Part 3: Where to find the right information about the Autistic experience
So as a parent, where do you turn when you realize misinformation is around every corner? What do you do when your child has been diagnosed with autism and everything you read or have heard scares you and makes you seek help wherever you find an open door?
My answer would be that you turn to the people most like the little human you’re trying to raise to the best of your ability.
Many parents know nothing about experiencing life as an autistic person unless they themselves are as well, and many doctors continue to spread the knowledge of autism they received in school– which is often very little. Finding knowledgeable professionals who understand autism is a luxury most of us can’t access.
The information provided by harmful organizations, or the wrong people, is often a reason for the confusion. Parents aren’t taught about autistic lives, they’re instructed on how to handle autism as a problem, to not expect much, or expect the worse, among other things.
To you, my mask is a sign of successful treatment. To me, it’s a painful way to stop being seen as a disappointment. To you, my need for blunt clarification is needy or nosy and my blunt transparency is rude or extreme overshare, but for me, it’s just the natural way my mind works.
The published research surrounding autism makes it dangerous to be autistic, especially if you are also a minority. When the people who study, publish, and talk about things regarding your disability are actually reinforcing negative stereotypes, you become feared and threatened. What happens when you’re confronted by the police are involved in an accident?
If you haven’t educated yourself on cases like those of Matthew Rushin or Osime Brown, I beg you do.
I’m not saying find one autistic person and take only their word as 100% applicable to your child, and I’m not saying you should ignore all the doctors and go strictly holistic with Sunlight and Bleach cures (please don’t).
I’m suggesting being open to befriending autistic people- mothers, teachers, doctors, business owners, students, artists, and neighbors, in addition to following comfortable guidance given. Read books by autistic authors and take notice of the difference in language and points of view.
No, we don’t know your families or situations, and we are not your autistic child. However, if I’m honest, we share something in common with them that you will never experience, and that is a specific developmental difference.
We are not Google for autism, nor do we claim to be, but we have been and will be autistic every day of our lives. I’ve never met an autistic person with whom I didn’t share an autistic trait or comorbid condition, or one who wasn’t open to sharing their experiences with those who had genuine interests or need to know.
What’s wrong with Autism Speaks?
Although there are others (National Autistic Society, Generation Rescue, the Autism Society, TACA, Autism One, National Council on Severe Autism, and many parent-led groups fueled by misinformation from larger orgs), I chose to focus on Autism Speaks (AS) because are the most widely-recognized name in harmful advocacy.
While exposing AS isn’t a new thing (just do a quick Google search and look on Wikipedia and YouTube), autistics will continue to do so until true change is seen.
Autism Speaks benefits by preying on families and painting autism as a burden and epidemic to be feared, fought, pitied, and (historically) cured.
Many autistic people embrace autism as part of their identities, so imagine always hearing that what makes you YOU makes you a problem from birth– an “other” who is so broken they don’t deserve to exist. Organizations like Autism Speaks spend most of their money — the millions they receive from donors around the world– advertising themselves.
Autism Speaks mostly exists as a marketing machine for its own harmful misinformation. Their materals are composed in support of the families of autistic children– their target audience– but usually not the actual children or adults they grow to become. They reject autistic adults who expose their agendas (the majority of us). They use their growth and misinformation to forge partnerships with organizations that can help their bottom line and until recently, paid their executives some of the highest salaries in the world.
Ask yourself- how can organizations claim to know what’s best for autistic people without autistic input? Why do the very few autistics they include never last and only serve to be used as tokens and as proof of diversity? Have you ever actually met an autistic person who works in a position of power within AS? Have you ever met an autistic person who truly supports them?
What happens to that 8 year old kid they plastered across their ads 10 years later? Do they work with autistic-run organizations? Speak on the same panels? Invite them to their own and hand them the mic? How much of their budget actually goes toward supporting autistic people and families (1-4% from 2010-2018)?
I have spent countless hours going through the AS budget reports, and I find it ironic that they now display their programs/services and research/advocacy costs in the same category while wording their projects in ways that make them seem angelic.
AS is a PR machine constantly adapting its image by adopting the language of inclusion as a facade. They would rather (finally, but sadly) acknowledge autistic children of different backgrounds and genders and include the siblings of autistic people who accept their position, but limit the agency of those they claim to support.
Their inclusion efforts often match the trends in society at the time and nothing more. Only in recent years did AS begin to stop sparsely tokenizing marginalized autistics and diversify their branding materials. Meanwhile, the founders’ daughter, Katie Wright, can still be found trolling Autistics on Twitter and campaigning against vaccines. Autism Speaks has done nothing to undo its legacy of being founded on a race for a cure. Despite removing cure rhetoric from its messaging, they have continued to invest millions in genetics research.
Now, a primary grievance with Autism Speaks is that they push conversion therapy, ABA, which the Autistic Community has repeatedly decried as harmful, abusive, and emotionally traumatic.
This detailed summary from International Badass Activist details the harrowing history of Autism Speaks:
Legitimate advocacy means dismantling harm.
While I don’t thing everyone who works for or with AS has malicious intentions, an organization with this much pull should be working to help tear down the misinformation and bias that they instead are the primary broadcasters of.
Yes, they’ve created programs and partnered with companies in recent years to combat the negative exposure, but how can we expect them to truly support the very people they’re working to silence or force into assimilation with harmful therapies? And when will any of those partnered organizations be autistic-led, focused or included for some other reason than us being boasted as successful side-projects to elevate a brand that never would have included us without financial incentive?
The rise of Autism Speaks and similar organizations also gives rise to a separate community– one parents may be or have been exclusive members of: Autism Parents. Parents are pushed into fear and uncertainty, immediately handed a guide from Autism Speaks once their children are diagnosed, and sent with no other direction than what is in that guide.
Some insist that speaking, working, or independently-living autistics who disagree with their agenda must be lying, seeking attention, or not really needing support. Some fear that acknowledging the support needs of those they deem “high functioning” will take away from their child’s access to resources. Organizations like Autism Speaks make family members of Autistics feel like they are victims.
Tips for those seeking resources
So where else can you turn?
So many parents stumble upon autistic communities and organizations after they’ve become weary from exhaustion. For some, including parents subscribed to this site, don’t realize how little exposure they had to the truth about life as an Autistic person until it’s too late. They have to learn about their children after they are gone.
Suicide rates are high in my community– heightened by the stress of spending every day of your life misinterpreted and misunderstood, thinking you are alone in the world or a mistake. We’re reprimanded for stimming and echolalia- two things I can honestly say have helped me every day of my life.
Stimming can be soothing, the rhythm of rocking can provide a silent cadence that gives my thought process when word-finding a kind of momentum and echolalia is strongly tied to my emotions and memory. It helps me almost download and recover information as I hear or recall it.
For me, none of these traits are the problems non-autistics think they are- they’re just different.
If you are looking for a positive direction to turn to, there are quite a few resources. Of course, NeuroClastic is one such source, with hundreds of Autistic contributors from all around the world.
You can also check out this list for other great Autistic-led and ally-supported organizations:
I understand that as an autistic person, I may be more aware of the different resources and communities created by, for, and with people like me in mind. Until that awareness is more universal, our children are at risk that only the Autistic community can see.