Like seemingly every sphere of public life, discussions around the causes and consequences of autism are rife with fiction. It’s a mentality which arises from the “people have had enough of experts” school of thought. Critics of experts believe that should you even appear to deviate from your role as a neutral presenter of facts by stating an opinion, you are no longer an expert or cannot be trusted. This is the argument people like Andrew Wakefield make. Upon having his medical license revoked for saying that vaccines cause autism, he has made documentaries like Vaxxed and appeared on platforms like ‘Infowars’ to argue that the truth is being shrouded by a medical elite.
This of course ignores the fact that experts are human, and that it’s through those differences in view that the best ideas emerge. Scientists have long debated exactly what autism is and how its caused, and it’s still an emerging field of knowledge. In my lifetime, science has gone from believing that autism mainly effects males, to an acknowledgement that there is no gender difference. Does this mean scientists are not to be trusted? Well, while you should not necessarily always take researches at face value, this does not mean you should turn your back on the entire scientific community or reject learning. In this blog post we will be looking at 5 myths about autism, showing why disinformation matters.
Myth #5. ‘Dairy Products cause autism’
First of all, the terminology goes ‘‘is your child autistic?’, but minor grammatical gripes aside, this is an utterly egregious example of distortion based on little to no scientific fact. This is another tactic of linking two things which are unrelated. Peta are here playing off fears of parents planted by years of disinformation campaigns in order to sell veganism or secure donations.
If you follow the link on the advert, you get taken to a page where they site two scientific papers neither of which support the claim Peta are making. The first was published in 2002 and observed some possible improvement in autism symptoms when children were put on a diet free of proteins found in milk. Everything about the study is incredibly vague, offering the explanation that the change was due to “processes with opioid effect,” and using a sample group of just 20 children. The second study was published in 1995 and found no link between dairy products and autism, with Peta offering as evidence the fact that the study found antibodies to milk proteins in the blood of autistic children, which suggests nothing.
Of course, any person or organisation claiming to know what ‘causes autism’ should be treated with suspicion. We don’t yet know what causes autism. Perhaps the most infamous example of this are the ‘vaccines cause autism’ studies by Andrew Wakefield – the truth is that three of nine children in his 1998 stud did not receive a diagnosis. Only one child clearly had autism. In addition, five children had documented pre-existing developmental concerns. Despite that the study reported that all 12 children were “previously normal.”. These type of misinformation campaigns don’t need to be grounded in truth to be effective. They play to some parents desire to have a sense of control. You can’t control whether your child has autism or not but what can you control? their diet, whether they take vaccines. This might appear one of the least believable on this list, but its one of the most manipulative.
Myth #4. ‘Autism used to be rare, but now it’s common’
Tied in with the idea that you can find potential triggers for autism in the world around you is the idea that whereas autism was once rarely seen, its now everywhere. The implication being that people are being over diagnosed, or that some third factor like vaccines is causing more people to become autistic. The most common figure that gets chucked around by groups like Autism Speaks is that the prevalence of autism is now one in 68, whereas in 1970 it was one in 10,000.
In case the fact of the matter wasn’t obvious already, the increase in diagnoses of autism in recent decades has to do with the fact that a broad range of people are able to get diagnosed. I have written a whole blog post where I document how understanding of autism has progressed from being seen as a childhood condition with an association with schizophrenia to being seen as a common and varied spectrum. Prior to the 1980s there was no “autism spectrum” as a diagnostic category. The work of Leo Kanner, who mistakenly believed that autism was rare and discouraged diagnosis unless children precisely matched the core features he described, was embedded in the medical consensus at the time. This meant that parents through the 1980s often had to bring their child to multiple specialists before finally obtaining an autism diagnosis. Few working-class families, or families of colour received a diagnosis (this is still a problem), and girls were considered incapable of having autism.
Lorna Wing, among others, helped dispel these notions. Throughout her work spanning from the late 80s to the early 90s, she refined the idea of the ‘autistic continuum’ which posited that autism Is a lifelong condition and that the condition occurs on a spectrum. This model reflected the broad range of their patients. It proved that autism is not, as this misconception suggests, a tragic by-product of how the world has changed, but something to be understood.
Myth #3. ‘Autism can (and should) be cured’
I’ve talked about the idea before, but it’s worth reiterating that past attempts to cure autism bear no fruit and are a waste of money and time that could be spent providing extra support for autistic people, helping them people into secure employment, or creating resources to help increase understanding. Not only is the idea that you can cure autism not true, but I wouldn’t want it to be true. What we need is autism acceptance. Through their actions, the people applying these “cures” to their children are making a very loud statement, saying that they believe autistic people like myself are broken. Getting rid of autism becomes code for ‘getting rid of autistic people’. Its ableism in its most vile and pronounced.
Indeed, the world of fake autism cures is a lucrative business. The most recent example of this is Miracle Mineral Solution: a “supplement” being sold online to parents as a ‘cure’. In reality, the product, when used as instructed, generates chlorine dioxide i.e bleach. In 2015 more than 10,000 vials of the substance were seized at a production site in Cambridgeshire, with the product being sold through targeted advertising on social media. Facebook groups with thousands of members promote these miracle cures posting pictures of children with rashes and bleeding and presenting that as a sign that the solution is working! There are other such treatments including hyperbaric oxygen therapy involving treatment with oxygen in a pressurised chamber, as well as a series of fake vitamins, minerals and diet supplements. I detail these to show how dangerous misinformation about autism can be. Not only do fake facts poison peoples minds and social media feeds, but literally kill and hurt people.
