Many autistic people “mask” their traits, but in midlife, this can become increasingly difficult as stressors pile up.
Nine out of 10 people with autism in their 40s or 50s have never actually been diagnosed with it, according to a recent estimate from King’s College London.
It is a lifelong condition, and while awareness of autism in adults has grown in recent years, the rates of diagnosis have not kept pace.
Given that autism itself is a fairly new diagnostic label that was first used in medicine in the UK just a few decades ago, you might have wondered whether you or someone you know could be diagnosed with it, were there to be an assessment.
Autism was rarely diagnosed in people who have average or above-average intelligence until fairly recently, so now, many successful midlifers are realising for the first time that they have autistic traits. “It’s very hard to guess at the real figures, so 90% may be an overestimate, but it is certainly true that autism is underdiagnosed in this age group to some extent,” says Punit Shah, an associate professor of applied psychology at the University of Bath, who has studied the condition in older adults.
“There’s a high correlation between having autistic traits and actually being autistic, but not every individual with lots of autistic traits will actually have autism,” Shah says. To complicate matters, there are also autistic people without stereotypically “autistic” personality features.
Many autistic people “mask” their traits, but in midlife, this can become increasingly difficult to do as life stressors pile up: whether that’s moving home, becoming an empty nester or dealing with changes at work. All of these things can push us to our limits and make the symptoms of autism harder to manage.
Shah highlights the midlife signs that could indicate that you have autism, and explains what could help.
Continually worrying about the same handful of issues
Autistic people are prone to rumination; a pattern of thought that revolves around the same handful of worries, scenarios or memories and which can become obsessive. This is sometimes referred to as “thought looping”, and it’s also a feature of mental-health issues such as anxiety, depression or OCD (all of which are more likely to occur in people with autism than in the general population).
“People who have a habit of ruminating might find that it is prompted and becomes more common during times of stress and change,” Shah says. Over time, this can become very distressing, particularly if the content of your thoughts is negative.
“If that’s the case for you with rumination or with any other symptom that may be linked to autism – that you’re being impeded in your day-to-day life – it’s important to go to your GP and ask for help,” Shah says.
What to do
“Rumination is essentially impossible to fix without speaking about it to someone else,” Shah says. Any person’s thoughts can take on a delusional quality when left to spiral.
Left unchecked, repetitive dark thoughts can be extremely damaging, he adds, leading to poor mental health. A therapist or a counsellor on a helpline, or even a friend or spouse, can “reality test” obsessive thoughts and help break the “loop”.
Incessant arguing with adult children
It’s normal to disagree with your adult children from time to time – they are their own people, after all. But for autistic parents, who feel all the same healthy worry and anxiety over their children’s safety and wellbeing as any other parent, seeing their children gain independence can be tough to get to grips with.
While autistic people are often deeply caring and dedicated to their loved ones, they may struggle more with close relationships than other people do. It’s no surprise, then, that there is some research to suggest that people with autism can find parenting much more stressful too.
“When you have young children, you have an extent of control over what they do,” Shah says. “As they age and gain independence, you rightly have less say on their behaviour, and so that person becomes much more unpredictable. Autism is characterised by a difficulty in dealing with unpredictable situations.”
What to do
It’s important for autistic parents to be open with their adult children – not necessarily about their life choices, but about how difficult it is to accept how their relationship is changing as they age.
“Open dialogue with adult children will help them understand what their parent is struggling with, so that you can find a way to communicate through those difficulties,” Shah says.
Struggling to communicate at work
A major characteristic of autism is a difficulty with social communication and interpreting social situations. Enter the living nightmare of many autistic people: managing a team of people in the workplace.
Many autistic people learn to navigate social situations through rehearsed scripts. “Those might be enough to get you through a work dinner or a conversation in the queue for a coffee, but having to manage someone and instruct them is a totally new kind of social communication that people with autism do not have their whole lives to study first,” Shah explains.
As a result, many autistic people avoid taking on roles that involve managerial duties. Others take the chance to advance and struggle immensely as a result in workplaces that claim to be pro-diversity but offer little in the way of support for their midlife employees. It’s no wonder that autistic people in Britain, on average, earn a third less than non-autistic people who have not been diagnosed with a disability.
