- February 12, 2020
This is really hard for me to write, as it brings up some painful memories.
I am the parent of an Autistic young person who took part in a formal Applied Behavioural Analysis (ABA) program for 2+ years before starting school and then went on to have ABA-trained professionals involved in their school and social programs during early primary school. During this time, our family also was connected with organisations and parent circles that zealously promote ABA in Australia.
I am still involved in the autism-related space, including as a very active member of many parenting circles that include families who have used ABA in the past or are currently accessing it.
“Our involvement with ABA remains one of my biggest parenting regrets.”
Our involvement with ABA remains one of my biggest parenting regrets – in fact, many years later, our child is still working through the mental health fall-out from so many years of compliance-based therapies and approaches.
The purpose of this testimonial is to explain why a family like ours was drawn to ABA and the messages and mindsets that tend to be promoted by ABA providers and advocates. My child’s input is also included in this piece with their permission, though we prefer to keep our identities private.
The landscape surrounding autism when our young person was diagnosed was quite doom and gloom: autism as something to fear and something to be mitigated.
It wasn’t just the likes of Andrew Wakefield and Jenny McCarthy fuelling the flames of fear with their vaccine scare mongering. Here in Australia, there was a different fear-based campaign, in which several famous personalities warned in a public service announcement that “Autism is stealing the minds and personalities of a generation of Australian children … 30,000 Aussie kids have been kidnapped, by Autism”. On the other side of the world, mega-group Autism Speaks was running a similar campaign called “I Am Autism”.
The prominent clinical psychologist who was involved in our child’s diagnostic process recommended ABA and directed us to an ABA provider in our area, of which there were several.
At our initial intake meeting with the head of this centre, my partner and I were told about all of the glories of ABA. We were told that it was the only form of early intervention that was backed by robust evidence and that it could be life changing for our family.
I will never forget the key message that we heard early on:
“You can change the world”, we were told with an eye roll, “or you can change your child to fit that world. Which one makes more sense?”
At this stage, we didn’t have any meaningful connections to the Autistic community. We didn’t know much about autism, and we certainly didn’t want autism to take over our lives. So of course the latter made more sense – let’s change our child! We signed on for ABA. Our child was barely out of toddlerhood.
At an orientation session, we were shown the video of an American boy who “lost” his autism diagnosis after thousands of hours of ABA. This was presented as the best possible outcome that an Autistic child could have.
At the centre’s encouragement, we bought recommended books by “ABA parents”, such as The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping and Healing – From a Mother Whose Child Has Recovered.
“For parents like us, who knew very little about autism and were quite overwhelmed by what we thought it represented, it was very encouraging to think that our child might someday lose their diagnosis.”
In fact, in due time, we were told that because our child was so “high functioning”, intense ABA offered them the best chance at doing just that. Best case scenario would be for our child to march off to school and pass for “just quirky”, which became our ultimate goal.
We were led to believe that we needed to take advantage of every single moment prior to the start of school to help our child reach this goal. I cannot underscore how strong this narrative was at our early ABA centre and within the ABA-endorsing advocacy group and related parent circles. Every single moment needed to be a teaching moment.
We were led to believe that if we signed on for anything less than 20 hours of ABA, we would be short-changing our child’s chance at a good life. For those 2+ years of intense ABA, we didn’t even consider taking a break or going on a family holiday because we were worried about derailing the program.
In order to meet the target of hours of our child’s program, we had to bring on board a number of “junior therapists”, to assist with the delivery of ABA drills. These junior therapists were typically uni students with no formal qualifications other than a 2 or 3 day training session at the ABA centre to get started (please note: this practice still seems to be very common amongst ABA providers in Australia).
We had a big team with a supervisor, lead therapist and many junior therapists – and regular, mandatory whole-team meetings that could easily cost hundreds of dollars.
These were the pre-NDIS days, so even with the Helping Children with Autism package, we were still spending tens of thousands of dollars per year to cover costs.
Our child was perpetually exhausted (as were we) from the seemingly endless sessions at the ABA centre and parade of junior therapists coming to our home. So much about that period of our lives seems like a blur.
During our time at the ABA centre and our involvement with parent-led advocacy to promote ABA:
- Autism was consistently positioned as something to be mitigated.
- We heard criticisms of specialist schools specifically because they “adjust the child’s environment rather than helping the child adjust to the real world”.
- We heard criticisms of professionals who supported Autistic expression like stimming (for instance, a popular educator who delivers training was criticised for encouraging fidget toys “instead of addressing the stimming”).
- Every gain our child made seemed to be attributed to ABA (as opposed to natural development or other forces in our child’s life).
- Access to intense ABA was positioned as a right of every Autistic child in Australia. Parents who went to extreme measures to fund their children’s ABA programs (e.g., selling their houses to cover the cost of programs, commuting interstate to access ABA) were lauded as heroes fighting against a government that supposedly didn’t care about “doing the right thing” for Autistic children. We find that this narrative is still quite strong amongst the ABA lobby in Australia.
- And later, when we started to make links with the Autistic community, we heard self-advocates and pro-neurodiversity parents who expressed concerns about ABA dismissed as “radicals” and “keyboard warriors” and “people who don’t understand the challenges of REAL autism”.
