The labelling issue, by a ‘mildly autistic’ ‘high-functioning’ ‘person with Asperger Syndrome’
If you had to describe yourself in one word, what would it be?
Don’t bother answering. It’s a stupid question and we all know it. (Although for the record, as a child I always used “indescribable”. Because I was a smartypants.)
But it’s surprising how quickly some people take the word “autistic” and apply it as a valid description of a child (or adult), with no extra words necessary. Some people are “autistic”, and apparently that’s all we need to know about them.
Of course, anyone who’s ever even known an autistic person (or ‘person with autism’, but there’ll be plenty of discussion on that later) will know that one word is never enough. And the other adjectives- like those in the title- often help a little but divide opinion a lot.
I suspect most people know this. But all the same, it’s surprising how venomous some people can be about the issue!
Personally, I try not to place too much importance on specific language. If I’m on a sinking ship, I won’t care whether I’m handed a ‘lifejacket’ or a ‘buoyancy aid’. I’d be slightly more interested in not drowning.
That said, adjectives/descriptors/labels (depending on your opinion) do seem to me like a necessary evil. There are as many different kinds of autism as there are autistic people, so we do need extra language to differentiate between them.
But when people rely on this extra language too much, we start to have problems.
In this article, I will go through the main five labels and discuss both sides of the debate- whether the debate is “should we use this term?” or “which of these terms is better?” (And yes, this is a discussion. I’m aiming to inform here, not persuade.)
I will be counting them down in what I believe to be the reverse order of importance.
[Edit- a few months after writing this I held a poll. 477 people answered questions regarding whether they used “mild, moderate and severe”, “high/low-functioning” and “autistic person”/”person with autism”. Those who are interested, the poll results can be found here (opens in new window).]
5: ‘Mild’, ‘moderate’ and ‘severe’ autism
I may have put this at number five, but it’s the one I’ve been confronted about most.
Yes, I know that I used ‘mild autism’ in the titles of both my most popular articles (Growing Up Autistic: 10 tips for teenagers with Asperger Syndrome or mild autism, and Asperger Syndrome: 50 facts about having mild autism). And yes, these days I’m less likely to use the term, having listened to both arguments.
But no, I’m not going back and changing those titles. I meant everything I wrote at the time, and I’m not going to change the past.
The case for using ‘mild, moderate and severe’
If you tell someone “an autistic person’s about to enter the room”, they may be surprised when someone like me walks in, making eye contact and smiling, using his voice to say hello… and talking about his years as a primary school teacher.
Like it or not, public perception of autism is not very diverse (yet). There may be a difference in how I get treated depending on whether I’m introduced as “autistic” or “mildly autistic”.
We need adjectives like “mild” or “severe” to help other people understand the extent of the autistic person’s needs.
The case against using ‘mild, moderate and severe’
You either have autism or you don’t.
Simple as that, really. There’s no middle ground. You can’t have a ‘mild broken leg’.
My autism plays a large part in my personality, regardless of how it affects me academically. If you leave learning difficulties out of the conversation, autism affects all autistic people personality-wise.
My personal opinion
A friend of mine once left a Facebook comment that really stuck with me. I can’t find it anymore, but it was along the lines of:
“I worry about my son being called ‘mildly autistic’, because people may think that his autism doesn’t affect him that much.”
And that’s a perfect way of putting it. There is a huge, huge difference between someone who is “mildly autistic” and someone who is “mildly affected by autism”.
I have known severely autistic children who are literally the happiest kids I have ever had the pleasure to meet.
I have also met mildly autistic people who have attempted suicide because they feel too alienated from the rest of society. (They may have been mildly autistic, but they were severely affected.)
This may be a controversial comment, but for some people it is much harder being on the milder end of the spectrum. Because once you’re intellectually capable of understanding what society expects from you (and the social consequences of not reaching those expectations), things can get bloody scary.
Words like mild, moderate and severe are, like I said, necessary evils. They help to differentiate between levels of intellectual ability.
Beyond that though, don’t expect them to describe much.
4: ‘Person with autism’ versus ‘autistic person’
Ok, I’ve seen some ferocious keyboard battles over this one.
Not that these battles have actually helped anyone on the autism spectrum, but at least people are at each other’s throats about how to be polite.
The case for using ‘person with autism’
When I was training as a teacher, one of the very first things they told me was “they are not ‘special needs kids’. They are kids with special needs.”
