Coping with the Confusion of Autism Treatment and Care

As an older sister to a young man with autism, it’s important for me to connect with the autism community. I maintain friendships, read and write posts, give talks, and try to keep up with research findings too. And so, while reading a recent essay on autism causes and treatments, I recognized a description of one of my brother Willie’s former doctors.

In that moment, I had a taste of what it must be like for parents and caregivers whenever well-supported scientific studies seem to contradict one another. Whenever we as a community are left with more questions than answers, it’s hard to know what information to trust. At best, it makes us second-guess our every move. At worst, it makes us feel like failures for not knowing who, or what, to believe.

To be sure, I’m thankful that we live in a world where autism research and learning is continuing and evolving. It’s vital that we add to our knowledge and that we work to ‘unlock the mystery’ that is autism. And of course, we need to use good judgment and value each person’s health and safety. However, it can be difficult for families — emotionally, interpersonally, and financially, when a treatment they’ve tried is debunked by the scientific community.
What emotions may come up in such cases? Here are just a few…

Shame. When I spotted the reference to my brother’s former doctor, I immediately felt foolish; why had I trusted that the treatment was the right course for my brother? Had our parents been too credulous? Had we missed significant warning signs? Should my family and I have ‘known better?’

Hurt. After the first flush of shame, I noticed that the brief account was rather one-sided; for example, there were no details provided about individual experiences with this physician’s protocols. And there was no mention of individuals like Willie, people who have been helped by this particular practitioner. And I thought, why have their stories been excluded? This led to …

Anger. I was upset that this author had casually disparaged a treatment that has been helpful for my family, and others like us. I wanted to ask the writer: Do you know what our lives have been like, dealing with aggressive and self-injurious behavior on a regular basis? And when you discredit this doctor and his treatment, do you really have a viable alternative?

Do you know that no ‘conventional’ treatments have helped my brother, and many of them have made his behavior much worse? Do you realize that our parents have carried on for over a decade with no real answers, no fully successful treatments, and a young man who causes physical harm himself and others?

My anger burned hot, but when it cooled, I came to …

Peace. Real peace comes from knowing that no one has all the ‘right answers’ about autism (the author of the article I was reading rightly noted this as well). We are all doing the best we can with what we have. Since modern science can’t supply every answer, we have to make our best guess as to what is ‘the next right thing’ for our loved ones. And of course, this uncertainty makes us feel defensive and insecure at times and we are vulnerable to criticism, in need of tender care and encouragement along the way.

Since autism is such an individually-specific condition, what is right for one may not be right for another.Some individuals and family members may decide that an intensive therapy or dietary change is in order. And in turn, some families may come to see that everyone is better off without additional treatments.

We make these decisions to the best of our ability, in partnership with our loved ones on the spectrum. And at the end of the day, we have to believe that is enough.
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ABOUT THE AUTHOR
Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism and intellectual disabilities (and empowering caregivers to do the same). Her new Kindle Single, I Was a Stranger to Beauty (ThinkPiece Publishing) is available on Amazon. Readers are also invited to receive a complimentary copy of Caroline’s digital book, Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive) via her website: https://awishcomeclear.com