The Functioning Label Debate

The functioning label debate is one that occurs pretty much daily in the online autism communities I belong to. It is a complex debate but I feel it is worth discussing on here in order to enlighten people as to just how complex the autistic spectrum is and how separating it into two distinct functioning labels is not helpful.

The majority of people, including health professionals, view autistic people as either “high functioning” (which includes those of us with a diagnosis of Aspergers) or “low functioning”. They see it as a helpful way to describe how we “function” in society. However, one of the biggest issues with these labels is that it shapes in a very narrow way how people view us. As one person in an online group for people on the spectrum wrote recently, “All it does is dismiss the weaknesses of those who are seen as high functioning and, with people who are seen as low functioning, it dismisses their strengths”. I thought this was a very succinct and accurate way of putting it. What a lot of people who aren’t on the spectrum and don’t have a lot of experience with people on the spectrum don’t understand is that actually a lot of instinctive behaviour in autism is very similar, whether someone is classified as high or low functioning. The difference is that those of us who are labelled as high functioning display learned behaviour which those who are classified as low functioning cannot always learn in the same way because they often have severe learning difficulties. Almost all of my behaviour is learned-the only time you will see my instinctive behaviour is when I am stressed or very tired. Most people on the spectrum who can get by socially do so because they are essentially “parroting” the behavour that they have learned people want to see. To me personally, there is no gaping chasm between myself and my students who are classified as “low functioning” in terms of the way we process things and the way we perceive our environment-the only difference is that I have years and years of learned behaviour and I don’t have learning difficulties whereas they primarily display instinctive behaviour and have severe learning difficulties.

I can imagine people thinking now, “But it’s about more than that! You can speak and type-that makes you high functioning”. Yes, in your terms, it does. I am thankful every day for my verbal ability-it allows me to explain myself and to explain how I perceive the world to other people. However, just because someone with autism may not communicate with speech, it does not mean they have nothing to say. There are lots of autistic people out there who type extremely articulately and eloquently but who are classifed as “non verbal”. Speech is not the only method of communication. Yes it is the easiest for most people to understand but there are so many other ways of communicating-sometimes you just need to look for them. I would also like to point out one thing-just because someone with autism has the ability to speak, it does not mean they can be understood. People continually misunderstand what I say when I am speaking to them verbally-it’s like there’s a block between the thought in my mind and what comes out of my mouth. I can speak but I can’t always communicate in the way that people expect me to be able to. Also, like a lot of people on the spectrum (and probably quite a few people not on the spectrum), I lose the ability to speak during times of extreme stress or emotional turmoil. When this does happen, those of us who are described as “high functioning” get no understanding for this temporary loss of verbal ability. Most people seem to be of the opinion that, as we can usually speak, we are choosing to be awkward and should just get over it and speak.

This brings me nicely onto the other problem with functioning labels. As mentioned before, being labelled as “high functioning” leads people to dismiss your weaknesses and being labelled as “low functioning” leads people to dismiss your strengths. I have come across so many people online and in real life who have been told that, as they are intelligent, they should find a way to “grow out” of their autism. This to me highlights a real ignorance as to what autism is. It is not an intellectual disability although a lot of people with autism can have learning difficulties too-it is a difference in our neurological wiring. It comes back to instinctive behaviour again-I can learn so many coping strategies in order to live my day to day life but I cannot change my instinct. Similarly, those people with autism who are labelled “low functioning” are so often simply seen as a list of negative symptoms and weaknesses when they have so many strengths. When eloquently written books and blog posts are authored by such individuals, people are amazed. They assume that, because someone presents with severe autism, they are incapable of communicating or of sensing the world around them when, in fact, it has been proven that most people with autism are highly observant people who notice everything and particularly pick up on people’s attitudes towards them. All of us are so much more than a functioning label and these labels can really damage us. When people who are seen as “high functioning” fail to get or keep a job because of their communication difficulties or fail to pay their rent on time because they have executive functioning issues, we are offered no understanding. If we try and explain where it went wrong, people accuse us of using autism as an excuse. Their belief is that, because most of the time we can function in society, we should be able to function at exactly the same level as they do. Unfortunately, the autistic spectrum is a lot more complex than that. Someone can be “high functioning” in one environment with the right level of understanding where they are at their most comfortable and that same individual can be “low functioning” later that same day in an environment that is not suited to their comfort, such as a busy supermarket or crowded train station. People with Aspergers are just as prone to meltdowns as people who are diagnosed with severe autism. The only difference is that we are often simply viewed as being awkward when we can’t cope with circumstances any more because people fail to grasp the difference between learned behaviour and our instinctive coping mechanisms.

Please remember that the person with Aspergers who you know is often simply acting in order to be socially acceptable. We do this because we know that that’s what society expects but, over time, it takes its toll and is exhausting because it doesn’t come naturally to us. Please let us have our coping mechanisms at the end of a long day trying our best to fit in. We are all more than functioning labels. They may be useful to certain sections of society in order to target services but, when it comes down to it, we are not labels-we are humans and, like all humans, we differ on a day to day basis. What we come across like in one situation is likely to be completely different to how we come across in another situation, like everyone. Please don’t assume that those of us with Aspergers don;t have our own issues and struggles. We may not have learning difficulties but our ability to function in academic terms has no bearing on how much stimuli we can tolerate in everyday life. Conversely, please don’t assume that someone with severe autism has nothing to offer. Respect their methods of communication and you will get a lot back. You need to try and view autism through our world, not yours. I know it’s very difficult which is why I set up this blog in the first place. I hope that people can see just how complex the spectrum is and not to take someone’s functioning label as a be all and end all. If you google “I am Joe’s Functioning Label”, it will take you to a fantastically written blog post detailing just how damaging these labels can be. I hope this post has made people think about how complex a topic this is-please see us as us, not as functioning labels.

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One Response to The Functioning Label Debate

  1. A very well written piece as usual steph. I have had the inability to speech in times of emotional trauma and I am quite often are misunderstood with my speech issues but also the underlying autism. At the end of the day lots of things that wouldnt bother me at at the start irritate me so more instintive behaviour comes out that causes conflict. I don’t like conflict but sometimes it is unavoidable.

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