The Challenges of Autism
“Someone could learn an entire bus timetable but not understand that if they stand at the bus stop at a certain time, a bus will come and take them to a certain place. That’s how it can be for autistic people…” – Emma Wishart
The last time I met with Emma, Alice and Gareth was at the Pembrokeshire People First office in Haverfordwest where they told me about what it’s like to be autistic.
Unlike the others in the team, Gareth was diagnosed very young. He explained that autistic people often find being out of their own familiar environment very stressful – and for that reason, it’s better for children to be tested in their own homes..
He told us that volunteering with People First was very positive. “It’s good work experience. I have IT skills and I really want paid work, but finding and keeping a job is very stressful. I don’t feel I can fit in.”
And that, very simply, is one of the main issues.
So much of the stuff of everyday life that most of the rest of us are taking for granted is extremely stressful for autistic people, and “fitting in” can feel impossible.
Emma has written at length about her own experiences, explaining how alienated autistic people can feel in the world. The difficulty is further exacerbated for women, as getting the diagnosis that opens doors to understanding and support can be an uphill struggle.
Alice Jones talked about her experience. She is now 37 and did not receive her diagnosis until she was 32: “People make snap judgments. They will say of women that we can’t be autistic because our social skills are too good, or we don’t look autistic. Women are at a disadvantage when it comes to a diagnosis. We have different traits from boys. Girls are forced to conform and learn how to behave to appear to fit in. We ‘chameleon’ our way through.”
What a great phrase. I was curious to know more.
Alice, who did a degree in fine arts from Plymouth University, continued to explain how difficult it was. “I don’t regret it. It taught me how to be independent, but trying to fit in was awful. I loved the course, but I couldn’t do the social side and saw a counsellor all the way through to keep my head up.”
When she completed her course and tried to enter the world of paid work she found, like Emma and Gareth, that interviews were utterly mystifying.
“Apart from the pressure of an interview situation, questions like ‘Tell me about yourself’ are really hard for an autistic person. I didn’t know how to answer.”
It was Alice’s sister who had spotted what was going on for her, but the GP refused to make a referral. Instead Alice was originally diagnosed with psychotic depression. Being dosed with antidepressants didn’t help.
When she finally got her referral, there was no adult test. She endured a child’s test and had to do things such as act out brushing her teeth and reading a magic dinosaur book.
Emma’s story is another one of alienation and struggle to find a place in the world. Now 50, she spent many years gathering a wealth of information to try to make sense of what was happening for her: “I thought I could hand it to people if I ever needed to explain myself to anyone, but no one ever asked. They just seemed to make assumptions.”
All of Emma’s research eventually paid off and her diagnosis, when it came at the age of 45, helped her find her authentic self, which she has written about and which we plan to serialise here in Pembrokeshire.Online beginning next week (on 9 June).
“Of course we are all different,” Alice added. “But generally we all experience sensory issues, with noise often proving overwhelming.”
What is that like? “All your senses are set to 11, with no filters. Everything has to be noticed and processed.”
She told me that she has become quite good at managing her sensory issues during the day, although this can be exhausting, but at night every tiny sound can make it impossible to relax.
All of them agreed that noise-cancelling headphones when noise cannot be shut off are a great help.
What are some other issues?
Emma talked about executive function (EF) and central coherence (CC): “When I hear something I assume it’s the fact. The first answer to a question is the one that goes into my head.
EF is like a map in our brains that tells us how to plan and organise, keep track of time, and remember information in the moment. Problems with EF can lead to problems with task initiation. How do I start? How do I know when I have finished? You need structure in order to understand.
Central coherence is being able to see the bigger picture, turning raw data into usable information, putting things into context.”
I asked for an example.
“Someone,” Emma explained, “could learn an entire bus timetable but not understand that if they stand at the bus stop at a certain time, a bus will come and take them to a certain place. That’s how it can be for autistic people, you can learn every social rule but be unable to successfully maintain a long-term friendship because you can’t apply those rules to fluid, real-life situations.”
That’s difficult for many people to understand, and autistic people are often misunderstood and bullied. It can be very tough being different.
To find out more about Emma’s experience of living with undiagnosed autism, look out for her forthcoming series in Pembrokeshire.Online.
Other reading :
Autism Equality in the Workplace by Janine Booth