giant red hibiscus flowers in Portland, Oregon. (September 2021; Jennifer Willis)

educating the helpers: an unfortunate burden

“It’s just an article,” she said to me on the Zoom call. “Just because it’s posted on the Autism Speaks website doesn’t mean they wrote it or that it’s objectionable.”

The fight had nearly gone out of me. This was a scheduled appointment with a resource specialist in my therapist’s office, and it was the second time I found myself having to push back on her recommendations. There are several other adult autistic clients she’s helping, too, but she admitted she was still learning about autism and about available and appropriate resources. And unfortunately, this wasn’t her first bad recommendation. She’d already pointed me toward NAMI. Now it was Autism Speaks, and a few minutes later, she recommended ABA therapy, after I’d explained previously why it’s deeply problematic.

She didn’t know what she didn’t know, and she hadn’t understood that her suggestions were potentially harmful.

As someone with chronic illness and chronic pain, I’ve run into this kind of thing before, especially with dysautonomia, which isn’t well understood by many medical professionals. Either they’re unfamiliar with it—even though the condition is likely more common than most people realize—or they mistakenly equate dysautonomia with POTS (postural orthostatic tachycardia syndrome), which is merely one possible form of dysautonomia rather than the entirety of the condition.

What this means is that you’re struggling with your condition, whatever it may be, and then have to struggle with educating your provider when you try to ask for much-needed help—and that’s when your provider is open to listening and learning; too many aren’t interested, don’t have time, or simply shut you down and gaslight you about your own condition. It’s an unfortunate burden heaped on top of the challenges you’re already facing, and it’s exhausting.

There are several potential pitfalls to this dynamic, including:
1. There’s little, if any, immediate help forthcoming; you invest your time and energy sharing your own resources, when you might be better off exploring on your own.
2. The helper can become overly reliant on you for direction, so you end up in a feedback loop of the same guidance you came in with, rather than the helper reaching out to bring in the new information and resources you wanted and needed to begin with.

Yes, we all need to advocate for ourselves regarding our health care, because we’re the ones who have to live in these bodies and with these challenges on a daily basis. We are the ultimate stakeholders. But it shouldn’t be this hard to get help.

I don’t blame the resource specialist—not much, anyway. With recent attrition in the field, she’s juggling the caseloads of at least three employees. She is overworked and overwhelmed, and that’s a failure of the system. But she’s also making recommendations without doing enough research. A Google search of Autism Speaks returns mixed results, with the organization’s controversies coming to light on the second page. And it didn’t help that I had to explain for a second time that ABA therapy is effectively conversion therapy for autistic people and that it shouldn’t be recommended to anyone.

How many other people received these same recommendations before someone pushed back? She also suggested beneficial resources like Wrong Planet, which I already knew about, so her guidance wasn’t completely off-the-mark. I was able to point her toward AANE for their excellent online support groups and LifeMap coaching services. And I told her about Grit & Flow, a company whose purpose is to bridge the gap between businesses and their neurodivergent employees, so that everyone is being heard, accommodated, and included, to the benefit of all. I hope she can share these resources with her other clients, but I was left in the position of leading the conversation and offering information; I had reached out for help, and ended up spending my time educating her and not getting the assistance I need.

There’s no real conclusion here and no constructive advice I have to offer. There’s only the grim reassurance that if this is happening to you, too, you’re not alone. There are individuals and small teams working to build networks that will help to educate the helpers, but necessary funding and support can be hard to find. I suppose my recommendation is to speak up and speak out. Doctors and other professionals aren’t omniscient or infallible, and sometimes you need to push back. And don’t give up, because we’re worth the fight.

Posted in thoughts from the spiral.

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