Hello readers,
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.
The Light Is Too Loud 
My sentiments exactly. Great post! I wasn’t that familiar with the bizarre phenomenon as I haven’t followed the same pages on facebook, but I have come across some of the disagreement and objections about asberger. I have, however, followed NLD-pages and I have a feeling there are similar attitudes there as well. I have come across NLDers that got a bit agitated when someone in the forum suggested that NLD might be inside the spectrum. A couple of the members acted like that was a horrible thing to say, as if people on the spectum had a lower value. I agree that it’s not a good thing to label people, especially when it’s used in a negative way, and what other motivation could there be to exclude someone from the club or refuse to become a part of it? It would make sense for me to identify with someone on the spectrum. It seems to me that aspies and NLDers have the same traits, and experience the world much in the same way. 80 % of aspies have NLD too (suggested by studies done at Yale), and I wonder if I might be one of them. I know there are some people out there that have self-diagnosed. I don’t want to do that, so I only present myelf as an NLDer for now, but I hope to get a new evaluation from a neuropsychologist.
Right now I don’t understand how I came through college. I was very motivated and worked hard, but I’m so far from that today. I don’t seem to have any cognitive skills at all at the moment. I love writing, and that sort of keeps me going, but everything else seems to be gone. I have always been a very slow reader, but I still loved it. Sadly my motivation for it seems to have vanished. Writing and jig saw puzzles is about all that works now.
I started a 12 week test at a sheltered workshop about a month ago (the idea is to expose me to the things I find difficult). They seem to have problems understanding my challenges. Even my doctor thinks that since I managed to get through college I shouldn’t have any problems working, but I still can’t keep a job. So I know about different levels of functioning.
Glad to see you are back with some strong opinions. Hope school is going better. Just out of curiosity. I’ve had issues all my life, but was diagnosed with NLD long after I had finished college. If I had asked the professors for help, like extended time on assignments, they probably wouldn’t have agreed as NLD is still highly unofficial. How is it in your case? Is there any help for students with an autism spectrum disorder? Maybe this comment was a bit on the long side. Sorry about that. Guess there was a lot of resonation in this post.
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The worst aspect of having an invisible disability is managing to accomplish things, like a college degree, and then having your functioning level questioned.
College and work are two different demons. Much of my time in college is spent without interactions, and the majority of my schoolwork being completed in the comfort of my own home. It isn’t as demanding as a job environment.
I am registered with the Office of Disabilities and have been for the past three years. I was diagnosed with Generalized Anxiety Disorder before this diagnosis, and I qualified for accommodations. They have changed much throughout the years.
When I first started school I had: double testing time for all testing in a private room in the disabilities office, alternate assignments for group work, and I had my Speech class wavered.
Currently, I do not have alternate assignments for group work because I have science labs and it is against regulations to work by yourself. I still have extended proctored testing. I have just been approved for noise isolation headphones. I also am considering extended time for assignments.
Professors are not allowed to call in me in class.
Any student with a documented disability in the United States has access to these and many more accommodations. You can have a note taker as well.
I really think you may benefit from seeing a specialist, or even a Clinical Psychologist. Do you have these things available to you?
I completely understand the cognitive fog you’re in. I dabble in different hobbies constantly, trying to find something to occupy my time and give me happiness to replace cognitive activities I am not able to do.
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Many good points to think about in this post. Just going to throw in my perspectives here as the mom of an autistic son. The idea that autism can fluctuate throughout life is a new concept to me. When my son was diagnosed about 6 weeks ago, MDs told me his level of function would be fairly consistent throughout his life. Since my son is at a low functioning point right now (he’s only three) I was thinking “that’s it, it’s never going to get better.” It wasn’t until I started reading the stories of adult autistics, like you, that I began to see how things DO fluctuate for them. How different situations bring on different problems for people with ASD, and how sometimes they find ways to cope very well…one cannot exactly know how they’re going to do on the continuum of life.
In some ways this is a similar experience to when I was diagnosed with RA. Doctors gave me their perspective on what RA was…while they were right about the clinical aspects of it, they were totally wrong about what it is like to live with RA. It was the people who had RA who taught me what I needed to know. Which is why I believe adults living with ASD will help me be the best parent to my son.
And dang, stay away from those negative, nasty arguments on ASD. I too have been taken down emotionally by them.
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I think early intervention is an amazing tool, and you have an early diagnosis. Now is the time to work on life skills and communication. If your child isn’t verbally communicating, maybe he would benefit from a computer tablet? Maybe even flashcards or hand signals?
Have you considered headphones for his sensory issues? He might suffer less tantrums if his sensory input is limited.
Our brains are constantly developing and creating new synapses, and I find it ridiculous that one can assume a toddler will be the same throughout their life. Yes, he will always be Autistic, but coping skills and life skills are what will allow him to have a somewhat functional life.
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This is unrelated to your post, but I have to tell you how much I love the lobotomy image you use to headline your blog. I was a psych nurse for many years and get a kick out of the fact that people even know what a lobotomy is anymore…though of course a lobotomy in real life is NOT a funny thing. I wouldn’t think a lot of younger people would have any idea the word refers to a procedure where a scalpel is stuck in your brain and twisted around. Yeah, that was some bad medicine in the psychiatric days of old. BAD MEDICINE. Brilliant blog header though!
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I love old medical procedures.
This image is from The American Journal Of Psychiatry Vol 105 No 10 1949.
I honestly can’t think of one procedure that is more barbaric. The history of the man who made them popular is very interesting. He basically got caught up in the fame and treated them like magic tricks.
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I do know the story of the guy behind the lobotomies….ugh, it’s a sad, sick story. Not to mention the horror he inflicted on his patients! Sometimes when people try to discredit the field of psychiatry they mention lobotomies and it always makes me cringe, because it’s such an ugly truth in the history of the profession.
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