- After diagnosing my son with autism, my doctor suggested genetic testing and applied behavioral analysis.
- I was devastated and went to the internet to learn as much as I could.
- Reading blogs about the experiences of adults with autism helped me change my approach.
Doctors took pity on me when my son was diagnosed with autism when he was 3 years old. He then handed me a lab order for genetic research and analysis. These tests cost thousands of dollars and were not always covered by insurance, he said. But he also said it was worth doing. “If he has genetic differences, he can be made non-inherited,” he said.
It took me a while to understand what he was really saying.If my child has a genetic difference related to autism, I should discourage him from having children. is.
I researched as much as I could about autism
I cradled my baby and left the office feeling crushed. This was a respected California autism center. In addition to the speech therapy my child was already doing, the doctor prescribed intensive Applied Behavior Analysis. According to a study I read after the visit, the autistic child who did this therapy for 25 to 40 hours a week seemed to show good results.
But a closer look at the positive results listed unpleasantly reminded me of my conservative religious upbringing. ABA’s positive reinforcement therapy seems to focus primarily on getting children with autism to respond positively to initial instructions from adults. you do, right? Why does a 3-year-old autistic child need to spend 25 to 40 hours a week in order to be molded into a perfect, palatable child?
It was as if the doctor saw my little one as wrinkled clothes that had to be ironed over and over again until the wrinkles were gone.
Coming home, I tucked my child into a nap, curled up in soft, chunky limbs and sweet-smelling curls. I will help my son learn to fit in as best he can with his neurotypical peers. Sharing all his struggles on Facebook and Instagram so I can know the pain I go through every day.
I continued to research ABA and autism and looked at resources for parents of newly diagnosed children. Rather than feeling empowered by the information, I became depressed with every new stat I saw. I cried because an article on the website Autism Speaks told me it was okay to grieve for a child I would never have. I saw. Children wailed while their parents restrained them at the grocery store. my heart sank. Was this my child’s future?
Then I found something that changed my perspective
Then I stumbled upon the most valuable and life-changing source of information I had hoped to find: how I went through the pain of 40 hours of ABA therapy and lived to talk about their experiences. A community of people explaining online. They were also detained at the grocery store. And after all, they’ve seen mothers cry to their friends about how horrible it is to raise a child with autism.
They were adults with autism. And what they had to say about these experiences struck a chord with me and changed my view of autism.
It all started when I clicked a link that led me to Autism Activists and Advocates Group, Autism Activists and Advocates Group. I started reading bios of her members of the network’s staff and board of directors. Many people introduced themselves as autistic.
They seemed to own the label in a way I had never seen. What I read just hours ago on websites like Autism Speaks made autism sound like a disease.
I read on. In an article on the network’s resource page, an autism writer said he prefers identity-first language because autism is a valuable and inseparable part. their identity. Ultimately, I realized that it’s up to you which language you prefer.
Something started moving in my mind. I kept reading, clicking links, and reading more. I read Amy Sequenzia’s article. Amy Sequenzia, she’s a non-speaking autism writer who needs to read scathing criticism for Autism Awareness Month. Reading an article by Autism author Judy Endow helped me understand why the terms “low functioning” and “high functioning” do more harm than help. I ordered “The Real Experts: Readings for Parents of Autistic Children,” an anthology of essays written by adults with Autism.
Horrifyingly, Applied Behavior Analysis is often referred to as transformational “treatment,” a devastating method of abuse that uses behavior modification and other harmful techniques to make LGBTQ people heterosexual or cisgender. I also learned that we share roots.
Autism is not a disease and my son is not ‘broken’
Over the next few days, I read and researched almost constantly. The rest of the idea I had of autism being a disease is what it really is—a developmental disorder, and as such, when I consider it a normal and valuable part of human diversity. has been removed.
I also found that it was my job to find the best way to support my child rather than trying to fix someone who wasn’t actually broken. It was to help me communicate and acquire the tools I needed to live my best autistic life.
My perspective on sharing my child’s autism journey on Facebook has also changed 180 degrees. didn’t have to blast his good and bad days on social media.
The sadness vanished when I got out of my days of research and reading. Joy poured into the space left behind. My child is very autistic and I am lucky to have him in my life. The day may come when we spread acceptance and celebration.
