High Functioning Autism Explained
I’ll never forget the look on her face when I told her my older son was autistic. She was completely dumbfounded, and stood speechless for a moment. Immediately following an epic public meltdown, this lady had reprimanded me for having such an unruly child. After she regained her composure, all she could blurt out was, “But he’s so high functioning!” With that, she scurried off. I don’t know who gave her the right to label him as such, but what is high functioning autism anyway?
Levels of autism
In everyday conversation, people typically throw out the terms “low functioning” and “high functioning,” when referring to one’s presentation of autism. “Low functioning” generally means non-verbal, and possibly cognitively delayed. If someone speaks, they are usually considered “high functioning.”
These labels are convenient for the general public, but they are far from diagnostic. Autism is a spectrum, as most people know by now. The part that surprises many is that the spectrum is not linear.
A verbal person may be so stricken with anxiety that they never leave their home. And a non-verbal individual may be a mathematical or musical genius. Just because one cannot speak does not mean that they are unintelligent. On the flip side, just because another person is surprisingly eloquent does not mean that they don’t suffer from extreme sensory issues. There are many aspects of autism, and every person on the spectrum has a unique combination of strengths and weaknesses.
Diagnostic levels of autism
When a child (or adult) is diagnosed with autism, the doctor will notate a level of severity, which often determines how much therapy they will receive. There are three levels of autism, according to the DSM-5:
- Requiring support (Level 1)
- Requiring substantial support (Level 2)
- Requiring very substantial support (Level 3)
These levels are determined by the child’s level of social skills, speech, cognitive ability, rigidity, anxiety level, and other possible hindrances. They are not solely based on whether or not the child can talk. There are many early warning signs of autism besides inability to speak.
True high functioning autism
Before the DSM-5 was put into place, there was a separate diagnosis for Asperger’s Syndrome, which is the most accurate description of “high functioning autism.” People with Asperger’s Syndrome often don’t require therapy, and many even go undiagnosed.
This does not mean that these individuals don’t have sensory issues, OCD, ADHD, or other struggles; but these issues are usually not significant enough to interrupt their daily life. They are often socially awkward and intelligent, and will have no problem getting along in the real world. But of course there are exceptions to every rule.
Some children with (what used to be called) Asperger’s Syndrome still require special accommodations in school, and definitely benefit from routines and visual schedules. (You can check out my other post here for free visual schedules and a guide on making your own!) I am all for offering as many supports as needed in order to help these kiddos become super successful as adults.
But here’s the issue: not all kids who are verbal have Asperger’s. There are many who are verbal and still have debilitating issues. Think of Rain Man for a minute. (If you haven’t seen the movie, go watch it!!)
Don’t get me wrong either – many kids with an Asperger’s diagnosis have daily struggles too, and they need just as much support and compassion as anyone else on the spectrum! I just want to explain why “verbal” does not always mean “high functioning.”
If you suspect your kiddo has HFA, or if they have already been diagnosed, you would greatly benefit from my autism eBook.
The problem with “high functioning autism”
Why does it matter how we label them? I guess it depends on how you look at it. Some parents may be ashamed to say that their child is autistic (yes, those people really exist.), and they prefer to call them “high functioning,” so it doesn’t sound like something is “wrong” with them. *rolls eyes*
Other parents actually get super annoyed with the phrase because it undermines their child’s struggles. This seems to be the vast majority, in case you’re wondering. And I am definitely a member of this category.
You see, both of my boys are autistic. One has struggled with severe cognitive and verbal delays, while the other has not. I see both ends of the imaginary linear spectrum of autism: the “high functioning autism” and the “low functioning autism.” And the truth is, neither of these things really exist.
Both of my children were diagnosed as Level 3 ASD. My verbal son has extreme anxiety issues, OCD, sensory aversions, and disruptive stimming behaviors. My younger son, with speech and cognitive impairments also suffers with anxiety, but does much better in public places than my older son. They are unique in their presentations of autism. They both require a lot of therapy. And I worry about both of them being able to live independently as adults. Of course, only time will tell.
My issue with the label of “high functioning autism” is that it assumes speech eliminates all other struggles on the spectrum. Newsflash: verbal autistic kids have struggles too!
