What It Means To Have High-Functioning Autism
Jack, you have something called high-functioning autism.
This is very, very good.
At thirteen, you talk.
You can bathe yourself, and pick out your own clothes, and pack your lunch for school.
You can go to a restaurant, and order from the menu, and for the most part—if it’s been a calm day and the lights aren’t too bright and it’s pretty quiet—you sit in your seat and eat it.
You bake cupcakes, and boil water for soup, and stack the dishes in the dishwasher.
The other day I looked up what high-functioning autism actually means, because after all this time, I still wasn’t sure.
High-functioning autism (HFA) is a term applied to people with autism who are deemed to be cognitively “higher functioning” (with an IQ of 70 or greater) than other people with autism. Individuals with HFA may exhibit deficits in areas of communication, emotion recognition and expression, and social interaction.
This right here, this is what you might call the bare bones of high-functioning autism. It’s the outline, the sketch, the black-and-and-white version of a boy. But we all know there’s a little more to it.
It’s a play date with lots of toddlers, except one toddler insists on playing with the vacuum in an obsessive, compulsive way that makes all the other parents shift their eyes and look down at their feet.
It’s a mother’s deep longing to wrap herself around her boy and hiss that it’s okay, what’s the big deal, lots of two-year olds like vacuums.
It’s a lonely, tear-filled car ride home.
It’s cringing during Thanksgiving dinner, when a 10-year old boy keeps interrupting everyone to talk about all the features on a Toyota Sequoia, even though no else one is talking about cars.
It’s a seemingly normal exterior, wrapped around a tender combination of anxiety, social missteps, and obsessive behavior.
April is Autism Awareness month. Did you know that, Jack-a-boo?
I’m not sure when it started exactly, but lots of families put blue lights on their houses and wear special t-shirts with ribbons on them. You know, the ribbon that looks like it’s made out of puzzle pieces.
We’ve never change the lights on our house to blue. We don’t have any t-shirts. In fact, we’ve never done anything at all to celebrate Autism Awareness Month. I don’t know why. I think one year I looked around for a blue light bulb but I couldn’t find one so I just gave up on the idea.
This year, I realized that in the onslaught of articles and ribbons and shades of blue, I almost forgot about you.
Yes, you. My son. My complicated child, my early-morning-waker, my cupcake-baker, my Toyota-talker.
After all, you are the one with autism.
I mean, I never actually forget about you. That’s nearly impossible. If anything, you are the tympani of my waking day, the drumbeat of my heart, the whistle of the wind as it blows through the trees.
The thing is, I spend three hundred and sixty five days a year, seven days a week, explaining autism to the world around us.
Oh, Jack? He has autism. You just have to give him a little extra time to answer you.
Jack? Yes, he’s making great progress, thank you.
I know, he does look, um, normal, sometimes.
When I’m not explaining the particulars of the spectrum disorder—the rigidity and the anxiety and the medication and all of that—I’m telling people how we feel about it.
Oh, the humming? Well, you get used to it.
Why, yes! He does know a lot about Toyotas! It’s very, uh, exciting.
Well, you just kind of make peace with it. You know, after a few years.
I never tell them how you feel about it. Because I don’t know.
Okay, that’s not true. I have an idea about how you feel about it. If I had to guess, I would say you feel like you have one foot in the regular old ordinary world, and one foot balanced upon the spectrum’s bell curve. You are struggling to keep from sliding.
It’s a slippery slope, this high-functioning business. And when I picture you as an adult, the reality of your diagnosis hits me like a ton of bricks.
Every day, someone will find you annoying, or weird.
Every day, someone will think you are dumb.
Every day, you will feel as though you don’t belong.
Every day, you will be misunderstood.
When it comes to high-functioning autism, there is a cost. There is no currency to measure the price you pay–the price of knowing people think you are annoying, or weird, or dumb. The price of feeling as if you will never belong.
I’m scared now, Jack. I’m probably more scared than I’ve ever been.
It’s not a scary feeling like when we go to the movies and I jump out of my seat, or the time Daddy came up behind me and startled me. It’s a slow tingle, almost a burn, which spreads throughout my body every now and again.
Can you feel it? Can you feel the panic radiating off my skin like the rays of the sun?
