In 1998, a British doctor named Andrew Wakefield published a paper in the medical journal The Lancet claiming to have found a link between autism and the vaccine for mumps, measles, and rubella. There was no such link. The paper has been retracted. And an investigation into the controversy suggests that Wakefield, who lost his medical license, may have been trying to get rich by selling his own replacement measles vaccine. Still, Wakefield and others like him succeeded at sowing divisions that have continued to this day.
During the coronavirus pandemic, we’re seeing the consequences of that initial anti-vaccination scheme as it’s moved beyond autism discussions and become part of the scaremongering around the Covid-19 vaccine. And, inside the autism community, autistic people are being pitted against one another, in a scenario in which the only outcome is that everyone loses.
The antivax movement emerged out of the idea that autism was an enemy to be defeated, which lies in direct contrast to the neurodiversity movement and its focus on accepting and supporting autistic people (as well as those with many other disabilities). Today, that means that too many parents are getting the message that fighting for their kids, especially if their kids have high support needs, is in conflict with the neurodiversity movement led by many adult autistic self-advocates.
To make the situation worse, in December 2021, The Lancet—yes, the same journal that published Wakefield—set off a media firestorm when its report on the state of autism services included a proposal for a new label of “profound autism.” It created the label with the intention of establishing a category of autistic people that can be segregated, at least by definition, from the rest. But this is a false dichotomy.
The effort to divide up the autism spectrum has emerged mostly because some parents whose kids need a lot of support want to differentiate their child from autistic adults, whom they see as “not like their child.” Such parents believe that they are fighting a different battle than that of autistic adults who can, at times, pass as neurotypical; they see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts. First, the fight for rights and supports for all autistic peoples is one fight—and indeed, a difficult one, given the many barriers to inclusion layered throughout our ableist society. Second, autistic people who seem very different from the outside may be more similar than we realize.
If there were really a need to divide the autism community between the parents and their kids who need high support and the autistic adults out in the professional world, we guess we’d be on opposite sides. Julia is the executive director of the Autistic Self Advocacy Network, while David is the father of an autistic boy with Down syndrome. Nico, David’s son, and Julia, have the kind of superficial differences that lead some to see a conflict where none exists—Julia gives speeches, and Nico is learning to use an Assistive Communication Device. Nico has an intellectual disability, and Julia does not. But in fact, in our years working on disability rights, we have seen that every policy goal and cultural shift around autism acceptance has been a rising tide that lifts all boats.
Popular
"swipe left below to view more authors"Swipe →
When self-advocates call for inclusive schools, ending restraint and seclusion, and alternatives to guardianship, they are taking on issues that are critical for people with the most significant disabilities in the United States. But too often the conversation around autism in policy circles, scientific communities, parent groups, and more all focuses on superficial differences, instead of on the policy issues that stand to benefit our whole community.
Here’s the problem: Despite the work of so many self-advocates, parent advocates, and allies, the dominant message in our society is still that autism is horrible, and that autism, intellectual disability, and other significant cognitive disabilities mean that you aren’t really a person. People don’t have to believe these things consciously; they can just absorb the messages they hear all around them without realizing it. This can have a few consequences.
When parents have absorbed these messages, maybe without even realizing it, that moment of diagnosis can lead to a very dark place. For many parents, finding out that their child is autistic or has a significant disability is an agonizing time, when all those subconscious beliefs and fears come crashing down. In that position, parents are very vulnerable to those who tell them their child needs to be “fixed” or “cured,” or that their future is bleak.
And it can be incredibly hard to break out of that trap. If you believe that autistic people can’t be happy, or live good lives, or grow up and learn new skills—as the dominant message tells you—then when you, the parent of a child with high support needs, see an autistic person who can do things as an adult that an autistic child can’t, or who seems happy, or who has a good life, it can seem easy to think that they must not have “real” autism. After all, in this false message, “real” autism means suffering in our society.
Believing that autism equals suffering, so people who aren’t visibly suffering don’t have real autism, is a classic logical fallacy that becomes difficult to refute. As a result, both of us have seen Medicaid assessments and other diagnostic reports describing autistic people who need 24/7 support as “mildly affected.” When parents like David say that their nonspeaking autistic child with an intellectual disability brings them joy, other parents have responded that we just don’t understand “real” autism. Meanwhile, the structural failures—the kinds of false scarcity that David wrote about in The Nation last year and that the Autistic Self Advocacy Network lobbies to change—that actually undermine quality of life for so many autistic people and our families, such as inadequate communication supports and lack of community services, go unaddressed.
Another piece of the puzzle here is that many people with significant disabilities and support needs work very hard to hide them from the public, both to avoid stigma and because it’s nobody’s business. People do not wear their developmental history on their bodies, nor should any autistic adult be pressured to disclose a difficult history with, say, toilet training, or the support needs they require today. But they do have them.
Julia, for example, gave a speech in 2018 at the UN. People have used this to argue that she must have a fundamentally different, and much “milder” kind of autism. What those people don’t know is that on the day of the speech, the organizers had to rearrange the entire event schedule because she had a meltdown and couldn’t speak. They don’t know about the emergency measures she took to be able to read her speech after that; the support person behind her; how sick it made her after; or even that she wore glasses to read her speech because she damaged her eyes banging her head as a teenager.
David’s son, Nico, has the opposite problem. Because he doesn’t speak with his mouth, because he’s unlikely to be the executive director of a major nonprofit, because his needs are so overt, people easily overlook his layers of understanding and competence. He’s cute, but that cuteness is the least interesting thing about him. And sometimes, sadly, even adult self-advocates are too prone to distancing themselves from people with intellectual disabilities—from Nico.
Everyone is harmed by these false divisions. Nico deserves to be seen as the complex, competent person he is. Julia deserves to be able to do her job without people denying her diagnosis. Parents like David deserve to know that a good life is possible for their children. Nico and Julia both love Mardi Gras beads, Hamilton, and stuffed animals. They both struggle to access necessary health care, and they both need the same kind of support to complete daily tasks. They both deserve a society that accepts, accommodates, and values them.
So what do we do now? First, we have to tell different stories, and lift up examples of people with significant disabilities who are happy, included, well-supported, and doing lots of different things. Without more accurate media depictions, it will be hard for new parents—or anyone—to rethink what they’ve been told about autism. We can work to increase inclusion in our own families, schools, and local communities, so that more people get to know us. We can presume competence—an important concept in the intellectual disability world that starts all interactions with the presumption that the other party is able to do things, able to communicate, able to be included. We can provide supports and accommodations for self-advocates, and we can normalize the idea of needing help—a lot of help—without sacrificing agency. We can be unwavering about the fact that autistic people and people with intellectual disabilities are full persons. And when systems fail, we can focus on those failures and hold our leaders to account, rather than saying that some people are just too disabled to deserve fair treatment.
Ultimately, dividing up the autistic spectrum doesn’t help autistic people–but it does distract us from the urgent work necessary to ensure that all autistic people, especially autistic people with the highest needs, have everything they need to thrive. The people who benefit from this division seek to maintain the status quo, where resources are scarce and where higher needs justify segregation and coercive control. We think autistic people–all autistic people–deserve better than that.
