Autism is inborn neurology, not a condition that can be caused, “treated,” or cured—not in children, nor in adults. Even so, well-intentioned but misguided researchers as well as blatant hucksters are constantly serving up stigmatizing procedures and “treatments” for autism, like the “happy drug” baluvaptin, the dementia drug memantine, the anti-seizure medication lamotrigine, the veterinary anti-parasitic Ivermectin, and fecal transplants. None of these approaches help autistic people themselves, and all of them divert attention and resources from desperately needed investments in autistic quality of life. We spoke with autistic advocate and autism pseudoscience watchdog Anne Borden King, about the overall harm done by misdirected autism efforts, as well as specific recent examples: Autism diagnosis hair tests, and Tylenol autism causation lawsuits.
Thinking Person’s Guide to Autism (TPGA) Thank you so much for talking with us. We have both been tracking autism pseudoscience issues for a long time. But it looks like, recently, many of the fires we thought we’d successfully battled were in reality simmering underground, and are now raging again.
It’s just so astounding to see things like autism hair strands tests based on metal content making headlines again; it is so close to the debunked “heavy metals cause autism” campaigns of 10-15 years ago. We are also seeing “acetaminophen can cause autism” lawsuit ad campaigns. It’s another explosion of fear and misinformation-mongering about autism after I thought we’d beaten that back! This new wave of autism pseudoscience and fear-mongering is mirroring the rise of misinformation in the political arena in many ways.
Anne Borden King: Yes. I hope I don’t info dump too much. I’m writing a book [on this topic] so I can go off on just about any area of autism pseudoscience.
TPGA: Oh, you are in the right arena for info dumping—we love a good info dump here! But before we start, can you tell our readers about yourself?
ABK: I am an autistic advocate, and a journalist and podcaster from Toronto, Ontario. I’m writing a book called The Children Do Not Consent: The Search for an Autism Cure, and the Kids Who Pay the Cost.
TPGA: Where can people find you online?
Anne: First of all, I’m autistic and I’m a co-founder of Autistics for Autistics, which is Canada’s autistic-led advocacy organization. The website for that is A4Aontario.com. I’m also on Spoutible and Post as @abking, and I have my own website, noncompliantpodcast.com. I’m not on Twitter anymore, nor Facebook.
TPGA: Can you tell us how you came to be interested and engaged in advocacy about autism pseudoscience and cure misinformation?
ABK: When my son was about four or five years old, my son and I were in a playgroup. One of the other kids was sick: He was feeling very nauseous, and he would have to go to the bathroom a lot. [One time when] he was running to the bathroom, I said to the kid’s dad, “Is he okay?
The dad said, “Oh, yes, he’s okay. He gets diarrhea from the B12 shots that we give him to stop his methylation…” or to start it, I don’t even know what they were trying to do with the methylation! I thought that was really weird because he said it in such a nonchalant way, as if “Well, of course, he’s going to have diarrhea.” Meanwhile, this kid is really uncomfortable.
TPGA: Was the kid autistic?
ABK: Yes, he was autistic. Next we went and had a play date at the house of the kid. The mom opened up the kitchen cupboard, and it was just full of supplements and injections, and all these things that they were trying to give to this kid to cure his autism.
That was where I was like, “Wow, what’s going on?” (This was around 2014, before I was involved in autistic self-advocacy.) I started Googling because I thought, well, maybe some of the autism organizations are talking about this; I could give the parents some good links about why their approach doesn’t seem healthy.
Then I found out that the autism organizations at that time—especially Autism Canada and Autism Speaks—were actually promoting this stuff as resources for parents on their websites! There was no authority in the autism organizations taking it on, at all. I then started to become aware of autistic self-advocacy groups like the Autistic Self Advocacy Network, however they had their hands full with other projects and they really were not taking on the cause of autism pseudoscience.
I realized, “well, somebody has to take the project on. Is there anybody out there?” The one person that I found was Emma Dalmayne in the UK. She was the first person I connected with. She’s a mom and she was working at the time with the Westminster Commission on Autism, a parliamentary committee. They wrote an excellent report about this called A Spectrum of Harmful Interventions. It was about autism pseudoscience. Damian Milton, and some other autistic people, were advising the government on that publication.
