April is Autism Awareness Month, but at this point is there anyone not aware of autism? While most people are aware it exists, I’m often surprised at what people don’t know about autism. Maybe you have been too.
Since James’s autism diagnosis in 2010, I’ve been asked lots of questions about the cause of his autism, his behaviors, and his future. But these five are the most surprising.
What did you do to make him that way? Years ago James and I sat down at a potluck our church was having with another church. The lady I sat by gestured to James and asked, “Is he going to grow out of that?” I wasn’t sure what she meant. “His autism? Will he grow out of his autism?” “Yes,” she answered. Then followed up with, “What did you do when you were pregnant to make him that way?” This conversation happened soon after James was diagnosed, when I was still in a tender place myself. It was hurtful at the time, and I’ve had to work through the shame it caused by reminding myself of God’s love for me and for James, knowing that autism is one of His good and perfect gifts, to bring about His purpose for our lives.
Did they give you a handbook when he was diagnosed? At a recent physical, my doctor asked about my stress level. I told her I have a son with level 3 autism, which studies have shown leads to an increased level of stress for parents (because we often don’t get enough sleep, we are always on alert to keep our kids safe, and we have to deal with ridiculous questions and comments from others). Maybe I was the first special-needs parent she had ever talked to, because her follow up question was if we get a handbook that tells us how to raise “kids like that.” Man, I wish. That would sure help. But no. We are often entered into school and health care systems that are understaffed and underfunded. If we’re lucky, we’re handed a list of phone numbers to call to be put on waiting lists for therapies that may or may not help. But no handbooks with information that applies to every kid diagnosed with autism.
Do you have to take a class to raise a child like that? Again, a question from my doctor. (In case you are wondering, I am requesting a different doctor next time I go in.) Who would pay for these classes? Who would teach them? What would happen to parents who didn’t take them? Who would provide child care for this class? So many follow up questions for this idea. I am super thankful for the help I’ve gleaned from books, support groups, conferences, and parenting mentors, but the idea that we would be required to take a class to parent our kids is surprising.
Did you eat a lot of tuna when you were pregnant? Similar to the first question, this question blames the mom or dad for causing autism. There’s also fear behind it. They want to know how to avoid having a child or grandchild like mine, believing they have control over such things. But nothing we do or don’t do can totally prevent us from having a family member with a disability or even developing a disability ourselves. Tuna or not.
Don't you know that the internet is dangerous for people like you? Another doctor question asked years ago when we were requesting tests that would help us know what was going on in James’s body. Because I didn’t have a medical degree, I must not know as much about my son and the symptoms he had as this doctor who had never met James, but who was talking to me on the phone. He assumed my only research had come from whacky websites. To be fair, there are plenty of those out there. But there are also people with decades more experience at helping people with autism feel better than this pediatrician had. He underestimated me and my research abilities.
There’s still a lot of education that needs to happen so people with autism are accepted and celebrated, and I’m sure we’ll still get questions like these as James grows. I pray I can answer each one with patience and grace, reminding others that our son is a blessing and our life is not a tragedy. I also pray for friends like you, fellow autism parents with stories like these yourselves, that we can remind each other we aren’t alone when encountering people who still need to be aware of autism and accepting of autistic people.