This is Part 2 of a two-part interview with Ettina Kitten. Ettina Kitten is a legal assistant, blogger, and mother-to-be from Canada. Ettina blogs at Abnormaldiversity on a variety of topics related to autism. Last week, Ettina shared her unique perspective as both a receiver and provider of autism therapy. This week she shared suggestions for how to find a therapist with an autism positive approach to therapy and challenges people to question their determination of “essential” life skills.
How can parents vet therapists to ensure they have an autism positive approach?
This is trickier for me to answer, since I haven’t had good luck in vetting therapists myself. The employment program I described above seemed good until they showed their terrible colors. I guess for children, one of the best things you can probably do to protect them is to sit in on therapy regularly and immediately intervene if you have any concerns. And if the therapist suggests that it’s OK or normal for their treatment to cause your child severe distress, leave immediately, although that’s probably too late to avoid the therapy causing some harm.
Besides that, some warning signs:
If they use puzzle symbols for autism, it’s a sign that they either don’t know or don’t care that those symbols have a bad association for many autistic people, which often means they haven’t learned much from the perspectives of actually autistic people.
If they claim that they can cure autism, provide overly certain predictions of outcomes (for the vast majority of autistic children under age 5, no competent and honest therapist should be offering predictions on what kind of living arrangements will be appropriate for them in adulthood), or talk about early intervention in a way that implies even a few months of waiting could make a big difference, they’re a snake oil salesman.
A good test could be to ask them about other disabilities besides autism that could be helped by their therapy. At an autism conference, I saw an ABA salesman lose the trust of a large chunk of his audience instantly by claiming ABA could cure FASD, because the awareness campaigns for FASD have done a much better job of emphasizing that those children have unchangeable neurological differences.
If they claim that there’s no or only one effective treatment for autism, that’s a lie. There’s a ton of different therapies that have been shown to be effective (by varying standards of effectiveness). If they focus more on testimonials than on actual statistics, that’s another warning sign. It’s easy to get glowing testimonials for autism treatments, because a lot of people don’t realize that around 10% of autistic kids spontaneously improve dramatically regardless of what treatment they receive. Here’s a citation for that:
https://www.publications.aap.org/pediatrics/article-abstract/129/5/e1112/73789/Six-Developmental-Trajectories-Characterize?redirectedFrom=fulltext
If they claim that “toxins” or vaccines cause autism, or talk about avoiding “chemicals,” they’re a quack.
Also ask about negative side effects. If they claim that their treatment has no side effects, be skeptical, especially if it’s a biomedical treatment. If they claim it’s safe because it’s “all natural,” remember that plenty of all natural substances can be extremely hazardous to humans, like hemlock and cobra venom. Something being natural means absolutely nothing about whether or not it’s safe. Dietary restrictions are another example of potentially hazardous treatment a lot of people think is safe – the combination of picky eating plus trying to avoid very common food ingredients can easily result in a nutritionally unbalanced diet, and depending on how you go about dietary restrictions, they can also increase susceptibility to eating disorders.
In one of your blog posts, you mention, “If there’s one thing disability rights advocates have taught me, it’s that it’s possible to live a good life while lacking a lot of “essential” skills. So, if it comes down to struggling at the cost of mental health or learning to live without a skill that would be very useful, even the most essential skills are ultimately optional.” Can you give some examples of “essential” skills that are ultimately optional? Have you experienced this kind of forceful training yourself, or have you seen it in the professionals around you (or both)?
Well, walking, using a toilet independently, and being able to speak come to mind. I’ve known successful adults who lack each of those skills – a famous example would be Steven Hawking.
On a personal level, a ton of things that people expect children to be able to do but rarely demand from adults unless they’re being infantilized, like eating whatever someone else chooses for them to eat, waiting for permission to go to the bathroom, or wearing undergarments dictated by someone else. Generally, in most contexts of adult life, you have a lot more freedom to make choices for yourself, and that means you don’t really need to follow rules that children and more marginalized adults are expected to follow.
Reading and writing are also examples. It’s extremely useful to be able to read and write, but I’ve known successful university students who couldn’t do one or both of those things. Instead, they used electronic equipment to translate between speech and text, such as speech recognition and screen readers.
Can you tell me a little about your blog? Why did you start it, and what do you hope readers gain from it?
According to my very first post, I started my blog because I wanted to comment on another blog that only allowed people with an account to comment, and figured if I’d made it anyway, I may as well use it.
I use it mostly as a place to post my thoughts on subjects important to me, in the hopes that I can convince other people to see things from my perspective. I share information I find useful and interesting as well as arguments on things that are morally important to me, with the hope that people will learn from me as I continue to learn from others. I also use my blog for myself, as an outlet for stuff I feel the need to say.