Thursday, September 17, 2015

Am I High or Low Functioning?

Against my better judgement and personal anxiety about being so damned out about all this (close to crying, actually). I posted this in response to people calling autism an epidemic on the page for an autism organization I respect but I'm not naming because it might increase the chance of a flame war on said page:

[content warning: suicidality mention (I'm fine), mention of self-injurious behaviors, bad eating habits due to executive dysfunction, ableism, restraint and seclusion, school, others not specified because it's hard to pinpoint here]

"I've got a question for you all.

I use self-injurious stim to calm down every hour of every day. I stim every second of every day. I have felt suicidal on and off for around two years. I forgot to eat today until 6:00pm--this is a common occurrence. I can't go to a store for more than 5 minutes when I am not the one making decisions about what to buy without having serious sensory issues. I can't go to a store alone because I will have an anxiety attack and a meltdown. I just narrowly avoided a meltdown just 40 minutes ago.

While sometimes very verbal, I can't talk for more than two hours so I mostly communicate on the internet. I can only talk when prompted most of the time. I regularly experience gastro-intestinal issues. Every day at 5:00 in the afternoon or earlier I need to go into a perfectly quite room that is almost completely dark or I will have a meltdown. Until I was 10 years old I wore diapers to bed. Until recently I have made very few friends and almost none of them are 'neurotypical.' Most days I struggle to get out of bed because of a headache caused by serious sensory issues.

I was regularly restrained as a youth and was last restrained when I was 13 years old. I was in special education for all of K-12. I was in a contained special education classroom entirely 2nd and 3rd grade and in at least one class 4-9th in that program. I stopped using a resource room towards the end of 10th grade. I have failed classes because I did not believe I would get necessary and respectful supports/accommodations for my executive dysfunction. I was in the in-patient psychiatric unit when I was seven and a half because my parents "[sic] did not know what to do with me" (their words) and wanted me evaluated. When I was nine years old, I kicked down a seclusion room door.

I am now 18 years old. I am a self-advocate. I have prepared written testimony regularly for school board meetings, state house committees, and state senate committees. I have written proposed policy for my school district. I have met with Governor Inslee at the bill signing for SHB 1240. I founded the Disabled Abled Coalition at my school and was president of the Gay Straight Alliance last year.

So with that in mind, am I high or low functioning?"


  1. I don't know really. We have 8 diagnosed from the severest end to the so called mildest range. i can honestly say we all have issues that needs to be addressed and holds us all back. except that those called high functioning don't get the respect or services they need because we're told we're not as bad off. Well we've had a 19 year old kill himself because it was too much for him. And he was the one called 'high functioning' that was supposed to outlive his more severely affected rother. it didn't happen my kid is considered low functioning but shes happy. she knows who she is and what she wants. the label is more due to society not meeting her needs. and now at age 18 she has 'aged out' of services... What it means to me is society ignoring one autistics issues while holding back another autistic 'for their own good' Doing what they think is best for them and not respecting their nonverbal voices and eliminating their choice. Thus my child is low functioning due to society not wanting to respect her difference. She's only 'low functioning' because she is treated by society as a walking vegetable. I'm not subscribing to that. because it means some autistics will not get the services and supports they need while others will at a cost to their freedom and respect of self. Because my child needs assistance for most of everything they see her as a broken doll. my kid's spirit is stronger than most on any given day. so really though in my eyes she's higher functioning because she doesn't care what they think and does her own thing. it's a matter of perception just because at the present time the majority of society see things in a way it doesn't make it so...

    1. Yes. That is why I don't subscribe to the high functioning/low functioning dichotomy: it is ableist and harms autistic people, particularly those described as "low functioning." I was hoping that my piece would illustrate why the dichotomy is bad, incidentally.

      Anyway, I hope things work out okay for you and your children and I am very sorry for your loss. Suicide affects far too many autistic people and it is tragic. :(

  2. This. Especially the special ed part. I was in special education from pre-K through 12 grade, and I was restrained and put into seclusion. Solidarity, friend.