Uh oh… Now I’ve done it! Just by choice of title I am stirring up a hornet’s nest. I may have just offended lots of people, simply because I acknowledged the labels low-functioning autism and high-functioning autism. I have been special-needs parenting for nearly 30 years, and what follows is my perspective and opinion on this topic.
Jess and I have lived through a ‘label’ controversy, so I understand the general problem. She was labeled as “Moderately Intellectually Disabled” when she was 6-years-old, based on an unfair and inappropriate evaluation. For the rest of her school career, I didn’t fight the label as much as I fought to try to get people to believe in her potential.
In a transition planning meeting during Jessica’s last year of high school (2009), someone at the table who did not know Jessica very well directly asked me what sounded like a simple question, “Is Jessica high-functioning?” I was stunned, embarrassed, and unprepared to answer this question. I felt ignorant because I didn’t know what that meant. Somewhere, I had read the terminology high-functioning autism, but I didn’t know what it meant.
I left that meeting determined to learn about it so that I had an answer the next time it came up. What I discovered was that it was all clear as mud.
Let’s Start with This. Low-Functioning Autism and High-Functioning Autism :
- are not diagnoses
- are not medical terms
They are descriptions. The terms low-functioning autism and high-functioning autism are not clearly defined. Not only are they not CLEARLY defined, they are barely defined at all. In essence, the use of those labels is entirely subjective.
Before I Elaborate On My Own Position On This Topic, I Am Compelled To Share This…
As I was reading various sources in preparation for this post, I found an article that was genuinely upsetting. The author repeatedly described parents who use the low-functioning label as “ableist.”
Okay, honestly, I had to look up the definition of ableist. Ableism is “discrimination and social prejudice against people with disabilities.”
Wait….hmmm…should I take a moment here to reflect on whether or not I am ableist?
Hell no I don’t!! What a laugh, as anyone who knows me knows that I am not an ableist.
That author goes on to say, then continually implicate that parents who use the term “low-functioning” have less love for their child, and don’t love their child unconditionally. The author infers that using a label such as low-functioning autism is a reflection of the parents value of the child’s life. To this I say a great big ole POPPYCOCK.
The Irony Of The Entire Article Is That The Author Is Being An Ableist.
The author’s persistent assumption is that those parents who are willing to openly describe their child as low-functioning are placing a lower value on their child as a human being. Why would the author even begin to believe that, unless it is because the author himself places a lower value on human beings that are lower functioning? That is what I read between the lines, anyway. In my opinion, that author is incapable of differentiating between labels and value – two completely different things.
Why Is It Offensive To Others When I Acknowledge My Own Child As Lower Functioning?
I have to wonder why this author, as well as other parents, are “offended” when people like me use the terms low-functioning autism or high-functioning autism? Is it because they don’t want their own child to be compared to my lower-functioning child’s label? Is their child higher functioning than my lower functioning labeled child?
Maybe I should be offended that someone else is offended that I am comfortable describing my own child as lower functioning. I am most definitely offended that someone would accuse me of being ableist, of not valuing my child as a human being, and of not loving unconditionally.
Or, maybe the root of their being offended is because they can’t compare their child to their own inner picture of what high-functioning autism must look like, but they know they don’t want it to look like our low-functioning autism. Could it be that they are fighting for high-functioning autism to look more like their child?
No, I really don’t think so.
Those parents are fighting for their child’s future to not be pre-determined by others. That is a fair, good, and important fight.
I Choose To Use A Label In Combination with Jessica’s Diagnosis.
It was intentional, conscious, deliberate, and had to be timed just right. It couldn’t be before my ‘yes she can, yes she can’ fight ended. When time was winding down during her transition planning years, we weren’t anywhere near where I had always believed and dreamed we would be. Someone wise told me that it was time to stop fighting the labels because those labels were going to serve an important purpose. Even though I completely trusted this person, letting go of that fight was difficult and disheartening. It felt like a giant defeat, like I was a traitor.
What was that important purpose? SERVICES – plain and simple. To qualify for the services we needed after transition from high school, I needed to embrace the labels and say, yes, we need this service because….
It was an uncomfortable thing, accepting those labels. During interviews for services, it initially felt so weird to verbally say all of the she can’t this and she can’t that. What I learned over time is that outsiders only have a teenie tiny little window to look through. At a glance, Jess can seem considerably more capable (functional) than she really is. Giving an open, honest, and in-depth description of her disabilities was way more important than explaining what I believe to be her potential. Her potential and her functional level do not match up.
Autism Awareness. It needs to happen. People are curious. It is okay to answer their questions. Yes, an autism diagnosis is an autism diagnosis. All families living with autism know that it is hard no matter what skill set comes with it. If we as parents are going to help promote the breadth of autism awareness as it should be, we cannot just have the mantra that ‘autism is autism’ because we are afraid of labels.
“Autism is autism” does not describe autism. That does not explain autism. That does not teach the world anything. It actually promotes the very wrong perception that if you know one person with autism, you know what autism is like.
There are many autism blogs out there and lots on social media dedicated to promoting autism awareness, most of which I cannot relate to. I recently explained my own reasons for blogging. Where are the news stories, social media spotlights, etc., on low-functioning autism, especially as it relates to aging out of high school? What about stories of those young adults getting lost in the system, about the lack of available services, not to mention a lack of money? What is happening as these adults transition and disappear into the abyss that is the real world?
And Finally, Reason #3
Hold on to your britches…This is going to be shocking to some. Jess is lower functioning.
She is. As compared to what? My personal reference is as compared to a typical peer. Want to know what the key word is in all of this? Function. It’s used as a verb.
1. to work or operate in a proper or particular way.
Jessica can speak, but she can’t read or write, can’t prepare a meal, and can’t independently shower herself or brush her teeth. Jess can’t independently function in daily living, and she can’t “blend in” in a social situation.
I am into realism.
Describing Jess as lower functioning is my version of promoting autism awareness. Since every autistic person is unique in their abilities and being, I can only promote an awareness of Jessica’s own presentation of autism. I am 100% entitled to describe her as lower functioning. It’s okay if others don’t approve. I’m sorry for others if they interpret this as offensive. Everyone is entitled to their own opinion.
Lastly, I Circle Back Around
Remember I said I’ve been living this life for 30 years? Remember that I fought against a label and lost? Did that label affect the outcome of Jessica’s education? Yes, absolutely and without a doubt. To this day I still know I was right and they were wrong.
If I were a parent of a younger child, I would fight the label of low-functioning autism for my child. Today, that would be the same fight as where I was when Jess was labeled Moderately Intellectually Disabled. Children with autism can continue to develop communication. Some can develop the ability to speak and some will gain positive ground socially, etc. When Jess was still in school, she never stopped learning. Her learning curve continued to go up, as did others’ in her class.
But, I certainly wouldn’t find it offensive if someone else chose to describe their own child one way or the other. That’s their own business, whether they are facing reality head-on or sticking their heads in the sand.