Thank you to everyone who came out to the capital on April 3rd to support Autism Awareness and Acceptance! A special thanks to Gov. Tony Evers and Sen. Roger Roth for their support and to Jonah, Erin, Matt, Al and Scott for sharing their perspectives!
Below is the text of Scott Allen’s speech. Scott is a member of our board and is on the spectrum himself:
Speech for 3rd Annual Declaration of Autism Awareness Day/Month in WI, April 3rd, 2019
© Scott E. Allen 2019
I’m Scott Allen. My diagnosis is Asperger’s Syndrome. I spent childhood loving dinosaurs, pursued paleontology in college, had to change paths afterward, then obtained a Master’s in counseling. I’ve been speaking publicly about autism issues since 2002. I moved to Madison in 2016 and did autism-related work at the Waisman Center for two years. Since 2017 I’ve also been working at the McBurney Center as cofacilitator of an empowerment group for UW-Madison college students on the autism spectrum. I’ve been on the board of the Autism Society of South Central Wisconsin since May of 2018. I’ll soon be working at Westside Psychotherapy here in Madison, specializing in counseling adults on the spectrum. I hope to get a Ph.D. to study adults on the spectrum so my research can benefit them.
Autism awareness is the starting line, not the finish line – a first step toward tolerance, familiarity, acceptance, and appreciation. To be aware of autism is not the same as valuing or being open to it, and we must promote societal change beyond awareness. Awareness is the stone that supports the bridge, not the destination on the other side.
With that in mind, I have four points for the general public and the autism community to be aware of.
First: Be aware: autism diagnoses say almost nothing about abilities or attitudes. The autism spectrum is so diverse that most statements about it are very incomplete. It includes people who cannot participate in public life, people who make some of history’s most brilliant contributions, and every other combination of abilities and outlook imaginable. The differences in outcome can outweigh neurological similarities.
In fact, this diversity is so extensive that we are divided within it. Be aware: there are invisible walls in our autism community. Walls between different kinds of functionality, between professional and volunteer communities, between adults on the spectrum and other stakeholders. We still have deep disagreements over the meaning of and response to autism. This splits our political voice. To unify, we must break the invisible walls through personal contact, share perspectives with honesty, civility, and compassion, and seek the best evidence in science and policy. We must focus on positives while addressing negatives, and all our stakeholders should interact so we do not get stuck repeating clichés, but instead devise new attitudes and approaches.
Be aware that autism diversity also means racial, ethnic, gender, ability, and neurological diversity. Autism occurs in all groups of people, yet outcomes for those who are not white, well-off, or normative are usually worse due to social inequality. Let us reach out to all these communities for solidarity.
Second: Be aware that we on the spectrum have existential concerns. We face more than clinical deficits. Who we are? What’s our place in society? Are we legitimate? Such concerns cannot be “cured.” Our distinctive traits unavoidably lead to different worldviews, attitudes, and opinions, which we face every day, so don’t suppress how we naturally think and feel: be aware that our way of being is as legitimate as yours.
We on the spectrum are often asked to tell our life stories, and not much else. We are asked about our development – childhood, schooling, becoming adults. Good questions, but narrow. Ask us also, when possible, about love, loss, hope, fear, why we value or reject, and other inescapable human questions. Most people, including us, don’t speak the language of human complexity, so the complexity of our differences goes unappreciated.
We deserve no shame for who we are, so be aware that mostly we don’t suffer from being on the autism spectrum, we suffer from being dismissed, degraded, and devalued in a culture of excessive ranking, obsessive competition, and a stubborn disregard of other perspectives. Rejecting our own traits does not solve this alienation.
So be aware, communication issues are not our defect – they exist between us and others. Yes, those on the spectrum often have difficulty interpreting others, yet neurotypical people also have difficulty interpreting us. Don’t shame us for a mutual process.
Third: Be aware: we need a model of growth and dignity, not this model of deficit and disorder. Yes, some of us face such severe impacts that growth is minimal and personal choice means only simple preferences. Yet what puts more knowledge, choice, and self-respect into our hands is worth it. Growth and choice are matters of degree, not either-or. Research on Down Syndrome and minority college students shows that growth-oriented attitudes and actions help people do much better.
Be aware that this growth needs challenge. Don’t say “That’s how they are, they can’t change.” Don’t sell us short. To further someone’s potential, you cannot coddle them. Yet I worry you may think “no coddling” means “no support” or “no sympathy,” and that’s false. Healthy challenge needs lots of support and sympathy; without these, challenge is unhelpful, even damaging. Challenge those on the spectrum to grow; don’t push them past their limits; respect their values, goals, and abilities. They cannot “suck it up” or “just deal with it;” what they face is so complex and uncertain they need unique methods. Even we who get by on our own need supports, whether formal or personal, to thrive.
Fourth: Be aware that kids on the spectrum become adults on the spectrum. Those adults are not well-researched, especially those most challenged or gifted. Mandatory supports end at age 22. Serious barriers block adult diagnoses. We face mental health problems since there’s no good path to meet our social needs or find stable jobs that suit our education. About 70% of us are un- or under-employed.
These job problems are mostly about workplace culture, misunderstanding, bullying, and other things resolvable through education, exposure, and accountability. Business owners, be aware: many on the autism spectrum make persistent, loyal, effective workers, with a few accommodations that cost little or nothing. You are missing some of the most consistent, productive employees.
Be aware we’re not all good at math and computers. This stereotype limits our opportunities. Many of us excel at English or art or history, things qualitative, not quantitative. I hope business leaders will stop assuming that “autism” means they belong in the IT department.
Adult self-advocates should be more aware of research, policies, and people that influence autism attitudes. How autism is interpreted is how we are interpreted. This ignores our individuality; others see us through the lens of concepts, groups, and pundits representing voices that are rarely our own. We must be more informed to confidently influence our own destinies.
To sum up, much of what we need is to convince neighbors, coworkers, even friends and family to apply the solutions we already have. We deserve rights and basic respect like everyone, but is this valued? In this community we talk a lot about “treatments” and not enough about how we are treated. Beyond awareness is the freedom to participate in society without being forced away or frowned upon. To accept another human is not based on facts alone; it’s a choice from within. If others choose not to accept us on the autism spectrum, society will devalue us no matter how many studies or supports exist on our behalf.
Awareness is the starting line; the finish line is when others treat us without fear, hostility, insult, or condescension, when we can live with comfort or personal pride, not categorical shame. We will know that finish line has been crossed when we are seen not as social invalids or permanent children, but humans who deserve rights, fair opportunity, and dignity. We don’t all have the same potential; we do all deserve to develop what potential we have.
Reject ignorance, exploitation, and hostility; accept others for who they are and who they can become; reach out to your communities, and look inside yourself for strength.
Thank you, Governor Evers and Senator Roth, and thanks to all who made autism awareness an official position of the state of Wisconsin. Thank you again for the honor of addressing our community.
Be well, and do well.