Myth #2. ‘Autistic people lack emotion’
Media representations of autistic people tend to portray us as cold emotionless beings who are neither aware of our own feelings nor those of others. This is at best inaccurate, and at worst actively harmful towards autistic people. Indeed, one early article on Autism Spectrum Disorder (then Asperger syndrome) described the condition as “a plague of those unable to feel” referring to people on the spectrum as “cruel” and “heartless”. I’m acutely aware that these are the perceptions of autism that I was born into and that others perception of me, as well as my perception of myself, has changed as thinking on autism has progressed.
The truth is that autistic people are often highly concerned with their own feelings and that of others. I’ve detailed before how I’m quite emotionally sensitive but use ‘camouflaging’ as a way of masking that, because the world around us rarely appreciates outward displays of emotion. Likewise, when I’m around others I am highly concerned with their emotions. I might struggle to fully read signals or modify my behaviour to appear sympathetic, but it’s certainly not true that I’m cold or unfeeling. “neurotypicals” rely on social signals to broadcast their emotional states to one another. Autistic people often prefer to communicate in more overt and obvious ways, not necessarily as a way to make communicating easier but as a way of enabling us to better understand a person’s motives and intentions. The frankly quite hurtful idea that autistic people don’t understand emotion or can’t empathise has been used to perpetrate a number of cruel injustices, including the assertion by media figures like MSNBC’s Joe Scarborough that many mass murderers are on the spectrum. If you assume that autistic people are non-emotional beings you can then treat them as inhuman by performing dangerous pseudoscientific experiments aimed at ‘curing’ them or blaming acts of violence by actual sociopaths on autistic people. This might seem to be one of the most innocuous ideas based on how often its employed, but it’s often the precursor to far more harmful acts of violence against autistic individuals.
Its fair to say that both autistic and neurotypical people struggle to see the world for each other’s point of view, but in order for us to feel empathy with other people we need others to understand and feel empathy for us.
Myth #1. ‘We should aim to make autistic people normal’
I place this idea at no. 1 as it’s the one underpinning all the other concepts on this list: the idea that autism needs to be got rid of, ‘cured’, or else that autistic people should be made to be the same as everybody else. Of course, if this could be achieved then you would leave the fields of arts and science significantly worse off, as these are dominated by autistic individuals whose skill for detail and, yes, emotion enables them to excel in those fields. The message to autistic people here is clear: ‘you are a burden’.
Perhaps the most overt example of this idea being trialled is in the 1980s. psychologist Ole Ivar Lovaas claimed that his method of “Applied Behavioural Analysis” could be make autistic children “indistinguishable” from their peers by putting them through years of intensive behaviour modification. Lovass did not see autistic people as people “in the psychological sense”. He used this to justify an approach which often involved electric shocks and beating as types of what he called ‘aversives’. The method seeks to put autistic people in environments and situations that they are uncomfortable with. For example, if a child is uncomfortable with certain textures in food, part of the regime might involve force feeding them. For every openly autistic behaviour that is demonstrated, that comes with a ‘aversive’ or punishment. The method is still widely used today. Problem being, beyond the gross idea that you can simply teach someone not to be autistic, Lovaas exaggerated the success of his interventions. His former colleague Christine Lord acknowledged that his claims of prompting recovery “did not reflect what really happened and certainly cannot be used as scientific evidence”.
For an honest account and analysis of ABA and its lifelong effect, I recommend everyone read Julia Bascoms essay “Quiet Hands”. In it, she writes:“When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy”. Of course, elements of autism like stimming are not defects. As documented by numerous autism researchers including Lorna Wing and Barry Prizant, they are adaptive strategies to cope with a world that feels chaotic. The latter sums this up in a quote which I think underpins the point of this entire blog post: “The problem with interventions that focus on attempting to render a child indistinguishable from typical peers, is that they treat the person as a problem to be solved rather than an individual to be understood”.
An Atypical Perspective
I hope you realise that while these ideas and ones like them are gradually beginning to fade from relevance, they are still very dangerous. Although these ideas may on first look seem to possess varying degrees of extremity, in my opinion they come from a similar place in that they stem from different ends of a neuro-medical model of thinking about autism, that says that the wrongly believes that autism is the problem, not the conditions of society which oppress and stifle individuals on the spectrum. The focus here is on treating the condition as a malfunction, rather than making a systemic critique of the issues which ‘disable’ us. Admittedly, society is in a far better place with its attitude towards autism than it was in when I was born, and frankly while one hopes for a degree of longevity in their blog posts, I would like nothing better than for this one to be completely irrelevant one day. I’m a huge proponent of the idea that concepts have consequences, and nothing evidences that better than some of these. Yet positive concepts have results and through ideas like neurodiversity and the idea that autism can be just a difference, rather than a disability, we’ve made leaps and bounds in peoples understanding. If you’ve ever found yourself even mildly convinced by any of these, thank you for reading until the end, and I hope you look at autism differently now.