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Autism

Should April Be "Autism Acceptance Month"?

It's Autism Awareness Month, but awareness may not be enough.

Key points

  • This year, there has been a large amount of cultural discussion about the rhetoric used to discuss autism and what autism awareness should mean.
  • Autism awareness often ignores the things that would help people with autism the most, like education and acceptance.
  • Education into how autism manifests across the spectrum in males and females would help people with autism and their families.

April is Autism Awareness Month. As this particular April progresses, to those of us in the autistic community, one thing has become very clear: Many people with autism don’t like the way autism awareness is discussed and conceptualized by many neurotypicals.

This year, there has been a large amount of cultural discussion about how people with autism are treated, the rhetoric that is used to discuss us, and what autism awareness should be. One of the most controversial elements of this discussion is the massive autism awareness organization known as Autism Speaks.

Autism Speaks is one of the leading nonprofit organizations for autism awareness. It has huge media campaigns and lobbies aggressively in Congress. Much of the imagery and rhetoric we hear about autism has been created by Autism Speaks. They are the originators of the divisive puzzle piece image many people now associate with autism.

The problem is that many people with autism view the organization in a negative light. The Autism Speaks message of awareness has always focused on helping families of people who have autistic children. Although helping families is important, this message has been criticized for emphasizing stereotypes of the "difficult child with autism."

Autism Speaks was founded by Bob and Suzanne Wright when their grandson was diagnosed with autism. They recently partnered with “Sesame Street” to promote a tool kit for parents of newly diagnosed children that, among other things, compares autism to leukemia. Their message continuously depicts autism as a burden for parents and families and offers few resources to those of us who have autism (Washington Post, 2020). The rhetoric used in this depiction of autism treats autism as a disease—and diseases need to be cured.

Jessica Penot
My mother has never mourned having two autistic daughters. She loves us for our differences.
Source: Jessica Penot

The fundamental problem is that most of us with autism see autism as a part of who we are as people. If I stopped being autistic, I would no longer write novels and books (based on my stereotyped interests) or travel the world chasing my weird historic hyper-fixations.

My autism caused stress for my family when I was young. My mother had to put up with meltdowns every night at dinner and every morning when she dressed me for school. She had to listen to me talk endlessly about whatever hyper-fixated interest I was stuck on at the moment. It was hard for her, but all these things are who I am—and if my autism was a disease that was cured, I wouldn’t be me. I would be another woman—and as a child, I would have been another child.

This kind of rhetoric suggests that what Autism Speaks and groups like them want is to get rid of us and replace us with less difficult humans. We are a burden that needs to be cured, like leukemia. For those of us in the neurodiversity movement who fight for self-advocacy, we view this as the exact opposite of what autism awareness should be. The question then becomes: What should it be?

Real awareness means education—education gained from the people who live with autism. I am aware that parents that have autistic children struggle every day. However, autism awareness fails many parents as well.

My mother would be the first to tell you that my sister and I were not easy children. Since my sister and I were hyperverbal girls and not the stereotypical male, nonverbal autistic children, traditional autism awareness failed us. My mother says:

“I knew my two daughters were very different. Their father and I found ourselves constantly trying to help them fit into the world and find an explanation for their behaviors. We turned to mental health experts and were presented with a great variety of diagnoses over the years, but none of them were autism.”

My sister and I weren’t the images autism awareness campaigns spread of autism, so my mother never got the help she so desperately needed with us. Our mental health was the narrative of much of her life, but she wouldn’t change us or the women we have become.

This is what awareness is. It is education and acceptance. It is realizing that we are difficult and different and accepting us in any case. To me, my mother is what autism awareness should be. When she found out her daughters had autism, she read books written by autistic women and scholars on the subject. She tried to understand autism from our perspectives. She read the research and sat down with us and talked about it. We mattered in the conversation. It wasn’t just about her struggles as a parent of two autistic girls. It was about us. It was about understanding and loving us exactly as we are and accepting us.

Neurodiversity advocates say that April should be called Autism Acceptance Month. This may seem like a minor semantic difference but is in fact a massive shift. Organizations like Autism Speaks have spent 20 years depicting autism in all its worst manifestations. It has shown images of parents struggling with nonverbal children having meltdowns and shutdowns. It has promoted awareness of autism through depictions of how hard people with autism can be when we are at our worst.

These images are awareness of autism, and they are real depictions. However, acceptance is something else. It is taking the time to get to know people with autism in all our weird awkwardness and not judging us for it. It is learning about adults with autism and their perspectives and not just embracing the stereotype of the difficult child. It is learning about how autism manifests across the spectrum in well-known people with autism like Temple Grandin, Hannah Gadsby, Elon Musk, Daryl Hannah, and Anthony Hopkins. It is supporting organizations like Autism Self-Advocacy Network that promote the voices of people with autism and advocate for research into improving the quality of life for people with autism.

References

Luderman, Sara (2020) The biggest autism advocacy group is still failing too many autistic people. The Washington Post.

Beaudrot, Lee (2021). This April, Don’t Support Autism Speaks. FSU News.

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