I learned I was Autistic at the age of 29, after almost thirty years of struggling in life and not knowing why I struggled with things that people around me often took for granted.
When you have a hard time with the easy things, it’s difficult to appreciate your accomplishments because you can become overly focused on what you can’t do and bogged down, unable to shift your perspective in the direction of the possibilities.
Growing up, I was the kid with bad handwriting, picked last in sports, who couldn’t pay attention or sit still. I learned to tie my shoes late, couldn’t read the analog clock on the classroom wall, struggled to learn to ride a bicycle, and didn’t have many friends because I was the “weird kid” the other kids often would avoid like the plague.
Even as an adult, I still struggle to read analog clocks, often appear scattered and clumsy, and avoid tying my shoes whenever possible. Still, my life and its circumstances have improved considerably throughout the years.
Since learning the truth, I now understand that I am Neurodivergent (ADHD Autistic), and my diverse mind is not bad. It explained my struggles, strengths, and weaknesses. I’ve also grown to no longer care if people “pick me” for things – because I now have the confidence to pick myself.
The diagnosis even explained why I’d been called so many names throughout my life (freak, weird, twitchy witchy, stubborn, lazy, difficult, rebellious, unacceptable, not good enough) and took them all away.
“Finding out I was Autistic revolutionized how I saw myself because I no longer viewed my existence through the lens of being a broken non-Autistic person.”
It explained so much, validated my struggles, and gave me to key to reshape my life moving forward.
I wanted to scream this newfound piece of information from the rooftops. Still, when I tried to share this part of myself with others, I was met with invalidating comments like “You must be very high functioning.” These comments instantly undermined all pain, work, and effort that had gone into creating the version of me that exists today.
I’ve had to work hard, overcome obstacles, and fight to become this person. I’m proud of the person I’ve fought to evolve, and the statement that I “must be very high functioning” completely dismisses the work I have done.
Sure, I’m functioning well now, but there have been times in my life where I can’t leave the house due to sensory overload. Suppose any of my co-occurring health or mental health conditions arise—In that case, I can very suddenly become someone whose ability to function as expected in the Neurotypical world could quickly come into question.
Autistic functioning fluctuates, often depending on several factors. How can you judge me on my best day, and claim the hard times don’t exist, especially if you’ve never been with me when I’m at my worst?
On the flip side of this, Autistic People may also be deemed by society as “low functioning” because of their inabilities to thrive in Neurotypical society in the traditionally expected ways unsupported. Often these Autistic people have additional conditions, on top of being Autistic, that complicate their lives more greatly.
“When people label Autistic people as low functioning, others often only focus their attention on the Autistic person’s deficits and define the person based on their perceived shortcomings–preventing discussion of their strengths and capabilities.”
Autism isn’t a linear spectrum from more Autistic to less Autistic. The Autism Spectrum has more dimensions to it. It is vast and expansive, depending on our sensory profiles, communication support needs, motor control ability, intellectual capacities. The spectrum also expands around the additional co-occurring health conditions that many of us have, in addition to being Autistic (Epilepsy, Insomnia, Digestive Distress, EDS, other mental health issues such as anxiety, depression, and OCD).
All of these things and the amount of support and expectations in an Autistic person’s life can heavily influence that person’s individual ability to function in society.
To use me as an example, I’m doing VERY well at this moment in my life because I am fully supported, playing to my strengths, and no longer pushing myself to be and do things that don’t suit me.
I would start to decline if you were to remove the supports and accommodations I now have in place in my perfectly designed Autistic lifestyle and send me back to an open office with an overwhelming sensory environment. I would develop headaches, migraines, and my IBS would flare up.
My anxiety disorders would likely also show themselves in full force, wreaking havoc on my self-esteem. Eventually, the seizures will return, especially if there’s fluorescent lighting in my workspace. My cognitive and communication abilities will slip, and I will fall apart, unable to support myself or engage in daily life activities. I would likely eventually stop leaving the house altogether if things get bad enough.
How do I know? Because it has happened before, over and over again, starting at a young age.
I only stopped the cycle with myself when I learned the truth about my neurodivergence, allowing me to throw out my neurotypical lifestyle and start living appropriately and authentically.
Always curious to know what my peers think, I ask the community my question:
Do you feel functioning labels are problematic? If so, why?
It’s so situation dependent. I’m “high functioning” because I can hold down a job. But I happen to be in a field that naturally is a bit more accommodating to my needs. If I had to work in a different field there is no way I could function. – Elizabeth Lain, @LizardEatsFlies
Yes. They are an arbitrary, impersonal, and ineffective attempt to categorize people. That only serve to perpetuate stereotypes and misrepresentation. – Lulu Larcenciel, @FunFactsLulu
Yes. Because we all function. It makes us sound like useless machines instead of human beings. Not to mention the fact that neurotypical brains cannot wrap their heads around the fact that whether or not we can speak does not determine all of capabilities. – @slimdote
Some so called professional decides which labels someone gets based on a short interaction. Just like persons with neurotypicalism don’t always have the same amount of energy to perform in their lives, we don’t either. Energy fluctuates, good/bad days. – Anna, @Unuhinuii
It provides comfort when ignoring the labelled person. If we accept the low functioning then it’s a reason to ignore abilities. If we accept the high functioning then it’s a reason to ignore disabilities. – ISpecter, @ispecter3
They fluctuate. I’m going to be high functioning one day and high support needs the next and they need to respect that. One person’s trash environment can be another’s treasured environment. No one gets this. – Beatrice Butcher
Absolutely – they only describe what other people see of that particular autistic person, and only in that particular moment in time. It then affects the help, support and belief in that autistic person as though they are a static thing. Just isnt true. – Lydian
“You are so gifted, skilled and intelligent. Why can’t you just … “. That’s, for me, the essence of what people understand as high-functioning. You’re just lazy and arrogant because you’re so gifted, right? Damn you! – Mattie, @RealMathead
They remind me of the Neil’s Bohr atomic model in that they were fair attempts to describe complex behavior for which we had no previously working model. They can be helpful to understand theoretically, but ultimately they are wrong when taken literally. – Ella, @EllaKuhn7
Yes. They are simply inaccurate. No one is more autistic than someone else. – Storee Lee Powell, @missrusset2006
Absolutely. They are degrading & dehumanizing. Humans shouldn’t be labeled on what others perceive as “functionality”. It can all depend on too many variables & can change through the day, (not exclusive to being Autistic). Our value shouldn’t be based on another’s perception. – Ashe W., @SteelWolfKweeng
Yes & No. Yes in their current usage – dividing people into set groups. No in that I think there could be a wider use on how it’s a/effecting you that day, are you functioning well (high) or not so well (low) because no two days are going to go the same way – @Autisticosaurus
They are problematic because they aren’t actually as an assessment of the autistic person. It is purely a basis on how said autistic person effects the allistics in their life. I can memorize a whole script for work, but I sometimes forget to rinse my hair in the shower. – Ipiluni, @ipiluni
Yes, because the label seems to equate to how much dignity & respect is required to be given a person. Functioning Labels don’t really convey any useful or consistent information that will benefit an individual. @christinebowsor