The struggles of kids labeled with high functioning autism
I’m not quite sure why people have so much less compassion on kids who can speak, but it’s definitely a trend. Perhaps they can’t see the many disabilities through the one ability. Whatever the case, people don’t typically have patience for kids with so-called “high functioning autism.”
My older son can speak – most of the time. When anxiety strikes, he loses this ability. When a stranger approaches, when he becomes frustrated, or when he is afraid; he freezes and cannot bring the words to mind, much less to his mouth.
“Use your words” is a phrase that drives me insane. Yes, he knows words, and how to use them. But when his brain switches to “fight or flight,” he can’t gather himself enough to find those words. And people think he should be able to since he has language skills.
He struggles just as much as someone who can’t speak. But since he can, more is expected of him. He is expected to control his sensory issues, since he can tell you it’s too loud. He is expected to control his ADHD since he can often verbalize that he has too much energy. He is expected to be able to perform daily tasks like toileting with ease, since he knows how to talk. He is expected to have perfect emotional control, since he knows the words “angry” and “frustrated.”
Do people not realize that these are completely separate issues?!
Talking and toileting have nothing to do with each other! Emotional regulation, executive functioning, sensory needs, and dependence are not resolved by the ability to speak.
People tend to have more compassion on my younger son, who is quite delayed and still extremely babyish at three and a half. Nobody really gives me dirty looks when they see me cradling him with his bottle. But his big brother better not step out of line a single inch, or the quality of my motherhood is suddenly questioned. Sigh…
This is the frustrating thing about people’s understanding of the term “high functioning autism.” They throw that label onto any child who speaks, and consider them fully capable of doing everything a neurotypical child can do.
Parenting a child with high functioning autism
Parents, please hear me out on this. I do not want you to use your child’s diagnosis as a crutch. That’s the worst thing you can do. Instead, use it as a baseline. Know their abilities. Figure out their strengths and weaknesses. Stretch them, but don’t break them.
I am constantly stretching my older son. I want him to be uncomfortable, so he can grow. But hear this: I don’t want him to be terrified or helpless. I don’t want him to feel like he cannot ask for help when he needs it, like he has to be perfect, or like he has to try to fit into a mold for other people. Those things will not help him succeed in life – they will crush his spirit and cause him to look for ways to mask his internal pain.
Sometimes your child is going to regress. They may suddenly forget how to perform a simple task, or ask for help with something they know how to do. It’s okay to help them when they struggle! No, I don’t want you to baby them and do everything for them. Remind them gently that “this is the way we do such and such,” and walk them through it. Don’t snap at your kid and remind him that he’s done it a million times, so he knows how to. He needs to know he can still come to you for help.
If it becomes a pattern and it’s clear that it’s behavioral, obviously reign it in and slowly back away from offering assistance. But if your child is just having a moment, there is no reason for you not to help them. Be compassionate and understanding. Even though your child can talk, they still have many other issues that are often invisible.
The dark side of high functioning autism
As a parent of a child who is often incorrectly labeled as having “high functioning autism,” it is very difficult for me to embrace this term. Speech is not everything. There are so many struggles that my older son deals with every day that remain unseen to those who do not know him.
My youngest has a smile that can steal your heart away in an instant. His delays and his smile win people over everywhere we go. It breaks my heart to see how differently people treat his brother. They are both autistic, although they present in very different ways.
I often worry more about my oldest becoming independent than my youngest. The lack of compassion from onlookers often increases his anxiety in public, and I wonder if he will grow up fearing what others think to the point that he will avoid social situations when Mama’s not there. That’s just one of the curses of the “high functioning autism” label. I constantly have to remind myself that God is bigger than these fears, and that He can give my sweet boy strength to overcome them.
The big takeaway here is: remember that autism is a very broad spectrum. Think of the color spectrum. It’s not just composed of warm colors and cool colors – every color has different shades and intensities. So do each and every characteristic of autism, from sensory issues to speech. Autism is autism, no matter what “end” of the spectrum your child is on.
What is the craziest thing someone has said to you about your autistic child? Let me know in the comments!