What to do
Being upfront about difficulties is key, Shah says. You don’t need a diagnosis to do it: you can simply say, “I struggle to communicate clearly in the workplace and I need help with this part of my new role. Psychology tells us that most people are far more happy to help us than we imagine.”
Organisations such as the National Autistic Society also have online resources that can be very helpful in supporting you to improve your communication skills, whether you actually have autism or are simply struggling with a trait that is classically thought of as “autistic”.
The hum of a kitchen fan becomes unbearable
Sensory issues – a sensitivity to light, noise, sound or touch – are a defining feature of autism, and this might rear its head in a more serious way in midlife. A tap on the shoulder from a stranger in the supermarket, a bright light in the dentist’s surgery or even the hum of your kitchen fan may now be unbearable (where in the past it was simply a cause of discomfort).
Midlife is stressful. It’s the point at which we are least likely to report being happy with our lot. Menopause kicks in, we suffer the loss of our parents, or perhaps are made redundant.
“Experiencing more stress can certainly make the symptoms of autism harder to cope with in the ways that a person has learnt over the course of their lives,” Shah says.
What to do
While autism can’t be “treated” as such, staying in good health, minimising stressors and having social support are all key. “It sounds rather like a cop-out, but it’s crucial to find something that works,” Shah says.
“A lot of the advice for dealing with sensory overload is aimed at children and may not be suitable for adults. Earplugs are helpful for some and totally uncomfortable for others, and the same goes for other aids.”
Travel anxiety skyrockets
“A hundred years ago, when people lived in small villages and didn’t need to travel to see family and friends, there were probably fewer people with outwardly autistic characteristics,” Shah says. For autistic people, travel can be incredibly stressful due to its unpredictable nature.
In midlife, you may well find yourself taking long flights to visit a new grandchild, or perhaps travelling more frequently for work. The disposable income to go on holiday more often can be a mixed blessing. The delays and diversions that plague airports are just one stressor, alongside the dirt that accumulates on trains and buses and the fact that using them necessitates standing in the sweaty armpit of a stranger. It is a minefield for those on the autism spectrum.
What to do
Planning ahead can really help, whether that’s carrying hand sanitiser in a dedicated travel bag, talking through the itinerary with a trusted friend or “using 3D map tools like Google Earth to immerse themselves in a new and unpredictable environment before they have to actually be in it”, Shah says.
Moving house is pure hell
The boxes. The contracts. The new and unpredictable bin collection schedules, meeting new neighbours and, if you’re unlucky, the mammoth task of learning how to live with a stranger, like a lodger.
Moving house is a massive faff at the best of times, but for someone who finds change extremely difficult to cope with, as many autistic people do, it can be absolute torture. Becoming an empty nester or moving in with a new partner following a divorce may come with a comparable level of anguish.
What to do
Anyone with autism will benefit from going through the situation multiple times with friends or family to come to terms with the inevitability of uprooting themselves from their home.
“Transplanting” the routines that give comfort as soon as is feasible, such as nipping out to the corner shop for the paper and a pint of milk each morning, can ease anxiety and help them to settle in.
A fear of retirement
We’re told to look forward to old age as a time of rest and relaxation after working hard for decades. “In reality, a lot of people find it stressful because of the change and the lack of structure that comes with no longer having a regimented daily routine, and a loss of meaning and purpose,” Shah says. “Autistic people are more reliant on routine than others, so retiring might be especially difficult for them.”
What to do
It’s important to bed in new routines to mitigate the upheaval of retirement, says Shah, whether it’s visiting the cinema each Tuesday or going on a walk around the block after dinner every day. A new pursuit, such as learning about a new period of history or picking up a gentle form of activity like tai chi, can bring new meaning too.
Autistic children are known to have “special interests” – an intense love of a certain subject or hobby – and this does not disappear in adulthood. Retirement can be a good time to devote yourself to the things you love. Just make sure not to isolate yourself in the process, as maintaining a social life is important to good mental health, and autistic people (men especially) are more prone to loneliness as they age.