That was when I realized, wow, in England, they’re just ahead of the US and Canada in terms of actually addressing and naming this problem.
Then [in 2017] I was in the process of co-founding Autistics for Autistics, because another thing missing in Canada was a vibrant autistic-led advocacy group, and we needed one. We’re way behind the US—meaning five or six years behind the US, but in neurodivergent time, that’s eons. A group of us co-founded Autistics for Autistics. We focus on housing, education, healthcare access, communication rights, and employment.
Concurrently with that, I started The Campaign Against Phony Autism Cures. I had a couple of high-profile cases. With one, I filed a complaint against a doctor who was doing chelation on autistic kids, tried to get regulation around that. And I ran into the typical barriers, namely ignorance, not just from parents, but ignorance from regulators, ignorance from people in law enforcement and in a social work capacity.
After I started that group, I got a call from a Public Guardian of a province who asked me “Can you explain autism pseudoscience? We got a couple of calls from people who are worried about their family members,” because it was being reported to them and they needed information to share. I realized it was just a wild west: There really isn’t a way that anyone is tracking or controlling the autism pseudoscience problem. That was when I decided I should write a book. I realized we need to distill this all in one place, talk about why it’s seen as acceptable to do this to children.
Of course, I wanted to put the word “consent” into the book title because I think consent is one of the primary issues that faces autistic children. [Because] they often don’t have the opportunity—or they’re not given the right—to say no, they’re not seen as people. They’re seen as objects instead of subjects. We need to change that. Then it really dovetails very well with the neurodiversity movement and the autistic-led advocacy at the same time. We need to realize we can’t really do autistic advocacy if we aren’t talking about kids. We have to talk about kids. That’s integral to Autistics for Autistics’ mission.
TPGA: That’s fascinating. The timing of what you describe is interesting because there was pushback in the United States as well, that’s actually why we founded Thinking Person’s Guide to Autism in 2010, to push back against the “both sides” about autism pseudoscience in the media. There was also Left Brain, Right Brain pushing back against the misinformation even earlier than we were. And it was just like howling in the wind because, as you said you started in 2012, 2013, when nobody would listen to anybody about this stuff—at least, not until the Disneyland measles outbreak in 2015.
ABK: Yes.
TPGA: It’s just so frustrating that, like you said, you couldn’t find this information when there were outlets screaming about it, but nobody took any of the voices seriously, not in a mainstream way. I would say that one person who did was Steve Silberman, the author of NeuroTribes, but that didn’t come out until 2015, after you had already identified and started addressing these issues.
Getting back to around 2015, we, at least in the United States, saw the tide turning at least a little bit and started seeing more autistic voices being taken seriously. We started seeing autistic journalists like Eric Garcia, Sara Luterman, and Zach Budryk becoming more prominent around the same time. Sara started the autistic-led journalism site NOS Magazine, in 2015.
From your Canadian perspective did you ever see that same waning of the pseudoscience and an emerging recognition that autistic issues and concerns for all autistic people as well as children were being taken seriously, in the way that we were starting to see it in the United States?
ABK: The short answer is no. I can elaborate a bit with a very frustrating experience from 2018 to 2020. There is an MD in Ontario who is doing chelation. Now, doctors who do off-label chelation tend to do it for a whole bunch of conditions. So in his office, there are all these chairs. There are people being chelated for fatigue. There are people being chelated for this, people being chelated for that. There are also autistic kids getting chelation. None of this is evidence-based.
This same doctor wrote a single case study on an autistic kid, which was based on anti-vaccine beliefs. This was in 2018, before COVID, when almost nobody in Canada cared much if someone had anti-vaccine beliefs, not even the health regulating college. (If the doctor is doing something, you file a complaint with their professional association which is called the health regulating college.) I complained to his regulating college, the College of Physicians and Surgeons of Ontario. I said, “This guy published this white paper, single-case study, claiming that kids are damaged by their vaccines and that chelation can heal them.”
