How the "High-Functioning" Label is Letting Us Down
Posted on 09/17/19 in Advocacy
The term "high-functioning autism" has been one of debate for a while within the autism community. A recent study regarding the term "high-functioning autism" has now sparked new discussion about its shortcomings as a diagnosis label.
The study conducted in Australia investigated the relationship between adaptive behavior and cognitive function in more than 2,200 individuals with autism. Researchers found that while IQ is correlated with functional ability, it is actually a very weak predictor of the level of daily living skills the studied individuals had.
“The term (high-functioning autism) completely disregards the difficulties these individuals have on a day-to-day basis,” says lead investigator Andrew Whitehouse, professor of autism research at the Telethon Kids Institute and the University of Western Australia in Perth, Australia.
As an educational agency, Milestones agrees that this label does not serve as an accurate label given the wide variety of challenges high-functioning individuals face. Interested in what other people within our community think, we reached out to a few self-advocates, family members and professionals for their thoughts, perspectives and input on how it has affected their lives or practice.
Using the term ‘high-functioning discounts or dismisses the person’s needs or struggles. Plus, they may not see themselves as “high-functioning” when inside they feel like they’ve failed with respect to their needs and struggles. Furthermore, telling someone they’re "high-functioning" may cause them to resist help or feel like they don’t need it at all when really they could use some help.
Using the term “low-functioning” discounts or dismisses a person’s strengths and capabilities. It’s both shocking and disturbing how many people call their child this term in front of their child. Then, the child becomes depressed and is rendered powerless (also known as “learned helplessness”). This results in a self-fulfilling prophecy when parents or others say things along the lines of “My son/daughter will never live on his/her own” and then years later, that’s exactly what happens. Underestimating a child’s potential hurts both the child and the adult(s) that made the terrible assumption.
Tom Iland, CPA, DTM, Valencia, CA – accountant, public speaker and self-advocate
Adaptive behavior and what an individual can and cannot do is a much better way for funding services. Individuals that have other co-morbidities such as ADHD, learning disabilities and mood disorders can be more severely impaired. What needs to stop is counties saying, “they could do this if they wanted to."
Gwen Francine Wise, Shawnee Hills, OH – parent of two children with ASD
“High-functioning” is part of my diagnosis but I’ve moved away from it in recent years because it does minimize my daily challenges, and “high-functioning” makes people think I am basically neurotypical (I’m not). I also don’t like how functioning levels make it seem like I’m superior to someone with more needs or a more profound disability (I’m not).
Haley Moss, Coral Gables, FL – lawyer, public speaker, artist and self-advocate
“High-functioning” and “low-functioning” is quite limiting given that all people have a variety of skills and a variety of deficits, so what characteristic are you referring to when you say someone is high or low-functioning? You may refer to one ability area of a person, disregarding other areas. I think people most often confuse vocal speech ability with higher intelligence or higher functioning. However, a person without vocal abilities, may fully understand what is being said, but needs to communicate in other ways. Furthermore, focusing only on vocal abilities, doesn’t take into account a person’s physical abilities, memory skills, adaptability, flexibility, humor, sociability, athleticism, office skills, computer skills or hundreds of other skills. It is interesting that in the autism world someone we limit people with a label of high or low-functioning. Do we call someone hearing-impaired who uses sign language instead of speaking, low-functioning? In general, I would like to see a greater focus on each person’s strengths and the contributions they are able to make, rather than only describing a person’s deficits.
Ilana Hoffer Skoff, MA, Beachwood, OH – Milestones Co-Founder, Executive Director and parent
Because I’m deemed high-functioning, I feel like I have to live up to that. There are days where I want to sit under my work desk and rock, knowing even a few seconds of that would help. I also have days where I am just done. All I want is to go home and read. But I can’t. I have proven so many times that I can do things “normally” that I feel it would be looked down upon if I decide to display the behaviors I want to and frankly, need to. This causes me to mask, which just makes everything ten times worse when I am able to take the mask off and finally be autistic. I have also been denied services because I only meet some of the criteria. Just because I can present well at an interview, doesn’t mean I don’t need help at other times.
We as a community need to find a different way to describe us. Although we are a spectrum, we are not a straight line. High-functioning and low-functioning labels put us on that straight line. We need to find a way to expand and really treat every individual as someone with very different and complex weaknesses and strengths.
Nera Birch, Cleveland, OH – Self-Advocate
As a professional, I understand that functioning labels can play an important (and sometimes necessary) role in the autism service world. They're a helpful shorthand way of asking "how much support does this person need in the current moment?" when there might not otherwise be the time to delve deeper. However, as a self-advocate I understand that the functioning labels just aren't helpful in the ways that they could be. Throughout my life, there have been instances were I've been very negatively impacted and others where, with the appropriate supports, I have been able to thrive. Take school for instance, I had an IEP as a child, but it was generic and just didn't meet my needs. I had behaviors such as eloping and I eventually fell through the cracks in the education system. Yet with preparation, accounting for my areas of need, and the right supports the very kid who "couldn't graduate high school" went on to graduate with a Master's degree at the top of my class. Autism is complex and has impacted every facet of my life. I am "high functioning" when I have the right supports, but my access to supports can change -- thereby changing my level of functioning.
