A couple is getting ready for their first date night in six months, when the only sitter they trust to care for their autistic child cancels due to illness. They sadly call off their dinner reservations.
A mother cries as she rocks her screaming child, trying to soothe him to sleep at 2 am. She and her son have barely slept for days. If only there was someone who could sit up with him for even one night so that she could sleep.
A father hangs up the phone after another mental health provider says that they cannot see his depressed teenage son because he has an autism diagnosis. The only provider who said they have the relevant training and experience has a waitlist over a year long.
A depressed autistic adult with limited communication abilities is denied access to the behavioral health hospital after a suicide attempt because she doesn’t have kindergarten level language skills. She ends up in the ER for days, which is a sensory nightmare, and only increases her depression.
A mother gives up trying to find an occupational therapist for her 5-year-old child after being told the only local OT who specializes in avoidant/restrictive food intake disorder (ARFID) has a two-year waitlist. Her only other option is to drive over an hour for services. She cannot do this and keep her job.
Parents arrive at their autistic son’s supported living home. They find suspicious bruising and when asked, he points at staff and says, “hurt” over and over again. The staff deny any wrongdoing and nothing can be proven. They struggle with the decision of whether to leave him there, or work to find another program. This is challenging as there are few quality programs in their area, and the disruption in his routines and living situation will likely lead to increased physical aggression.
A woman sobs in her car after her appointment with a psychologist who says that while she checks a lot of the boxes for autism, he won’t give her a diagnosis because she is married and has a college degree, so does not meet the standard of “clinically significant impairment.” She desperately needs accommodations at work, but without a diagnosis, she is not entitled to them. She is later fired from her job.
An autistic man is told by his therapist that he is terminating services due to lack of progress. The man had tried his best to follow through on therapy homework, but the therapist didn’t seem to understand when he tried explaining that the strategies were not working for him.
An adult who suspects that they are autistic is filled with dread after watching the news and hearing that the government wants to create a registry to track autistic people. They call and cancel their testing appointment scheduled for the following week. They are devastated, as they have waited nearly a year for this appointment.
Autism Advocacy Then and Now: From Awareness to Acceptance
April is Autism Acceptance Month. This is a time when advocates and organizations that support the autism community hold walks, conferences, social media campaigns, and other activities in order to promote awareness and acceptance for the autism community.
This month of recognition, which originally focused on “autism awareness,” started back in 1970 in the midst of the disability rights movement. It gained more widespread recognition in 1988 after a presidential proclamation. In 2011, autism advocates pushed to rebrand the month, changing it from “awareness” to “acceptance.” There were a number of reasons for this change.
First, the community felt that overall, people were much more aware of what autism was in 2011 than they had been in 1970. They also felt that there was a need to shift focus from simply spreading knowledge of autism to emphasizing the idea that autistic people should be accepted for who they are.
Additionally, their goal was to move away from prior deficit-based models of autism that focused efforts on “curing” autistic people. Instead, they wanted to work towards acceptance and belonging.
This move towards acceptance and belonging for autistic people was not meant to take away from the needs of the autistic community. As described by the Autistic Self Advocacy Network, or ASAN (2021), “acceptance is an action.” Part of that action needs to include the presence of adequate supports and accommodations that lead to true societal belonging. There is a long way to go before this is a reality.
Is This What Autism Acceptance Should Look Like?
Look back at scenarios above. These are based on real struggles of real autistic individuals and their families—and they all highlight the gross lack of adequate supports for autistic people of all ages and support needs.
This includes a lack of respite care, safe supported living programs that can afford to hire highly trained staff, quality therapies that don’t have excessive wait lists, access to mental healthcare with providers who understand autism, psychologists who understand how autism presents in high masking adults, etc. While I have highlighted many examples, it would be almost impossible to list all of the unmet needs of the autism community.
Autism Acceptance cannot occur without adequate supports, and those supports will not be given without the action of autistic people and their allies. Here are some active steps that you can take:
Contact local or national politicians and ask them to fund programs that provide services like respite care, quality housing supports, therapies, etc.
Offer supports to the autistic people you know or to their families.
Speak out against political rhetoric that characterizes autism as a “horror show” or something that “destroys families.”
Listen to autistic voices. Seek out books, blogs, videos, artwork, and other media produced by autistic creators.
If you are a mental health therapist, focus readings and continuing education on how autism intersects with mental health.
If you are a clinical psychologist who tests adults, focus readings and continuing education on the latest research on high masking autism and the female autism phenotype.
Most importantly, remember that Autism Acceptance does not end on April 30th, but must be an action that occurs all year long.