Conclusion

Beth Ryan

Your autistic daughter needs you to embrace all of the wonderful possibilities of her selfhood.

YEARS WENT BY before my daughter was diagnosed with autism. During those years, she underwent a multitude of tests for various diseases that would inevitably result in pain, suffering, and death. Although it was delivered to us as though it were bad news, the autism diagnosis was a relief. I immediately began searching the internet and was mostly directed to sites like Autism Speaks, where I learned what a horror it was to have an autistic child. So, I stopped searching because my child was nothing like the children I was reading about, although the autism “specialist” at her school described her in similar terms to the tragic poster children. I couldn’t distance myself from what I read fast enough.

It is not socially acceptable to embrace a child’s disability as a beautiful part of her selfhood—to not wish for some non-disabled version of that child. Instead of following your natural parental instinct to love, nurture, and protect your child, you are compelled in no uncertain terms to become a behavioral compliance officer of sorts. Forget about finding the right conditions to foster growth and happiness, because you need to stick to rigid therapy schedules, which often exceed twenty hours a week in addition to school. Forget about giving your child the space and environment to play and pursue her interests, because you need to guard against obsessions and social isolation by forcing your child to engage non-preferred activities and non-preferred people. Forget about how beautiful it is when your child flaps her hands in joy, because you need to make those hands quiet and table-ready. Forget about academics because your child needs to learn to touch her nose for a gummy bear. Forget about teaching your daughter that she can say “No!” when something doesn’t feel good, because above all else, Autistic children need to learn to be compliant one-hundred percent of the time.

As a parent, I couldn’t quite articulate why these directives felt wrong. I tried to express to the autism specialist that demanding constant compliance from Evelyn was not effective and that the evidence was clearly exhibited in her school “behavior,” which stood in stark contrast to the happy child we knew at home. I was told that I had fewer expectations of Evelyn at home and that we were overly permissive. Then I stumbled upon a piece of writing that changed my life, and more importantly, Evelyn’s life. “No You Don’t” is an essay written by Maxfield Sparrow on their blog, Unstrange Mind,1 and is now the basis for their book of the same title. This piece resonated so loudly with me that I wrote a piece on my own blog titled “The Cost of Compliance is Unreasonable.”²

After writing this piece, a group of adult Autistic bloggers swooped in and saved me from the experts. Saved my daughter. They embraced my family so lovingly and kindly with their guidance based on their lived experience. They have become the best friends I have ever had. As I hungrily devoured their writing and eagerly engaged in conversation with them, my disconnected thoughts about my uneasiness with the way my daughter was being “taught” took shape. I was able to demand changes at Evelyn’s school, which eventually resulted in her being infinitely more available for learning as opposed to being in a near constant state of meltdown. I was able to examine my own weaknesses as a parent to an Autistic child and make changes that had profound and far reaching effects on the quality of life for every member of our family.

It is true that every Autistic person is unique. Evelyn doesn’t speak and needs twenty-four-hour-a-day support. I’ve received valuable guidance from adult Autistic people who have needs similar to Evelyn’s. I’ve received valuable guidance from adults who had similar needs as children but have different needs as adults. I’ve received valuable guidance from adults who don’t and have never appeared to be very similar to Evelyn. One of the best things about tapping into the resources that Autistic adults provide is that, unlike the experts, they don’t insist that there is one way to learn and progress. They don’t insist that rigid inflexible regimens be followed until a child is broken. Instead they seem to, almost universally, support the value of respecting individual needs. This results in a plethora of possible solutions, supports, accommodations, and coping mechanisms—in short, options for parenting a happy child.

I often think about how different the lives of Autistic people and their families would be if they were introduced to the wealth of information available from Autistic adults. I was thrilled to learn of this book and the doors it would potentially open, the fear it could alleviate, and the happiness that it could inspire. I hope you’ve read every word with an open mind and with all the love in your heart for your Autistic child. They need you to embrace all of the wonderful possibilities of their selfhood. They need your unconditional love, support, and advocacy to become their very best Autistic self.