TPGA: Yes?
ABK: The regulating college’s treatment of this case was, in my view, so abhorrently irresponsible. They refused to look at the doctor’s records, to see who he has seen and what he was writing down, even though this is normally what they do for a complaint. They also wouldn’t look at any of the information I sent them: Statements from the FDA, UK regulators, professional associations of toxicologists, news stories about autistic children harmed by chelation—including one boy who died. Research reviews finding no evidence of benefit.
I provided all of this verification that chelation does not treat autism. But because I had provided it as hyperlinks in my electronically-submitted complaint—and electronic submissions were completely allowed, by the way—they said it was too much work for them to click on hyperlinks. They called it “onerous.” Because I didn’t print and mail them, they said they didn’t have to read one single citation that I had sent.
TPGA: What?
ABK: I had summarized all of it. They didn’t take the summary seriously because they wouldn’t look at the citations. That was their bullsh*t excuse for saying they didn’t have to do anything about this case. They rejected to even do a review. No review and they rejected it.
Then I appealed it. I talked to some friends about it, including Timothy Caulfield, who is a science communicator here in Canada. Caulfield shared about it and our national newspaper, the Globe and Mail wrote about it, and the Canadian Broadcast Corporation [CBC News] also interviewed me about it.
We did the appeal, myself and my lawyer, the esteemed health law lawyer Stephen Aylward, to the provincial government board. The appeal was likewise rejected! Again they said the investigators at CPSO were not obliged to read the evidence in the complaint, nor request records!
Then we said, “We want to take it to the Superior Court of Ontario.” And we did. (This was happening in 2020 and 2021, when I was having cancer treatments.) It was an online hearing. Stephen Aylward—who was working pro bono, by the way—created an amazing set of briefs, completely laid out an unassailable argument, outlining many things including the antivaccine connection. But the sheer strength of… indifference, I can think of no other word for it…prevailed.
So once again the court ruled that the regulating college had no duty to investigate. And that was the end of the line for appeals. And now think: I had a lot of support. A top lawyer, national media coverage, support of the medical and science communication community, support, 100 percent, from the data. And still it didn’t matter.
TPGA: Oh, wow.
ABK: It was also interesting because at that time the regulating college was going after other antivax doctors…because it was the COVID pandemic! They cared about it when it was about COVID, but they didn’t care about it when it was autistic kids—and I think that’s really telling, because that’s how so many people in our society look at autistic kids.
They just don’t think it’s important. The health and safety of autistic kids is just not important to them, so that was very frustrating.
And there were a few other cases. I did manage to go to Health Canada and get a device banned in Canada, an ADHD-related device that the sellers said should be glued to the back of the kid’s neck and if you can imagine, delivers beeping sounds in their ear. I got Health Canada to ban that with just a simple letter. But what I find so often… I’ll harken back to this call that I got from this Provincial Public Guardian. This Public Guardian was hearing from someone whose parents were doing bleach on his sibling, and they—
TPGA: They were doing WHAT?
ABK: Bleach, like MMS. Feeding bleach to their child to try to cure autism.
TPGA: Oh, hell. Okay.
ABK: The parents were using bleach as an “autism cure,” and the Guardian’s office asked me, “How do we tell the family doctor that this is bad?” Because the family doctor wasn’t getting it, just didn’t understand…and so I’m sitting up at night—in this room where I’m sitting watching the snow fall right now—I’m sitting up at 11 or 12 o’clock at night, writing a brief. This is what we all do, right? It was like 30 pages long. I did like an encyclopedia of every fake autism cure and every debunk and it was just full of citations and I sent it over and they’re like, “Thank you so much. This is so helpful.”
But I couldn’t help but thinking to myself, and I’m sure you’ve thought it, and I’m sure Emma thought it over in the UK: Why are we the ones doing this? These people who are authorities, they’re reaching out to grassroots advocates to provide them with information. The government has not devoted resources to it. They’re not really figuring it out and they can’t figure it out because in our society it is a new concept to think of autistic kids as people with rights. That’s the missing piece for them.
