Your Therapist Reacts to “Autism and Tylenol”

Donald Trump asserted that Tylenol was a “cause” of autism this week.

In the battery of incredibly tone-deaf, demeaning, racist, inhumane, and just wrong things he’s said, this one broke through my (now) steady level of regulation, reframes, boundaries, and facts because - of course it did. I have an autistic son. I have a neurosparkly daughter. I am married to an autistic man. The things I love the most were factually misunderstood and maligned. Of course, my heart broke. In my ‘protection mode,’ I am triggered right and mobilized. I am also taking the time to slow down, write through it, and find my ground.

Please join me.

Let’s start with some facts. There is no proof that Tylenol causes autism. Correlation is still not causation. And as an aside, I did not take Tylenol while I was pregnant. 

Zooming out further, let’s talk about diagnosis. The process of diagnosis exists in a system that leans on a statistical (not actual) reference source that eventually became the DSM.

Let me say that a different way: The DSM (manual of diagnosis) is a statistical reference text. The DSM was created to consolidate clusters of ‘symptoms,’ so that systems had a shared language to talk to each other. From a populations standpoint, this makes sense. It helps providers find and highlight trends, it helps providers find a common language, and it offers a (very limited) roadmap to  better understand what a provider might be seeing when they encounter something or someone new. The DSM is a stereotyper, and a extra-biased one at that; the DSM’s language is deficit-based and it mostly functions to name symptoms. The DSM cannot assess any human being sitting in front of you and, frankly, that is not what it is built for. Remember, the DSM is a statistical manual. The DSM does not tell you who you are or what you have; it tells you what some clusters of symptoms *might* represent at only one moment in time. 

Now, here is another truth: we, as humans, are not clusters of symptoms; we are years of variables, swaddled in our fallibility, swimming in misunderstanding, and brimming with hope. Diagnoses do not reflect any of that. They name deficits; they do not reflect resilience, grit, or survival. We, at the deepest and most intrinsic level, are survivors.

One clear problem with our deficit-based DSM paradigm is that one can’t have a “solution” without having a “problem.” So to diagnose, we first have to define the problem that needs to be solved. That’s what the DSM does. The DSM is not inherently good or bad, though. Remember, it is just a manual of statistics. Unfortunately, in reality, a lot of problems and symptoms actually represent responses to larger systems at play. 

Over the course of my time in practice, I have come to recognize that all behaviors make sense in context. And this means we have to choose a different paradigm. Following this different paradigm requires us to ask different questions.

For example, if I’m working with someone who is possibly on the spectrum, rather than assessing that person for their level of eye-contact (or lack thereof), I might assess the level of that person’s nervous system right now. How sensitive is that person to touch and feelings in their body? How is that person’s breathing? These questions tell me so much more about how to support that person (maybe you!) in my therapy practice than a statistical manual ever could.

We have a labeling problem. Many labeling problems, if we’re being honest. And, in our push to understand things at the macro level, we have lost some of our ability to see the humanity of each individual at the individual level. If we are not careful, we can easily lose sight of the People who are right in front of us. Further, we may align so closely with the labels given to us that we run the risk of not seeing ourselves. We must never forget: each of us is a dynamic, resilient, magical, lovable, feeling, human being.

Now, here comes the nuance (stay with me dear reader!): diagnosis and subsequent care DOES save lives. We do not need to throw out the model entirely; there are things to be done and diagnoses to properly apply. But, diagnosing is only a small fraction of how we heal.

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Okay- let’s circle back to autism.

There’s nothing broken about my son. There’s nothing broken about me as a mother. And, I have learned to hold a well of compassion for these misguided thoughts that might suggest otherwise, as they linger around my mind on the hard days. I am human too. I am constantly being bombarded with messages around our otherness and our ‘failure;’ my nervous system too gets baited and activated by fear. I live in the same culture as you with the same (often shitty) internet. 

I remember early on in my child’s diagnosis I fell deeply into the ‘what caused this’ trap. Did I eat too many eggs while I was pregnant? Was it because my husband and I were fighting in early pregnancy? The truth is in the messy everywhere and the honest *nowhere.* Autism is a neurotype and not a disease. 

At the same time, I can honor that stress is real. There are things that likely contributed to my baby’s stress in the womb, as there are for *every single child* growing up inside a human who is paying attention. If we want to talk about ‘cures’ for autism, maybe we should look at the way we handle stress in our society. The way that we trigger each other’s nervous system into constant vigilance. The ways that we try to ‘fix’ things that weren’t broken. The brokenness is not in each other. It’s in our system that eschews individuality and humanity in the name of ‘order.’ It’s in our policies that would prefer to take power rather than give relief. It’s in our fears that somehow this is all our (or their) fault.

Let me leave you with this: if you’re looking for a cause- I get you. I see you. I’m sorry you are suffering so much. I am sorry that we live in a world that asks you to choose between ‘fixing’ your child - your partner- yourself or forever being on the othered, ‘broken’ side. These things are real and I know them to be true. They are also based on ideas that are fundamentally harmful and wrong. There is not a single ‘right’ way to be a human.

And yet, when we are targeted, when our identities are questioned, it can feel so vulnerable. We might get angry. We might climb into a bed of doubt. We might believe their lies or our own indoctrinated fears and false voices. We might wish things were different – we might wish we were different. Because, how could we not?! Suffering and othering sucks. Still, fundamentally, these things are not ‘disease and cure’ problems; these things are compassion problems. We have lost the thread back to our own hearts and, by connection, each other.

When I slow down enough and think about what is the *real* problem - it is simply that: we have closed-off our hearts off due to chronic protection and activation. We are vigilant to even ourselves. We are hyper-boundaried because nothing feels safe anymore. On a visceral, body level, we do not feel held and okay. Because it hurts too much.

But, it does not always have to. Community. Connection. Care. Therapy. Nature. Movement. Breath.

Love.

Today my heart broke a bit - not just for me, but it’s for all of us. And, I am okay. And, you will be too. I see you and I love you.

Let’s be in touch….