I was on the bus home from college today, when some young (navy)? cadets got on a couple of stops after me. The bus was crammed full of people to begin with, but when it emptied out a bit there were some spare seats and one of the cadets decided to move to a free double seat to spread out a bit. The others, joking, jeered 'loner' and, 'what are you, autistic?!', to rounds of laughter from them all.
'Hilarious' I thought, in the most sarcastic tone my mind could muster.
So here is my problems with labels. Autistics have been in society since records began. Only they weren't called 'autistics'. They were just known as 'Ella the quiet girl', 'mad aunt Flo' or 'Tom the maths genius', or maybe; maybe they were just known by their names, Albert Einstein, Charles Darwin, Amadeus Mozart, Sir Isaac Newton, to name a few. In history, before labels, people were treated as individuals. If hypothetically one person knew Mozart and Einstein, they wouldn't assume Einstein was too a musical child prodigy and Mozart had the mind that would alter the way we view the scientific world today. (Although if their life spans had overlapped, I would've loved to know how they got on if someone had introduced them to each other!).
Say someone knows 1 person with autism. Take my brother; he has classic-ish Kanner autism, severe learning difficulties and cerebral palsy. They might assume all autistic people are like him. To discover that I too have an Autistic Spectrum Disorder (albeit up the Aspergers end), they wouldn't believe me. (A lot of people don't!).
My point here is over-generalisation. Just because this one person with Aspergers you knew when you were 16 loved boats, doesn't mean I do. Just because he/she hated CSI, doesn't mean I do... you get the picture?
I think the lack of understanding among the general population about these conditions leads to damaging over generalisation regarding a group of people who fall under one label. Saying all people with Autism love trains is a bit like saying all people with Anorexia love Maths, or all people with Kidney disease love painting . It's completely illogical, yet most seem unaware of that.
This is a major problem with professionals too - I know guidelines have to be put in place to give health professionals an idea of what to do, but when they are so generic, you loose the person, and they (too often) become the label to their health professional.
- Guideline x.45.y.99: 1st line treatment R, 2nd line treatment Y, if that doesn't work, ignore them and tell them it's stress! I know it's not quite as simple as that and a lot of health professionals out there do care very much about their patients and want to do what's best for them - I'm not having a go, I'm just saying what it feels like to us. (If you're not aware, I am currently preparing to apply to study medicine at uni)
This 'lost in a guideline' scenario becomes not just impersonal, but highly dangerous, especially when the incorrect label is applied. (As in my case it was for many years, but let's not go there now).
So I think I've moaned about the bad and the ugly long enough, let's look at some good things about labels.
When I first realised that I had Aspergers, it's only because there is a name for it that I was able to find collections of information about the syndrome and resources to help me. If there was no label, I would never have found Rudy Simone's book which for the first time in my life, I was reading and thought, 'she could be describing me. I'm not the only one!'
That sense of community and (a part of) my identity as an aspie has been essential to me moving forward in life and recovering from the mess my life had gotten into. That is a very big positive.
For professionals, it can help to pool resources and enable those who need help to receive the right kind of help. (However that only works when the correct label is applied!)
So... labels. I think if people were more aware of conditions and that we are still individual persons, then the good would outweigh the bad. However, the world today is a long, long way off that.
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