Autism is treated differently than other developmental disabilities. It goes directly to why Autism Acceptance Month—a critical step up from Autism Awareness Month—is so valuable and important a distinction and change.
Awareness historically has been more about something being wrong and a cry for help and donations. Awareness has been more about the “plight” of families than the actual lives of autistic children and adults.
Acceptance, by contrast, is about accepting people—accepting autistic people as autistic.
Still, as much as we might want to replace awareness with acceptance, we would be wrong and injuring many children and adults to think genuine awareness campaigns are unnecessary because everyone now knows what autism is. In actuality, all the time—every week—I hear about a child getting a diagnosis and their family having no idea what autism really is or what it means. This week I served on a parent panel for a graduate program with a smart, well-educated person who described exactly this response when their child was fairly recently diagnosed.
People living in, advocating in, working in, or socializing around autism professionally or personally often have distorted and mistaken notions about how most people view autism. They sometimes say everyone has heard of autism by now through news media, social media, entertainment media, and just encountering autistic people in their lives.
But it’s the red-car thing—we notice a lot of red cars when we are thinking about red cars. Also, a lot of autistic people remain segregated in schools, housing, and society—most people can go through their lives without much noticing autistic people at all.
So autism is still largely an unknown, even among generally well-educated people. Autism awareness and education still matter a lot, and they are prerequisites for acceptance. Awareness and acceptance are both essential.
And, of course, autism acceptance campaigns can serve the dual purpose of supporting autism awareness, making people better informed as well as more interested and empathetic.
That said, autism acceptance involves much heavier lifting, and today I’m writing about why that is: because it runs counter to the dominant thinking and language about autism from families and organizations for many decades—actually, forever.
Let’s talk about it. After all, people in organizations, schools, provider agencies, government, and families and even autistic people themselves need to talk about autism more—with minds and hearts far more open. We need shared communication, more education, less certainty, more listening, greater effort at genuine perspective-taking, and deeper, longer pauses and reflection. I am definitely included in needing to improve in all that. The dialogue in and around autistic spaces far too often is adversarial, unrealistic, and toxic.
I have been asking recently why Down syndrome and even general intellectual disability organizations—and advocacy for people with Down syndrome and intellectually disabled people—are so much more effective, coherent, and successful than autism organizations and advocacy for autistic people.
The answer is simple, really: How can you advocate effectively for something that you spend most of your time fighting against?
So much around autism is primarily, still, a struggle to make autistic people nonautistic, rather than to support them to have their happiest, best lives as autistic human beings.
Goals in school, therapy, and even adult life are usually based on trying to make the person act nonautistic—or to make progress in them somehow actually becoming and being nonautistic.
Autistic adults tell us autism is essential and integrated as identity, as who they are. But most parents still see autism as something that happened to their child, took away their child, or made their child and often their family suffer.
This all differentiates autism from intellectual disability generally and from Down syndrome specifically. Intellectual disability and Down syndrome are seen, rightly, as inherent. Autism is seen, by most parents and many professionals, wrongly, as changeable.
This is the key pivot point—why claims of identity around autism are embraced or rejected, why goals in school and measures for life supports are so controversial.
No one is trying to make the intellectually disabled person be not intellectually disabled, or transform someone with Down syndrome into someone who does not have Down syndrome. Instead, they are trying to give them their best lives while embracing who they are and loving them as they are.
People try to give autistics their best lives—we all think we are trying, for sure—but for some it’s done as an holistic part of accepting and embracing autistic people as autistic, while for others it’s done in rejecting that identity and trying to reshape the person as nonautistic in whichever ways prove possible and in every way if that proves possible. It’s a fundamental rejection of autism—as a thing and as it exists in individuals—as worthwhile.
Many autistics have written, as I have previously, about the injuring psychological, emotional, and other consequences on an autistic person’s inner life, sense of self, connection to family and community, and happiness from rejecting and fighting the autism in autistic people. In fact, when we take this approach, we validate other people’s rejection of and bullying of autistic people, because we are ourselves rejecting autism and thus autistic people as worthwhile, precious, and valuable as they are.
In my 2015 talk and six-part article series for the Autism and the Pursuit of Happiness conference, I said:
What a difference for an autistic person: the possibility of lifelong acceptance versus the possibility of lifelong rejection. One life or the other, we can presume, would look very different. As parents, which one would we want to choose for our child?
But then, let’s be honest, too: how hard is it for a parent to make that change?
It’s really, really hard. It means not just accepting your child for who your child is.
For parents who have been pursuing a different approach, it also means accepting that your parenting for some number of years—for your child’s lifetime thus far—was injuring your child.
To shift to a model of acceptance means consciously realizing you’ve been parenting your child with rejection. Wouldn’t most of us, instead, tend to cling to what we’ve done and what we know and defend it with all our being?
It requires a fairly dramatic bravery and self-recognition to make this transition and to move forward with not just acceptance for your child but also forgiveness for yourself for doing the most unforgivable thing: parenting poorly and hurting your child.
The same holds true for organizations and professionals: what does it take to admit that the good work has not actually been good but, instead, has caused great harm? That’s difficult stuff.
Some of the most urgent work to be done in the autism community is to overcome the dominant cultural model based on cure and to help parents, families, professionals, and organizations make this transition.
Then of course the even bigger paradigm shift will be to have the dominant cultural model be acceptance from the start.
I recently learned about the PALS Congratulations Project, in which adults with Down syndrome hand-write personal “Congratulations!” letters to new and expecting parents of a baby with a Down syndrome diagnosis—literally and powerfully rewriting the narrative around disability into one of hope, possibility, appreciation, and joy, encouraging acceptance right from the start.
As we move each year through Autism Acceptance Month—April—we recognize the goal of such labeling and marketing is to make them moot and make acceptance and embracing of autism and autistic people the lived reality for everyone—parents, professionals, society, and autistic people themselves—around the calendar and always.
So, to autistic people, to parents of autistic people, and to future autistic people and the parents and family of them, truly: Congratulations!
When most everyone starts to feel that way—that autism is cause for congratulations—then we can start to call it Autism Celebration Month.
I can tell you that my son Nicholas has been the very best part of my life, from start to finish. He has had deep challenges, and we have together. But his life is immensely joyful each day, and he helps make mine utterly sweet and wonderful.
I am not diminishing the challenges. But I wish such beautiful lives for you, too.
They are right there if you choose to accept and embrace them.
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I have posted short excepts from my keynote address at the fall 2019 HANd Autism & Neurodiversity Conference here:
I invite you to read my articles on this site about autism and intellectual disability, partially listed here, including:
- Autism 101: Hating Your Autistic Child
- Accept or Reject: Part one of a series on autism value contrasts
- Top 10 List: Things to Remember When Working with Autistic Children
- On Blackness and Autism, Identity and Essence
- 7 Values to Live By: Autism Across Schools and Classrooms
- Autism Adulthood: Caring for the Future and the Present Moment
- Definition as Destiny: Breaking Autistic Boundaries
- No “Because” but Love—Intellectual Disability, Identity, Representation, and Value