In response to the recent press release after the CDC’s most recent report on autism spectrum disorders (ASD), I would like to share some thoughts and encouragement.
I share a brief version of my personal story to combat the current narrative around autism. My journey so far and my current life are certainly not without struggles. Being disabled and neurodivergent in a world designed for nondisabled and neurotypical people has many challenges. However, I hope that I can provide encouragement, both from a personal and professional perspective, about the state of autism spectrum disorders. My view is quite different from that shared during the press release, but it is reflected by many of my peers in the autistic community and colleagues in the field of supporting people on the autism spectrum and their families.
I hope that my vulnerability will be a welcome and soft touch, during a time that is volatile and harsh. I acknowledge that my experience as an autistic person differs from that of every other autistic person. I also recognize that I benefit from the privilege of an amazing support network.
I am an autistic woman who was diagnosed with ASD as an adult. I was a middle school special education teacher in the Rochester, N.Y., area before earning my Ph.D. I now work as an assistant professor of special education, where I teach in the online graduate special education, early childhood special education, and applied behavior analysis programs. I love my job. I am fortunate to have access to accommodations for my disability at my university, and I am thrilled to have the opportunity to teach future teachers to support students with disabilities.
I paid taxes (a lot) this year. I have gone on multiple dates with my husband in just the past month, even though I get overwhelmed in public and social spaces. I have overcome my needs around toileting independently, but I still struggle with many other activities of daily living, such as washing my hair. I also have many other symptoms that can sometimes be debilitating and sometimes make me smile that I am keeping to myself at the moment.
I take medication multiple times a day, utilize occupational therapy, and need social skills training. I have worked with many students on the autism spectrum and with other disabilities throughout my career, and I have the honor of currently working with teacher candidates both with and without disabilities. I also have many neurodivergent and/or disabled relatives who have needed a wide range of supports and have varying levels of independence.
One in 31 children at age 8 has been diagnosed with an autism spectrum disorder. This rate is indeed rising. But I don’t believe (and neither do many other researchers and practitioners) that this means there is “more” autism (not that this would be a bad thing!). We are finally starting to recognize autism better, reduce the stigma around diagnosis and support, and also provide better supports for children and adults on the autism spectrum. People of diverse races and genders are being more accurately identified, but there is still work to be done to make access to evaluations and supports more equitable. There is also still work to be done in autism acceptance.
Autism is not caused by a single environmental factor. Autism spectrum disorders are a set of complex neurological conditions caused by genetic, biological, psychological, and environmental factors. You or your child did not “get” autism from a vaccine, a cold parent, or a specific event. I hope that this information becomes widely known. I also hope that autism is no longer viewed as a tragedy, but as an aspect of human diversity that is gorgeous and complex.
I want to tell you, my fellow people on the autism spectrum: Your worth is not in your level of independence. Your worth is not in how much or how little support you need. Your worth is not in how much (or if) you pay taxes. Your worth is not in your diagnosis (or absence of one).
Families, you are doing a great job. You are encouraging your children and building them up. Your child will keep growing. You will keep learning, together.
Your worth is in being you. You are beautiful. You are successful. You will be successful. You and I and many others are working very hard to make the world more accessible for us. We are trying to change people’s perspective. Being autistic is beautiful. It is also difficult. Being human is difficult. But we are in this together. We will hold strong and keep working.
Please take these words to heart. Read them to each other. Read them to your children. Do not hide from the challenges, but make sure to celebrate the wonderful moments. We are strong. It is not fair that we have had to be resilient for so long. But as much as it pains me to have to write this response, I have joy in knowing that hopefully even one of you, if not more, will be encouraged.