mental health

“Anti-Recovery” Attitudes Around Neurodivergence

Content Notice: This post contains discussion of mental health treatment, ableism, saneism, mis- and maltreatment of disabled people in a medical setting, and lack of medical autonomy.

In the 4 January 2018 episode of Oh No! Ross and Carrie, “Ross and Carrie Get Rich Quick (Part 3): Sound of Love Edition,” Ross and Carrie discuss a Tony Robbins seminar they attended. In their discussion, they mention a piece of life advice Robbins gave, which amounts to “choose to be happy.” Carrie then goes on to mention that while the advice is good for most people most of the time, it certainly wouldn’t have helped her when she was struggling to pay for food and rent during a difficult period of her life.

“Most people most of the time” is, I think, a very broad way of stating who Robbins’s advice would be helpful for. It isn’t helpful for me or lots of other neurodivergent people for whom happiness is not a conscious choice – it’s a daily struggle to maintain any positive emotion, or any emotion at all, in the face of mental illness and developmental disorders that affect emotional regulation.

It’s simplistic advice like this, along with well-meaning suggestions like “do more yoga” or “just eat better” that trap neurodivergent people in a series of boxes and labels. Yes, trying to keep a positive attitude, eating as healthily as one’s situation allows, and making an effort to exercise can help alleviate some mental health symptoms. But exercise, good food, and positive attitudes aren’t going to cure or even treat many neurodivergences.

And then, if we as neurodivergent people accept that our conditions are more complex than a battery of simple suggestions imply, we’re often labeled “anti-recovery.” This label is often also given to neurodivergent people who refuse more conventional treatment (therapy, medication) but those aren’t simple cures either.

In many cases, a person’s neurodivergence may cause them distress and impair their ability to function in society but there is no cure or reliable treatment. Consider autism spectrum disorders: there are very few psychiatric medications that give significant relief when properly tested and many of the “therapies” tried on autistic children amount to little more than compliance training like the kind used on dogs.

Compounding this is the fact that even if there are well-established, not-inherently-abusive treatments for some neurodivergences, not everyone has easy (physical, economical, emotional) access to them. Let’s break this down into the three kinds of access mentioned above

  1. Physical access: This is, simply, whether a person has the physical/bodily ability to easily access and receive treatment. Take, for example, a person who needs a wheelchair to navigate outside of their house. If they don’t have a wheelchair that meets their needs, if the transit they have access to is not wheelchair accessible, if their doctor’s office is not wheelchair accessible, then treatment for their neurodivergence is not accessible. This is true for any accessibility needs related to physical disabilities or illnesses. Physical accessibility can also refer to the distance a (disabled or non-disabled) person has to travel to get to a practice: if a person has to travel 50 miles each way to see the doctor, it’s not a particularly accessible practice.
  2. Economic accessibility: mostly self-explanatory. If a person can’t pay for treatment (because the fees are too high, because they don’t have insurance, because their insurance won’t pay for treatment, because they can’t take time off work and afford the lost wages, etc.), then the treatment is not economically accessible to them.
  3. Emotionally accessible: this one is a little more complex. To be emotionally accessible, a practice has to be welcoming and non-discriminatory to a patient. For example, a practice that makes snide comments about a Black patient’s dreadlocks, a practice that refuses to treat a trans woman until she wears skirts to her appointment, a practice that ridicules a patient for having multiple psychiatric diagnoses, a practice that tells a college student the best thing for their mental health would be to move back in with their documented abusive family, a practice that threatens a non-imminently suicidal patient with hospitalization for disagreeing with the doctor – these are all not emotionally accessible. In other words, for a doctor or practice to be emotionally accessible, patients need to feel safe at the practice and they need to feel secure opening up about their issues.

Especially when a patient has multiple marginalized identities, it can be difficult to find a doctor who is accessible physically, emotionally, and financially. People who have a history of medical abuse or who have had too many bad experiences with inaccessible (but not necessarily abusive) doctors may give up on seeking treatment.

This doesn’t even begin to describe the toll on a person’s physical, emotional, and mental health long-term unsuccessful treatment for neurodivergence can have. One might cycle through multiple rounds of different medications (each of which can take up to six months to work fully), different therapies (which can also take months to see effects), and different doctors (see list above) to get to a medication, therapy module, and/or doctor that actually works. Medication and therapy are expensive!

Furthermore, not everybody’s idea of “recovery” looks the same. For some people, being able to leave the house on a regular basis is a step forward. For some people, going back to school is the goal. For some people, just being able to hold a conversation with someone they don’t know well is key. And for a lot of people, the treatment goal is a vague “feel better” that can’t be articulated well to others. That’s okay. No two people will have the exact same treatment goals and judging someone because their treatment goals don’t align with yours is rude and small-minded.

(This is all assuming that a person has one single neurodivergence or has multiple neurodivergences that have similar, compatibile treatments. For many people with multiple neurodivergences, the treatments are often wildly different, contraindicated, and not provided by the same doctor. This, of course, makes everything even more difficult.)

And all of this for what? While some neurodivergent people may be “cured” of their neurodivergence or recover to the point where they are no longer affected day-to-day, many aren’t. For lots of neurodivergences, there is no real cure. (Personality disorders and autism spectrum disorders come to mind.) That’s not to say that people with “incurable” neurodivergences shouldn’t pursue treatment. But discourse around treatment for neurodivergence needs to take into account the fact that not everyone can recover and not everyone’s idea of recovery is alike.

(Another huge assumption I’m making here is that the example person in this article is an adult who has been deemed legally capable of medical consent, can make their own decisions, and isn’t overly reliant on family when it comes to medical procedures. As a young person who until fairly recently was at the complete mercy of their parents to make the “right” medical decisions for them, I am all too aware of what happens when one isn’t legally capable of consenting to one’s own treatment. What happens then is that a person’s own wishes for treatment often get thrown out: it is the wishes of the parent or legal guardian/person with consent capabilities that really matter. Because lack of ability to legally consent to medical treatment by definition means lack of ability to have one’s own decisions for medical treatment recognized, people who do not have power of medical consent often are coerced into the treatment their parent/legal guardian wants, not the treatment they want. This will, eventually, when I have more time to talk about the subject, be another post.)

So, when a neurodivergent person throws up their hands and says “fuck it, I’m not going to keep taking medication/go to therapy/seek treatment anymore,” our reaction shouldn’t be to brand them anti-recovery. Our reaction should, rather, to ask why. What’s causing them to quit? What could change to keep them in treatment? Maybe they’ve decided it’s just not a good fit for them now and that’s okay. But in so many cases, neurodivergent people have been beaten down and kicked around by the health care system that mental health treatment of any kind is no longer a safe or welcoming place for them. Figuring out ways to give people who no longer want to be in treatment a non-medical support system and figuring out how to connect people who do want treatment with compassionate, supportive treatment needs to be our next step forward.