Living With Someone With Autistic Disorder

This article relates to Rain Reign

For parents, siblings and partners of people who have been diagnosed with autistic disorder, something as simple as stopping at the quick mart for milk can be a challenge. Depending upon the person's level of tolerance for changes in routine, and conditions on the day, his/her response could range from nothing out of the ordinary; to minimal – perhaps rocking back and forth or mumbling – all the way to loud, progressively violent screaming, hitting, and worse. Of course every person with autistic disorder is unique, and will respond uniquely to situations, but even happy occasions such as birthday parties or dining out can devolve instantly and without warning into vehement, disruptive behaviors. Because autistic disorder (the most severe condition on the autism spectrum) is an unseen disability (there are no outward physical signs), caregivers run the risk of facing disapproval from people who do not understand what is going on. This can sometimes lead to isolation, as it becomes easier to stay at home than face the possibility of disruptive behavior outside. But the isolation is debilitating.

A particularly poignant picture of what it is like to have a severely autistic child is in Carly's Voice: Breaking through Autism by Arthur and Carly Fleischmann (2012. Touchstone). Diagnosed early on with severe autism, Carly could not speak and did not appear to comprehend when spoken to. Despite acting quickly and taking advantage of every available intervention, the Fleischmanns were driven to their wit's end by Carly's often out-of-control behaviors. They went for weeks without a proper night's sleep because Carly would awaken in the night and for no apparent reason (to anyone but her) she would begin shouting, attacking things, stripping her clothes off and generally upsetting the whole household. Life was, to say the least, difficult – especially for Carly's not-autistic twin sister, who was denied so much as even a simple birthday party because Carly would act out, ruining everyone's day. The Fleischmanns quickly became unwelcome guests at any restaurant they patronized.

Reading Arthur Fleischmann's account bears eye-opening witness to the devastation to life and family caused by one person's severe cognitive disorder. He makes the aggravation, the anger and the subsequent guilt palpable. But he and his wife never gave up. Then one day Carly – driven as much by her own maddening frustration as by trying to tell her parents she had a sore tooth – found a computer keyboard and found her voice. Ten years' of pent up words came pouring out of the child bit-by-bit, spilling out onto the keyboard. Needless to say, it changed all of their lives. Today Carly is a young woman and has been featured on several talk shows as an outspoken advocate for people and families dealing with autism. She is also featured on the website Autism Speaks.

Not everyone is so lucky. However, there are numerous resources available for those whose loved ones have ASD. The Autism Society and The National Autism Society are just two of the organizations that offer loads of information for parents, siblings and partners.

Filed under Society and Politics

This "beyond the book article" relates to Rain Reign. It originally ran in November 2014 and has been updated for the October 2014 edition. Go to magazine.

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