The sentiment is simple. The most important thing about them is them. Not their added extras.
Also, you wouldn’t call a person with cancer ‘a cancerous person’. Their problems are not a part of the person they truly are, so don’t talk as if they are.
I remember the very first time I walked into a special school, as a fairly inexperienced teaching student who was very keen to learn. I was so keen to learn that I set about trying to establish what each student’s condition was, so I was better placed to help them from Day One.
I cringe a little now, thinking back to that. I should have done what I spent the rest of my teaching career doing: getting to know the students as people. Their personal needs were so much greater than their conditions alone.
The case for using ‘autistic person’
This argument, in my experience, seems to be favoured by most autistic people. (Maybe that alone wins the debate.)
Because, by saying “a person with autism”, you’re trying to disassociate them with their autism.
This automatically means the person saying the sentence thinks autism is bad.
Think about it. I use my left hand while writing, but you wouldn’t call me “a person with left-handedness”, because it would sound like it’s deficient to be left-handed.
Autistic people often consider their autism as something central to them. Not just their personality, but their very identity. So it can feel very hurtful if you imply that their autism needs to be shoved to the back of the sentence, because it must be such a negative part of them.
My personal opinion
To be honest… I don’t care about this half as much as people might think.
Why? Because if I’m trying to comfort a child mid-panic attack, while they’re yelling in fear and unable to express what’s triggered their anxiety, the last thing I’ll be thinking about is the correct way of ordering the words in my sentences.
In fact, I once took an autistic child to hospital during an epileptic seizure. And funnily enough, when the paramedics came I wasn’t wondering whether to say “he’s autistic” or “he has autism”.
If I had to choose which side has the stronger case, I’d go for ‘autistic person’ hands down. But practically speaking, I just go with whichever one sounds best in the sentence.
3: ‘High’ or ‘low-functioning’
Ok, I have to admit the words here do sound fairly emotive- if not judgemental.
The case for using ‘high/low-functioning’
You could pretty much copy and paste what I wrote for ‘mild, moderate and severe’.
When people hear ‘autism’, they often hear ‘learning difficulties’. Of course, this is not necessarily true. And even in the cases when it is, it’s only true to different extents.
High and low-functioning were invented to determine the autistic person’s level of ability. Without using the phrase ‘high-functioning’, people only have the word ‘autistic’ to go on… and may assume that the person’s ‘low-functioning’ like most autistic people are reputed to be.
The case against using ‘high/low-functioning’
Let’s face it, it sounds pretty insulting to call a struggling child ‘low-functioning’.
And let’s face it, it sounds too much like an ego boost when telling other people “actually, I’m high-functioning.”
Even though ‘high and low functioning’ are sometimes necessary in order to help others understand your child, the positive/negative connotations make them fairly inappropriate- especially when you’re talking about a subject as sensitive as autism.
Besides, they’re not always accurate. I read a Facebook comment that sealed my opinion on this:
“My autistic girl is eight years old. She’s not toilet trained, but she’s reading The Hobbit. Is she meant to be high-functioning or low-functioning?”
My personal opinion
You know, I tried to write a more convincing case for using ‘high/low-functioning’… but I just couldn’t. I find them belittling.
I may use the term ‘high-functioning’ when talking to a depressed youngster with Asperger’s, whilst reassuring him that his condition is not a curse. But I wouldn’t use it to describe myself. It would sound like I’m showing off.
And ‘low-functioning’? Never to anyone, never about anyone.
If you’re going to classify levels of difficulty, why not use ‘mild’, ‘moderate’ and ‘severe’? They’re just as descriptive, have the same good and bad points, but they’re a hell of a lot less emotive.
2: ‘Asperger Syndrome’ versus ‘Autistic Spectrum Disorder Level One’
This point will probably be less about using these terms as labels, and more about which one is better to consider as part of your identity.
For those who don’t already know, in 2013 the American Psychiatric Association published a fifth revision of the DSM- the ‘Diagnostic and Statistical Manual of Mental Disorders’, often referred to as ‘the psychiatrists bible’ in America. In this revision, it brought all autism-related diagnoses into one wide-reaching diagnosis: Autistic Spectrum Disorder.
This means that, in America at least, people are no longer diagnosed with ‘Asperger Syndrome’, but rather ‘Autistic Spectrum Disorder Level One’- the ‘Level One’ bit meaning less severely affected than those on ‘Level Two’ or ‘Level Three’.
