In a little over a week, we will begin “celebrating” National Autism Awareness Month. We will highlight children who have made unbelievable progress in spite of their “limitations,” inclusion at schools and in the workplace, awareness and acceptance, and parents as well as caregivers who selflessly give of themselves so their children can have a better life. One thing we won’t focus on is ableism, and in particular, institutional ableism. Perhaps that is a mistake.
To my way of thinking, cultivating awareness of autism is central to understanding the totality of life experiences of the autism community. We cannot simply celebrate the positive, and ignore the negative. Ableism refers to prejudice and discrimination against people with disabilities. When it is institutional, we are talking about social barriers that become embedded in society. Let me offer a few examples of institutional ableism directed at children and adults with autism.
- There is a lack of good, reliable national-level data on how good (or bad) a job we are doing to meet the needs of our autistic population. Yes, the 2015 Life Course Outcomes Research program is one attempt to fill this void but large gaps remain. A lack of data creates an unlevel playing field when it comes to funding, policy-making, and accountability.
- The high rate of unemployment for adults with autism is “criminal.” Many autistic adults can work and if given the right opportunity, become valued employees. They are unemployed NOT because of their shortcomings; rather they are discriminated against because of what we assume about people with autism.
- Lessons about people with disabilities are largely absent across the curriculum in grades K-12 and higher education. Sure, we might have a reading, field trip, guest lecture, or some sort of celebration devoted to people with autism, but this type of inclusion can be worse than nothing. Courses in the health, social, and biological sciences that focus on the totality of behavior should do just that, focus on everyone.
- It should not make “news” when churches, schools, and businesses embrace people with autism. In today’s world, this type of inclusion should be the norm, not the exception.
- For too many people, the word autism and deficiency are synonymous. For example, three distinguished professors (Earley, Ang, and Tan) refer to “cultural autism.” In Developing Cultural Intelligence At Work, they use this term to describe anyone who might display “extreme forms of behavioral deficits or excesses” that are seen by others as “autistic-like.” Unfortunately, the thinking of these professors is just the tip of the iceberg. We live in a society where autism continues to be seen primarily as a scourge or a deficit that needs fixing.
To many of us, National Autism Month should feel good. It should be about how far we have come; it should be about individuals surmounting obstacles and fulfilling their potential. While sharing these stories is critically important, we cannot forget about the pervasive social obstacles that stand in our way. As an author, professor, and sociologist with a lifelong interest in diversity, I constantly read about individual and institutional “isms,” including racism, sexism, classism, and anti-Semitism. Rarely do I come across stories about ableism and specifically, information about systemic discrimination against those with autism. That has to change.
Please note: I am currently writing a book about my entire family and how we have grown over the years, in large part because of Jimmy. My son Jimmy is a middle-aged adult on the autism spectrum. The voices and perspectives of my two daughters and wife as well as other friends of Jimmy are included throughout. It is a real, uplifting, and remarkable story; one which I have wanted to share for a long time. The book will be published later this year.
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