TPGA: It’s so infuriating. And I agree that the government tends to not care about pseudoscience when it hurts autistic kids, like how the United States ignored the menace of autism anti-vaxxers—until it was clear that anti-vaxxer sentiments led to the 2015 Disneyland measles outbreak, and that affected the general public. Then they government realized, “Oh, maybe all these people who are convincing people not to vaccinate their kids because they’re so afraid of autism; maybe that’s a bad thing.”
And when the turnaround came, it wasn’t about the rights of the autistic kids at all. And in fact, a lot of people spoke out about it—including me, in Gizmodo. Because people started saying things like, “Science shows that vaccines don’t cause autism,” which was infuriating because that is saying “don’t worry, your kid won’t turn out autistic,” like my son. But that approach is still fear-mongering about autism, and throwing autistic people under the bus!
Yes, I want people to get vaccinated. I want them to base their decisions about their own health and the health of their loved on valid information, not misinformation, so the ableism that was still rife in the coverage of the measles resurgence was horrible.
And we see that misinformation and ableism about autistic people has not gone away. The two recent stories that have been most frustrating to me are, first, nonsense hair tests for autism, with private equity-backed companies claiming they can diagnose autism using a strand of hair. And then second, we have bogus class action lawsuit recruitment campaigns all over the internet, with sites like Tylenol-Settlement-Dot-Com claiming acetaminophen use by pregnant mothers causes autism in their babies. I was wondering if you’d be willing to talk about those two?
ABK: Yes. I did some interesting research into both of them.
I would just add on the ableism front that there’s an element of neglect…that disabled people get neglected in policy and regulation and [the bleach “treatment”] MMS is the perfect example of that, because for five years or more, advocates in the US and in the UK were trying to bring attention to the issue, and get regulators to crack down.
In the US, advocates were working and in contact with the FDA about MMS and trying to get materials together to go after the Genesis II Church, which sells bleach as an autism cure. Arrests never quite happened—but then when the pandemic hit and these same people were selling MMS as a COVID cure, regulators and law enforcement were empowered and given the capacity to spring into action, and now the Genesis II leaders are in jail in Florida. They’re going to court this summer; they had all of their materials seized and everything.
This was a really happy moment when we saw that they were coming in with the co-ordinated operation to go after Genesis II, but it was bittersweet because it took a pandemic to get Genesis II taken down. When MMS was just being done to some vulnerable disabled people, the resources to go after them weren’t made available.
I have some notes about both the hair analysis and the Tylenol suit as well, if you want me to talk about that.
TPGA: Yes. Please tell us what you found.
ABK: I’m always looking into these kinds of lawsuits. The first thing I look at is the relationships: Who’s trying to make a buck here, who’s related to which company, who wants to license the product, or who wants to be involved in a lawsuit. These usually reveal themselves through a little Googling around. The example of stem cells as an autism “treatment” is a really good example. The playbook for both the things that we’re talking about is the same, and it’s the same as they used for stem cells. It’s a playbook that they all use.
What they doing is leverage some credible science to boost their IN-credible and impossible claims. Like with stem cells, everybody sees so much hype about stem cells, and people are so excited about: “It could be a miracle for cancer. It could be so helpful for this, so helpful for that.” Everyone’s vaguely aware that stem cells are great, and then the scammer comes in and goes, “Oh, and they’re also great for autism.”
They just glom onto the existing hype around an idea or a product, and then they run with it and that, I think, is what happened with the Tylenol case. There have been legitimate papers about various relative risks with regard to Tylenol, like hepatoxicity (liver damage) and things like that. Talking about, how often can someone safely take this? Much as with any other medication, right?
TPGA: Sure.
ABK: For the Tylenol case, I looked at the Consensus Statement that came out in Nature Review Endocrinology in September 2021, because the consensus statement is probably going to be part of the class action, and used in court. It calls for caution on Tylenol use in pregnancy without making any clear statement or showing any proof that Tylenol can cause ADHD or autism.
