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December 11 - December 14, 2024
Non-autistic parents of autistic children need to internalize the fact that, overall, autism is not inherently some dreaded, terrible affliction that has “stolen” the lives of your children
Regardless of how non-autistic parents of autistic children might feel about autism, autism ain’t going nowhere. No matter how many years of “intervention” and/or “therapy”one attends, how many gluten-free casein-free soy-free meals one digests, how many “social skills training” programs one completes, how many essential oils you utilize, how many thoughts or behaviors you suppress…your child is autistic and always will be.
Enter Damian Milton, an autistic researcher who created his own theory, which is known as the double empathy problem (Milton 2012). He recognized that when you put two autistic people together, autistic people no longer experience the same cognitive empathy difficulties. Autistic people create relationships, socialize, and interact with each other autistically. As it turns out, autistic people understand other autistic people just as well as allistic people understand other allistic people. Autistic people simply have their own way of interacting, relating, and empathizing.
While the medical model of disability focuses on fixing and curing people, the social model of disability focuses more on accommodations and accessibility. This difference is especially important in the neurodevelopmental field. Autism is a neurological and developmental diagnosis, which means it stems from within the person’s brain and nervous system.
If you want accurate information about autism, make sure your sources center autistic voices.
I had a wild idea that I might research what autistic adults actually felt about that same therapy. I was devastated by what I found. Significant, intergenerational, prolonged trauma and posttraumatic stress. Autistic children, groomed for predators via the therapeutic approach to turn their No to a Yes.
I was discouraged to see resources I trusted for reliable information, such as the National Institutes of Health advising that children as young as two years old needed intensive intervention. This was in direct contradiction to developmentally appropriate practices for all children, no matter what.
High functioning is not how an autistic person experiences being autistic. It’s how society experiences the autistic person…
While ‘high functioning’ is used to presume competence, ‘low functioning’ is often used to deny autonomy… Autistic people in this cohort are often exposed to abusive therapies, such as Applied Behavioural Analysis (ABA), to try to ‘normalise’ their behaviours. (Williams 2019)
I knew from day one that the little tidbits of information TopDoc fed me didn’t sit right. When he handed me that script for ABA without offering one single apprehension about the intervention, my Spidey-senses started tingling. If I didn’t know anything else, I knew developmentally appropriate practices. There is nothing—and I mean nothing—appropriate about a toddler sitting at a table to work, forcing them to perform tasks, and ignoring their protests (NAEYC 2020a).
Our value is based on our humanity, not what we contribute to capitalism.
The billions of dollars in the autism market don’t actually go to autistic people. You may already suspect this if you’ve ever attempted to apply for services for your own family. It isn’t easy. Most of the dollars go to the wealthy CEOs and owners of the companies that claim to help the autism community in one form or another. While the list of profiteers is way too long for this book, they include applied behavioral analysis (ABA) companies (which are almost always for-profit), biomedical treatment companies, and similar organizations that offer parents the “hope” of curing or treating their
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If we were discussing typically developing children, we’d simply make a mental note that our kids feel better and stop buying that particular ingredient. But to parents who view autism as an illness, it may look like they’re recovering.
Autistic people develop on their own timelines which are often different from neurotypical people, but they do in fact develop. I’ve noticed that my own children show progress in big leaps as opposed to small steps. It seems like they process everything in their head before they decide to give it a try. I’ve learned that this type of development is common with neurodivergent kids.
as Ellie Hunja so eloquently writes, “We are not being oppressed by the same systems that oppress our kids” (2021). But we are being preyed upon by those who profit from this relentless tragedy narrative. It’s important that we start recognizing and rejecting these tactics. Not only do they distract us from supporting our children in the ways our children deserve, they also impede progress for disability justice.
our discussions should highlight the fact that systems are failing families, not that disabled children are making life harder for families.
Behavior is communication. Yet still, many professionals put an emphasis on reducing those observable behaviors without addressing the children’s need for support with communication or sensory regulation. Behaviorism actually stifles communication because, for nonspeaking autistic children, the only communication that child has is behavior.
It’s dangerous and traumatic for autistic people, teaching them that their feelings and opinions don’t matter. Compliance and performance on demand are rewarded, which grooms children to suppress their natural instincts. This puts autistics at a greater risk of physical, emotional, and sexual abuse throughout their lives.
Parents are the customers. Doctors are the sales force. Behaviorists are the factory workers. ABA corporations are the profiteers. Children are the collateral damage. But who cares, because they’re damaged anyway, right?
The industry is, in the main, motivated by money, not whole-person wellness. You can tell because of how often they dismiss survivors of ABA who talk about their trauma. You can also tell because of how often they shut down any conversation about risks or long-term effects of grooming behavior.
no amount of torture disguised as therapy will make a neurodivergent child neurotypical.
They don’t understand that law enforcement officers are trained to believe, without scientific basis, that common autistic traits are seen as “pre-attack indicators” (AUSM 2019).
Dr. Barbara Stroud points out, “Doctors are only as knowledgeable as their training. Medical school trains doctors to treat injuries, diseases, and illnesses. Child development, sensory input, motor differences, accessible technology—not so much” (Stroud 2021).
Nobody is a better parent than a person who doesn’t have any kids.
Autism is a neurodevelopmental disability. A neurological classification if you will. It’s not a disease or an illness. There is no expiration date on the diagnosis. Your child is not going to be more or less autistic based on whether or not they started a specific therapy at a certain age. Don’t allow a profitable industry to push you into an action that you have not researched thoroughly. If the autistic community says something is harmful, listen and research. If the autistic community says something is helpful, listen and research.
The idea that we must always be working on something is a product of capitalism, which is inherently ableist. Your worth doesn’t depend on your productivity.
The autistic community generally agrees that ABA is an abusive practice, yet most of the energy is spent on shaming frightened parents rather than ending institutional practices that target children of color.
Allistic parents should enter autistic spaces with the goal of listening, learning, and absorbing. Autistic people mentor parents to protect autistic children, not to protect our feelings.
