One day last week, my friend sent me a message. ‘I saw a girl on Tik Tok who said that she didn't like the terms low functioning and high functioning, and I'd be interested to know why those labels are changing?’ and then sent through a very informative TikTok by @evelynjeans entitled ‘Why I dislike being called high functioning.’
I thought it would make a good blog post. So, I will explore why the labels need changing and enlighten my friend and anyone who reads this.
Big disclaimer, though. I am physically disabled. Also neurotypical, I’m writing this article to be helpful, and I have done as much research as possible. However, I will get many things wrong. For example, I might get some of the symptoms of sensory overload wrong. So after, please look online and check other articles to broaden your horizons and hear from people who live with this too!
What is the difference?
The two different labels have two different meanings, so nobody gets confused. Here’s a simple explanation.
High functioning means: The person has a significantly developed language and can live independently.
Low functioning means: The person cannot live independently and will need help from a guardian or caregiver throughout their life.
Inaccuracy
The terms ‘high functioning’ and ‘low functioning’ have been around since the 1980s. It is used to distinguish between people with and without co-occurring intellectual disabilities. The term isn’t an official diagnostic term, according to Autism Awareness Australia.
Many people with Autism have advocated for a change in labels for a long time (I first became aware of it in 2017) because the terms‘ high functioning’ and ‘low-functioning lead to assumptions about a person’s capabilities that may not be true.
An example
For example, if someone has ‘high-functioning autism, the label means to clinicians and schools that the person can be independent and have little to no problem with language skills. However, the label makes people think they can’t have sensory overload and meltdown. It makes people think they need zero help at all. And so, they should be able to function like the average person and are expected to do so.
Yet, this might not be the case. They could still need help dealing with sensory overload, going shopping, and generally dealing with the problems of living in a neurotypical world. It leads to people getting little to no help when they still need it.
I would also like to point out that a person placed on the high functioning label presented symptoms such as sensory overload and horrible meltdowns. Some people would put them under the low functioning label instead. Making the labels seem more like a way to tell if you fit the spectrum of autism that abled people can pretend like you don’t have autism. That you fit their skewed view of what autism should be.
Low functioning is also harmful.
Many believe we should get rid of the low functioning label too. The low functioning label is also harmful as people within this range can still live as normally as anyone else. Using the label removes any function they do have- which is a lot typically.
Also, the low functioning label assumes that talking is the only way to communicate. Which obviously it isn’t. What on earth do we use traffic lights for? What are images used for in marketing? Did we forget Sign language was a thing?
It is infantilizing and assumes the person cannot live as well as a person that is non-disabled.
Also, many that are low functioning prefer hearing the term intellectual disability. It’s less offensive. Intellectual disability tells you more about how the condition affects them and gives you a better idea of supporting them. Whereas low functioning could encapsulate any number of ways being atypical affects a person, the support isn’t as easy to pinpoint.
What this leads to
Not only does this lead to not getting the proper support. The high functioning/ low functioning label’s also lead to exclusion from conversations around being autistic and atypical.
Because people assume those with the high functioning label need no support. So they don’t want them to speak for someone that’s low functioning or needs more help. People assume they don’t know what it’s like being atypical and living in the neurotypical world!
This isn’t the case, and it is dismissive that a person has autism and can help the conversation.
Ultimately the labels are outdated and don’t lead people under those labels to get the proper support. In fact, in some cases, it has lead to a loss of human rights. Which if you’re on the autism spectrum, it is already hard enough! It infantilizes people that are low-functioning and reinforces some horrible stereotypes.
I hope this has cleared some things up about why the labels need to change and furthers the argument against their use.
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