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Such a great post! I especially loved this line at the beginning : “Just because one cannot speak does not mean that they are unintelligent.“
My son has Angelman Syndrome and is non-verbal. There are many overlaps with Autism and AS, so I appreciate the details you wove into this post.
There are definitely struggles going on even if others don’t see them!
Thanks, Lisa! You absolutely get it then! AS and autism have many similarities that you no undoubtedly deal with on a daily basis. As you know, those who don’t have speech can have plenty of intelligence, love, joy, drive, and creativity to fill in the gaps! 💙
I hadn’t really considered that the term high functioning” might seem like a disservice to the child. My oldest was often thought to have Asperger’s Syndrome, and there were times when she couldn’t communicate effectively. She was also placed in the gifted program, which made people extra impatient with her at times.
That’s the problem. She was placed in gifted programs because of her intelligence, and people often don’t understand that intelligence and speech don’t exactly go hand in hand. I’m sure that was hard for her to deal with their impatience! 🙁
I really loved this post. You hit so many great points that I probably couldn’t have said better myself.
However, I feel the need to add on to your point about why parents may feel the need to say their child has high functioning autism. I definately struggle with saying my son is autistic, not because I am in denial, but because I know how hard the lives of the children, families and parents of kids who are lower on the spectrum can be. With that, I feel the need to explain that he’s high functioning because we don’t even come close to dealing with the same level of hardships and by saying he’s autistic, it changes people’s understanding of how debilitating it could be for other families when they see my son. I think it takes away from families who really could use the awareness and compassion. In an ideal world, people would understand that there are do many different ways that autism presents itself but we don’t live in an ideal world so they’ll want to identify with the part of autism that looks easy and doesn’t require them to understand more than their minds can handle. Understanding would require bosses to care for employees, or parents to invite the “difficult” kids to the party and schools to give the recommendations for specialized setting. That said, not everyone is ashamed of their autistic kid, some of us are just truly aware of how easy we have it compared to others and choose not to take away from other people’s story.
Thank you so much for your thoughtful comment, Berlyn! I understand your view point, and appreciate your sensitivity. That makes total sense! And the “high functioning” term is perfect for that kind of use. My main struggle is when random people try to throw the label out there, out of ignorance, and expect that a child has no other issues if they can speak. We all have our own struggles, and each of our children present with different symptoms and severities within the spectrum. It sounds like you have a wonderfully compassionate heart! 😊
Your sons are so blessed to have YOU as their mama! I worked as a math tutor for several years and I ended up mainly tutoring teenage boys with differing levels of autism, who were SO stinking smart once they trusted me enough to let me work with them. Each of them had such unique abilities.
Thank you, Amy! It sounds like you are exactly the kind of teacher that kids like mine need too, since you can take the time to get to know them and see each kid’s unique abilities! <3
This is so interesting. My son doesn’t suffer from Autism but he suffers from ADHD and can be a struggle as well as labels get thrown around all the time.
Oh yes, my little guy has ADHD as well, and it sure can get interesting!!
I love this post! My son has autism and it is more frustrating with family members many times. They see him, and he talks and appears “normal”. Therefore, he must be “normal.” It TICKS me off! Especially when I’ve already explained his condition to them NUMEROUS times. And I hate the word “normal” when used in this sense, as if to indicate as is there is something wrong with having autism.
He suffers from anxiety in new situations and often loses his words in these instances. He gets overstimulated in crowds. He HATES change. Routines have been an absolute LIFESAVER.
There are SO many different levels of autism. And I’m so glad to see more parents/people speaking out about the condition so that others understand. I’ve had to tell many a person to “back off.” And at this point (my son is eight), I’m past caring what others think. My child’s needs come first.
Thanks for the wonderful post!
Thanks so much for your heart felt comment, Deirdre! I know exactly where you’re coming from! My older son sounds much like yours. It’s tough having to constantly explain things to people to ward off their ugly comments and such, but we are the best advocates for our kiddos! Keep up the good work, mama!
