This is Part 1 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. This week she shared her unique perspective as both a receiver and provider of autism therapy.
Can you tell me a little about yourself? What made you pursue an autism diagnosis (or how did you realize you were Autistic)?
I’m 32, Canadian, working for my mom’s law firm as a legal assistant, and pregnant with my first child as a single mother by choice.
I was diagnosed as autistic (specifically PDD NOS) at the age of 15. Before then, while being homeschooled, I came across autism, developed an intense interest in the topic, and then gradually started recognizing myself in the descriptions I was reading (especially stuff by actual autistic people). When I briefly went back to school (I was homeschooled from grades 7-9 and 11-12), I got my official diagnosis because I was struggling with school and sought counseling.
I also have PTSD, diagnosed at the age of 7. Two of my cousins lived with us in kinship foster care for several years – they both came into our home when I was 10 months old, and the last to leave stayed until I was 5. During the time I lived with them, both of them sexually molested me. It came out because one of them confessed, but my parents had previously had concerns about my safety, which were the reason he left our home. (His sister, meanwhile, chose to run away and not come back.)
You recently wrote an article about perceived Autistic weaknesses having similarities with possible effects of ABA therapy. What kinds of therapy programs or approaches would you recommend that would help parents and children work through communication barriers (rather than amplify the difficulties they are having)?
Well, firstly, I think people overemphasize the importance of therapy for autistic kids, and not all kids need or benefit from getting therapy at all, especially in the early years. I’d like to see less panic about getting intervention as early as possible.
However, for kids who are struggling with communication, behaviour, emotions, etc. in ways that aren’t just “they are weird”, here’s some of the therapy approaches I think are more beneficial:
SonRise/DIR/Floortime – this one is known by a few different names because it’s been separately reinvented by several people, but basically it’s a relationship-building therapy that involves joining the child in activities they are drawn to and turning solo play into social play.
I don’t buy some of the reasoning for why it works for autism, because autism doesn’t inherently impact on the ability to form emotional bonds with people, it’s more just having a different communication style. But it mirrors a lot of stuff that’s really beneficial for all children – there’s a bunch of research in typically developing children on the benefits of parental sensitivity training, which heavily overlaps with DIR/etc. And when parents and children have very different ways of processing, it adds an extra layer of challenge that makes actively working on forming that bond more valuable. (The same sort of issues with the parent-child connection have been studied a lot in mixed hearing dyads, ie. Deaf parents of hearing children and hearing parents of Deaf children.)
For kids who are struggling with speech, augmentative and alternative communication can be really helpful. In addition to changing the modality of communication, a lot of the people who are really experienced with teaching AAC also know a ton of stuff about how language naturally develops and how to stimulate it, whereas ABA uses an outdated theoretical model for language development known as verbal behaviour. A speech therapist who has experience with AAC and isn’t a fan of ABA can be an excellent resource, not just for kids who can’t talk at all, but also for kids who are hard to understand, say things they don’t mean (eg echolalia), or have inconsistent speech abilities, all of which are common among autistic people.
Modeling use of AAC systems, setting up opportunities to practice language in ways that are natural to the child’s life, emphasis on multiple reasons to communicate (rather than just requesting), and emphasis on communicating things the child chooses to communicate about (as opposed to prompting them to say what you want them to say) are some of the really great strategies I’ve seen. Also, focusing on core vocabulary, the couple hundred most commonly used words, means getting more mileage from a limited vocabulary.
For behaviour and emotions, some therapies I can really recommend as likely to help – sensory integration therapy, mindfulness meditation and picture schedules.
Sensory integration therapy works on the premise that a lot of behavioral problems can result from having atypical ways of processing sensory information, which is very common for autistic people. Virtually every autistic person I’ve met has had atypical sensory processing, myself included. Sensory integration therapy is about identifying the specific ways that the person reacts to sensory information. For example, one kid might be very sensitive to certain types of sounds and have a tendency to seek out interesting visual sensations. Then, you limit exposure to distressing sensations to manageable doses, give them opportunities to take sensory breaks where they engage with sensations that help them self-regulate better, and give them more control over their sensory environment overall. It’s really a great way to help someone who is struggling with sensory issues, and a lot of bad behaviour in autistic kids can be directly linked to their sensory issues.
Mindfulness meditation isn’t really usable for the youngest kids or those who have very little communication, but for kids and adults who can follow complex verbal instructions, it’s really helpful for building emotional self-regulation. This is probably the single most beneficial therapy I’ve personally had. Basically, you practice clearing your mind, breathing slowly and deeply and focusing on how your breathing feels. It’s very relaxing in the moment, and regular practice with it has also helped me to develop good habits for calming myself down when I’m getting overwhelmed by emotions.
It can make you more sensitive to sensory overload during and immediately after the meditation, though, so make sure you have a calm environment to do it in and don’t need to immediately do something overwhelming afterwards. And for people who have problems with dissociation, it can also sometimes trigger dissociative symptoms, which has happened a couple times for me. I’ve found personally that I tend to do best with mindful breathing exercises specifically, and body scan or guided visualization are more likely to have unpleasant side effects.
