The most important thing you can do for an autistic individual when they talk about their struggles and experiences is believe them. The second most important thing? Accommodate them.

How can I say this with such conviction? Because I’ve lived it. I’ve lived both without accommodations for my autistic brain and body and with accommodations, and the difference is astounding. I’m writing to illuminate just how important accommodations are to many autistic people by sharing parts of my story.

I aim to give you a glimpse into the potentially devastating consequences of restricting accommodations.

I hope you can take the insights I share and use them to reflect on and consider how you’re currently accommodating your autistic students. I’d like to write more about how you can accommodate your autistic students, but today I’m focusing on the foundational why.

Storytime – No “special treatment” for chronic pain

When I was 15, I was referred to a pediatric rheumatologist for experiencing chronic pain all over my body without a discernible cause. By the time I had the appointment, I’d been in near constant pain for nine months, which had only worsened over time. Ignoring it, unfortunately, hadn’t made it go away like I’d hoped. I couldn’t focus in my classes or keep my grades up. I was staying home from school. And people were starting to notice something was wrong. I was getting desperate.

When I met with the doctor, chronic pain that couldn’t be seen or explained was largely branded as a psychological issue. “Fibromyalgia,” the diagnosis commonly associated with unexplained widespread chronic pain, wouldn’t be considered a legitimate medical diagnosis for another three years.

My doctor was on the slightly more progressive side of the issue. She told me that I wasn’t making it up. The pain I felt was absolutely real and not just in my head. She believed me.

Finally, it felt like someone was on my side. I wasn’t overreacting; I wasn’t complaining too much about nothing. I wasn’t crazy for acting like I was in pain all of the time because I was in pain all of the time. For a second, I thought since she believed me, she’d tell me how we were going to actually help my pain.

But then the tone shifted. She didn’t believe in prescribing medication for this condition. She said I needed to stop staying home sick just because I was in pain; that wasn’t a valid excuse. And she would not be writing any notes to my school for accommodations, such as not participating in PE if I was in too much pain.

She insisted I was to act like every other student and not tell anyone I was in pain. I wasn’t to receive any “special treatment” for my condition.

Because the truth was that chronic pain was heavily stigmatized and although she believed me, most people weren’t going to. She extended the privilege of giving me a diagnosis that was considered “less stigmatizing.” Instead of “fibromyalgia,” a stereotypical hypochondriac woman’s diagnosis, she wrote in my chart that I had amplified musculoskeletal pain syndrome. Practically synonymous, but with two very different treatment models.

Instead of a referral to a psychiatrist or psychologist, I was referred to a physical therapist. Instead of counseling my unexplainable pain away, convincing my mind the pain wasn’t real, I was prescribed intensive exercise. The goal was to convince my body the pain wasn’t real, by showing my body what real pain felt like.

My doctor’s solution to my debilitating pain was to ignore it and then purposefully put my body in more pain. So then the chronic pain I was experiencing wouldn’t feel so bad in comparison. Didn’t my body get it? Nothing was really wrong with me and it could get so much worse.

I did 12 weeks of walking to physical therapy after school four days per week, where my physical therapist would ask me my pain level for the day and then give me an exercise regimen to exacerbate it. Oh, you feel like you can hardly walk today? Jump on a trampoline on one leg for five minutes. I cried nearly every day I went to physical therapy. And all they told me was to keep going.

I didn’t feel like I was going through any meaningful rehabilitation. I was going through behavior modification and training. Planned ignoring, desensitization, encouraging “expected behaviors” and discouraging “unexpected.” I was expected to force myself to accommodate to my environment, as my environment certainly wasn’t about to accommodate for me.

Imagine if we took that approach for people with common conditions doctors believed in. Oh, you have arthritis in your fingers? Just ignore it and don’t give any accommodations for typing or touchpads because we don’t want to “benefit” the arthritis. We don’t want to give you any insulin for your diabetes or you’ll start to depend on it. Eat normally, don’t tell anyone when ordering at a restaurant, don’t modify your diet for your Crohn’s disease, celiac disease, food allergy. We don’t want to encourage it!

When I put it like that, doesn’t it sound ridiculous?

The difference was that fibromyalgia was still considered a mental condition, was still thought to be “all in your head.” Doctors didn’t understand my pain, so it wasn’t treated like other conditions they did understand. My illness wasn’t visible and didn’t make sense. The only problem they could see was my behavior.

Since my behavior was the problem they could see, that’s the problem they treated. I needed to learn to better control my behavior.

When the world doesn’t accommodate

I see this similar pattern time and time again when talking and working with other autistic people and those with ADHD. We teach the individual that this is just the way society works, the world doesn’t accommodate for them.
We expect the individual to accommodate themself to the world, regardless of their personal needs.

