What is Autism?
Autism can be defined as a neurological difference which means autistic people experience the world in a different way to non-autistic people. We can experience difficulties with social and communication skills (more on this in a moment) and with change and transitions which can lead to inflexibility of behaviour and thinking. However, experiencing the world differently also means we may come up with different, innovative ideas and be able to provide an alternative viewpoint.
Oh, and those social and communication skills? Yes, we’re unlikely to be enjoy spending time in a roomful of people, because our senses are processing everything around us and not filtering parts out (a skill which came in very useful over the centuries). This makes multiple people talking at the same time difficult to process, loud meetings difficult to sit through or noisy train stations difficult to navigate. But our communication skills, according to recent research, work pretty well with other autistic people. And it seems that just as autistic people have some difficulty communicating with non-autistic people, so non-autistic people equally have difficulty communicating with autistic people. So it might be time to rethink about the idea of deficits?
All of us are different, whatever our neurotype, and how autism presents varies widely as does the amount of support an autistic person may need. However, we believe that many of the difficulties experienced by autistic people stem from an acute lack of understanding on the part of non-autistic people, and that if the world generally had a better understanding and made accommodations for autistic and other neurodivergent people the difficulties would lessen considerably. Remember also that definitions of autism and other neurodivergencies are based on a neurotypical viewpoint that there are particular ‘social and communication skills’ which are the right ones, and that there is a right way to behave and think. Actually, this is the majority way and there are multiple right ways. Once you open your mind to that notion it becomes easier to understand that people experience the world in different ways. Let’s change the narrative to difference not deficit.
The medical definition of autism is a little different – persistent difficulty with social communication and social interaction, restricted and repetitive patterns of behaviour and interests which are present from childhood and impair everyday life. Autism, or rather Autism Spectrum Disorder (ASD) according to the diagnostic manual the DSM-5, is diagnosed based on behaviours, and sadly for some autistic people they are behaviours which happen when they are traumatised. At Autistic Girls Network and indeed in the wider autistic community we reject this pathological language of ‘disorder’ – autistic brains are not disordered. Nor is autism a ‘mental disorder’ so it could certainly be argued that it has no place in the DSM 5. However, what you need to know is that ‘autism’ or ‘autistic’ is enough of a description. Many aspects of autism are seen as deficits in the medical model, but it’s a model conceived very much in a neurotypical (non-autistic here) framework.
Is not wanting to make eye-contact a deficit? Only if the society you live in considers it as one.
We are always developing new understanding and knowledge and awareness of autism and other neurodivergencies is better than it’s ever been. There’s still lots of room for more growth though, and for this we need neurodivergent input, with services being shaped by it along with all stakeholders. One thing for sure – autistic people are just as different to each other as all humans are, and services need to look at individual need – which will vary widely – without imposing blanket policies or strategies.
Being autistic, despite diagnostic criteria, is not a set of behaviours. It is a way of thinking about and experiencing the world which colours all our interactions, and it is hugely diverse. Autistic people have long been thought of or portrayed as anti-social maths or science prodigies (think Dustin Hoffman in Rainman or Alan Turing) when they are just as likely to be highly creative, sociable and have a strong sense of social injustice. Indeed, autistic strengths include attention to detail, diligence, fairness, focus, sense of social justice and loyalty. Every autistic person is different, just as all of us are different. We can no more define every autistic person than we can define every non-autistic person.
However there are some traits that tend to be common to many autistic people:
- Taking language literally
- Being interested in details
- Liking facts and proof
- Liking the structure of rules – as long as they make sense and are fair
- Having a strong sense of social justice
These points can make some autistic people absolutely fabulous at their jobs and also mean that they can tend to be people who strive for social change.
Someone who has been recognised as autistic is more likely than their non-autistic peers to be otherwise neurodivergent, that is to be dyspraxic or dyslexic or to have ADHD, OCD or Tourettes among other things. Some have traits very similar to autistic traits and this is definitely an area of rapidly changing knowledge – who knows what will have been found out in 10 years’ time?! Recent research has shown that the co-occurrence with autism and intellectual disability/learning disability is only around 20% but not so long ago it was thought to be much higher. So research – and listening to neurodivergent people – is constantly changing how we understand neurodiversity.
Over 70% of autistic children and young people are in mainstream schools and there is much work to be done to make those schools more inclusive and reverse the very high rate of exclusions of Special Educational Needs and Disabilities (SEND) pupils – 70% of permanent exclusions are for pupils with SEND. Whether in mainstream or specialist schools, autistic children and young people have the right to reasonable adjustments according to the Equality Act, 2010 if they are at a substantial disadvantage to their non-autistic peers in school. Our checklist of possible reasonable adjustments can be found here.
What is the prevalence of autism?
On UK government websites and in newspaper articles you will find the statistic 1 in 100 frequently referred to. However, this figure is wildly inaccurate and out of date. US official figures say 1 in 44 but this figure only counts 8 year olds and many people are diagnosed as autistic after the age of 8. In Northern Ireland the official figure is 1 in 22 and that seems more likely to us.
There are so many ways an autistic person may experience the world that it is vitally important they are listened to and believed when they tell you something they think or feel. This from one of our trustees:
“I remember during an Art lesson discussion about Van Gogh telling my teacher I often experienced tinnitus. This was immediately rubbished by both him and the other pupils. I wasn’t saying it was so bad I was about to lop my ear off, it was more of a “oh, I get that sometimes”. I gave up and we carried on. The fact is tinnitus is relatively common so I’m still a bit confused why I wasn’t believed. That’s always stuck with me so when my daughter started hearing a high-pitched noise on our walk to school that nobody else could hear (including her classmates) we did some investigating and finally found a cat deterrent machine in somebody’s garden. It’s meant to be silent to humans but horrible for a cat. It turns out my daughter can hear it and it made the school run an often very unpleasant experience for her.”
Just because we don’t feel or experience the same thing doesn’t mean it doesn’t exist and promoting this sort of understanding and openness is one of our aims at Autistic Girls Network.
For more information about autism please see these resources: