I am with Gareth, Emma and Alice at the Pembrokeshire People First office in Haverfordwest. We had such a big response to Emma’s story about living with autism that I want to know more about the Autism Awareness course she has helped to develop with her colleagues.
It’s Gareth that I speak to first. He is a volunteer who offers his own experience of autism. Unlike the others in the team, he was diagnosed very young. He explains that it is much easier for children to be diagnosed in their own environment as autism makes it harder to cope with change and makes those living with the condition more prone to stress.
“I volunteer here,” he tells me. “It’s good work experience. I have I.T. 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. Fitting in, and the anxiety and stress that is present in the everyday stuff of life that most of the rest of us are taking for granted.
If you have read Emma’s story you will have had a taste of how alienated autistic people can feel and the workplace is rarely an easy environment. The difficulty is further exacerbated for women with autism as getting the diagnosis in the first place, which opens doors to support, is an uphill struggle.
Alice Jones, who is also a consultant on the course, tells me about her experience. “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 am curious to know more.
Alice, who has done all of the artwork for the course, did a degree in fine arts from Plymouth University. “It was a huge challenge,” she says, “but 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 are really hard.
“I can’t sit in a pressured environment. In an interview situation being asked, ‘Tell me about yourself?’ is a really hard question. I just felt that something was wrong with me. Interviews are about how you look and how you say things. It is mystifying.
“It took a long time to get a diagnosis and it was a fight. I was just existing. I didn’t know how to live properly. My sister had spotted what was going on for me but the GP wouldn’t refer me. I was originally diagnosed with Psychotic depression and took endless anti-depressants which didn’t help me. When I finally got my referral there was no adult test. I endured a child’s test and had to do things like act out brushing my teeth and reading a magic dinosaur book.”
We all wince.
Emma’s story is another one of alienation and struggle to find a place. She gathered a wealth of information over the years, researching 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.”
Fortunately all of that collected material was not to go to waste and has gone on to form the basis of the Awareness Course.
Emma tells me “We have been working for over 18 months now, developing the course. It started off as a one hour segment on a Learning Disability Awareness day where autistic people came and told their stories. We had overwhelming feedback that people wanted to know more. We were then awarded funding for us to make a whole day just on Autism Awareness.”
The team are justifiably proud of the work they are doing. The course is unique, using the experiences of people living with what is generally called Autism Spectrum Disorder (ASD) but which they prefer to call Autism Spectrum Condition (ASC).
Sian Huntley, facilitator, says of it, “Originally it was envisioned that I would write a training course that would incorporate the stories and experiences of members. It had always been anticipated that the course would be co-facilitated. In order to gain most understanding of the life that people have lived and with a view to developing the content of the course, I spent time talking, listening and reflecting on what it was like to live in a world that at times could be unbearable, a world that made no sense and where professionals had no understanding of the critical situations faced by autistic individuals. With each story that was told, I gained greater insight into a world of forced isolation and disadvantage, but also of unimaginable skills and gifts that I could only dream of possessing. Over the months we were able to build honest and trusting relationships, which has now ultimately resulted in a complete rethink of the course and a complete shift in the balance of power. The course content has now been re-designed and developed by the ASC US members, and in that, we believe it to be quite unique and I feel incredibly lucky to be able to play a part in the delivery of the training alongside such inspiring people.’
So who has attended the course so far? And who would you like to work with in the future?
“We have worked with a wide range of groups,” Emma explains, “And we are particularly keen to work with any groups who are working with the public.”
They recently worked with some of the staff from the Office of the Police and Crime Commissioner, Mind, Value Independence, and Point Youth Centre.
“We had great feedback from the OPCC. They said everyone should do it!”
Alice tells us that she is particularly interested in the work that the group does in schools and colleges. “Apart from informing people without the condition, it’s really worthwhile if we can catch young people before they are misdiagnosed. That can save them years of distress and alienation.”
The group have also worked with youth groups and charities and are planning to talk to the Job Centre and doctors’ surgeries about running courses for benefit advisors and doctors’ receptionists. We are hoping to make arrangements to train police officers, PCSOs and social workers and in fact we would like to train any staff who face the public including bus drivers, train ticket sellers and inspectors, information point staff, maybe even airport staff – anyone who is likely to meet autistic people in the course of their work. We would like for these people to have an understanding of autism so that if someone is behaving in a way that makes them feel uncomfortable, their first thought will be, “Could they be autistic?” instead of, “This is a person acting suspiciously, a security threat.”
They have also worked at Theatr Gwaun, auditing the building.
“We advised on a number of things that would make it challenging for autistic people like the doorway, which is dark and daunting. It’s not clear how it works, and once inside it is hard to tell where to go, particularly with a lot of people about.”
I want to know if anyone can take part in the courses and how much it will cost.
Emma explains that they don’t only offer courses to organisations but they also run open courses for individuals when they have enough enquiries. Cost for a group is £450. For individuals it’s £70 a head.
What do the group think are things that autistic people have the most difficulty with in society?
“Of course we are all different, but generally, as we have said, finding and keeping paid employment is hard, which is why we would like to engage with the Job Centre.” Alice says.
Emma explains that sensory issues are a big factor with noise often proving overwhelming.
I ask Alice what that is like. She knows only too well. “All your senses are set to 11 with no filters. Everything has to be noticed and processed.”
She tells me that she has become quite good at managing her sensory issues during the day, although this can be exhausting.
At night though, it’s a different story. “Noise at night is much more difficult. Car horns, dogs barking, seagulls calling, ticking clocks all cause massive anxiety. It’s impossible to relax. When I was younger I had terrible meltdowns but you have to learn to adapt. If something is really bad, I will tell myself I am not here for long and that helps me cope.”
They all agree that noise cancelling headphones when noise cannot be shut off are a great help.
What are some other issues?
Emma talks 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 in to my head. This makes the new way of group-learning very hard for me as people throw out suggestions before you come to the actual answer.
EF is like a map in our brains that tell 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 ask for an example.
“Someone,” Emma explains, “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 to understand.
“That’s why we are running this course. Autistic people experience bullying and lack of understanding all their lives. We don’t want to make anyone feel bad, but we would like to help people to understand, whether they are autistic themselves, or are encountering autistic people.
“We work with the Social Model of Disability. The model maintains that people are disabled by barriers in society, not by their impairment or difference. These barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.
“We want to help people to understand that autism may not be visible and that autistic people are not being difficult when we respond literally, or don’t seem to see the world as you might see it. We are trying to process a bombardment of information, without filters, often causing us huge amounts of anxiety.”
I have one more question? What is the difference between Asperger’s and Autism?
Emma explains that the term Asperger’s has been taken out of diagnostic manuals and is now rarely used, but many people who were diagnosed with it identify themselves that way and that is their right.
“Effectively”, she says, “Asperger’s was autism without learning disability. It was also called high-functioning autism which is a label that we deplore. It is so meaningless as people’s abilities differ widely from day-to-day and the nature of the spectrum is so varied. Some people can be brilliant at some things and not others, how on earth can you decide if some is high-functioning? Was I high-functioning when I was hiding in the middle of a wood for 11 years? The label says I was. I wasn’t.”
Want to know more? Find out about the course?
Contact: Old Hakin Road
SA61 1XE Haverfordwest
For further reading :
Autism Equality in the Workplace by Janine Booth.