In this life I am missing the ability to go out into the world and just be accepted for my natural autistic self. I must inhibit so many of my natural responses just to fit in enough for others to allow me a place in the world. I have discovered that to have a place in this world I need to fit into it in a way that makes sense to the majority. For me, this isn’t a good or a bad thing – just merely the way it is. Fitting into the world is something I need to balance with the essence of my being so as to come out in the most positive manner possible.
A few years ago I took a pottery class for adults – not disabled adults – just plain ordinary adults. I explained my obvious-at-the-time movement differences in terms of my autism. Several weeks later out of the blue, a fellow potter asked, “So Judy, are you high-functioning?”
In the context of working on my hand built sculpture, surrounded by others using potter’s wheels I replied, “Some days. And you?”
My question was never answered. Only silence followed. It wasn’t until I was on my way home that I figured out the question was meant to be in reference to my autism – not to my sculpture building abilities!
Many times when I disclose my autism the first question I am asked is whether I am high-functioning or low-functioning. People are not at all meaning to be rude, but rather, just trying to understand what they think is important about me.
In reality high-functioning and low-functioning are not real labels, having no definition, no skill set lists, and no diagnostic criteria. Yet these words are often used to determine opportunities that will be denied or extended to an autistic and in assigning the correct amount of personal responsibility and blame to an autistic for the way his autism plays out in everyday life.
Even though high-functioning is not a real thing and even though I am embarrassed to admit this, I would rather be seen as high-functioning than as low-functioning as this somehow has come to mean that others see me as a better human being. I have discovered the more I can look like a neuro-majority person the more opportunities I am given in life.
I now manage my own business that includes quite a bit of traveling and public speaking. By planning several days of quiet downtime before traveling I am able to inhibit my natural tendencies and perform for up to several days at a time. While this is great in that it enables me to be a financially independent human being, it also makes me to understand that the real of me is largely unacceptable in society at large.
This real of me is nothing more than my low-functioning ways! Some of my friends tell me that I do not need to inhibit my natural self when I am with them. For these friends who tolerate the real of me – even though they want to tolerate it – it is difficult for them. In addition, I have learned along the way that if I take them up on their offer that they, in turn, will limit their time with me because my natural ways exhaust and drain them. They are not bad people – it is simply the way their neurology as a neuro-majority person plays out for them.
To me this is one of the hardest things about autism. It is hard for everyone. And yet, I have some real friends in this life. Together, we tend to adore each other’s essence – that “stuff” that makes us who we are – while working out the challenges that physical proximity often brings to our friendship. We may not always look like typical friends, but we connect by the steel-strong threads that run between our souls. It is this connection that makes the meaningfulness in our friendship rather than our outward social graces.
So, high-functioning or low-functioning? It is often the first question asked when my autism is disclosed. I now answer, “Yes, I am.” It is the truth and it weeds out the interested masses from a future potential friend!
Suggestions for Supporting a Child to Fit In While Valuing Who He Is
Implement planned down time before outings or events where your child will be required to be around others.
Think through options of how your child might “fit in” so that he is more likely to succeed in a variety of ways rather than to fail if he is not able to act as the world expects.
Example: At a family gathering options might include
1) being in the main area of the house interacting with the guests,
2) sitting off to the side in the main area of the house playing on his iPad
3) inviting one cousin to play iPad games on the extraiPad in the den that has been closed off to guests.
Provide opportunities for your child to participate in social events that are neurologically friendly to him such as visiting a sensory friendly Santa or going to sensory friendly movie theater. The idea is to balance the “fitting in” with times of honoring who he is, setting up enjoyable opportunities that don’t include the challenges that make it difficult for him to fit in with crowds.
Remember being social is not rewarding in and of it self for most autistics. It is hard work. Consider rewarding this as you would reward any accomplishment of hard work.
Provide access to other children on the spectrum so your child can experience a sense of community while free to be himself.
Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.
Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing
JUDY ENDOW, MSW
Judy Endow, MSW is an autistic author, artist and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.
[…] (text) chatting with an Autistic friend a while back about how some of our abilities can make us appear to be far more functional to others than we actually are because we do some things that most people would find difficult to […]
[…] are not disordered. But what does “function” mean? Dr. Baron-Cohen has gone one step beyond the “high functioning/low functioning” paradigm that the Neurodiversity Movement so strenuously speaks against and straight into […]
Thank you for your insight Judy. I’d love to link your page and quote you in my own blog http://www.making-connections.com. I am a new blogger starting to blog about my research and experiences as a PhD student. Best wishes.
[…] and articles written by Autistics about how utterly wrong “functioning labels” are. How inaccurate. Why we generally don’t like them. Responding with a functioning label-based observation is […]
[…] Many people have written more about problems with functioning labels. […]
I completely understand your options. With my son we gave him options at every event, family or not, because we loved having him participate in everything with us. Functioning labels are not as important as ability to function. I would rather discuss abilities rather than a persons functioning level. I don’t believe in predictions of a humans abilities. For instance, someone on the spectrum not being able to be empathetic. Or always uncoordinated or unable to communicate. As humans, we all have brains that can change, rewire and abilities that no one could ever imagine. Nature vs. nuture? Miracles? Maybe. I’ve witnessed it. I was told my son would never speak, interact with others or hold a job. TOTALLY incorrect. He not only speaks, has a long time girl friend, they have a beautiful 2 year old son, has a driver’s license, holds a full time job, plus works additional hours and jobs when he has the time. He is emotionally and financially supportive of his family. A fantastic father. An unbelievable father and significant other. I could not be more proud of the incredable work he’s done. Live life. Push the limits. Challenge your son. Labels are not important. Life, open acceptance, unconditional love and knowing what we need at the time are the most important things we can offer…anyone.
I love your suggestions for giving and autistic child options at a family gathering. I wish I’d been given options like that as an autistic child.
Question: If you reject functioning labels, what terminology do you think should be used to differentiate between people like me and my daughter who are relatively independent, hight verbal and with high cognitive abilities, and my son who speaks in two word sentences, has the cognitive ability of a three year old (he always will) despite being 11, and who will always need constant supervision to keep him safe? Our autism displays in such drastically different ways. Now that they’ve taken “Aspergers” out of use, there is no way to make it clear what we’re describing.
Thanks Judy. More pls
This is fabulous! Thank you, Judy Endow <3