Recently, I was reading a new book by the mother of an adult son with autism. On the back cover, she describes how reading her book will change us. First, she says, it will “convince you inclusion is easier than you think.” She then goes on to talk about how she “scoured the country” to find individuals and programs that support her son.
Yes, I agree that inclusion is critically important and yes, inclusion matters. But as a sociologist and the father of an adult son with autism, I’ve found that inclusion, whether we’re talking about disability (or some other dimension of diversity), is typically even harder than most of us think; for numerous reasons:
- The U.S. is an individualistic society. When it comes to challenges, we tend to focus on what we do and can do as individuals. Yet, much of the exclusion in this country is bigger and broader than individuals. Yes, there are some programs that are tailor made for autistic individuals but they are pretty rare. The author, for example, uses the example of Specialisterne for good reason. But this is one company, and it is cited over and over again in the literature on inclusion and autism. There is a reason for that. There aren’t many companies like Specialisterne.
- Often, people are under the assumption they’re inclusive when they’re not. This may be due to something called unconscious or implicit bias. While such bias remains hidden, its effects are all too real. For instance, I might not be aware of the ways in which I exclude my son from activities that he might very well enjoy. One good example is voting. For the longest time, I assumed he wasn’t interested and/or wasn’t able. At 35 years of age, he voted for the first time, for President of the U.S. Yes, it took some preparation on our part, but he got an awful lot out of it.
- We often fail to see or recognize certain forms of discrimination that send children or adults with autism the message “they don’t belong.” Instead of “in-your -face” treatment that isolates and denigrates, discrimination of this nature can be more structural, subtle, and persistent. Think of workplace discrimination that accounts for the unbelievably high rate of unemployment amongst those with disabilities. The fact that parents feel a need to create a business or a group home in their communities in order to provide autistic adults with meaningful employment and a place to live shows a glaring lack of inclusion throughout society.
- Overcoming bias and exclusion requires a strong commitment by individuals, groups and communities over time. Autistic individuals and groups of individuals need help. Real, inclusive change is not simply an interpersonal, short-term, feel-good process.
Many of our images of inclusiveness are shaped by the media. And there are some wonderful stories out there. But the inclusion of disabled children and adults is a significant lifelong challenge for many. We need help!
Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades. My son Jimmy is a middle-aged adult on the autism spectrum. The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout. It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time. Both the print and Kindle version of this book are now available. Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://www.facebook.com/RichardDBucherPh.D).
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