Nathan Morgan, Cleveland, OH – Milestones Early Intervention/School Age Coordinator and self-advocate
“Functioning” labels can be so very misleading and inaccurate. For instance… me.
My diagnosis from five years ago (at age 46) was challenging for the psychologist/assessor. During the “introductions,” I explained that I was a graphic designer, married, been to university, have a relatively successful career, etc. Upon completing the initial assessments, she was speechless and quite puzzled. My results didn’t really “match up” with what I had told her about me or what she was seeing. She was convinced that maybe she didn’t do something quite right. Something just wasn’t adding up. So she administered another test. Then another. And another.
The diagnosis “on paper” after all of that… “Autism: Severe Range of Impairment”.
When it was all said and done, we had a very long discussion and she asked me more than once, “How in the world did you make it this far? And for so long? And no one ever said anything at all?”
The results from the official testing didn’t match up to what a “functioning label” would be.
Ron Kerns, Mountain Home, AR – graphic designer and self-advocate
I do not believe in the terms "low-functioning" or "high-functioning." Someone can have high-support needs in one area, but be completely independent in another area. To classify someone in one way, dismisses what a person is capable of and/or the tasks they may need extra help in completing.
Jordyn Zimmerman, Hudson, OH – college student and self-advocate
I was forced to re-think my language, as a parent and professional, who “prided myself” on always using “person first” language in all my discussions.
The question that raised this was describing persons with autism as “high-functioning” which does beget the opposite end, or “low-functioning”. I have never referred to anyone as “low-functioning” but I have thought the “high functioning” term was valid to use. Though the article I was given to review, spoke of those with “high-functioning” autism as still needing support, due to often difficulty with daily living skills, I think that eliminating this “high-functioning” descriptor is correct, not due to that, but due to eliminating judgmental terms, period. I will now be aware of and not use that term anymore, either professionally or personally.
Jane E. Holan, M.D., Cleveland, OH – pediatrician and mother to child on the spectrum
"High-functioning" is a term I normally cringe at when I hear it. What does that even really mean? To me there is Autism with intellectual disability and Autism without. Those without, often deemed “high functioning,” often still struggle with other disabilities such as learning disability, ADHD, mental illness, or sensory processing disorders all which can significantly impact level of functioning.
My Autism symptoms can be severe at times but at other times very mild. When severe I cannot do functional tasks and my behavior is very disorganized. I need someone to help structure me and I may be seen as an outsider as “low functioning.” I am not low functioning nor am I high functioning. I am a woman with Autism, ADHD, learning disability, and SPD. I also struggle with an eating disorder. In certain environments and circumstances my Autism symptoms are high, in others they are low. I try hard to keep my symptoms low however through being self-aware and proactive. I prepare when I go out into the community and take steps to keep my internal system at a certain level so my symptoms do not escalate. This takes vigilance, constant self-monitoring and it is very exhausting. I do not go out when I am internally disorganized and at risk for having obvious outward symptoms, so that part stays hidden many times. It’s frustrating when I do go out and my symptoms seep through and people assume I am being defiant or rude, such as when I went to the doctor for an iron infusion IV (I needed to pace and stim because of the noise. I also had a hard time communicating and following directions). Because I am labeled as “high-functioning” the behaviors and communication challenges they witness are not attributed to my ASD but rather to me just being difficult, ridiculous, and rude (as my super good hearing overheard staff say amongst themselves).
Also, I do need help from my support system on a daily basis. My disability is often hidden because of the amount of work my supports and I put forth. Terms like “high-functioning” dismisses what all it takes for me to just function on a daily basis. It also limits some of the help that may be offered. People think high-functioning and assume I don’t need help with things like going to an appointment, socializing in a group, or grocery shopping. In reality that is not true.
Kim Clairy, OTR/L, Belleair, FL – Occupational Therapist and self-advocate
I've always believed that labels are good for products and not for people. When we label people with terms like "low-functioning" and "high-functioning", we make assumptions about their abilities in every area of functioning. As I've met and worked with hundreds of people with an autism diagnosis, I can confidently say that each person has skills and abilities that fall into a large continuum. For example, a person may have limited verbal skills, but have much higher academic skills. This person may receive the label "low-functioning", but comprehends much of what is going around him/her. Using these labels to describe people's abilities is dangerous because it leads those helping them to think within the box of what is expected for someone that is either "low functioning" or "high functioning". Without a label, they are a person with limitless potential for whom the sky is the limit. I want to live in that world.
Melissa Baker, M.S., CCC-SLP, Aurora, OH - former Speech Therapy Department Supervisor at Monarch Center for Autism and Owner/Speech-Language Pathologist at Chagrin Valley Speech Therapy Services, LLC
Have thoughts on this topic you would like to share? Let us know at firstname.lastname@example.org with the subject line "Response to High-Functioning Label Article".