I recently joined a couple of autism groups on Facebook. They brought some issues to light I was not even aware of or remind me of others I had come across before. It got me thinking about things and I decided to share some of the issues that come up more regularly. I hope it helps others to understand autism and the autistic community a bit better.
Autism is lifelong; you cannot develop it later in life. Hence it is not caused by immunisation such as MMR vaccines or diet or by certain food colourings because it is something that you are either born with or are not. Being lifelong also means it does not stop when a person becomes adult, although you could be forgiven for thinking it does since most of the support and information out there for it is based around children. However some people only find out they are autistic later in life so it can seem as if they suddenly developed it, but actually it was just never picked up on before.
The autism community have a phrase ‘If you know one person with autism, you know one person with autism’. Autism affects everyone with it differently and just like people without it we all have individual personalities, we do not all like the same things, we do not all have the same beliefs and we have different skill sets. Some people make assumptions based on their autistic relative or friend which are often wrong and it is annoying.
Some people act like all autistic people are wonderful and can never do anything wrong intentionally. As an autistic person I am telling you this is simply untrue. Again I have a personality and sometimes I can be rude to someone on purpose, or I can simply not get on with everyone because let’s face it most people do not get on with everyone. Some autistic people can commit crime knowingly. I find it patronising when autistic people are treated as if we are all little angelic beings. Treating autistic children this way only leads to autistic adults who then think autism is an excuse to get away with things.
Car stickers, t-shirts or anything else with ‘I love someone with autism’ printed on them are patronising and very annoying. They tend to be purchased by parents of autistic children, which seems very odd to me because you are supposed to love your children autistic or not. There is a whole bunch of autism martyr parents who make out that they are some kind of amazing person for being able to love their child despite the child being autistic. Firstly it gives autism a negative association for the child and can mean that person grows up to feel like a burden. Secondly it makes autism the main thing about that child, as if they are autistic first and a person second.
Aspergers was once thought of as a separate condition to autism although with similarities. Autism is now considered to be a spectrum with a much wider range of abilities and characteristics on it than previously thought. Aspergers is now seen as on the autistic spectrum. Some experts are now dropping the Aspergers diagnosis altogether and purely diagnosing autism to make it clear that the person is on the spectrum.
I dislike positive versus negative autism posts. There are a lot of posts that go on about positive traits of autism. When it can be hard to separate autism from a person’s personality because it is just part of who they are and how their brain is wired this is meaningless. That and I can often find a way to turn a so called positive trait into a negative, depends on perception. Autism is just part of who I am and that is neither good nor bad.
Autism often comes with co-conditions. Conditions you can have without being autistic and not all autistic people have them all, but are often seen in people with autism. OCD is one of the most common co-conditions seen with autism. I have both and my autism can make some of my OCD trait worse. Some kind of learning disability is extremely common with autistic people, sometimes only in certain specific areas and sometimes much more pronounced. I am almost certain I have dyscalculia, a difficulty in understanding arithmetic, sort of like a maths version of dyslexia. A lot of autistic people also have epilepsy or some kind of fits, although I personally do not.
Autistic people can have any kind of mental health issue anyone else can. So you can have autistic people who are also bipolar or schizophrenic for example. Very commonly autistic people have depression and anxiety.
In the autistic community people without autism are often known as NT, which stands for neurotypical. Meaning people who have typical developmental and cognitive abilities.
Autistic people are often described as ‘high’ or ‘low’ functioning by others, but a lot of autistic people dislike these terms. If someone is described as low functioning it can lead to a person being denied a chance at doing things for themselves or what they can do being ignored. Describing someone as high functioning can lead to that person feeling unable to ask for support or being denied support as they are seen as being able to cope on their own with everything. Also I am more high functioning on some days than others depending on the situation I am in, my mood and others around me. The terms also play to the stereotype that high functioning autistic people all have a really high IQ or some amazing talent like number calculation and low functioning are all brain dead morons. In fact I have pretty average intelligence and do not seem to have some savant ability at anything, and most autistic people seem to be similar.
For many years the symbol for autism was a multi coloured puzzle piece. This has now fallen out of favour with many autistic people, all. To a lot of autistic people the puzzle piece says that we are a puzzle to others and missing pieces . The National Autistic Society in the UK have dropped the puzzle piece from their logo now. The preferred symbol now used by a lot of autistic people is the infinity sign with a spectrum of colours on it.
ABA, Applied Behaviour Therapy used to be the main therapy used with autistic children. It is basically teaching an autistic child that their autistic traits are wrong and they should mask who they are. The argument for it is that the autistic child will fit in to society better if they act more like everyone else.
Whilst some autistic traits are less desirable in some situations and almost all autistic people have to mask sometimes, doing it all the time can be mentally damaging. How an autistic person thinks and feels is denied as invalid with ABA. The way ABA is often applied is also sometimes close to treating the child as if they are in the wrong and they have to be punished. Some autistic people say it is close to being scared and bullied into behaving in an acceptable way. Sadly ABA therapy is still used quite often, especially in special education settings. Most autistic people are totally against ABA and no one who has had it I have spoken said it helped them long term.
Autism Speaks are a charity that started in the US, but now have branches in Canada and various other countries. However most actually autistic people do not like them. They were started by parents of an autistic child who are not autistic themselves and clearly see autism as a negative thing. The charity promote ABA therapy as a good thing and when they first started were fundraising for research into a cure for autism, which shows a huge lack of understanding as to what autism is. Autism speaks is dangerous as parents often turn to them when their child is newly diagnosed and could set them off down a path that can do more harm than good for the child.
Some autistic people get very hung on the exact language used when discussing any issue to do with autism. A lot insist on first person language, putting the person before their disability, which on the whole I prefer myself. However some get so hung up on this in an article or post on Facebook they can miss the whole point of what the writing was actually about and sometimes when the article is making a good point or someone really needs help in a comment it can seem a shame that some refuse to even give it the time of day due to the way the language is written. Often the mistake is made by well meaning parents who are new to the autism community and need to be told politely about the language issue rather than just rudely dismissed.