Hello humans,
Sorry it’s been a while, things have been so busy with A-levels, uni applications and just general life! Christmas and the New Year seem to have flown by and suddenly I’m 19 and going to move to work uni in the next year.
I’ve had a really exciting opportunity relating to autism; I don’t know if anything will come of it but I have applied to do a paid summer internship with the civil service which is specifically for people with autism. It’s been arranged through the group Ambitious about Autism, with whom there may be an opportunity to do some advocacy work! I really recommend checking out the organisation - they’re doing some incredible things!
But onto the topic of todays blog - Functioning Labels and why they are Damaging. I just want to say that everything I write is my own view, but I have done some research and spoken to advocates I respect in order to make sure I am correct in speaking on behalf of the community.
So the basics of high and low functioning labels is that it’s a way to further divide the autistic community by creating subsections of people that ‘can cope’ (high functioning) and people that ‘cannot cope’ (low functioning). Ultimately the labels promote masking (pretending) as people labelled as high functioning are mostly labelled that as they are able to appear as ‘normal’
I think it’s really difficult for society to accept that every single individual with autism presents differently and whilst there are common traits that may appear, usually even these differ depending on the individual. Society has an expectation that all autistic people can be grouped together so that it is easier to ignore/pretend to recognise, and labels only further this as society will shun people labelled as ‘low functioning’ due to how their autism presents, and do not recognise that autism acceptance is not just for the auties who manage in everyday society.
The issues with labels is that they confine individuals; when I was diagnosed with autism I was told “in the past we would say Asperger’s but we don’t say that now” and that I had high functioning ASD as I was intelligent and most of the time was able to engage with society. However, there have been plenty of times in my life when I have not been able to engage with society and completely shut down. All anyone would focus on was the missing academics, which whilst I was concerned about, I was completely unable to do anything, sometimes even getting out of bed was not possible. To put it plainly - I did not function. I was neither label because I simply did not.
I am by no means suggesting that people are not able to determine themselves as to what they are comfortable with, the same goes with the person first (I have autism) or diagnosis first (I am autistic) argument. It’s an individual choice, however I do feel that it is important to recognise issues with such labels, so that people are aware this is something they might need to check either with themselves or with someone they know who has autism. Personally for me, I switch between person first and diagnosis first regularly, depending on how I feel and what I feel is appropriate (or for the purposes of my personal statement - the one with the less characters!)
In terms of functioning labels, I’ll admit I used to pride myself on being ‘high functioning’ as I thought it meant I was better. I remember when my man was diagnosed with leukaemia, she told us that she had ‘the right kind to have’ as it was treatable and something she was going to have to live with. If I’m honest, I used to feel the same about autism, that I had the ‘right kind’ as I could mask and didn’t appear autistic unless you got to know me. I now understand how damaging this is, not only to the autism community but also to myself and my accepting of my diagnosis. I see now that those ideas stemmed from ablism that society had forced me to accept.
This attitude is completely different now, as I have grown up understanding and educating myself about these questions within the autism community, as well as going to a SEN school where I met and became friends with people who society had outcast, and yet I found where I belonged and it turned me into the person I am.
I recognise that I still have quite a way to go in terms of being an advocate and that it’s a process that I will go through my entire life as, it’s simply not possible to know everything about autism and the community but I keep learning - if you want to learn anymore, I follow a number of autism advocacy accounts on Instagram that I am always reposting!
So if referring to me and my diagnosis, please do not use the term ‘high functioning’ whilst I may appear to be coping, it’s not always easy and requires a lot of emotional strength daily.
If talking about my diagnosis please just say I have autism/I am autistic.
See you next time,
E x