). What I came away with from this podcast was that it’s amazing what parents can uncover through being relentless.
Beth Maloney has appeared on the “Today” show and “Bonnie Hunt.” “Saving Sammy” is up for an Multiple Sclerosis Society Books for Better Life Award.
www.autismpodcast.org
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