Whether or not you know and love someone with Autism in Ontario, you’ve probably heard more about Autism lately than ever before. Recent cuts to the Ontario Autism Program (OAP) have brought widespread protest, condemnation and sheer outrage from parents, therapists, educators and families. The OAP has had many failures to launch and been fraught with need for change since before it was formally named the OAP.
Beyond the obvious divide between Government and Community is the other divide. The one that lurks in the heart of these communities whose focus is Autism. This divide is the gap between parent advocates and clinicians, and the true experts-adult Autistics who wish to offer insight and address issues that many parents aren’t able to see in their desperate (and understandable) efforts to nurture happy children. The divide starts right with the language I’ve just used. On one hand you will find parents “of children with Autism” espouse how offensive it is to refer to a child without a perceived “person first” language (ie Autistic child) and the reality is that a large majority of the self-advocating adults I’ve met who are on the spectrum, prefer the term Autistic, identifying that the former term suggests the two can be separated or considered separately,when they cannot. Recently I followed some online discussions around the puzzle piece as a symbol of Autism. I have worn a puzzle piece ring for years, but I didn’t hesitate to remove that ring after hearing Autistic insights into why it was uncomfortable as a symbol. I also heard parents snicker and flex over this issue, unwilling to consider what they hadn’t considered before, regarding potential hidden messages. In a nutshell, as a “community” of sorts, we can’t even agree on the language-and certainly not on “the message”. For the parents who live in both realities (meaning parents who are also Autistic) and those of us who float somewhere in the middle (openly neurodiverse families) these challenges seem easily solvable by hearing from the voices we purport to support, but this is rarely easily achieved. Part of this problem arises from the state of sheer panic that can overtake the first few years of a diagnosis of Autism in a family. The typical fears about our ability to be excellent parents is further magnified. We are confronted by our own lack of understanding. Our insecurities runneth over. I feared daily that I would make wrong decisions for my child. That fear lead me to connect with Autistics to hear their perspectives on “treatments” and therapies. This was immensely informative, and formed the foundation of my strategy as an “Autism parent” (ie. gifted with an amazing child from which to learn parenting!)
How does this divide fracture the current efforts to bring services to Ontario’s children? This resistance to hearing that we may be wrong from Autistic people means that we continue to fight for fractured services, trying desperately to choose one focus that we can win on. Years ago, when I entered this world of advocacy, ABA was hardly recognized. I picketed for other parents right to access this service because I believed them when they said they needed it. I believed the experts when they said “it will help”. I don’t disbelief them now. My own child’s introduction to ABA ended swiftly. He attended an Autism-focused summer camp with an ABA therapist on-site. He spent less than two hours with her and was so stressed and wound up when I picked him up that it gave me pause. He told me he didn’t want to play with her anymore. She made him feel very worried and he didn’t like it. I immediately asked them not to allow her to work with him. He thanked me. At that point I wanted to understand why it seemed a miracle for some and yet my child was clearly communicating distress over the methods. THIS, is the crack at the heart of the efforts to come together and guide our fumbling government towards a more sane set of services. There are many vocal Autistics (entire organized groups) who speak out against ABA/IBI based programs. There is a quick assumption by parents and clinicians that these advocates are railing against the ancient versions of ABA which involved abusive practices and caused obvious trauma to many people who are now adults. Parents cling to this piece of ancient history as a reason to discount these voices opposed, and they miss the point entirely. The part about these behaviour protocols which Autistics find distressing is the basic idea of behaviour “compliance” as a marker for success, by persistently redirecting or correcting some valuable coping mechanisms: rewarding them for NOT self-soothing. What they ask of us is to accept the behaviours and embrace Autism rather than trying to “train it out of them”. If you’re a parent with a child who appears to be suffering immensely and you are working on basic functions like toiletting, it’s going to be difficult to hear that the tool you’ve been waiting for may not be the miracle you wanted for your child. This isn’t as grim as it sounds though. ABA is only one tool-and it might be the one you need-but for a Spectrum such as Autism, you need a Spectrum approach. Many kids will thrive when given a combination of Speech Therapy and Occupational Therapy (double impact if you can actually combine these practices. We were lucky enough to pull this off and truly benefitted from it). Before the OAP had a name and budget, this was the program. Speech/OT/Physiotherapy and behaviour strategies were separate and vital services that you could hardly access. Instead of adding ABA to this portfolio, ABA has replaced the entire approach. It’s now the only strategy, and it remains unregulated and oblivious to the voices of Autistics. What Ontario’s families need is a multi-disciplinary program. A truly needs-based program will address all areas of this spectrums impact, (and communication and sensory impacts are lifelong). As such, services should be available regardless of age, and parents should have access to the appropriate service, not just the one with the largest group chant. Not just ABA/IBI (behaviour interventions).
We cannot continue to advocate for kids with Autism while snarking and insulting Autistics. We cannot continue to allow elected government to make us believe we only ever have one choice. We cannot continue to “fight for our kids” while fighting against the kids who came before them. It’s positively ludicrous to suggest that Autistics don’t have insights to guide us. It’s equally ludicrous to suggest we have to choose one service to fight for. I support the rights of parents and their children to choose what they need; I do not support their right to decide what my family needs. The Autism advocacy community has always had these cracks, but they are forming craters in the movement to improve services for Autistic people. We must be audacious enough to ask for what we want with every voice at the table. We are much weaker divided, and Ontario’s PC government is depending on that. One last point: the current crisis in services doesn’t ONLY impact families with Autism. The Autism community is loud and organized, but many other communities have been forgotten here. Many children with exceptionalities are forgotten in the fight for services because of the Autism focus. There’s a larger issue here, and it’s the people we consistently elect. Vulnerable persons are more vulnerable than ever in Ontario. Poverty for persons with disabilities is overwhelmingly the new reality. We need a much larger shift in consciousness than just the fight pertaining to Autism. It’s a small reflection of a much larger problem of heartlessness in Ontario.