Autism, Therapies and Acceptance: A Mother’s Perspective
(This is also cross-posted on the Autism Women's Network blog, available HERE.)
Long before the day we received a formal autism diagnosis, I already knew my daughter was Autistic. However, I hadn’t picked it up at first – not because the signs weren’t there, because they were, but because I didn’t see anything problematic in those signs. She was a lot like the way I was as a child and also in some ways similar to me even in adulthood. For the most part, I understood her, and even the areas that I didn’t understand didn’t alarm me. I figured she had her reasons, and if she was content I should be too. (I know this is not typical of everyone; this is simply my experience.)
It was only when I enrolled her at 2 years old in a part-time Mothers’ Day Out program that the differences between my child and others her age were pointed out to me, by the program staff. Not understanding what they were getting at, I decided to come on a few different occasions and observe the class through the window to try to understand. In doing so, for the first time I saw my daughter through their eyes. And it was glaringly obvious at that moment that she was indeed different.
I went home and took to the internet to try to figure things out. It didn’t take very long to determine what I saw: autism. I read thoroughly through the DSM-IV as well as a host of other articles. And then I visited several other websites, as well as forums and blogs. For several weeks I spent nearly every spare moment I had online, often awake until 3 or 4 in the morning. Everything I read confirmed her suspected autism diagnosis more and more. On a visit to the pediatrician, I shared my thoughts, and she administered the M-CHAT; the results were no surprise. Fast forward many assessments and specialists later, and we had our official autism diagnosis. There was little fanfare or reaction, as that it what I had expected to hear.
I was glad to have confirmation of what I already knew. And I was grateful to live in a major city where I felt my daughter could have proper support and services. Armed with literature, phone numbers, referrals, and URLs to visit, I set about trying to determine if my daughter needed anything and how to get her plugged in. And one thing kept coming up over and over and over.
“Early intervention is key. You will need a minimum of 40 hours per week of behavior therapy in order to obtain the maximum results, and you need to start now, before she’s three.” I read that and was told that more times than I could count. When I questioned this logic, I was told that there was extensive research to support this practice. So I looked that up too.
I reviewed numerous studies and sub studies. I examined literature reviews and meta-analyses. I checked out personal accounts and contacted clinics. I reviewed the standards on the BACB (the body that is responsible for the accreditation of ABA programs and personnel). I watched some videos. I read various blogs. I looked at even more research.
And I wasn’t feeling it.
BC (before children) I had taken some undergraduate level psychology courses in college. I took more of them than what was required of my degree because I found the courses interesting, using the extra classes as electives. Aside from the usual intro to psychology survey classes, I also took child psychology, developmental psychology (over the lifespan), social psychology, women’s psychology, etc. While I do not profess that taking a handful of classes makes me any sort of expert in psychology, it seemed to me that this 40 hour a week ABA recommendation was contrary to nearly everything that I’d learned about development and the young child. I mean, 40 hours/week is the equivalent of a full-time job!
There was a plethora of literature about the way children learn. About their need for variety, spontaneity, and learning experiences. About their need to be nurtured, to move and play, to have supportive relationships, to build trust, to make mistakes, to develop healthy attachments.
Did all of this no longer apply simply because my daughter was disabled?
Before the diagnosis, I had worked part-time in order to spend more time with my kids. I was also blessed to have an employer who allowed me to work from home on some days and bring my daughter to work with me some days. My daughter’s Mothers’ Day Out program, which she had only recently started attending, was only 10-12 hours per week! My child was not even in 40 hours per week of childcare for me to go to work, yet now she was supposed to be placed in 40 hours a week of therapy because we now had a name to a condition she’d always had?
(I know everyone is not fortunate enough to make the same choices, and for some people such a choice wouldn’t be optimal for their families even if they such an option. I was raised by a wonderful mother who worked full-time outside the home, so this is no indictment of working parents whose children are in day care full-time.)
Moreover, on top of the recommended 40 hours of ABA, we were told that we needed to reinforce the strategies used in the therapies with her at home – so essentially she would be in therapy all day, every day, even if no therapist was present. Plus, as my daughter had sensory and fine motor differences and speech delay, she needed speech therapy and occupational therapy also. The whole thing was mind boggling. Was my daughter’s life going to be nothing but therapy after therapy from morning to night? When would she have time just to breathe? To play? To be alone and have some down time? Was she so broken that she didn’t deserve a childhood anymore?
I am not anti-therapy. My daughter had already been in therapy a few times per week since the age of six months, for some other health issues. But what was being proposed as a result of her diagnosis seemed far beyond that.
Then there were the costs of these therapies, which were pretty high; it seemed that many families had depleted their savings and refinanced their homes in order to come up with the money to pay for these services. There was huge variation from one provider to the next with regard to having the fees paid for by insurance and out of pocket costs.
Finally, I had to consider the therapy itself. Technically, it “worked” according to the studies. But the areas that were measured by most of the studies were not the areas of greatest interest to me, as her mom. I was less concerned about decreasing noticeable stereotypy, increasing eye contact, enrollment in general education, etc than I was about shaping her into a healthy, whole, decent person. The therapy seemed repetitive, dry, rigid, impersonal, and domineering. It seemed as if it was designed to “break” my child’s will and obliterate her natural way of moving, engaging, and communicating so that she could learn how to perform in a more “acceptable” way. All done under the guise of “helping” her, wrapped up with convincing buzz words such as “evidence-based,” “indistinguishable,” “optimal outcome,” “function,” “normalization,” “reversal,” etc.
I wasn’t convinced.
I am the daughter of African immigrants who lived part of their lives under colonial rule and part of their lives under independence. There was a frightening parallel between the government-sanctioned Anglicizing and cultural genocide that my parents observed and described to me and the philosophy that supported such widespread endorsement of 40 hours of traditional ABA as “the” go-to therapy for all Autistic children. Just like many BCBAs, during the colonial era there were Europeans who sincerely believed that by getting rid of “barbaric” customs and “savage” practices, they were “helping” to make the countries they took over more “civilized.” They saw little to no value in the people’s way of life and felt an urgent need to teach them the “right” way to be in order to “make their lives better.”
We chose a different way for our daughter. A balance that allowed her to retain her autonomy and sense of self while also helping to guide her and teach her new skills. A way to help her begin to learn to navigate a world with people very different from her without having to lose herself in the process. An approach that surrounded her with people who were loving and prioritized her needs, but incorporated healthy, age appropriate boundaries.
Without subjecting her to the equivalent of a full-time job simply for the crime of being Autistic.