“My facial expressions and body language do not always match my mood. I may look terribly angry, but I am happy as can be. I am unable to read between the lines or communicate with hidden messages. Please try to take what I am saying at face value and do not try to read into it. I am not capable of that kind of phrasing.”
These are the words of Claudia Curry, founder and executive director of the Asperger’s Syndrome & Autism Research and Rehabilitation Institute. She was diagnosed with high-functioning autism (HFA) – a form of the disorder that incorporates delayed language development at a younger age – when she was 48 years old.
Being diagnosed with the condition at this age may come as a surprise to some. Although autism is a lifelong developmental disorder, it is more widely recognized as a children’s condition.
Of course, autism diagnosis is more common among children, with the average age of diagnosis occurring around 4 years old. It is unknown as to how many children have the condition globally, but it is estimated that autism affects 1 in 68 children in the US, while in the UK, more than 1 in 100 children are estimated to have the disorder.
But how many adults are living with autism? Unfortunately, it is unknown. In fact, there is very little information available surrounding adults who have autism, compared with data on children with the disorder, which may be fueling the view that the disorder is a childhood condition.
“It is a real issue and autism is still seen very much as a child’s condition. But of course, every child with autism does grow up to be an adult with autism,” says Carol Povey, director of the Center for Autism at the UK’s National Autistic Society.
“In fact, one of the areas which is very poorly understood at the moment is that they turn into older people with autism.”
But why is there such a lack of understanding and awareness about adult autism?
Povey says it is partly because autism is still relatively new as a diagnosis.
“Many of the older adults [with autism] were the first generation diagnosed with autism in the UK in the 1960s, which is when we started to understand it,” says Povey.
Autism was first described in 1943 by Leo Kanner, a doctor from Johns Hopkins University in the US. He used the term to define the withdrawn behavior of a number of children he studied.
However, medical professionals did not begin to fully understand the condition until the 1960s. Now, autism is defined as a lifelong developmental disability that affects how a person communicates and relates to others.
It is a spectrum disorder, meaning that the condition affects each person in a different way. But there are characteristics that all people with autism share: difficulties with social communication, social interaction and social imagination.
“Our understanding [of autism] is growing,” Povey adds, “but most of the services and facilities and the understanding around diagnoses are with children. When people move into adulthood, most services are poorer and the understanding is poorer because our portrayal of autism is still with children. We just know more about autism in children.”
There is no doubt that the majority of research efforts into autism look at how the condition affects children. In a
The team found approximately 4,000 studies analyzing adult autism, while more than 12,000 studies looked at child autism.
“There is very little research that has been done worldwide looking both at the way autism affects adults and the impact it really has on their lives, and what sort of support and services would make the greatest difference,” says Povey.
“That is the really important thing for adults on the autism spectrum; ‘What is going to help me?’ – and for parents – ‘what is going to help my child?’ not only when they are 5, 7 or 8 years old, but when they are 30, 40 or 50, when parents may not be there to do that for them.”
According to Curry, “support of any kind is discontinued when a child [with autism] turns 18,” and she firmly believes that more support is needed for adults with autism. This is why she set up the Asperger’s Syndrome & Autism Research and Rehabilitation Institute. The non-profit organization aims to help individuals who suffer from adult autism and their families.
Povey agrees that much more needs to be done to support adults with autism, particularly in the area of employment.
For most adults, employment is an important part of life. Yes, a primary reason for going to work each day is to earn money, but we also go to work for social engagement outside of our home lives. It gives us a sense of independence.
Although adults with autism struggle with social interactions, this does not mean they do no want to engage with other people. In fact, Medical News Today recently reported on a study suggesting that independent working environments may reduce symptoms of adult autism.
“We know that 15% of adults [in the UK] with autism are in employment, yet there are far more who would be able to contribute, and desperately want to contribute to organizations, businesses and to society as a whole,” says Povey.
But what is stopping adults with autism from getting into employment? Povey says it can be something as simple as interview processes.
“Interviews are actually about telling untruths to make yourself more attractive to the job market.” she says. “If people with autism are used to being told or understanding things in a very concrete way and telling the truth, they are really going to struggle in any interview situations.”
Curry explains that adults with autism have characteristics that can be beneficial to an employer, although strict routines are a must.
“We have many different qualities that are in many cases more pronounced, such as attention to detail, the drive to research any given subject until we are satisfied, loyalty to a fault, bound by routines, which means we greatly appreciate a regular schedule and any deviation will, in fact, throw us off.”
Ultimately, Povey says that lack of employment opportunities for adults with autism come down to lack of awareness of the condition.
“I think for many companies, it is just fear of the unknown. They are really thinking, ‘this person will not be able to do this job.'”
But how can this perception be changed?
Organizations are working toward improving employment opportunities for adults with autism. The UK’s National Institute for Health and Care Excellence (NICE) has a specific guideline in place: “Autism: recognition, referral, diagnosis and management of adults on the autism spectrum.”
Prof. Mark Baker, director of the Centre for Clinical Practice at NICE, says the guideline highlights the importance of employment advice and support for adults with autism.
“NICE advises that every adult with autism who does not have a learning disability or who has a mild one should be offered an individualized support program if they are having difficulty obtaining or maintaining employment,” he adds.
“This program should include help with writing CVs and job applications and preparing for interviews, training for the identified work role and work-related behaviors, advice to employers about making reasonable adjustments to the workplace, and a number of other elements.”
Although such guidelines are a step forward, there is still a way to go in changing not only employers’ views of adults with autism but also that of the general public.
“The world of an autistic person is black and white, right and wrong, while the world of a non-autistic person has a plethora of shades of gray. It is difficult for an autistic person to understand and respond properly to gray areas,” explains Curry.
“With the sharp rise in prevalence, we really need to get away from calling people ‘autistic’ and ‘normal’. There really are only autistic and non-autistic people. Given the autistic person’s strict adherence to rules and regulations while the non-autistic person allows for so many gray areas, the question as to what ‘normal’ is remains.”
According to Povey, teaching children about autism from a young age is important for improving future awareness and acceptance of the condition.
“Very young children are very accepting,” she explains, “that is why very often, autistic children have very successful primary school careers. [Non-autistic children] can be very nurturing, accept them and look out for them. It is often when you move into secondary school (high school) and into adulthood that they become more difficult.”
From our analysis, it is clear that more research is needed surrounding adult autism before we can determine the best support strategies that are needed going forward. But for now, it seems that increasing awareness and acceptance of the condition among the non-autistic community is a key priority.
As Povey says:
“When we do get a society that really can accept difference and celebrate difference, rather than being frightened of it, that would make such a massive difference in people’s lives.”
Wednesday, April 2nd, 2014, is World Autism Awareness Day. To find out more about autism and how you can help create awareness, please visit the National Autistic Society website if in the UK, or if you are in the US, please visit the Autism Society website.