Recently, I finished reading Janine Booth's Autism Equality in the Workplace (Jessica Kingsley Publishers, London and Philadelphia, 2016): what an inspiration! The content is clearly laid out, with a survey of the barriers to successful inclusion of autistic people in the workplace, and solid recommendations to remove those barriers. Throughout the book, Booth has included the perspectives and experiences of numerous autistic people she has interviewed. These things alone make the book a compelling and invaluable resource.
What impressed me most of all, however, were two insightful distinctions that inform much of Booth's approach. First is the revealing contrast between the medical and social models of disability. The medical model, which has been (and unfortunately still remains) the default approach, is to focus on the individual's “problems”, suggesting that the solution lies entirely with (in our case) the autistic person. More recently, the social model of disability has started to gain ground. The social model recognizes that social constructs are the barriers to inclusion of those with disabilities. A simple example: Is the deterrent to employing someone in a wheelchair the fact that they cannot walk or that your workplace isn't wheelchair accessible? We all recognize that to be inclusive, it is the workplace's responsibility to accommodate employees in wheelchairs. To think otherwise would be considered heartless, inconsiderate. The social model simply suggests that we take the same perspective to all disabilities.
And then there's that pesky word, “disability”. Since discovering that I, myself, am autistic, I have struggled with that word. Indeed, it holds some degree of controversy in the autistic community at large. The other distinction Booth makes resolved that controversy for me very simply, differentiating between “impairment” and “disability”. Continuing with the example of a person in a wheelchair, the impairment is that they cannot walk and must use a wheelchair. The disability, however, is merely the lack of accommodation, e.g. a ramp and/or an elevator. Once the accommodation is in place, while the impairment remains – for it is a part of that individual – the disability disappears. Extending this distinction to an autistic employee is equally simple: if the autistic person, for example, is hyper-sensitive to bright lighting, that's the impairment; the disability is caused by overly bright lights. Allow them to turn out the lights above their workspace and use a desk lamp and “poof!”, the disability is gone.
Booth, herself autistic, is from the UK, but Autism Equality in the Workplace includes information from not just the UK but also Australia, Canada and the US. I highly recommend the book for anyone dealing with diversity and inclusion in the workplace.
Hungry for more, I was delighted to stumble upon a copy of Michael Bernick and Richard Holden's The Autism Job Club (Skyhorse Publishing, New York, 2015), which focuses on a job club in San Francisco started by the Autism Aspergers Syndrome Coalition for Education Networking and Development (AASCEND) to help autistic people, including Bernick's son William, find jobs. Bernick and Holden take a different approach from Booth, focusing on educating autistic people about the workplace, job coaching to give them skills to help them succeed, and helping them with placement. There is a short chapter, near the end of the book, that does mention work being done to change workplace culture, but the bulk of the book is concerned with how the autistic individual must adapt in order to find work.
There is no doubt that the two approaches are both necessary: working directly with autistic people to give them tools for success, and changing workplace culture to increase awareness, understanding and accommodation for those on the spectrum. To date, there has been a far greater focus on getting the autistic candidate to adapt to the workplace and not nearly enough emphasis on getting the workplace to understand the benefits to accommodation.
As I was reading The Autism Job Club, however, something started to bother me. Then all of a sudden it hit me: the voices of the autistic people mentioned in Bernick's book are all but silent. Yes, there are a few passages quoting autistic people, but these are almost invariably quoted from written sources (a flyer, a blog, etc.). There are many more quotes from neurotypicals (those who are not autistic or otherwise neurologically different, such as ADHD, dyslexia, dyscalculia, etc.) who are either parents of an autistic person, job coaches or otherwise involved in helping autistic people find work.
Reading Bernick's book felt like being the topic of conversation but not being part of the conversation. It felt like a doctor talking about you to her or his nurse, referring to you as “the patient”, all while you are in the room. The diagnostic rate of autism here in the US is 1 in 68 – a rate of prevalence that will only increase with time, especially as we get better at diagnosing girls and women on the spectrum. With a prevalence like that please understand that we are in the room and that we do have a voice. If a guest speaker were invited to a school to give a talk about Black History in America, it would be (certainly should be) a reasonable expectation that the speaker is Black. Similarly, if you are seeking a greater understanding of autism in the workplace, please have the same expectation: that you want to learn from someone who has direct, personal experience of what it's like to be autistic in the workplace.
As you are working toward inclusion, be inclusive. Such inclusivity is becoming more frequently second nature when it comes to race, gender and sexuality, but we're nowhere near that when it comes to disability. We're going to change that.
Should you wish to purchase a copy of Janine Booth's Autism Equality in the Workplace, you may do so at a discount! Use the code Y16 when ordering from the publisher.