Picture schedules are also good for teaching practical skills, as well as improving behaviour. Basically, they’re based on the idea that a lot of autistic people a) find uncertainty really stressful, and b) are more visual thinkers than verbal. So, giving an autistic person visual information about what’s going to happen when can help them. For children, this often involves laminated pictures (could be photos, cartoons, or more abstract symbols, depending on the child) with velcro that can be attached to a velcro framework to build the schedule. For me, I’ve also used photo slideshow apps for this purpose. It’s especially helpful for autistic people who tend to get upset during transitions or when something unexpected happens, as well as for autistic people who have better ability to communicate with visual symbols than with words.
Have you experienced ABA therapy? Or have you ever worked in a therapy setting? What approaches do you find unhelpful?
I have both worked in ABA and received it myself, and both experiences have informed my negative opinion of ABA. At the age of 15, shortly after getting my diagnosis, I found a volunteering opportunity with an ABA-based gymnastics program for autistic children. I had a mostly positive experience as a volunteer, and it was a valuable opportunity for me to get to know other autistic people in person (who weren’t immediate family members – I suspect my dad is autistic) for the first time. However, a lot of the practices I saw raised concerns in my mind about the children.
The worst single example was a set of 5 year old identical twin boys, both fairly high functioning, but their biggest area of concern was severe separation anxiety. Both boys would pretty much cry nonstop from even brief separation from their mother. I didn’t work with them directly, but I watched their therapists repeatedly bodily haul them away from their mother as they screamed and struggled desperately, and then force them to do drills of simple vocabulary exercises like “show me the yellow toy,” with the reward being that they’d be allowed to return to their mother briefly. They also lied to the boys about how many trials they had to do, e.g. they’d say “just four more”, the boy would do two trials, and then they’d say “just three more.” I was honestly even more disturbed by the fact that this tactic worked – by the end of the program, which lasted for a few months, both boys had learned not to cry and try to get back to their mother. I seriously doubt that any of this was good for their mental health, they kinda seemed more like their wills were broken than that they actually felt safe away from her.
Besides that, there were lots of smaller things that bothered me. All the therapists spoke in a patronizing high-pitched voice that I found grating to my auditory sensitivities. There was an integrated portion of the program that included both autistic and neurotypical children playing together, and the therapists only used that patronizing voice with the autistic kids – it was often easier to tell which kid was autistic from the adults’ tones while speaking to them than from the child’s own behavior. In addition, during the orientation, the program coordinator said that we should stop the kids from stimming to prevent them being bullied, which struck me as very victim-blaming. I’ve been bullied and had adults try to tell me how I provoked it by acting weird, and it felt pretty much like a rape victim being told she should have dressed differently. Plus, when I did try to act more normal, it didn’t stop the bullying – and I was a lot higher functioning than many of the kids we worked with.
Also, although it didn’t occur to me at the time to be concerned with this, in retrospect I have concerns about how much physical force we used, especially since some of these kids probably had tactile sensitivities. We were told that if we gave a command and the child didn’t do it, we should prompt them by grabbing their hands and making them do the command. If the child didn’t want to cooperate, we’d just force them. I’ve since learned that child sexual abuse prevention programs encourage teaching children that they are the boss of their own body and no one gets to touch them without their permission, which is the exact opposite of the lesson we were teaching these kids.
I received ABA about a decade later, in the context of an employment skills training program. They did not describe their program as involving ABA, if they had, I wouldn’t have signed up, but in retrospect they definitely had an ABA mentality. Most of the program was just a waste of my time, because it turned out to be aimed at people who were lower-functioning than me. But where it went really bad was when I had a meltdown. I was looking forward to a cooking program they were planning to run until they mentioned that they chose the recipes and required everyone to eat what they made, which is a serious problem for me as a picky eater. I started trying to convince them that this was a harmful idea, and ended up getting upset and crying. They tried to get me to go back to my task and just ignored the tears, and I snapped and started self-harming and screaming. At this point, I basically became invisible to them. They acted like I just flat-out wasn’t even there. I got more and more desperate for any acknowledgement of my existence and emotions – I’d have even preferred being physically attacked at that point – and started having suicidal thoughts, wondering if they’d even call 911 if I was in imminent medical risk and feeling tempted to try to kill myself in front of them to see their reaction. Instead, I called my parents to come pick me up and then called a suicide hotline to keep talking to until my parents arrived.
Afterwards, we arranged a meeting to talk about what needed to change to make sure there wasn’t a repeat of this incident. This was basically a “last chance” for them in our minds, we wanted serious acknowledgement that their staff’s response to my outburst (or lack thereof) was unacceptable and had put me in danger. Instead, they wanted to set a bunch more rules for me, including trying to dictate what I wore (apparently they didn’t approve of me not wearing a bra, something that didn’t seem to be a problem for them before), and wanting permission from my parents to kick me out to go home by bus if I had another meltdown. (Note: this program was located very close to the North Central region of Regina, so it was a high crime neighborhood, in addition to all the inherent problems with sending someone in a state of mental health crisis out into the community unsupervised.)
So we quit the program, and then I spent ages trying to get off their mailing list while they spammed me for months.
Next week Ettina shares 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.