In the statement they committed a few errors; I’d say ethical mistakes. The first thing they did in this consensus paper was they created a false endorsement of their belief by the American College of Obstetricians and Gynecologists [ACOG]. ACOG wrote about how fracking can cause health issues. What the people that wrote this consensus statement did was they took something that has truth in it—the ACOG paper—and they start with the truth to establish this credibility. Then they make their misleading claim. They wrote:
“An opinion statement by the American College of Obstetricians and Gynecologists suggests that gynecologists should see patients for exposure to environmental chemicals before and during pregnancy and counsel on how to minimize risk. This statement is consistent with our recommendations.”
But I went and I looked at the statement by the American College of Obstetricians and Gynecologists. It’s talking about living near a fracking site or a power plant, and has nothing to do with pharmaceuticals. And even more interesting is that, after the position paper on Tylenol came out, there was a rebuttal letter to it, signed by the American College of Obstetricians and Gynecologists!
And ACOG was a co-signer with 16 organizations and 63 individual researchers and clinicians, all who objected to that position statement on Tylenol. ACOG is actively opposing this paper, meanwhile the paper authors are claiming to be supported by ACOG!
The other interesting red flag that I came up with was the expert witness factor. One of the first things that I’ll always do is Google the names of the authors of a white paper or a statement like this. So I Googled one author on this Tylenol statement [with the query], “Shanna H. Swan plus expert witness”. And it turns out that Shanna H. Swan has been an expert witness for decades, in at least 50 cases against pharma and chemical companies—and she’s one of the authors of the consensus statement. (An expert witness is a doctor or other professional who gets paid by someone who’s suing a company to prove that harm was done by the company.)
It wouldn’t surprise me if Shanna Swan or other authors of these papers show up as expert witnesses in this class action.
A similar example is what happened with Andrew Wakefield. He wrote a paper claiming a link between vaccines and autism. Then he got it published in The Lancet. And then we find out Wakefield had been given $100,000 by a personal injury lawyer who was representing the families of five of the kids in Wakefield’s paper in a court claim. And of course, we know what happened to Wakefield’s paper, that it was finally retracted by The Lancet. They saw there were conflicts of interest. They saw that it was, in their words, “deliberate fraud,” and that Wakefield’s team “falsified facts” and were found guilty of ethics violations.
So if someone writes a paper like that, then they [the expert witness] show up in court at the trial and wave the paper around, “look at this research,” then the person filing the lawsuit will pay them a lot of money, and then [that expert witness] can go and build a wine cellar or whatever they want to do with that money.
Then you start to look at the research and you think, “well, if there are people involved who have an interest in leading people towards a conclusion—without any real scientific basis, by the way—then what’s the value of that?” I Googled some of the other authors too and one of them is claiming that 5G, Wi-Fi can be harmful to pregnant people. You can see this is a crowd. It’s a certain type of crowd.
TPGA: They’ve got their comfy racket.
ABK: Yes, exactly. Those were the big red flags that popped up for me, this conflict of interest. Then interestingly, they don’t state their conflicts of interest anywhere in the statement either, so we don’t even know what some of these other people are involved with that may be a conflict, but it’s really clear that there’s money to be made through these class actions.
Then there are the issues raised by the rebuttal letter, which says it can cause harm to say that Tylenol might cause ADHD and autism. That doing nothing might at first appear to minimize the risk of harm, but actually inadequate treatment of pain or fever during pregnancy can be detrimental to the parent and developing child. Pain itself can have disruptive endocrine consequences, deleterious psychological effects that could have a fetal effect. Immobility can lead to life threatening circulation issues in a pregnant person. There are many different risks that can happen if somebody doesn’t take Tylenol in certain circumstances.
I think what the rebuttal letter is pointing out is that scaring people about using Tylenol can actually cause harm. Even by publishing the work and doing the lawsuit, they’re creating a bit of a public panic about it that can actually end up causing harm to unborn children.
