Autism: Prevention, Cure, Treatment

People, parents, advocates, therapists, medical and school professionals, throw around words like prevention, cure, and treatment when talking about autism as if they are interchangeable. These terms are rarely explicitly defined. It's just assumed that everyone in the room knows what you're talking about. This vagueness and imprecision with language muddies the waters when trying to have meaningful discussions about helping autistic people.

Let's start with the word prevention. Prevention is proactive, stopping something, something you think is bad, from happening. There are a lot of people invested in finding ways to make sure more autistic people don't happen. Their primary tool is the flood of information about the genetics of autism that has become known over the last decade or so. I'm excited about the great body of knowledge about autism that science is amassing. But as someone raising autistic children and advocating for society to value the humanity of autistic people I can't say that I'm excited about using these scientific discoveries to find ways to prevent others like my children from coming into existence.

While some search for ways to use genetic markers to eradicate autism I'm not reassured by insistences that prevention is only for the most "severe" cases. Severity here being defined as those people who would never be able to dress themselves, feed themselves, or speak. This raises several questions. Who defines the severity of autism? Right now, the criteria are arbitrary at best. When is the determination of severity made, before conception, pre-implantation, first trimester? Good luck with that moral and ethical quagmire. Arguing that people with more intense needs shouldn't exist doesn't make the argument for autism prevention any more palatable.

Throw into the prevention mix those who still cling to disproven causation theories about autism. Their beliefs about what causes autism lead them to choose from a range of preventative measures that require significant financial output, emotional investment, and leave them vulnerable to adverse health outcomes. We've already seen the results of some those choices with recurring outbreaks of previously rare vaccine preventable diseases. I don't want to repeat myself just now so I'll leave that topic alone for the moment.
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What do people mean when they talk about curing autism? Cure is retroactive, a complete or permanent solution to something that has gone wrong. Curing autism is what you turn to when you've failed at prevention. For some curing autism will look a lot like preventing it. Eradicating autism in existing individuals has been a driving force in parent autism advocacy for decades. Organizations such as Defeat Autism Now, Cure Autism Now, Talk About Curing Autism, and Generation Rescue formed at the turn of this century all with the purported mission of curing or rescuing children from whatever caused their autism. The emphasis on curing autism begs the question, is autism something that can be cured? The cure oriented groups each had their pet causation theories, their pet cures, and were certain that their way would work to fix autistic children.

All the most rigorously reviewed scientific information to date points to autism being a diverse dynamic genetically based neurodevelopmental variant. Autistic brains work dramatically, and subtly, differently from what medical neuroscience has identified as the typical human brain to produce what is typically identified as autism. Does that sound complicated? It should. The human brain and human behavior arising from brain function are both complicated.

What would a cure for autism look like given our current state of knowledge? Rewiring an adult’s brain so it functions more like a different brain? Training autistic people to act like their brains are functioning in a more typical fashion, even if they don't? Trying to hijack fetal brain development to up regulate (make more of) or down regulate (make less of) specific proteins? Artificially directing the migration of individual neuronal cells in the brain during fetal development? Oh look, another moral and ethical quagmire! Also, far beyond the understanding and capabilities of the scientific community (no offense ladies and gentlemen).

I should point out that the cure oriented parent autism groups didn't go away. Several of them were consumed by the juggernaut organization Autism Speaks. Others rebranded themselves as evidence piled up against their pet causation theories or faded into Autism Speaks' shadow.

Prevention of autism is implausible at best, morally and ethically repugnant at worst. Curing autism isn't any better. What about treatment? What might people mean when they talk about treating autism? Treatment is the ongoing care given to someone. It encompasses the way one person behaves towards another. Good effective treatment is responsive and adapts to the needs of the individual. You would think that treatment for autism would be a better option than prevention or cure. However, people often conflate treatment with prevention and cure. Rather than being responsive to the needs of autistic people treatment becomes focused on making autism go away or focused on the needs of parents or the people providing the treatment.

Autistic people need effective treatment that is focused on their needs. Not what their parents want, not what society wants but what they need. What should the end goal of effective treatment be? Since making autism, autistic people, go away is problematic, to put it mildly, let's work towards making autistic life full and rich and meaningful. Effective treatment for autism starts what the recognition that you're dealing with a dynamic individual. It recognizes that autism is an integral part of that individual. Good treatment understands the person has strengths and habits that can be hijacked to support them in areas where they may be weak. Effective treatment for autism starts with kindness and basic respect for autistic people.