The charity Autism Speaks and the therapy known as Applied Behavioral Analysis (“ABA”) are both hotly debated and contested in certain circles, and with that comes conversation that many have become accustomed to on the Internet; emotionally charged, and it times with a lack of charity. However with the “Autism Speaks” walk occurring tomorrow and a counter-protest planned, the time has come for me to discuss both topics, with one being much more complex and complicated than the other.
Autism Speaks was founded in 2005 by Bob and Suzanne Wright, after their grandson was diagnosed as autistic. The charity currently conducts research, awareness, and outreach activities – which are aimed at families and governments. Several advocates have pointed out that those activities aren’t exactly the most helpful; precious little of the funding ends up going to autistic families, and the general message seems to be that we’re a burden and that we need to “fit in”. The latter is displayed with the “puzzle piece”, where they promote the idea that we need to “fit in” the neurotypical paradigm. What is left unsaid of course is what happens when that piece doesn’t fit, of course.
Autism Speaks has come under fire over the years, in large part due to the burgeoning Autism Rights Movement and neurodiversity advocates. There are several complaints that are held, with one being that advocates largely view autism not as a disease that needs to be cured, but as a neurological difference. The idea that autism needs to be “cured” was on their mission statement for eleven years, being removed in 2016. Although the word “cure” was removed, many believe the “cure culture” mindset remains, in part due to Autism Speaks funding a genome project to identify the genetic cause of autism. The concern for this is an ethical one; autistic advocates see what is happening with unborn Down Syndrome children (https://www.cbsnews.com/news/down-syndrome-iceland/) and are worried that the same will happen to unborn autistics. To many it is viewed as a form of erasure, and to fully erase the autistic mind one need to erase the person, with all the ethical implications therein. If this sounds like eugenics, well, it is – which is why it should come as no surprise that several autistic advocates consider Autism Speaks a hate group.
Another complaint (which, compared to the previous ones, seems very small) is that despite being an autism charity, there are almost no actually autistic members on their leadership team. Members of said leadership team make over 400k a year, money that is unfathomable to some autistics who struggle to make ends meet or find work. Or. In several cases, lack the ability to pay for assistance. In 20916, the year they removed the word “cure” from their mission statement, Autism Speaks spent 2.3 million dollars on their officers, directors, and “key employees”.
Getting back to the topic of erasure for a moment, that brings us to a much more complicated topic; ABA. Considered the “gold standard” for “treating autism”. First proposed by a few people, the name that the Autistic Rights Movement focuses on is Ole Ivar Lovaas. Lovass was quoted saying “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person”. Lovaas insisted that to “rebuild a person”, forty hours a week was required. The goal was to make autistic kids be more like “typically-developing children”. This is done through a punishment/reward system, which in more extreme cases included things like shock therapy. You probably would like to think in 2022 we’ve evolved from doing such things, but we haven’t; there is a center in the USA still does shock therapy, and even went to court to keep doing it (https://www.nytimes.com/2021/07/15/us/electric-shock-school.html). This is an extreme situation, obviously, but there’s no denying that other places do focus on the punitive. There’s an additional issue with Lovaas, a rather large one; his involvement in the “Femine Boy Project” (http://www.cnn.com/2011/US/06/07/sissy.boy.experiment/index.html). If this sounds like the kind of conversion therapy that is directed towards LGBTQ+ individuals, you would be correct. The goal there was to also build a “typical child”, this time one with a “typical” sexual orientation. Again, “erasure” at work. This opinion piece covers more on this topic (https://nsadvocate.org/2018/07/11/treating-autism-as-a-problem-the-connection-between-gay-conversion-therapy-and-aba/)
Several adult autistics have spoken out against ABA, saying that it was abusive. There are also ethical concerns with the therapy, with ample literature and research available about that (https://autisticadvocacy.org/wp-content/uploads/2021/12/ACWP-Ethics-of-Intervention.pdf).
I mentioned complications surrounding ABA earlier, which Spectrum News did a deep dive on a few years ago (https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/). One is that there are several people who swear by the therapy, who say that it changed their lives (please note it is incredibly rare for an adult to receive ABA) and/or their kids lives for the better, such as the autistics involved were not capable of taking care of themselves or harmed themselves and/or others, and the therapy assisted with remediating those. Another is a frustrating question; what even is ABA these days? Therapists have taken to doing a “holistic” approach, borrowing from other disciplines like occupational therapy, CBT, REBT and others to assist their clients. It blurs the lines extensively, with some professionals being ABA in name only so their clients can receive “ABA funding”. And funding itself is a big issue; several parents have had to fight just to get that funding, and are scared they will lose it.
Because autism exists on a spectrum, and because there is often multiple disabilities in play with autistics (myself being an example of this), it makes it difficult to hold certain conversations. Myself and other self-advocates can occasionally have the outward appearance of being “normal”, until we don’t. Just yesterday I have a talk on the Beatitudes in front of several kids, and apparently it was very noticeable my eyes were being erratic. The other day someone asked me about the scabs on my forehead. People notice the tuft on my head and make a comment, not realizing that the tuft actually acts as a stimming tool of sorts. Our opinions are often dismissed by those who have children (it’s almost always children) who have more outward traits and are having a lot of trouble. It’s the voices on these parents who are often the loudest, and at times they intentionally dismiss us or try to exclude us from the conversation.
What may be surprising to some is I don’t judge those who enroll their kids in ABA. Like I said, several therapists are ABA in name only. And, generally speaking, parents want to do what’s right for their kids. There are some parents who have done extraordinary work for their kids, and they deserve all the respect and applause in the world. But conversations must be had about this, and we shouldn’t be excluded. We shouldn’t be made to seem like our opinions don’t matter because we fall under a different portion of the spectrum, or because we appear to be a bit more “functional”.
The counter-protest tomorrow, in my opinion, is a reasonable one. Autism Speaks alone is sufficient reason to hold a counter-protest. The group does not represent us, and actively harms us. We don’t need to “fit in”, we’re not some mysterious puzzle piece.
We need acceptance, kindness, and understanding. Some of us have needs, which ideally would be covered by funding.
And, ideally, therapy that hasn’t caused trauma to autistics would be available.
If you wish to learn more about autism and Autism Rights, feel free to strike up a conversation with me. You can also visit reputable organizations to learn more. ASAN (https://autisticadvocacy.org) is an excellent advocacy organization., with https://neuroclastic.com/ being another.