TPGA: We were both looking at papers before this interview that claim a possible link between autism and acetaminophen in unborn children. [A that claim does not hold up to scrutiny.] The thing is, we know that at this point that so many mothers of autistic children are themselves autistic, but undiagnosed, and that autistic children are often born to autistic parents. We also know that autistic people tend to have a higher rate of co-occurring conditions, often pain-related, like Ehlers-Danlos or chronic migraines, which could mean those undiagnosed autistic mothers needed more pain treatments like Tylenol than non-autistic parents of non-autistic kids. But These studies don’t even take those factors into consideration.
When we see a higher percentage of autistic kids born to mothers who used Tylenol during pregnancy, that should be the starting point for research, not the end point.
ABK: Absolutely. The parents in the papers reported “poor behaviour.” Well, what is poor behavior? There are not any real tests; It’s based on observable characteristics. But what does it mean? It’s just self-reported. It’s just weird, right?
TPGA: Yes. Absolutely agreed. It’s just so frustrating. Oh, God. I’m just tired.
[laughter]
TPGA: I’m now realizing that it’ll be 13 years in June that we’ve been pushing back against misinformation at Thinking Person’s Guide to Autism. We were founded specifically to push back against anti-vaxxer misinformation, but soon realized that we had to incorporate more autistic advocacy—basically was the two-pronged approach that you described doing as well. I feel a little bit guilty. Are we spreading our focus too thinly? [laughs] Have we not been paying enough attention to the resurgence of misinformation? It’s just so infuriating to see this kind of stuff reemerge when I thought that that kind of nonsense had been rejected.
I went to the International Meeting for Autism Research, INSAR, every year since 2011, though I have not gone since the pandemic started. The first few years I went to INSAR, the proceedings were absolutely rife with mercury and vaccine causation papers. Yet by about 2016, the vaccine causation research had completely died out.
I guess I used INSAR as my benchmark, so to see this misinformation sprouting up again , it just makes me so angry. Especially because there’s a new cohort of autistic kids diagnosed every year, which means more and more parents looking for good autism information and guidance. This new misinformation just makes me so tired. [laughs] I’m so grateful to you for keeping the fires burning and keeping the attack going just in general and also with your forthcoming book. Thank you for the work that you’re doing.
ABK: There are a lot of important things to work on and autistic children’s rights can get pushed to the bottom a lot of times. It gets pushed to bottom by policymakers, it gets pushed to the bottom by regulators, it gets pushed to the bottom by social workers. You’ve always kept it up at the top and that’s really, really important.
I think that another thing that’s happening right now, why [pseudoscience] is resurging is because we’re living in this pandemic time where people have become really interested again in this concept of the toxic world, right?
TPGA: Yes.
ABK: Let’s face it. There’s a lot of toxicity around us, too, because we have climate change and other things happening. In some ways, we do live in a toxic world, but that doesn’t mean that autistic or ADHD kids are toxified zombies in this big pharma apocalypse or however people want to present it. First of all, autism and ADHD are modern inventions. They’re just a way to describe ways of being that have always existed and disabilities that have always existed, but it’s seen as this epidemic and this “new” thing and they talk about autistic kids as being “toxified.”
It does nothing but stigmatize kids. You know that if you were raised by your parents to be thought of as almost this toxic byproduct with toxins leeching out of your hair, think of the impact and the trauma that that’s going to have on kids.
I did a little research as well into the hair analysis for diagnosing autism if you want to hear about it.
TPGA: I do.
ABK: The first thing I did with hair analysis was, again, I looked at the relationships. LinusBio is the ones doing hair analysis. And as it happens, LinusBios is working with a company called Novozymes, which makes a probiotic called SmartGuard, which they claim can detoxify the body of the heavy metals.
Because LinusBio is working with the Novozymes, obviously what’s going to happen is they’re trying to reach for a licensable product. Maybe it won’t be chelation. Maybe it’ll be these probiotics, which are maybe more lucrative because you can just sell bottles of them on Amazon. It’s very simple.
One of the quotes LinusBio quotes that jumped out for me was, “We’re not just saying this is a diagnostic tool. This is something that will help deliver therapy over time and chart the patient journey towards the healthier future.” What they’re saying is they’re tying right in with this licensable product, these probiotics, as well as the lab fees for continually assessing the hair. You’ve got a few different revenue streams happening.