It’s like we are standing in the lobby of a very tall building. We are waiting for the elevator, craning our necks and looking up at all of the floors above us, and they’re all labeled with the usual stops for the average person without a diagnosis—a regular trip to the happily-ever-after.
But you may not stop on every floor. This spectrum elevator we’re riding, well, it just might slow to a crawl at some spots, and skip other levels altogether.
Daddy and I, we always thought you would make each stop, or at least most of them. We really did. Even when you were a small, chubby toddler who played with the vacuum for hours, we thought this would all turn out okay in the end.
It’s only now, on the cusp of your fourteenth birthday, that we are beginning to realize how different the ending may be after all.
I’m starting to let go of all the things I previously held so close to my heart–the dreams and goals and visions I imagined all these years. This is very, very hard for me. It might take me some time.
I want you to know this: letting go does not mean I am giving up on you.
Did you hear me? I’ll say it again. Letting go does not mean I am giving up on you.
I will never give up on you.
You—my eternal child, my tentative boy, my hopeful son.
You aren’t dumb.
You aren’t weird.
Behind you is a family.
And you belong to us.
There is more than one way to climb to the top of a building.
Happy autism awareness month, my Jack-a-boo.
April 23, 2018 @ 11:32 am
Enjoy reading your blog but so sorry that you need to write it because of Jack’s “issue”. I can relate to a small degree as my grandson has severe Tactile Sensory Processing Disorder. He can only wear crocs, never any socks or underwear. His Mom has to cut all necklines out of his shirts (we call it the off the shoulder look) and wears only one pair of shorts that must be washed each night. His speech is also affected by the disorder and he does not like hugging. We love him dearly and pray that as time goes by (he is 10) he will learn to deal with it in his own way. Prayers for all the children and parents dealing with the frustrations of these ailments.
April 23, 2018 @ 12:14 pm
I really don’t explain my child to a lot of people anymore (unless I am talking to her teachers and it is necessary to help them understand some of my child’s inner experiences and sensitivities). But I don’t explain my child when she is having a hard time in a world that is not made for her or when she is just being her unique self.
If people judge me for my child having a hard time, I judge them for being ignorant and unempathetic and for playing such a big role in the societal barriers that disable my child.
However, I am trying to really explain the neurotypical world to my child. I explain that there are many beautiful things in that world, but also so much that is unfair. Sadly, the neurotypical world has a tendency to group, to form cliques, to other, to exclude, and discriminate.
All of us are subject to misunderstanding and rejection all the time. I am pretty sure many neurotypical adults have excellent filters, but that does not mean that neurotypical individuals are not judging and excluding us, even when we meet all the criteria for what is considered socially desirable.
No explaining about any one group is going to change that in a significant way. It is one of the biggest flaws of neurotypicality: The intense need to belong and the tendency to misunderstand and exclude.
When someone’s mind is closed to someone else’s plight, it is hard not only to open their eyes, but also to prevent that they eventually fall back into their usual ways of thinking. The energy to do so is usually better spent elsewhere. Life-long biases, especially when subconscious, take a lot of introspection and self-reflection to overcome.
Why not celebrate the unique interests of our children? Why is an excited monologue about Toyota not socially acceptable while droning on about baseball or one’s child’s achievements in school or about politics, is perfectly accepted?
It really, truly helped me to reach out to autistic adults (via their blogs and fb pages) because it quickly became evident that a happy, fulfilling life and autism are not mutually exclusive. It became clear that focusing on potential negative long-term outcomes creates fear and panic, both of which sadly tend to be terribly contagious and tend to make it harder to figure out the most optimal path to a happy, fulfilling future for one’s child.
April 23, 2018 @ 1:33 pm
I am an autistic adult. I am willing to help with advice or any other ways either one of us can think of.
