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?

High functioning autism is highly misunderstood and mislabeled. I get so annoyed when people automatically assume my child can perform all the same tasks and control his sensory issues like neurotypical kids simply because he is able to speak. Every child that can speak is not truly high functioning, and HFA doesn't mean that the child doesn't need assistance. #HFA #highfunctioningautism
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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. 

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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.

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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.

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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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