Autism: The Spectrum and Functioning Labels

Dear Readers,

In today’s Autism post I want to talk about the Autism Spectrum and also about Functioning Labels.

**Disclaimer: I am not a doctor or a psychologist at all. However I am autistic. This is not meant as a diagnostic tool or as medical advice this is purely my opinion.**

I will start with the Spectrum.

This is something that is important to me because it actually comes up in conversations quite often. Autism is defined as a Spectrum disorder and the term “spectrum” was introduced by Lorna Wing (source: National Autistic Society). The issue that I find is how spectrum is pictured. A lot of people seem to define this as a linear spectrum where as the people I know who are autistic and the specialists I have spoken to view it as a 3D spectrum. I will try and illustrate this.

Some people see Autism as a linear Spectrum

However the term Spectrum was introduced to try and explain how there are a multitude of different ways that people can present as Autistic and that they are all valid. Therefore a circular model is far more appropriate.

All Autistic people on the Spectrum are equally autistic, just differently autistic.

My personal experience and issue with the linear idea of the Autism Spectrum is when people say, “oh well we’re all a little bit autistic aren’t we?”. No. No we’re not all a little bit autistic. Autistic people literally have a different brain, we are neurologically different to people who do not have autism (Source Psycom). This is why when you are tested for autism they want to know that it was present from birth. I am not saying this because I want to somehow gate keep who is autistic or not, but because saying everyone is a little Autistic is a way of invalidating my and other autistic experiences.

Here is a quick example. The person I am talking to may not know but I really struggle badly in social situations and masking is so hard for me that the next day I often get ill. I also have very little day to day energy to complete simple tasks like housework and general admin. My executive functioning issues also make getting things done even harder.
So when they say, we’re all a little bit Autistic, they are probably trying to be kind in some way. But actually what I hear is: We all have the same struggles so if you’re not managing to do what I am doing then you’re just lazy and a failure.

For years I wondered why I found doing simple tasks so much harder than the people around me. I spent ages analysing and wondering what the heck is wrong with me or am I just subconsciously very lazy? Do I have some hidden dreaded disease that is sapping all of my energy? When I finally found out that I was autistic and that there were a whole lot of other people out there that are like me it was such a relief. I learned terms like executive function, Sensory Overload, Impaired processing speed, masking, and the energy spoon theory.

When someone says we’re all autistic they are invalidating my discovery and relief. They are not comforting me one little bit.

Functioning Labels

In the same line with the idea of Autism as a linear Spectrum is the use of functioning labels. Some people like to separate Autistic people in to High functioning and Low functioning. Personally I find this a bit insulting.

To call some one high functioning makes it sound like they are more valued by society. It focuses on the autistic person and what they can provide to society on their own. It also completely ignores any of the struggles they might face. The other issue is the criteria by which people are judged are very subjective and not fair at all. For example a non verbal person may be considered low functioning because they do not speak with their mouth… however they might be fully capable of using sign language or using a text to speech function on their phone. This is purely society placing a higher value on someone who can speak with their mouth over other methods of communication. In my opinion this is not fair.

However not all autistic people have the same struggles and I definitely see the need for more clarification and this is why I prefer the needs labels. High support needs and low support needs. This puts less focus on what the autistic person can provide for society and more on what society can do for the autistic person. It is important to acknowledge that some people do have higher support needs than other people. Some autistic people need full time carers, some don’t need any carers and other’s need a carer sometimes.

I fall into the sometimes category. It really depends on how much is going on in my life at a given point and how stressful those things are. There are some times in my life (mostly when I am home a lot with limited social interaction) that I can do everything I need to do just with the help of my strict routine, millions of lists and my hundreds of alarms on my phone. Then there are other times (like when we had to fly to another city to go and stay in a strange house and meet strange people in a busy crowded restaurant) when I can barely do anything, I can’t remember to wash my hair, I forget to eat at all, I can’t do housework, I can’t pack or organise things, I can’t cook. My darling husband is amazing and picks up all the slack during those times making sure I have everything that I need and planning for himself and me.

This is also why I prefer the support needs labels to the functioning labels and I feel that they are more fluid. You can have high support needs days and low support needs days. You are not locked into one state of being forever. And each autistic person’s high vs low support days will look different because (back to the top) it’s a spectrum!

Thank you for reading this post, I hope that you found it informative.
Until next time
Keep Crafty,
Peace and Love
Ellie

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