April 23, 2018 @ 11:15 pm
It’s a deep lonely road to have a child with a special condition. Our hearts break every day in ways that most people could never imagine. However, you’re so right when you say there’s more than a way to climb to the top of a building. I guess we often do not have a ribbon or a T-shirt to shout it to the world, not only because we have little energy left, but also because ‘celebrating’ autism isn’t exactly what we would want to do, because – contrary to what most people think – autism is a double sized coin, on one side there are sparkles and stars, but on the other side there are tears and sorrows and it’s incredible how often this coin tends to fall with the sad side up. Most people will never realize it, but we, mothers of children like ours, realize it deep inside every single day. Our hearts are like a never-ending roller-coaster, and if one had to ride a roller-coaster forever, I am sure they would want to stop it, as they’d feel dizzy and unbelievably exhausted, so that they could get off and just enjoy a normal ride in a car. Your text is just amazing, wonderful, sensitive and special. You are a way in which your son, Jack, is already climbing to the top of a building, because nothing of it would have happened and you wouldn’t have touched so many people’s lives if you son, Jack, wasn’t who he is, and I am sure he is able to feel the positive side of his special existence because of you. Maybe, what both of you are accomplishing together is worth more than any of those floors he may never stop on,
April 24, 2018 @ 5:16 pm
Actually, Jack may be some super nerdy scientist that fly’s Toyota’s on the moon!
I met a boy last week that has Aspergers. No one told me so, I could tell. I could tell by the way he looked away from me when he spoke. i could tell by the way he spoke of his obsession with car parts. The reason I could tell was because my son also has aspergers.
What amazed me was that this grown 22 yr old man was living outside his parents home sharing rent with 2 others on a cute farm. He works at Walmart and makes $11.00 an hr and hates it. Yet he is independent, unlike my son who still lives with us.
That is unless he moves out this weekend. Yes. He has been talking to college mates who need a roommate. My son may not qualify because he has never had a steady stream of income that is on paper. My guess is that the apartment complex will allow him to move in because his bank account looks decent. I hope so. this is the first time in a while that my 26 yr old son is motivated to get a full time job. even with his college degree he has found it difficult.
I know raising Jack is a challenge. But He may completely blow you away some day and become someone very important in the community.
I’m still crossing my fingers that my boy will make this transition this weekend, so he can move forward in his life.
Keep the faith. It’s the only way…
April 30, 2018 @ 10:03 am
As a mother of a now 19 year old son I was so able to relate to your story. I had never thought of it that way but it resonated with me. 1st Floor: When my son was in pre-school I knew he was different when he wouldn’t play with shaving cream, would play by himself in the classroom, flapped his arms when excited and patterned everything by color. At that time he was classified with Asbergers, as soon as he entered Elementary School he had an IEP for OHI (other health issues) because that was what he qualified for in school. 3rd Floor: He couldn’t write long reports, he couldn’t get the first idea onto the paper. Had fine motor issues. 10th Floor: Jump to High School where he was reclassified with PDD NOS, Pervasive development disorder not otherwise specified(what does that mean…not otherwise specified, how do I try and explain that to him so he knows whats available to him as help). That was when I learned he didn’t understand what sarcasm was. How does a mom let her child to get to High School not knowing what sarcasm is, why didn’t I notice that before? Tried Brain Balance, tried college with extra tutors and private coaches but for my child that didn’t work, ok, check that off the list and now he’s looking for a job. He still prefers to eat the same 8 foods but he’s starting to try other foods. He doesn’t drive yet but I know he will eventually. I think the biggest challenge we have as parents is teaching them what they need to keep them productive and if possible self sufficient, and teaching them to look at themselves positively. Keep singing that song…Just what made that little ole ant think he could move a rubber tree plant……
April 30, 2018 @ 10:35 am
I have a 2 year old boy with autism and I get a knot in my stomach every time I remember. Not that I ever really forget but sometimes maybe it just slips out of my mind and then I am jolted awake by the thought, “autism”. Is he ever going to speak normally, is he ever going to have a “normal” life? I feel like you put my feelings down into words, it’s a terror in the back of my throat for my beautiful baby, how is he going to cope with the milestones ahead? How are his father and I going to survive watching him make them or not? What if my 6 month old baby girl is also autistic? Is it possible to live life with this uncertainty and heart break of watching a loved child have all this difficulty? When it stops being excusable and just becomes weird all the little things that you do, the spinning anything oval, the obsession with cars, the inability to answer questions, make eye contact, the random tantrums? I may have over estimated high functioning and I am just coming to the realization that if at almost 3 we still have this much trouble comprehending language we may be in for a rough ride. I feel like I want to run away. But where can I run to when my lovely baby still has to deal with this. It’s so tough now but I think it gets even harder.
