01/12/2025
I wasn’t going to post this as the photo was originally meant to be shown to my doctor on 12/4. Then I thought about how I never see any posts ever about Catatonia, especially catatonic schizophrenia. Besides one creator on Tiktok who posts about her son, I only see the very old 1940’s black and white videos you’d watch in a psychology class about it.
The only visual information/representation about it primarily being from that era makes it seem like catatonic schizophrenia is a thing of the past.
So I always feel alone and weird as if I’m dealing with something totally bizarre, mysterious and unheard of. So I hope others can feel seen.
The reality is, catatonia is a thing. Not just in schizophrenia, but autistic catatonia too. It can be hard for me to know whether it’s from my autism or schizophrenia. But It’s something that can be really debilitating. And this ties into the post from the other day about Autism being complex and not making assumptions about people just because we can type.
Sure, I am able to work 24 hours a week when I’m at my baseline. But I’ll never be able to work full time. But I also need AAC to communicate during autistic shutdowns and during catatonic episodes where I can’t speak or move my body or have significantly restricted movement. I met with an AT specialist last week to try out different forms of AAC, including using switch, and waiting to hear back on approval.
Episodes can strike at any time. Stress doesn’t help. But it can happen at times I’m feeling neutral or about to do something I’m enjoying.
This photo was from when I was walking to go into a friend’s house. I felt it start when I was outside and I was super wobbly and grabbing onto what I could around me to hold me up but eventually, I lost movement in all my limbs. My legs couldn’t hold me up and I crumpled to the ground. 30 degrees Fahrenheit, face on the cement in an awkward position.
Was out there for about 30 mins. Feeling embarrassed and frustrated. Total brain-body disconnect. And this has been a pattern all month of escalation. It can last hours. Luckily friends helped me that day outside.
I hate the narrative that in disability, we are only disabled by the environment. It’s extremely true that it is immensely that our environment makes it harder, compounds the challenges and disables us further due to barriers from inaccessibility and an inherently hostile world to disabled people that wasn’t built for us. And-the reality is also true that for many disabled people, it is the disability itself that is disabling. It shouldn’t be controversial to say that. Sometimes it’s just frustrating, limiting and excruciating. And it doesn’t mean we are advocating for the medical model of disability approach. We can still embrace Disability Justice and the social model of Disability even when acknowledging that. Ableism makes my life 100x harder. But the catatonia itself has become debilitating and I am currently feeling anxious about it and I’m frustrated that there’s not a lot of support for it.
There’s varying degrees of being motor privileged in the autistic community. Just like varying degrees of speaking. For those of us who have fluctuating control, life can feel frustratingly unpredictable with both the disability itself and the ableism. And there’s autistics with zero motor privilege who are even more vulnerable and experience peak ableism which gets even more dangerous if they are Black or Brown. These are conversations that constantly get overlooked. I am always so scared of when this happens in public. The last thing I want now is for someone to see me and think I am high using substances (which I never have) if I’m standing/slouching weird and can’t talk and call police which could lead to ❄️ being called if someone was on a power trip leaving me totally unable to defend myself. Or G-d forbid if my catalepsy makes me move in a way they “perceive” as about to harm them. So little is known about catatonia. My friend knew to move to stand behind me to block anyone driving by from seeing me to reduce the chances of anyone calling on me.
Please speak out about us. I only see autistics of color or autistic non-speakers who have blogs on social media speak out about these crucial issues and complexities that occur with autism.
Edit to add: Yes I have a medical bracelet and yes epileptic seizures were ruled out last year. 🙂
