Sorry for the hiatus; on a positive note, this a perfect time for a post about the concept of “functioning” regarding Autism.
*I will no longer refer to nonAutistics as NT or Neurotypical as I feel like this is almost becoming a slur.
As mentioned before, I do not support functioning labels. I believe they are insulting to those who are perceived as lower functioning, and dismissive to those who are perceived as higher functioning. There is a great divide in the Autism community that is perpetuated by these ridiculous labels. Recently, I saw many of the opinions on a Facebook thread with a video titled “Do you believe the spectrum is too wide”?
Pretty vitriolic “support”, am I right?
If you are a member of these Autism Facebook communities, I can only recommend you stay far away from the comments section.
Who determines this functioning scale? Is it a number system? Is there a severity chart like the ER Doctor shows you? Point to where you lie on the scale folks.
This idea is known as ableism in the disability community. It is a form of discrimination and prejudice against those with a disability. The most infuriating thing is, it is happening within the community. To be perfectly honest, I have never seen it between one Autistic and another. I have only experienced this thinking from parents of Autistics or those without Autism against those with Autism.
You have probably watched one of my videos if you are reading this blog. Do I not present as a perfectly functional woman with high verbal skills? I hope I present as well put together, with my clothing clean and wrinkle free and my hair and makeup as perfect as possible.
Welcome to my world of pretend, ladies and gentlemen. You will never see me disheveled. I have never left my house disheveled. You will never see me meltdown. You will never see a breakdown. You will never see the Autistic me. My husband has that pleasure, bless his heart. How lucky am I that I found someone that loves me unconditionally, even at my worst. I am thankful everyday.
You see, the world doesn’t accept differences. My “glitches” have slipped many times, but I’m sure they were brushed off as drama or bitchiness. Like I’ve said before, I learned how to present myself as “normal” in the hospital.
Does this mean I am “high-functioning”? NO. My life is a flowchart of ups and downs. Sometimes, I have my shit together. Sometimes, I don’t.
Currently, I don’t. I feel like it is cyclic. I spend all my energy trying to not “fail” at being normal and successful and every three months, I break. I have no energy left. I become unable to hold back my mood. I throw tantrums for no reason. I ruin dates with my husband because the music is too loud and the lights are too bright. My patience is nothing and I am so frustrated by my surroundings and I vent it constantly. I stop going to my classes and my schoolwork does not get done. All that work I completed at the beginning of my semester is threatened because I am unable to form cohesive thoughts or find the cognitive energy that I need to take a simple quiz or write a paragraph. Personal hygiene is nonexistant. I either forget to eat, or can’t find the motivation or want to eat. I need my husband to drive me places.
Is this what high-functioning is? As a non-verbal child, was I functioning? Are we really even capable of understanding levels of functioning in Autistics that are not adults? How can a parent of a four year old Autistic know the level of functioning that child will have years from now? Why do they insist that their children will never accomplish anything because at this moment, they are not reaching the same milestones as other children their age.
I am in the middle of IQ testing. While I excel at crystalized intelligence, I am way below average in fluid intelligence. Is my low IQ score indicative of my functioning level?
I cannot live independently. I have not held down employment in over five years and rely on my husband for financial security.
What is support, and what are the level guidelines? What of those adult Autistics that fluctuate in their need for support, like myself? My husband believes I am lower functioning. Am I surprised?
The truth is, being verbal is not indicative of severity. Many nonverbal Autistics are able to communicate using technology. IQ is not indicative of severity. Many Autistics score low on conventional IQ tests, but excel at specialized IQ tests.
Strangers are not able to determine my level of functioning. I can. No one has the right to tell me that because I “appear” higher functioning, I don’t have it “as bad” as someone who appears lower functioning.
Pain is subjective. Life experience is subjective. We don’t need these functioning labels in conversation. They are only necessary to our specialists and the agencies we seek services and support from. We need to stop introducing them into conversations in the community because it is preventing the community from being supportive of one another.