If you remember, when the DSM was revised several years back, the terms Aspergers Syndrome and PDD-NOS were eliminated. I felt it was adequately explained as to why, yet I still find parents who are clinging to the terms. Especially clinging to Aspergers. Even those who don’t use those terms anymore are using another term–high functioning autism.

And then there’s low functioning autism. Sometimes known as severe or profound autism. All of it is exasperating.

High Functioning vs Low Functioning Autism

This isn’t intended to shame or badger anyone. But to share why I have removed the terms from my every day speaking and encouraging others to do the same.

I also hope to include some explanation and talking points, in hopes that we can all better express why. Sometimes I know in my heart why I want to say or do something, but don’t always articulate it so well. That may even be the case here, with this article.

First, I do want to get into the characteristics of both high functioning autism vs low functioning autism, and (from my experience) some of the main ones that cause these labels to be attached to a person.

High Functioning Autism

The term “high functioning autism” has been used in the past to describe individuals on the autism spectrum and who have relatively good cognitive and communication skills.

But here’s the thing–it’s usually only a measure of verbal ability. It’s also been my experience that those who are considered “hfa” are exceptionally good at masking. So what you see out in public often varies significantly from the person at home, where they can be themselves.

There is a growing understanding within the autism community that this term can be misleading and problematic.

Here are some reasons why people advocate for moving away from the term “high functioning autism”:

  1. Oversimplification of autism: The term “high functioning autism” suggests that autism can be neatly divided into distinct categories of functioning. However, autism is a complex and diverse spectrum that encompasses a wide range of abilities and challenges. Using a single label fails to capture the full breadth of experiences and needs within the autism community.
  2. Masking and hidden struggles: Autistic Individuals who may be considered “high functioning” often face unique challenges and difficulties that may not be readily apparent. Many autistic individuals develop coping mechanisms and strategies to navigate social situations, which can mask their underlying struggles and lead to misunderstandings or dismissal of their support needs.
  3. Stigmatization and dismissiveness: The term “high functioning autism” can inadvertently contribute to stigmatization and dismissiveness toward autistic individuals who may not fit the stereotype of “high functioning.” It can create an artificial hierarchy within the autism community and perpetuate the misconception that those who are deemed “high functioning” require less support or accommodations.
  4. Individuality and diversity: Each autistic person is unique, with their own strengths, challenges, and support needs. Autism affects individuals differently, and focusing solely on functioning levels fails to acknowledge the rich diversity within the autism community. Emphasizing the individuality of each person can foster a more inclusive and accepting society.

Low Functioning Autism

Also sometimes referred to as “severe” or “profound” autism.

In my experience what I see the most here is this–low verbal ability and a lot of stimming. Lots of stimming means a lot of sensory processing issues.

It is usually assumed that a person with LFA is also intellectually disabled. As our knowledge base increases, we know that this is often a mistaken assumption.

The problem is on us (NTs) in that we do not know how to reach these people via communication. So, we assume that they are intellectually disabled. However, time and again, we are finding that with the right communication, people previously presumed to be IDD are not.

Here are some sub-sections that describe the characteristics and challenges of low functioning autism.

Characteristics of Low Functioning Autism

These are perceived characteristics.

  • Delayed or absent language development (usually very few options have been tried)
  • Limited or no eye contact (this comes from a mistaken NT superiority hierarchy in which eye contact is required or desirable, says who?)
  • Difficulty in understanding social cues and body language
  • Repetitive and stereotyped behaviors, such as hand-flapping, rocking, and spinning (stimming is perceived by NTs as undesirable, why?)
  • Severe sensory sensitivities, such as being extremely sensitive to certain sounds, textures, or smells (and NTs routine dismiss these sensitivities with gaslighting)
  • Difficulty in adapting to changes in routine or environment (another NT assumption–we usually don’t ask the person why they don’t want to do something, they often have a good reason)
  • Inability to mask lacking skills sets, or a lack of desire to mask

Similar to the term “high functioning autism,” the term “low functioning autism” is also considered problematic within the autism community.

Here are some reasons why people advocate for moving away from the term “low functioning autism”:

  1. Negative connotations: The term “low functioning” carries negative connotations and can perpetuate stereotypes and biases. It can imply a deficit-based view of autistic individuals, focusing solely on their limitations and challenges, rather than recognizing their strengths and abilities. This can lead to stigmatization and a lack of understanding and support.
  2. Oversimplification of autism: Autism is a complex and diverse spectrum, and using a single label like “low functioning” fails to capture the full range of abilities and challenges that autistic individuals may experience. It disregards the individuality and unique needs of each person, reducing them to a single dimension of functioning.
  3. Potential for underestimation: Autistic Individuals who may be labeled as “low functioning” may have hidden strengths and abilities that are not immediately apparent. This label can lead to underestimation of their potential and limit opportunities for growth, development, and meaningful inclusion in society.
  4. Focus on support needs: Instead of focusing on functioning labels, it is more helpful to understand and address the specific support needs of autistic people. Every person has different strengths and challenges, and it is important to provide appropriate support and accommodations based on those individual needs rather than relying on a broad categorization.
  5. No Growth: Individuals considered to be LFA usually are not challenged or encouraged to grow; they usually are expected to always be LFA.

High Functioning vs Low Functioning Autism

People considered to be HFA often go without needed supports and services. They’re not considered “autistic enough” to get accommodations.

People considered to be LFA are not expected to grow and learn. While they may receive more supports and services than HFA people do, they are not challenged and supported and given the same expectations as others.

In other words, adults around them often give up or don’t expect them to achieve.

We should all presume competence. I’ve said it before–if us neurotypicals are so smart, why can’t we figure this out?

Because we’re not listening, that’s why.

It is important to recognize that autism is a complex and diverse spectrum, and each individual should be understood and supported based on their unique needs, strengths, and challenges.

By moving away from functioning labels, we can foster a more inclusive and accepting society that values the individuality and potential of every person with autism.