TPGA: It’s so mercenary! And this stuff dovetails with some other lines of inquiry that you’ve been taking on, like how these companies are backed by private equity. That’s why there’s so much funding for these pseudoscience diagnostic tests for autism. Private equity sees autism as this cash cow that, like you were saying with the probiotics, provides indefinite revenue streams. What is your take on private equity with regards to autism?
ABK: I think it’s all being driven by greed. There’s no altruism behind it. They can tell themselves whatever story they want to tell themselves, but no one’s doing this for altruistic reasons. They’re doing this to develop a licensable product. That’s the whole reason that they’re doing it. They’re the big part of the problem, but the other part of the problem is regulators.
The FDA, first of all, is busy, but they also can fall victim to autism mystification. They need to be educated about what autistic people need, what our bodies and our lives are worth, that autistic kids are not supposed to be lab rats. They’re either not quite grasping it or they don’t have the resources to grasp it and be really proactive to take it on and to say, “People’s human rights are being violated here.” There’s this sense, and this comes from groups like Autism Speaks and all the old stories that we get told about autism, that autism families just have it so bad that it’s okay to try anything. We both know how often that happens.
Then the broader implication of it is that these products are part of health disinformation. Of making legitimate science less powerful because it’s one sham after the next, and anything goes. That’s why we need regulators like the FDA to step in and say, “This is scientific and this is not,” and we don’t see that happening enough.
TPGA: Yes. With regards to the actual government regulators, I don’t know if you follow the Interagency Autism Coordinating Committee, that’s the National Institute of Health Science Advisory team in the United States. It’s only this past session that has had a significant cohort of actually autistic members, including autistic people of color, and autistic people who are non-speaking, and who have intellectual disability, autistic people with siblings who need one-to-one support needs. And it’s not that long ago that the IACC had members who were blatant anti-vaxxers.
Recently the IACC approved a new strategic plan, including a stated intention to move towards more neutral and less deficit-based language about autism. But there’s this whole cohort of really angry parents of high-support autistics who aren’t necessarily promoting pseudoscience—but are promoting significant ableism, and who responding to the IACC’s language shift by writing op-eds in any outlet that would have them, claiming that they had right to use demeaning terms to describe their children because they claim such ableist language is more “accurate.”
So it’s not surprising to me that regulators still don’t know who to listen to, with all these competing voices, because they’re not looking at who is invested in the welfare of autistic people themselves. Quality of autistic lives never seems to be the first priority or the first test for whether or not a specific avenue should be pursued. So because the regulatory bodies are not using the right benchmarks, they don’t know who to believe. They don’t know who they should listen to. And that’s why you see things like the FDA trying to ban disciplinary electric shocks on disabled residents at the Judge Rotenberg Center, and then seeing that ban fall through the cracks in Congress. The United Nations considers those shocks to be torture, so the matter should be pretty clear, you would think.
ABK: I wonder, too—and I’m not saying things are fantastic in England because they’re not—but what I do see in England and Scotland and Ireland for example is that there’s a longer history of autistic people being involved in policy consultation and there is less tension, there is less of this binary of the martyr parent versus the autistic person. They have their own problems with institutions and a lot of other problems, but one problem that they’re not facing the same way is this “severe autism,” concept and this binary between some parents and the neurodiversity movement. That aggression towards the neurodiversity movement isn’t the same over there.
I wonder if it’s because Autism Speaks isn’t over there, because here in Canada and in the US, Autism Speaks has controlled the narrative about autism. And their founder, we know, Bob Wright, he was a VP at NBC. He had access to all the affiliate television networks and media to build this story and the stories they built was of the martyr parents, and the children who were burdens. That’s the hardest thing that we have to unthink and it’s been reinforced over and over again through our media…and everybody sees it, not just parents. It also includes policymakers and regulators. That’s how many of them view autism.