(I’m not aware of this affecting Britain in the short term, and there’s no rational reason why it should. After all, we use the World Health Organisation’s ICD- International Classification of Diseases- rather than the American DSM. That said, as the saying goes, when America sneezes the world catches a cold.)
The case for ‘Asperger Syndrome’
It’s no coincidence that Asperger’s and autism were separate diagnoses for so long. It’s because they genuinely are different. Perhaps on the same scale with plenty of similarities, but different.
And of course, public understanding of people with Asperger’s is very different to their understanding of people with autism. If you just call everyone ‘autistic’, the terminology becomes so simplified that nobody will understand what you really mean.
For some of us, Asperger Syndrome is part of our identity. It’s a phrase that explains a huge part of our personality, and we don’t want it being replaced by a much more clinical, colder-sounding phrase.
(While we’re at it, Asperger Syndrome is two words long. Making the name longer does not simplify it.)
Besides, if we stop saying ‘Asperger Syndrome’, we’ll have no choice but to resort to other differentiating terms like ‘high-functioning’ or ‘mildly autistic’. As you may have gathered, I’m not up for that.
The case for ‘Autistic Spectrum Disorder Level One’
According to the 1,500 people who reportedly influenced DSM-5, the change was supposed to simplify diagnoses. People were being diagnosed with several disorders at once that were really under the same umbrella. On top of that, autism is characterised by a set of common behaviours anyway, so it’s simpler to use the same scale and differentiate according to severity.
But I think I may be the wrong person to write this paragraph. The doctors and psychologists know far more about Asperger’s than me.
(You know, when I wrote that sentence it honestly wasn’t meant to be sarcastic. But it did occur to me while writing it that someone who actually has the condition may have a valid opinion on the matter. So if you want to take that last bit sarcastically, feel free to.)
My personal opinion
Ok, maybe putting all the autism-related disorders on one scale does simplify things. Then again, some things should not be simplified. Like things that aren’t simple, for example.
So screw the experts. A whole generation of people with Asperger Syndrome are going nowhere, and neither is the name. I’ll keep using it until revision #6 comes out and the experts change their minds back again.
And the number one label for people on the spectrum is…
Yes, ‘autistic’ itself can be used as a label. It frequently is. Often we don’t even notice.
I’m not going to argue the cases for and against using the phrase ‘autism’. It blatantly needs to be used. Autistic people suffered for a long time before we had a name for autism.
But please, please be careful before using it as a label. Like I said in the introduction, it is so easy to think of an autistic child as ‘autistic’, and leave it at that.
Also, I’d like to give some very important advice to autistic people reading this, especially those who are recently diagnosed.
You are more than your autism. So, so much more.
Yes, my Asperger’s makes up a lot of my identity, and it drives a lot of my personality. But:
- My Asperger’s did not make me become a teacher.
- My Asperger’s did not turn me into a Christian.
- My Asperger’s had no impact on my choice to become a fiction writer.
- I get happy, sad, excited, frustrated, and a whole bunch of other words… just like every other human on Earth.
So, whereas my Asperger’s is a big and important part of me, it would be unhealthy for me to wear it as a label. If I allowed it to define me as a whole person, I’d miss out on so many parts of myself. The parts of me that I’ve chosen.
Conclusion: what attitude should we have?
It wouldn’t surprise me at all if the comments sections (here and on Facebook) light up with debate. I wouldn’t mind either- debate is healthy and useful. But bear this in mind.
No matter what phrase you subscribe to, you will never find an autism adjective that’s good enough to accurately describe you/your child.
I once heard an interesting quote from South African zoologist Lyall Watson:
“If the brain were so simple we could understand it, we would be so simple we wouldn’t.”
In a similar way, if autism really were simple enough to describe perfectly in two or three words, it wouldn’t be enough of an issue to bother describing at all.
And since it clearly is, our sentences need to be longer.
Use whichever descriptors you want, but understand that no descriptor will ever be perfect. They are simply our efforts to make different types of autism sound accurately different.
They are definitely not worth using as lifelong identification labels- for yourself, your child, or anybody else. Personalities are too big and complex for that.
If you really want to describe an autistic person’s personality, use more words.
Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
Copyright © Chris Bonnello 2015-2017
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