M. Jeffry Spahr
May 1, 2018 @ 11:32 am
Sometimes I look at these articles figuratively through my fingers because it is too close to home to read outright. I put off reading them until I am ready. Well, sometimes I am not ready. Our son, Jack too by the way, is 17.5. He does not do all that stuff to get ready — at least without 428 reminders. However, he is a whiz on the Computer. When they advertise a job for those willing to beta test Minecraft updates, or Mods to Scrap Mechanic or Kerbal Space he will be first in line and the CEO in short order.
Until now I have been carrying the roller coaster car up the hill and have never complained even though it has been filled with rocks taken from a beach, soda can snap tops, stray wires and things found on the ground (it has never been filled with passengers on a play date) Now I am approaching the crest. As much as I am tired from ascending the track, I am scared ____less about going over the edge. I feel that I am staring into the autism abyss. Well, anyhow we are getting ready. We are strapped in with the safety bar latched. I think I will ride this one with my hands in the air and a nervous smile on my face.
September 7, 2019 @ 11:41 am
I am a high-functioning autistic adult, and the way that neutotypical people treat us makes it really difficult to like myself.
If you’ve had gay friends who were rejected by their religious families over morality conflicts….well, that’s my situation with my family when it comes to my autism.
“If you’re smart enough to know everything about trains, then you’re smart enough to know how to get along with people socially.”
Or, even better: ” If you made ‘being normal’ your special interest, then you would be normal. Since you choose not to make normalcy your special interest, then this means that you choose to be autistic. You deserve all of the things that happen to you.”
I was a paramedic (until I got hurt), and currently work as an EKG technician…..and side money as a published writer for a few different magazines.
The biggest problems with high-functioning autism (in my situation, but may not apply to you) is always falling into double-bind “damned if you do and damned if you don’t” situations.
As an example, I discovered–as a paramedic, with my edetic memory of EMS run sheets–that if–let’s say–a wife accompanies her husband (who is having a heart attack, as an example) in the back of the ambulance, that I can use smaller doses of medication to accomplish whatever I wanted to do.
I expanded these ideas to include the other half of a gay or lesbian couple under the theory that a paramedic must be nonjudgmental, and I get suspended for violating a company policy that only allows a spouse, clergy, interpreter, or parent in the back of the truck.
We work with a lot of religious hospitals, and the clergy in these institutions complain when I treat gay people like human beings (ie: extending the same standards that I follow for straight couples).
All of this despite the requirement that I had to sign off on an ethics statement that was attached to my licensure.
So, not seeing the difference between a straight couple and a gay couple when it comes to doing my job comes from the social blindness of my autism.
If anyone doubts the veracity of my story, look up the lawsuit with Lisa Pond in Florida.
Things like this sink me all the time at work, and in my social life.
August 21, 2021 @ 2:37 am
Hi Carrie, my name is April, I have high functioning autism. I wanted to let you know that your blog showed me that people can understand me. That not all people are trying to fit me into a box that I can’t even find. I will never understand the thinking of “normal” people. As I’m sure most of those people can say about me, you’re one of the few people who understands my situation, even though you don’t experience the world the same way as me, you describe it perfectly. And even though most of the world Deny the truth that we’re not meant to fit in a box. The rest of the world can decide to do that, but it has to be their decision! Personally, I don’t want to fit in the stereotypes people think I am. I don’t think that a label can define me, or anyone else! Just because I’m different? Weird? Doesn’t mean that that I’m abnormal. Everyone is quirky, we all have our own uniqueness, that’s what makes us different, and often? Different means fear for people. Personally, I’m scared that no one will accept me for who I am!
You give me hope!! You inspire me, to spread awareness of what autism means to me!
Best regards to you, your family, social helpers, and especially to Jack!! I want you to tell him that even though no one understands him perfectly, there will always be people who love him in his own unique way!
(You don’t have to tell him tonight, tomorrow, and if you don’t want to? You never have to tell him. But I would have appreciated somebody telling me that I was understood when I was younger! ) You have a good head on your shoulders. I hope Jack understands that!