Karen McGuire was only diagnosed with Asperger’s syndrome when she was 30. Up to that point she had struggled with certain aspects of everyday life - things most people might take for granted: going shopping, saying hello to another parent at the school gates, knowing how to react in a group of people.
In fact, it was only because her daughter, Anais, 13, was diagnosed, that she realised she too had the condition.
Now the mother-of-three has organised an art exhibition in Wakefield in a bid to make people more aware of autism and how it affects people.
I met her at Fell House on George Street, a stone’s throw from one of the main shopping streets in the city. As she sat in front of me paging timorously through a pile of notes she told me she felt nervous about speaking to me but she’s clearly a determined woman.
“I had the idea one Sunday night,” she explained. “By Monday I had more than 30 people willing to contribute to it and in the end we ended up with over 50, including some really well known names in the world of autism.”
This steely determination is, as she acknowledges, one of the characteristics of Asperger’s Syndrome, a form of autism. While Karen might find herself shy and retiring in some social situations or baulk at the thought of entering a supermarket before midnight, when she decides to do something she sees it through.
It’s not been easy for two-times divorcee who has, in the past, struggled to hold down jobs and even now with children aged 14, 13 and eight, has misgivings about the trappings of modern social life.
“The internet has made it easier in some ways,” she explained. “I can go on there and chat to people and not be self-conscious about myself, about where my arms are or thinking of something to say right away.
“One of the reasons I wanted to put this art exhibition together is to highlight that autism is very often a hidden disability, we look like everyone else, there is this idea we are all like Rain Man but it’s a very wide spectrum.
“The majority of people with autism have sensory issues, lights, sounds and so on. All the senses can be extreme. In the supermarket there are lights, people, so much to look at - there’s too much stimuli. For me the ideal situation would be to go in the middle of the night and have ear defenders on.
“We notice everything, we do not have a filter system and we cannot process it as fast as we take it in, so in the supermarket there’s the lights, the music, people pushing past, all the things on the shelves to look at, noises from the trolleys, noise from other people.
“At one point I was going to Asda every day and it was part of my routine but there was still a lot of anxiety. I find it difficult to make friends unless it’s on-line.
“What goes through my head is… when do I talk, I can also say things that are inappropriate, I don’t lie… if someone asks does my bum look big in this, I will say yes. If they smell, I’ll tell them if they ask me. I never know when to come in during a conversation, or when to stop. I always think where should I put my hands, where do I look at them and so on.”
Karen, who is now with partner and carer Craig Binns, who has three children of his own, has pulled off something of a coup in the autism world, attracting some of its biggest names, among them Anna Kennedy, winner of the online Autism’s Got Talent, held in May, Donna Williams, a prolific autistic writer and Michael Tolleson, a savant from America and the closest thing to most people’s understanding of what autism is: the character portrayed by Dustin Hoffman in the film Rain Man.
Karen said: “Most people have this idea everyone with autism is like Rain Man but there’s a very wide spectrum.
“The autistic spectrum is like a scale… some cannot talk, others are incontinent, there’s severe autism, there’s Asperger’s, which is my diagnosis - you can be anywhere on that line.
“I am lucky because I can hide it easier, I was only diagnosed aged 30. I spent all my childhood and as an adult up to 30 not understanding why no-one else was having the struggles I was having with things like light coming through the blinds and not knowing what to say next.
“A lot of times you cannot say thank you or goodbye or hello because of the pressure.
“Kids really struggle to cope with it, whereas I can understand why I can’t cope. In some ways it’s easier to make friends when you are younger because kids like quirky and they accept it but if you are still like that when you get older, people start to question that.
“As a child, I had a strange obsession where my mum had to cut all the corners off chips - there are eight corners on a chip. I would not eat them unless she did it, it wasn’t being spoilt, it was because I felt like they hurt me… these are some of the sensory issues linked to Asperger’s.”
Dr Simon Wallace, research director at the UK charity Autistica, said the condition was more widespread that previously thought.
“Fifteen years ago about one in every 500 people were thought to have a form of autism - what we call autistic spectrum disorder (ASD) - now it’s around one in every 100 but that has a lot to do with broadening what the spectrum.”
The ‘spectrum’ is like a scale on which people with ASD find themselves. Historically, people with autism have not had the best of treatments from the medical establishment. Things began to change in 1942 when a psychologist called Leo Kanner described a set of characteristics in children who had language skills problems and whose attention was often consumed by objects in a room, like a light or other object, rather than other people.
In Austria, around the same time, paediatrician Hans Asperger made a similar series of observations. However, his work was only translated into English in the 1980s, which is why the term was only introduced after that. It has since been eclipsed again by the sliding scale of ASD.
“One of the defining characteristic is people with ASD have insight into their condition, which means they are aware of it and this can lead to isolation issues.
“For most people, when they engage in a social situation, there’s a script, which is fed and fed from a very early age so that by the time you are an adult, you do not think about when to speak or where to look or put your arms and so on. People with ASD may struggle with this.”
That said, many people with autism also have what are known as ‘co-occuring’ difficulties. Around 70 per cent of those with ASD will suffer from anxiety and depression and attention problems, a third will suffer from epilepsy and a third suffer from sleeping or eating disorders, which can themselves lead to other physiological problems.
For those, like Karen, who are able to function for the most part in what is considered ‘normal society’, there’s a drive to make people more aware of the symptoms and how we should respond to them.
The Artists of Autism exhibition is available to view on the ground floor of Fell House, George Street in the centre of Wakefield and runs until July 6.
The One in a Hundred report aims to create a more even approach to people with ASD. It calls for quicker diagnosis of ASD, more funding for research into things like sleeping disorders associated with ASD and says new ways of thinking could help slash the £28bn cost to the economy of what it calls ‘lost opportunities’ associated with ASD.
It says: “We believe that it is unacceptable that 94 percent of parents worry about the future of their child with autism, and that 75 percent of adults with autism report that there is insufficient help for their difficulties.
“A third of respondents had tried interventions they knew had no evidence base, demonstrating both the level of desperation and the lack of options currently available. And, across the board, parents and adults with autism wish that diagnosis had come sooner.
“But we are encouraged that so many families and individuals with autism feel positive about medical research. Ninety percent agree that there is a need for a greater scientific understanding of autism, and a similar number feel that more medical research would make a positive difference to their lives.”
The report said 94 percent of parents said that they worried about the future of their child, and adults reported feeling socially isolated.
“Perhaps the greatest difficulty that families reported on was being marginalised from society, with 72 percent of parents feeling judged or misunderstood by others.
“Almost two thirds of respondents expressed some concern about the idea of using medication to treat aspects of their child’s or their own autism, and there were mixed experiences in terms
of interactions with GPs, with half of parents and adults describing the experience negatively.”
It added: “Two thirds of adults and 84 percent of parents agreed that the government should
consider autism as a medical research priority. Families clearly understood the important role science has to play when selecting interventions but 34 percent of parents and 28 percent of adults with autism reported using interventions which were not scientifically proven.”