My 23 year old son is level one, goes to a community college, drives and has a part time job. I am so concerned of him freezing and not knowing what to say if pulled over by law enforcement. To the point I asked my state legislator about proposing a bill in my state for an indicator on his license. The bill s currently with the committee, this is just a small way of keeping our kids safe. Best of luck in raising those wonderful boys of yours. It takes a village.
You’re so right, Lynne!! It definitely takes a village. Have you thought about making a card for your son to put in his wallet with his driver’s license? You could type up a few simple sentences that say he is autistic, and struggles with anxiety in certain situations, and may not be able to answer questions. You could even add your phone number so they could call you if they needed help getting information in the case that he froze up. You could put it with his license, or fold it in half around it, so he doesn’t forget to pull it out. If he gets pulled over, the first thing an officer would ask for is his license, so he could pull it out with the info card, and hand both to the officer. Then he wouldn’t have to worry about what to say. 🙂
Thank you for this article. It really opened my eyes! One of my grandsons is thought to have autism (every teacher he has ever had has mentioned it), but because he is “high functioning”, has not had the assistance he probably needs to cope with his struggles. Thanks for helping me to understand this better. Now, maybe I can help my grandson!
Oh wow, I’m so glad this was able to help! Many kids on the spectrum end up flying under the radar for years (sometimes never even getting a diagnosis), because their symptoms don’t show in ways that most people typically understand autism. It’s never too late to start trying out different therapies or making adjustments to help kids out on your own at home. Using calming strategies can help ease into transitions, help kids to focus better during school, and even sleep better. Let me know if you have any specific questions and I’ll be happy to help! 💙
My 4-year-old will start evals on May 23rd to test for Autism. I never thought I would have to go through this. He is very smart but he has major meltdowns and he has been diagnosed with Sensory Processing Disorder.
Hang in there, Whitney! It’s tough going through the process, and emotional when you first get the diagnosis, but most of us grow to embrace it and learn to live with it and help our children thrive to the best of their ability. Your son is still the same little boy, no matter what the outcome of the evaluation. 💙
I enjoyed reading this so much. Most people take a look at my son who is 9 years old and say he doesn’t look like he has anything wrong with him. I smile and say having autism is just a diagnosis but he is very smart and loving and I don’t consider him to have anything wrong with him. I know I don’t have to explain myself but I feel that it is much needed because autism isn’t taught. Before the diagnosis and many different therapies I had to figure things out on my own. Not all who are spectrum are the same. Lots of love to you all. We all can learn from one another.
I love your article. I have been told that I do not discipline my child and he needs to learn to use his indoor voice. They would spank their child if they acted the way my son does sometimes with those tantrums.
Many people make rude comments like this. Spanking a child for a behavior that they can’t help is never the way to go. It’s a constant battle, trying to stay strong for our kiddos and defend them; but at the end of the day, what other people think doesn’t matter. Helping our children thrive is what matters.
My daughter has been diagnosed with Autism, non-verbal learning disorder, ADHD, and dysgraphia. She is VERY smart and verbal. There are some days when you can not even tell she has these diagnoses. We struggle constantly with the school because they say “We cannot diagnose but we do not see any of these in her”. They think because she can talk and function that she does not have issues. She comes home from school crying because she cannot understand why kids are bullying her (they just don’t want to play with her, and they tell her that). Her brain does not work the same way the other kids do. She asks me often why she has to be like this and why cant she be normal. I constantly remind her that God made her and that she is perfect the way she is. I tell her that I would never change her. She is her own normal and that is what is special about her. I try talking with the school and they say that she is a big part of the problem. I am at a loss as to what to do for my daughter with school.
When it comes to school work, she does good some days and then we revert back and she does not know how to do it. She has melt downs when it comes to multiple step problems. She has major issues with spelling and writing.
Your article has completely hit home with me. I have a son that has ADHD as well. The worlds of my two kids are so different. It is great to read about other parents that are struggling with the same things I am.
Oh mama, I’m so sorry your daughter is struggling so much at school, and that they are basically blaming her and not helping! That’s awful! I would be able to offer more helpful advice with specific scenarios. If you’re interested in getting specific ideas for helping your daughter (and you son, with his ADHD as well), feel free to join my private FaceBook group for autism moms! https://www.facebook.com/groups/spectrumsenseformoms/
For a long time, however, only people with very severe symptoms were diagnosed with autism. Starting in the 19, milder forms were recognized, including high-functioning autism and Asperger ’s syndrome, which share many of the same symptoms.