And then when they neglect their personal needs and break down, somehow we’re confused. As if we expected their needs to just go away on their own because we decided not to “indulge” them.

Autism spectrum disorder is not a “mental” condition. An autistic person’s brain doesn’t just adapt into a neurotypical one by holding the same expectations, not acknowledging the autism, and teaching “expected” and “unexpected” behaviors. Asking an autistic person to “mimic” a neurotypical person in their demeanor and body language, tone of voice, lack of specificity, asking questions, doesn’t make the autistic person’s brain adapt to this preferred communication style. It doesn’t just suddenly become natural.

What would happen if we ignored carpal tunnel and did everything with our wrists normally? Would the condition get better or worse? What would happen if someone with Crohn’s disease ate whatever was served to them and didn’t modify their diet? Would the condition get better or worse?

So why do we think autism will work any different?

Who is really benefiting?

Why do we think that teaching an autistic person to ignore their natural autistic characteristics and mimic neurotypical ones is benefiting them?

The harsh truth is, we don’t.

We think that teaching an autistic person to mimic a neurotypical person will benefit us, the people who have to interact with the autistic person. Teaching neurotypical social skills will help an autistic person get a job (because the employer doesn’t need to accommodate), make friends (because peers won’t need to accommodate), do better in school (because teachers won’t need to accommodate).

Ignoring disability and forcing yourself to “be normal” without accommodations that the person needs doesn’t make their condition better, it makes it worse. But convincing an autistic person to mask benefits everyone else, and we think that’s enough.

Storytime continued – the outcome of no “special treatment”

I followed the doctor’s recommendations. I went to school even when it felt impossible. I didn’t tell any of my teachers about my pain. When my peers noticed I was acting strange, like having trouble walking or writing, I minimized and deflected my struggles. I went to physical therapy after school to exercise as if I had no pain. That was the goal. Because somehow all of this was supposed to lessen the pain, make me better. But it only made me worse.

When I failed out of physical therapy, my physical therapist asked me how I felt compared to starting treatment. I admitted that I felt worse. She nodded and told me that was expected.

And she was right. It was expected. Not letting my body rest, making me exert myself harder when my body told me no something’s wrong, and not telling anyone about how awful I felt of course made things worse. That makes sense. My treatment didn’t prioritize me or acknowledge my needs; it prioritized everyone but me. And I was just supposed to accept that.

When I listened to my doctors, parents, teachers, any of the people around me, my mental and physical health worsened because they didn’t understand how to prioritize my needs. I felt like a failure, a burden, and I contemplated suicide as a viable option. I was only 16, and my life felt like it was ending before it could even start.

All because I hadn’t been taught to accommodate myself. And once I started to actually listen to my body, my sensory needs, pay attention to my social battery before it was fully depleted, give myself breaks and rest and grace for not performing “expected” all of the time, once I actually started to accommodate my needs against what everyone told me, I got better.

Basic accommodations saved my life. I’m not exaggerating, and I am not alone in my experience. Read other autistic people’s experiences and you will see the same themes echoed again and again. (Here’s one shared by Neurodivergent Rebel.)

Accommodations are not optional if you want to have healthy autistic people.

Hey you – you can accommodate too!

We are in a position to help change this narrative. To highlight just how important accommodations are.

If an autistic or neurodivergent person “relies” on their accommodations, it’s because they need them. We can’t tell someone else what their needs are, that doesn’t make sense. We don’t live in another person’s body; we don’t experience the world the exact same way someone else does.

There is no one-size-fits-all world, and by narrowing our tolerance of difference, we are limiting so many individuals’ potentials that don’t meet the mold or expectations we’ve set forth.

People don’t thrive in unsafe environments. People don’t thrive when they withdraw and pull away from the world. Accommodations help the disabled person, not hurt. They might inconvenience others, but others’ inconveniences are not more important than a neurodivergent person’s pain.

Accommodating my physical needs when I was in pain saved my life. And failing to accommodate my needs as an autistic person I believe is what gave me the pain in the first place.

If we don’t understand what someone needs, then we need to open our mind and listen. Accommodations start with listening, believing, and then figuring out how to support the person.

So think for a moment. Do you have accommodations built into your space? Do you notice any gaps that you could try to address? Outside of you and your space, is your students’ environment accommodating? And if not, is there something small you could do to make it a little more accommodating?

How can you encourage neurodivergent students to identify their needs and then accommodate or advocate for themselves? These are big questions that don’t have an easy answer, but the more we think on them, the more little efforts we make to be more accommodating, the easier it will become over time.

Your impact may not be immediately obvious, but I can assure you that teaching an autistic person about accommodating their brain differences is one of the most impactful things you can do for your autistic students.

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