I blog daily about my own son and my accounts of his struggles and efforts, along with my repeated questioning of experimental “treatments” for autism and of certain theories of autism causation (such as vaccines),†has at times been taken as evidence that I have not “done everything.”†Truly, “cure” is a fighting word.
Autism is a lifelong neurodevelopmental disorder. The†agenda for this year’s Autism One conference suggests that, while this organization, its partner organizations including Generation Rescue and Talk About Curing Autism and their members continue to talk about “recovery” from autism, there is acceptance, or at least acknowledgment, that autism is lifelong.†Amid the panels about “Redox and Methylation in the Gut, Brain and Immune System,” “A Green Body Approach for ASD” and “Fermentation: Fast Steps to Friendly Fecal Flora,” are panels about behavioral strategies (“Assessing and Teaching Functional Living Skills to Individuals of All Ages with a Diagnosis of ASD Using The AFLS”), iPads, dealing with law enforcement and other safety issues and developing an exercise program — panels addressing the realities of life with a child with disabilities. Other panels — “Estate Planning for Special Needs Children Ė What Parents Need to Know,” “A Sustainable Model for Adult Residential Services” and “Kentucky’s ASD Employment Pilot Project” — address issues faced by autistic adults and their families.
Autism One is facing the facts that autistic children grow up and, as autistic adults, need services and supports.
Years ago, when Charlie was little, my husband and I accepted that not only would he be autistic for life — autism isn’t something you just grow out of — but also that he will need caregivers all of us his life, that he will not go to college, get married, have children. Taking care of Charlie requires a lot of energy — he and my husband ride at least 12 miles a day on their bikes and Charlie and I put in a few miles of walking and running every day, rain and shine. I noted a number of special events at Autism One (“Spa Night,” “Dad’s Night Out“) meant to help parents “relax” because they “deserve it” (they do).†While Charlie’s life is limited and his challenges many (he talks only a little and does not seem able to read, though lately we’ve seen a tiny flurry of progress in this area), we see no need to “expunge” — to bleach out — the autism from him.†Charlie is never a burden and his being autistic is no tragedy: Hope dawns every day for us as we see him grow up and become the young man, the individual, that he is.
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