Anti-Autistic Ableism in Eating Disorder Treatment

I was in higher level of care eating disorder treatment for over 3 years straight and the ableism I faced was life threatening.

The Truth About Treatment 

Eating Disorder treatment is largely not neurodiversity affirming and this can be dangerous. However, this is not to deter you from going to treatment if you need it. Ableist 

treatment is still better than no treatment at all. This is about spreading awareness and hopefully creating changes in the system.

I’m Erika

This is part of my story. Keep in mind, I’m a fairly low support needs autistic, so this could be much worse for someone with higher support needs.

Ableism in residential treatment centers

•  Multiple treatment centers agreed to my list of accommodations prior to admission but then refused a lot of requests once I admitted.

• I was yelled at at almost every treatment center during a meltdown and was told I could control meltdowns.

• At every place I advocated for a sensory space to reduce meltdowns and it was denied at multiple treatment centers

• A treatment center threatened to kick me out because of my meltdowns and banned me from all other residentials in their chain. I was given a contract that one more meltdown would send me home.

• My therapist walked out on me while I was advocating for myself after they wanted to kick me out for my meltdowns.

• Changed my contract from “inpatient” to “home” because “I couldn’t handle the hospital” even though I would likely die if I went home.

• Got bullied by patients for meltdowns and using a communication card and staff just agreed with them.

Systemic ableism in eating disorder treatment

Eating disorder treatment in general is just not set up to accommodate autistic minds. From the material being taught, to the lack of alone time and breaks, to the meal set up to the complete disregard for accommodations. Change is needed and fast.

How this was life threatening

• Increased SI (had an attempt because of it)

• Focus on autism survival rather than eating disorder recovery (kept me in treatment for 3 years and I strongly believe I would’ve been done much faster if treatment was accommodating). Could have died from my eating disorder in the meantime.

• Sending me home with no support like the contract said would have likely killed me

Conclusion 

I faced a lot of ableism in eating disorder treatment that could have ended my life in various ways. I am a low support needs autistic and I can’t get my needs met. How are higher support needs autistics supposed to get any treatment? Autistic individuals are significantly more likely to develop an eating disorder than the general population yet we don’t have treatment that accommodates us and it’s killing us.