By SafeMinds Executive Director, Lisa Wiederlight
I’m going to start this blog a little differently today. Today I am writing as both an autism mother and as SafeMinds executive director.
Monday morning, while at the grocery store, I heard the familiar scream of a young child with autism. An older man with a crooked and annoyed look on his face said, “What is that?” I returned, “That is a child.”
The child who was screaming wound up checking out next to me at the store with his mother. There was screeching, pounding on the side of check-out, and more screaming. There was physical struggling. There was a beefy security guard watching it unfold, and many people were staring not knowing what to do. Yet no one asked. Sound familiar to you?
I told the mother I had a young adult with autism, and asked if I could I help her. She was trying to pay while holding her son back from denting the cabinets around them. I asked the security guard to get a toy that made noise. Someone working behind the customer service desk threw me a stuffed animal. I knelt so that I could get at eye level with him (at this point he was on the floor), and handed him the stuffed animal, which he grabbed, and then threw gently. As the exhausted mother paid for her water, the security guard came over with a baby toy, but then asked her if he could help her leave with her cart when she was done at the cash register.
When they walked out of the store, the child was still screeching and stretching his body in some unnatural and uncomfortable way. You know what that looks like I could not help but think that he was in pain. I asked her what kind of music he liked, and she told me “Wheels on the Bus.” On to Spotify to find the song. When we got out of the store, and he heard the song, there was absolute calm. No screeching, no stretching. Just calm. Maybe it was that he was not in the store anymore, or maybe it was the music. At least the struggling mother could rest.
Then the mother turned to me and asked if my son talked, and I said at first, no. But now, in sentences. She said her son is nonverbal, and that he can’t tell her why he has these tantrums. I implored that she hang in there, and try to take care of herself. She said she had no choice, that she was the only thing he has. How familiar is that? She said they were early to school today and she only wanted to get water. Soon after, she repeated it, as if she needed a reason to go to the grocery store with her son. I told her I understood, and assured her she was doing a great job.
Why did I do that? Well, I would like to think that I would have done that anyway, of course. However, way back in 2007, I was that mother. My son was flailing on the ground in a Giant Food for a reason I did not understand. He was trying to hit his head on the floor, and I was putting my hand under his little head to protect him, as he smashed my hands into the ground repeatedly. A stranger came by, and gave me a jacket to place under his head until he calmed down. She assured me I was doing a wonderful job. When the tantrum stopped, I looked around, gave the person the jacket and thanked her. She saved both of us that day.
Why are our children having tantrums, and being self-injurious? Why do over half of people with autism aggress against their caregivers? Why are people with autism more likely to ideate suicide than their typical peers? How do we treat mental illness in people with autism so that they are healthy and safe? How do we support caregivers who address these issues every day?
I was asking these questions in 2007, but we have no answers in 2019. This is not acceptable. Now the problem has become a crisis. Not the kind of “crisis” when you and your family are put on a “crisis level” waiting list for services, but an URGENT CRISIS that requires best practices, clinical guidelines, and compassionate understanding this year.
Today, the members of the Interagency Autism Coordinating Committee (IACC) will meet to discuss how to address the needs of people with Autism Spectrum Disorder. SafeMinds has submitted written comments asking for the IACC to consider if the same biomedical factors that contribute to the development of autism in some cases, might also contribute to the development of mental health issues. We’ve asked that the IACC and others consider modifying treatment approaches to addressing mental health issues so that they will meet the unique needs of people with autism, and that these advances are distributed to practitioners via a clinical infrastructure so that people with autism and their caregivers receive best practices in mental health services as soon as possible.
We recognize in our public comments that waiting lists for mental health services are dangerously long. We acknowledge also that family-based therapy should be considered, when appropriate, as caregivers address the mental health needs of people with autism on a daily basis, in many cases.
James Williams, a self-advocate and member of SafeMinds’ communications committee, is providing oral comments at the workshop. His brilliant focus is how mental health issues aren’t just abstract symptoms, but instead the indirect consequences of the social and emotional realities of living with autism on a daily basis. James always provides us with fascinating ideas and viewpoints, and we will be posting his testimony shortly.
SafeMinds will continue to advocate for treatments for people with autism, so that they can live as safe, healthy, and independently as possible. We welcome your feedback and partnership on our mission. We are seeking board members, committee members, and of course, donors. Please email [email protected] if you’re interested in joining us, or visit www.safeminds.org/donate if you are able to donate to support our activities. Any amount would be appreciated.
Thank you.