This article helped me to understand some things and I think has given me the ability to explain myself to others in the future if the need arises. I am a 46-year-old woman who was diagnosed three years ago with Level I ASD. I am married (24 years!) and work full-time at the same job for the last 18 years. Thank God this issue is becoming more noticed these days. Kids now can get therapy to help. People my age and older all had to go through life enduring a lot of hatred from others because “My God, why can’t you just act normal?!”, as though we are choosing to be difficult or strange in their eyes. Because, you know, we obviously love being verbally and sometimes physically abused by others that don’t understand. What I have was not anything they could have diagnosed when I was a child. Perhaps I would have been labelled as having some type of “personality disorder” and given meds that wouldn’t have done anything. School life after 2nd grade was nearly unbearable. When I was teenager, with only one best friend and no other friends at all, I considered suicide. Even my best friend, who didn’t seem to mind my utter weirdness, sometimes struggled to understand me and I could give no explanation. My parents were always frustrated with me when I continually told them that I knew no one liked me. The pat answer was always “People like you! Stop saying that and stand up for yourself!” But they didn’t know either. Even now I occasionally hear “You don’t seem autistic.” I hate that. People that don’t have it, don’t really know anyone that has it, don’t understand what saying something like that really does. Personally I feel like it takes away an integral part of my identity. I’m tempted to ask what autism is *supposed* to look like. Voluntarily isolating ourselves because we don’t want to struggle anymore to get along in a neurotypical world, covering our ears or stuffing earphones into them in Walmart because the bombardment of sounds brings on a meltdown (or shutdown in my case. I become physically sleepy after grocery shopping there), fumbling around for something to say after someone starts a conversation with us, trying to explain to co-worker that her perfume is making us nauseated and getting an angry look in return…on and on and on. Yes, many of us can speak. Yes, many of can get by. But no, neither one makes it easier for us to live among them.
Thanks so much for sharing your personal experience, Melanie! I’m also on the autism spectrum, and it wasn’t really noticed 30 years ago, so I know exactly where you’re coming from! I’m so glad you’ve been able to relate to some of this, and I truly hope it helps you in the future, as you reach out to others to help them understand you! Autism is talked about a lot more these days, but still not well understood by the majority of the population. You are unique, and that’s a good thing! I actually have the same problem with grocery stores (ESPECIALLY Walmart!), where a physical exhaustion overtakes me once I get back to my car. Way too many people, and too much sensory overload!
Thank you for sharing this great article! I thought I was sufferting from my daughter’s behavioral problems. You’ve remind me to think on her side. Maybe when she is anxious, she could not help figure out complete sentence that she might have already known. I should try to love her and understand her more. And always be her biggest support.Thank you!
This is so true, Tina! I struggle with completing sentences when I am anxious as well, and I’m in my 30’s! My eldest son also deals with what is called “selective mutism,” which means he basically goes non-verbal when anxiety strikes. Anxiety and sensory disruptions can cause the brain to temporarily go haywire in autistic individuals, and we can really struggle to connect the dots that we normally could otherwise. We all need periodic reminders and times to refocus, so applaud yourself for taking this as such and moving forward with this knowledge so you can be your daughter’s biggest support! <3
My 4 year old goes for testing tomorrow. Im very overwhelmed my 12 year old son is quadriplegic and has CP. His diagnosis is straight forward. Autism is not but reading this has helped me have a better understanding. Thank you
So glad it helped you get a better grasp on autism! I wish you the best with your son’s evaluation tomorrow! Having a straight forward diagnosis always helps, like in your older son’s case, because you at least know how to move forward. I hope you get your answers on your younger son from tomorrow’s testing, and that my articles can help solve some of your immediate concerns! I also started a sensory subscription box this past summer, which would be a great place to start with therapeutic toys and visual aids. You can search for Spectrum Surprise online, or in the menu bar above! Would love to hear what you find out! Hang in there, mama!