Especially If Your Child is Considered  "High Functioning" 

For parents of autistic children, the idea that "high functioning" means a child is less likely to develop problems is a dangerous misconception. 

“High functioning” is a label that parents and clinicians apply to an autistic child, based on how they function socially and emotionally. Functioning labels are often used by schools to describe a child's learning abilities, and can lead to negative stereotypes about children with autism. 

If a child is considered "high functioning," they are more likely to be perceived as having low levels of social anxiety, less need for supports, and an increased likelihood of appearing similar to their neurotypical peers…even though those assumptions may not actually be true."

In this article, we're going to dive into the issue of functioning labels and offer some suggestions on better ways for you to describe your autistic child’s needs. 

Why functioning labels are harmful to autistic children (and adults).

The term “high functioning autism” can be particularly problematic because it increases people’s expectations of an autistic person. If and when they cannot meet those unrealistic expectations due to their autism or another reason, it can make it even more difficult for them to get the support they need.

This term is often used to describe kids whose parents, teachers, and doctors have spent a lot of time and money trying to help them function in society with minimal support. They may appear successful, but it often comes at a cost you may not see behind closed doors.

Likewise, if you label a child as “low functioning,” typically, people will not expect very much of them, and may even go so far as to not engage or assume the person isn’t capable of understanding their environment.

How functioning labels affect autistic kids' self-image.

It’s very common for parents of autistic kids to use labels such as “high functioning” and “low functioning” to describe their child’s abilities…as humans, we want to make sense of our world. Putting “things” into categories is one of our favorite things to do.

The problem is these labels aren’t based on reality. Many “high functioning” autistics are quite capable of interacting with others and performing everyday tasks. However, they may lack skills in specific areas, including verbal communication and social skills. In other words, even if they have the ability to function with others, they probably still struggle in some areas.

And the reverse is true for those labeled “low functioning…”

In a nutshell, functioning labels mean “high functioning” autistic people have their needs ignored, and “low functioning” autistic people have their strengths ignored. Either way, a big part of what they need to live their most successful and happy lives is missing. 

When autistic people are told that they are "high functioning" or "low functioning," they’re often met with challenges to their autonomy, self-esteem, and sense of safety. They may feel less able to decide for themselves what they want or need, which leads them to avoid situations that they might actually enjoy. 

In turn, this means that many children with autism are labeled as "low functioning" and excluded from activities in schools and daycare. The label of "low functioning" also impacts the decisions made by teachers and therapists who create the educational plans for young children…if they think a “low functioning” child will never be able to read, they may not even try to teach them how! This can result in children with autism being forced into group settings and being treated as if they are unable to learn. 

But the biggest problem with functioning labels is the way it makes autistic children and adults see themselves…

What to do instead of using autism functioning labels.

I like to use the term "support needs" to talk about the areas where my kids may need some extra support. It takes the issue of functioning labels off the table, and doesn't give people a false impression of their strengths.

For example - and this really is an example, I'm not talking about my kids here:

Johnny has low support needs for self-care tasks and verbal communication but needs more support with fine motor tasks, and one-on-one assistance with staying on task at school. 

That’s much more descriptive than saying “high functioning,” which is what we’d probably think of when someone can do daily self-care tasks and communicate verbally.

In the US, there are three different "levels" of autism that we can use when discussing our children's diagnosis with professionals. As more and more children are diagnosed autistic, the general public is becoming more familiar with what these terms mean, too...

• ASD Level 1 which was previously called Asperger's Syndrome. Those diagnosed with Level 1 Autism are generally assumed to have low support needs and an average or above IQ, although that isn’t always the case.

• ASD Level 2 which is considered moderate autism. They tend to fall in the middle of the spectrum, and their needs and support levels can vary widely.

• ASD Level 3 which is considered "severe" autism. They often require assistance with a large number of tasks, including communication, and activities of daily living. They may also have an intellectual disability.

Conclusion

We must remember that labels are just that—labels. They’re not necessarily a reflection of any inherent qualities or abilities. Labeling someone can often lead to a failure to treat them as an individual, which often creates a lack of understanding or respect for their needs. The label itself can cause others to perceive them negatively, and can even cause self-doubt and shame. 

There are better ways to communicate with others about how our children’s autism affects them and their daily lives than using functioning labels!

I'd love to know your opinion on functioning labels for your autistic child...do you use them? Do you find them helpful or do you dislike them? Leave me a comment below letting me know what you think!