TPGA: With regards to the UK, I actually was very fortunate to be invited to talk at a conference there in 2014. I had noticed some of the same thing that you’re saying: The conference included autistic people, and it focused on autistic welfare. I was shocked, because I had never seen anything like that in the United States. I asked people about it, and many seemed to think that besides the lack of Autism Speaks that a lot of it had to do with having a national healthcare program where the parents didn’t have to worry about how they were going to pay for their child’s autism support due to their socialized medicine system. But you are in Canada where medicine is socialized, yet you are seeing negativity, so maybe it is an Autism Speaks thing.
ABK: We have social healthcare here, but we still have problems. Maybe because the other thing we have in America and Canada that they don’t have in the UK is ABA therapy dominating everything.
The ABA mentality is that a child is just a composite of their behaviors, and that the ultimate goal is compliance. ABA is mandated everywhere here, just like it is down in the US. It’s publicly funded [in Canada], it’s insurance-funded [in the US]. It’s the same thing. They run the show and they have the same story. They have that same narrative that “we’ve got to get control of these uncontrollable kids.” Versus in the UK, they have a whole bunch of different ways that they do things, but they’re not being directed by ABA. That might be part of the ideology, too.
TPGA: I really appreciate this conversation. Is there anything else that you wanted to conclude with?
ABK: Maybe we could just take a couple of minutes to think about positivity. One thing that is very hopeful is the power of the neurodiversity movement. It feels like it’s all taking forever to achieve equality, but when you look at other rights movements and human history, actually, a lot of it’s really happening in fast motion.
There really is a lot more awareness [of neurodiversity]. I know here in Canada we’re [at Autistics for Autistics] suddenly being contacted by policymakers, where we never were before. Media too. You now have an autistic presence on the IACC and that all means that we’re at least at the table. As long as our community doesn’t forget about this issue, as long as we bring the concerns of kids to the table.
A great example is restraint and seclusion. The Alliance against Seclusion and Restraint has achieved incredible amounts in just a few years in terms of banning seclusion rooms in a lot of states. It seems because of the neurodiversity movement, policymakers are now open to looking at human rights and having less of a tolerance for these very overt abuses. The FDA did try to ban the device at the JRC, the GED.
The only reason any of these changes are happening in my opinion—and I’d like hear yours—is because of the neurodiversity movement.
TPGA: Oh yes. Just how the media take has evolved, at least in most mainstream US and UK publications, I don’t know if the same is true in Canada. If you’re going to write about autism, it’s increasingly rare to see an article that doesn’t actually feature an autistic voice or an autistic author when they’re doing first-person pieces. I am really great to see that and I’m so grateful with the journalism of people like Sara Luterman and Eric Garcia and Zack Foley, these autistic journalists who are just really doing wonderful, wonderful work.
So yes, I do have hope even though we still see ignorant or strategically oppositional people claim that the neurodiversity movement is only for people who don’t have any “problems” even though neurodiversity has always included people of all abilities, whether they have disabilities that are cognitive or speech-related, or developmental. It’s really great to see people who actually have the entire autistic communities interests advocating and writing stories and trying to change that narrative, and I include you, of course, in that group, so thank you for the work you’re doing.
ABK: I really feel like you were the first. It’s my perception that Thinking Person’s Guide to Autism was the first website that just collated so many different streams of the neurodiversity movement, to the point where if a parent meets another parent whose kid is newly diagnosed, your website will be the first thing: “Oh, go to Thinking Person’s Guide, because you can find the answer to anything, you can find a voice about anything.” You’re really the place where people can find, especially reader-friendly and basic information from so many different types of voices, so many different perspectives from autistic people and also from parents, and it’s important that you’re inclusive of parents.
I feel like your website has been driving a lot of the discussions around research and so many other topics that it’s amazing to have that there, is just a really dynamic resource that people can always turn to.
TPGA: We’re definitely standing on the shoulders of many giants in terms of the original autistics.com site and even the Autistic Self Advocacy Network and neurodiversity.com, which was a phenomenal site. I appreciate that you’re saying such kind things, you’re really trying and I just really wish we had the resources to pursue these things the way we’d like to.
ABK: We’ll keep on keeping on.