Our child’s ABA program included things like:
- Emphasis on eye contact,
- Emphasis on reducing or suppressing stimming,
- Emphasis on “age-appropriate interests” and “playing” like neurotypical children,
- Powering through meltdowns even when they were exhausted (“We don’t want to reinforce bad behaviour”), and
- Using various rewards (including lollies and access to their favourite things) to encourage participation and compliance.
Many years later, one of the earliest memories my young person can recall is that of being “taught how to play” at age 3-4 by their team of ABA therapists:
“‘I remember being so mad and frustrated, but I didn’t have the words to tell anyone. There is no ‘right’ way to play … it’s PLAY!
When I would get upset, they (ABA therapists) thought I was just being naughty. When I would play their way, I would get a reward.’”
We still have some feedback given to one of our junior (uni student) therapists from the BCBA (Board Certified Behavioural Analyst) who led our child’s program:
“If X looks at you while responding at ANY time without a prompt give [them] big praises and a token immediately. However, if X did not look when you called [their] name and then you used a gesture prompt to obtain [their] eye contact this is not token worthy. We always want to reinforce the best possible response.” (Emphasis added.)
This is how the masking started.
For the first few years of our child’s primary school education, we had become so consumed with “managing their behaviour” per the standards encouraged by our ABA team that we employed a series of “shadows” to support our child at school. Again, the emphasis was on setting up elaborate token systems at school and at home that emphasised good (compliant/non-Autistic) behaviour. When our child started showing serious signs of anxiety and started absconding from the classroom, we were instructed to bring on a full-time aide who was trained in behavioural support and used ABA-inspired principles.
“It wasn’t until we started making connections with the Autistic community many years into our journey – first quite hesitantly and then more strongly – that we began to appreciate just how much harm ABA can do to vulnerable families. It took us some time to fully absorb their input without becoming defensive.”
For our child, and many other kids like them, ABA was an intense and exhausting reminder that they “needed fixing” and for us as parents, it prevented us from moving to a place of genuine acceptance of who our child was (and still is). We were continuing to chase the mirage of “indistinguishable from their peers”.
In very sharp contrast, by tapping into Autistic-led spaces and organisations and resources that respect Autistic lived experience, we have been able to understand and support our young person in ways that were never possible when we were immersed in the world of ABA.
Our child’s greatest leaps forward in confidence, self-acceptance, social interactions and self-care have come when they have been surrounded by people who understand how they process the world, presume their competence and aren’t trying to teach them how to pass as “just quirky”.
My partner and I have also discovered that there are so many families like us, who have seen firsthand the pitfalls of ABA and the narrative that insists it is the most superior way to help Autistic children. We have connected with so many Autistic teens and young adults who, like our child, have had a net-negative experience with so-called “modern ABA”.
One of the most striking examples was a non-speaking teen who requested to join one of our private parent groups (autism-related) several years ago after he had gotten to know one of the families in the group. He desperately wanted to warn parents about what it felt like to go through ABA as an Autistic child with high support requirements. His childhood was dominated by 30-40 hours per week of ABA, which left him feeling depleted and defective.
“Sadly, even though it’s been years since our child has been subjected to any compliance-based programs, they are still suffering the effects of years of feeling like they had to mask their Autistic self and act like the other kids in order to be accepted.”
Our child’s psychologist, who has previous ABA experience, and their psychiatrist feel that the prolonged masking has contributed to our child’s ongoing mental health struggles. Not that long ago, our child noted that “when kids are given a reward every time they do something that an adult asks, it probably makes it easier for people to take advantage of them”.
I am in tears typing this account.
I am sad, alarmed and frustrated that so many parents of newly diagnosed Autistic kids are still being given the message that intense behavioural therapy is the best way of helping their child.
In all of our years at our first ABA centre – and later with another one in the same region – I cannot think of a single time when we were encouraged to learn from Autistic voices in order to better understand our child.
When our child struggled or had a setback, I cannot recall a single instance when our team recommended less ABA or taking a break from therapy – instead, the emphasis always seemed to be on increasing hours rather than reducing demands.
I do believe that the therapists working with us – most of them quite young and relatively inexperienced – genuinely cared about our child. Likewise, we met some lovely families during our ABA years. I don’t think anyone is pushing ABA with the intention of doing harm – they actually think the work they are doing is noble.
But within these circles, there appears to be very little regard for the emotional impact of compliance-based therapies and few, if any, meaningful, respectful connections to the Autistic community. We find this to be especially so amongst the leaders within the ABA lobby. They continue to wield a lot of influence amongst medical professionals and policy makers. People who speak out against ABA are marginalised or openly criticised.
Just as my partner and I look back at our own childhood years and can’t believe that smacking kids was so prevalent, we think we will someday look back on the early 21st century and wonder how ABA was promoted as a cornerstone for supporting Autistic children – especially as research facilities and government agencies increasingly seek out Autistic lived experience and consider the mental health implications of compliance-based interventions. I really hope we see the day soon when the first thing clinicians do after diagnosing an Autistic child is direct that family to the Autistic community. Oh, how that would have changed to course of our family at a time when we were most vulnerable!
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