Autism in the news
Last Spring, autism began surfacing in the news when RFK Jr was appointed Secretary of Health and Human Services. At this same time, I had to stop working due to pregnancy complications. Suddenly, our general public was experiencing an outpouring of mainstream media containing so much misinformation - misinformation that my colleagues and I spend our days answering questions and addressing concerns about. No longer able to see the kids I was working with on a weekly basis, all I wanted to do was call families and see how they were feeling and dealing with all of this misinformation given such a large platform. I thought most about the families who had just decided to seek diagnostic evaluations, and whether this news would convince them that they should not.
Being away from the autistic children I know so well, and for whom I hold so much love was eye-opening to me. It is so easy to see how people form a very specific picture of autistic children in their minds based on how the general population talks about autism. Words like disorder, cure, problem, behavioral issues, and defiance are so frequently used. These are not the words that come to mind when you have an imaginative, kind, hilarious child in front of you who needs assistance with self-advocacy and connecting to peers. These are not the words that come to mind when you are holding a child tightly against you who is struggling to feel safe, unable to use words to express themselves and having difficulty gaining control of their body due to disregulation. These words lack empathy, and they truly lack an understanding for what autism is and how we can best serve these children.
But, people don’t understand this because when they are not seeing autistic people on any frequent basis, and they are hearing so much misinformation. How can one possibly gain an understanding of neurodiversity if not personally impacted by it?
Now, almost a year later, I am feeling both optimistic and pessimistic. I think it is obvious to see the pessimistic side of things: We’ve seen blame placed on mothers who took tylenol in their pregnancies; we’ve seen services, jobs, and insurance coverage changed for the worse; we’ve seen a new conflict between families of children with high levels of needs and with low levels of needs. However, we have also seen a huge increase in professionals speaking out against misinformation on large platforms. We've seen podcasts like The Daily doing deeper dives into the issues surrounding access to care. We’ve seen experts explaining to the general public why it is that rates of diagnosis have increased so substantially since the ‘60s and ‘70s.
RFK Jr. gave a large voice and platform to misinformation regarding autism. This gave me so much anxiety for the families with whom I work. There are so many challenges that accompany having a child who needs multiple therapies, who needs you to assist on a consistent basis with co-regulation, who needs additional safeguards to be secure at home and at school, who will face the huge amounts of stereotypes and potential bullying. Hearing on the mainstream media that you somehow caused these challenges by taking Tylenol, or that your child is a problem that needs to be cured/ solved is the absolute last thing that should be added.
So, I guess my point is the following:
Let’s continue to bring accurate information to the mainstream media.
If you are a caregiver of an autistic child: you did nothing wrong to cause autism; you are doing great caring for your child to the absolute best of your ability; your child does not need to be cured; your child is not a problem; and most importantly, what your child needs most is your unconditional love for exactly who they are.