Parent of Newly Diagnosed Autistic Child
Alex’s parents have just got a diagnosis for them. (Alex’s gender will not be specified.)This is a scenario that commonly occurs when parents are in this position.
Doctors: Your child has autism and will never do X, or Y, or Z.
Parents: Omg, this is horrible! I need to help Alex to be able to do X, Y, and Z! How do I do that?! [The parent feels anxiety, fear, grieving of parental expectations that society sets for having children]
ABA therapists: ABA therapy helps with all of these things! Alex is 3 years old? Good thing you got the diagnosis early so that we can enroll Alex in intensive behavioral therapy for 40 hours a week! This therapy will give them the tools to do X, Y, and Z! Plus, ABA therapy is fun!
Parent: Hm, that seems like a lot of hours. I wonder what happens in ABA therapy. I wonder if that will help Alex. It sounds like intervention needs to happen right now or the ABA therapy won’t be as effective. [The parent is hoping that Alex will be safe, and that some expectations from society will be met with milestones for X and Y, even if not Z.]
Parent: The parents witness ABA therapy and wonders if it’s good for their child. At this point some parents seek out autistic adult perspectives. The parents may worry about their children being forced to make eye contact, being told their child is not “playing correctly” with their toys when they are perfectly happy, being touched constantly, and having therapists move their hands back into their lap.
Autistic adults tell the parents that ABA is likely harmful, and that this “therapy” is forcing the autistic person to mask and become even more stressed in the long-term by conditioning them to act neurotypical.
If parents bring up these points to the therapist, or if they tell the ABA therapist they do not want their child enrolled anymore, this happens:
ABA therapist: I can’t believe you don’t want to help Alex! You’re ruining your child by not letting them be in this therapy! They will never do X, Y, or Z!!
Parent: [The parents become anxious about Alex’s future. What happens if Alex would better eventually with this therapy? What if we miss the developmental window for intervention? What if Alex is unhappy later in life because we did not do ABA therapy?
What if it just looks harmful but really it’s ok? Do autistic adults really know what they’re talking about? Should I trust my own instincts, which tell me not to do ABA therapy? But ABA therapists are professionals. Aren’t professionals always right?]
The Difficult Choice
This is the choice parents have to make. They are given the pathologized model of autism– something that must be “treated” or “fixed”– when there’s nothing to fix. “Fix” is the wrong approach to talk about helping children manage their sensory differences and find ways to self-advocate and communicate their needs.
Autistic development is rarely researched without “autism interventions,” which usually means autistic people are only researched after ABA therapy “interventions” were already in place. Autistics develop on different timelines, often in ways that are ahead of the typical milestones in some areas.
We don’t even know whether autism research is studying how autistic people experience life, or studying how traumatized autistic people experience life. Autistic comfort or well-being has not been given precedence in research or enough consideration about the long-term impact of compliance therapies like ABA.
We do know research is clear that childhood ABA therapy is highly correlated with PTSD in autistic adults.
Parents have a choice: Do we keep our worries, our anxiety? Do we listen to autistic adults? What happens if we don’t do something? Not doing something scares us!
What if the therapists are right? And what if putting our child in ABA therapy makes me feel better about my child’s future? Is my child going to be okay? How do I best support my autistic child?
And to those parents, I’d like to say that taking your child out of ABA therapy isn’t “doing nothing.” It’s actually doing something remarkable. It’s a definitive step to go against the status quo. It’s standing down the pressures of society, which often forces autistic people into masking and harms their mental health. Not doing ABA therapy is supporting your child.
And there are other supports! There is occupational therapy for sensory needs, ear defenders/headphones/sunglasses for sensory needs, and physical therapy for dyspraxia or motor needs.
There is speech therapy involving assistive technology, such as AAC (alternative augmentative communication) and sign language to help your autistic child communicate their needs. There are a whole host of supports out there, and it doesn’t need to be listed as a “therapy” to help your autistic child, just like for a neurotypical one.
The right thing to do is often the hardest thing to do. And supporting your autistic child in the face of pathologization, cure rhetoric, and a conforming society is the difficult right thing to do.
I hope you choose it.