What are the pros and cons of seeking an autism diagnosis in adulthood? Photo / 123RF
People often talk about being on the spectrum, but what are the signs, symptoms and causes of autism spectrum disorder (ASD)?
With many people possibly living with undiagnosed autistism, what are the signs that a person may be on the spectrum – and what are the pros and cons of seeking a diagnosis in adulthood?
Thought to be caused by a combination of genetic and environmental factors, autism is a lifelong condition affecting how a person communicates and experiences the world around them.
Dr Sue Smith, head of the National Autistic Society’s Lorna Wing Centre in Kent and a specialist in assessing adults, describes it as a “neurodevelopmental difference” present throughout a person’s life.
She explains: “Autistic people are noticeably different in the way they process information. Whether a child or adult, an autistic person is likely to show some differences from the majority in terms of their social communication and interaction, the style of their thinking and possibly also in terms of sensory differences.”
Experts now recognise that all ages are affected and awareness of autism in adults is increasing.
Despite this, research by University College London suggests there may be around 750,000 undiagnosed autistic people aged 20 and above in England alone, which would bring the total autistic population to over 1.2 million – approaching double the figure of 700,000 people with autism of all ages in the whole of the UK.
But as the diagnostic criteria for autism have changed and attitudes in society have shifted, more adults are questioning whether the challenges they have experienced throughout their lives may be down to autism.
Professor Joshua Stott, a clinical psychologist at UCL, explains: “Generally, people are diagnosed with autism in childhood, although adult diagnosis is increasing. In the past, the criteria needed for diagnosis were very different to what they are now, meaning that far fewer people were diagnosed. This has created a ‘lost generation’ of older people who would now meet [those] criteria.”
For a long time, a stereotypical picture of someone with autism persisted – people thought of a boy (it was seen as largely affecting males) with single-minded interests who couldn’t interact with others.
But nowadays, the understanding of autism is both broader and more nuanced. In adults, who may have tried to mask autistic traits or to disguise them through “compensatory strategies”, autism can look very different.
Remembering that autism is a lifelong condition, where the traits will have been present in some form since childhood, these are some of the potential signs of autism in adults:
Eight years ago, when she was 27, Hayley Brackley suffered a breakdown which she now links largely to undiagnosed autism.
Hayley, now 35, had been diagnosed with attention deficit hyperactivity disorder (ADHD) when she was 14, but at that time was “categorically told” she was not autistic.
As a new mother, and after years of feeling labelled awkward and difficult at her job in the fire service, the sense of not fitting in overwhelmed her. She went into what she now sees as an autistic shutdown, a state of numbness where she could barely speak, and over the next two years crippling anxiety and detailed suicidal thoughts pushed her very close to the edge.
For a long time, Hayley did not consider that she was autistic, partly because she didn’t fit the autistic stereotype.
“I haven’t got a particular affinity to Lego or trains and I don’t flap my arms.
“But I do have difficulty with some things on a social level. At school, I struggled with managing my anger, was over-emotional and had a very strong sense of right and wrong. At work I struggled to understand what was dark humour and what was inappropriate.
“I also found it hard to manage my energy and would feel completely depleted by things that didn’t seem to exhaust other people. Going to the supermarket, with its lights, sounds and decision-making, would leave me wrung out.
“I also lack flexibility in the way I think – though I can see both sides of an argument, once I make a decision I can’t deviate from it.”
As she recovered, had therapy and set up Great Minds Don’t, a coaching company for neurodivergent people, she realised that the experiences of her female autistic clients often mirrored her own, and she began to ask herself “Am I autistic?” The married mother-of-two from Kettering, Northants, was finally diagnosed three years ago.
For all the increased and evolving understanding of autism, there is still a frustrating lack of concrete knowledge about what causes it.
While the genetic link is established, there is still much about it that is unclear, with variations in around 100 genes potentially linked to autism. And as for environmental factors, these are even harder to pin down with so many variables at play.
Experts are now clear that this is not a childhood condition that people grow out of. It’s simply that up until very recently, few were diagnosed in adulthood.
Smith says: “Evidence would suggest that the percentages of autistic people will be the same throughout age groups. The reasons for the lower levels of diagnosis in adults will be multiple, but they’ll certainly reflect very different thinking about autism at different points in time.”
More adults are seeking an autism diagnosis, but there are still huge numbers of people who may not be aware that they are on the spectrum or who come up against colossal waiting lists, or simply choose not to know.
According to Stott’s team at UCL between 150,000 and 500,000 people aged 20 to 49 in England may be autistic but undiagnosed. For those over 50, between 250,000 and 600,000 could be undiagnosed.
Taking the midpoint of these estimations gives a figure of around 750,000 undiagnosed people aged 20 and over.
He says: “You don’t have to get a diagnosis. It is a personal choice. On balance, though, I believe for most people the advantages of doing so appear to outweigh the disadvantages.
“For someone who has experienced trauma, bullying or discrimination, all of which autistic people are more likely to go through, understanding that it wasn’t their fault, can be really important.
“Also, having a diagnosis means that someone can advocate for their right to reasonable adjustments and the support they need whether in healthcare, work or other areas of life, and that others can know of the need to make adjustments for them.”
This is particularly important when you consider that a third of autistic adults have attempted suicide, eight in 10 have a mental health condition and just 30% of autistic adults are in paid employment.
Those not going through their GP or the health system often turn to online diagnostic services or opt for a diagnostic opinion rather than a full assessment, as Hayley did. Some adults choose to self-identify as autistic without getting a formal diagnosis.
Smith says a diagnosis can be a “game changer”. “Immediately, people might feel emotionally thrown or they may feel relieved and validated. They may also need to process previous experiences and while that can ultimately be positive, it can also be quite painful.”
If they can be well supported, she says, it can help to validate who they are and accommodate the different ways that autistic and non-autistic people think.
Notwithstanding the awareness and acceptance today that autistic people should not have to change to match the majority, many may already have spent years trying to blend with their peers. The impact can be exhausting, and can eventually lead to burnout or breakdown, as it did in Hayley’s case.
It is at these points of crisis or at times of transition, such as having children, changing jobs or going through the menopause, that people often seek answers, according to Smith.
For Hayley, understanding that she is autistic as well as ADD has been very positive.
“It has allowed me to be kinder to myself and to understand why I am how I am.
“I tried hard to create the group of best friends that I saw on programmes like Friends and Sex and the City, but it never quite worked. I found the social rules too hard to manage. I know now that I much prefer to go out with one person – it’s easier to navigate.
“I’ve also come to understand how lighting affects me and now wear glasses with a special ‘anti-glare’ tint designed for driving at night. I wear them all the time as they help everything seem less bright.
“I am not afraid to say if something is going to be too much for me, and I understand the role of special interests. For me right now it’s lighthouses. When everything can seem scary and uncomfortable, I find them simple and calming.”
While autism cannot be cured and autistic people should not be seen as somehow broken and needing to be fixed, knowing that someone is autistic can be an important step for them and others to learn how to cope with its impact and challenges.
Smith says: “There is no reason why autistic people cannot be happy and fulfilled, other than the fact that they are often misunderstood or just need slight adjustments. More kindness and understanding can make a really big difference.”
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