There has been a huge shift in awareness around neurodiversity recently, with improved provision for children in schools and increased middle-age diagnosis and detection in women. Still, one group has remained underserved when it comes to support; adults over 60. A recent study estimated that 89-97% of autistic people over 60 are undiagnosed, leading experts in the field, such as Dr Louise Rutter (who last year co-authored a report on the subject for the British Psychological Society) to brand them a “neglected generation”.

It’s an issue facing adult children who might be caring for older parents and recognising traits of autism and ADHD. You may be wondering where to find support – or whether that’s the best course of action (the experts say it is). Here’s a guide.

Late-life struggles

Combined with the fact older neurodivergent people are significantly more likely to be undiagnosed, later life can bring a series of disruptive changes – making their traits more obvious or unmanageable. For some people, retirement age comes with a lot of fun, freedom and control once they’re not constrained by work or caring responsibilities. But for autistic people who may have built lives with routines designed to protect themselves, this can be destabilising, says Rutter. It can also come with loneliness and “losses and changes, transitions, changing health, moving into care, cognitive difficulties, bereavement. There’s a lot of lack of control, choice and predictability, and that can then intersect with some of the core features of autism.”

Chartered clinical psychologist Dr Neil Drew adds that, for those with ADHD, the loss of dopamine that is sometimes associated with retirement could lead to depression.

What to look for

Have you ever wondered whether an older parent is autistic or has ADHD? The key, experts say, is not about what you may perceive to be neurodivergent characteristics, but whether they’re causing significant issues in their lives. “It’s not just about them liking to go and buy a newspaper every morning,” says Dr Gavin Stewart, who leads on ageing and autism for King’s College London’s ReSpect Lab: “It’s more that if that shop closes, it causes a lot of distress, that the routines are disrupted.”

Clinical psychologist Dr Emilie Moorhead asks: “Within the context of autism, do they find it really hard to manage social situations? Are there difficulties around communication? Are you finding there’s a lot of isolation, or if there are large family events and gatherings, they really find it hard to manage, or need a lot of time to recoup afterwards?”

Traits may become more obvious with age. “People can start looking more stressed, more rigid, more insistent, more sensitive, more forgetful or less sociable later in life,” says Dr Georgia Pavlopoulou, director of Autism Central at Anna Freud. “Their nervous system has worked incredibly hard for decades, and now there is potentially less capacity to mask and hide.”

Some, though, will still be masking. Dr Lisa Williams, clinical director and founder of the Autism Service, says: “To the layperson, it can be difficult to tell when an adult is masking their autistic traits, as the very point is to hide the more unusual parts of their interpersonal style. Signs of masking include conversations sounding pre-planned or scripted, and interactions not being sustained due to fatigue.”

Should you seek a diagnosis?

While everything should be taken on a case-by-case basis, experts largely encourage seeking a diagnosis for an older person – and cite examples where it has been advantageous for people in their 80s and beyond. “An autism diagnosis is not just about the here and the now,” says Rutter. “For a lot of people, it triggers a process of reflection across the lifespan and of making sense of who they are now and how they got here.”

Moorhead agrees: “Some people might have gone their whole life feeling different, or that certain aspects of their life, whether that’s social situations or employment, haven’t gone as well or have been harder than they may have thought. Getting a diagnosis can be really helpful in making sense of things.”

And it’s never too late for people to live in a more authentic way, if they’ve spent decades masking, says Drew. “They may still have decades to live.”

How to broach the subject

Opening a conversation about neurodivergence with an older adult can be really difficult. Many might have outdated preconceptions around what autism is, what it means for them and how they will be viewed. Drew suggests drip-feeding small pieces of information: “Rather than, ‘Here’s a huge book to read about autism’, it’s more about saying: ‘You said you really struggle with loud noises – these Loop earplugs might help.’” He adds that genetics mean sons and daughters may have similar traits or a diagnosis, enabling them to connect on that level. “It’s like saying: ‘Dad, I really struggle with busy social environments. How do you find it?’”

Stewart suggests discussing neurodivergent celebrities who they may like: “Having awareness of people who live very normal or wonderful lives helps dispel some of the myths about autism.”

Consider previous diagnoses

“We know that 70-80% of autistic people will have at least one other coexisting mental health condition, whether that’s anxiety, depression or OCD, and up to 40% can have two or more conditions,” says Moorhead. “Those with a late diagnosis of autism or ADHD may have gone through their lives getting a number of different diagnoses, with a sense that none of them really quite fit.”

ADHD can manifest in forgetfulness, difficulties with attention, problems with organisation and brain fog. “A number of people, especially late-diagnosed females, have thought: ‘I’m really struggling. Is this early onset dementia?’” adds Moorhead. These symptoms should be talked about with a doctor.

The family ripple effect

Experts increasingly meet older people seeking a diagnosis after identifying with a grandchild who has one. Stewart sounds a note of caution, though: “Let’s say there are multiple autistic people in the family; what works for a child might not work for an older person or an adult. As people get older, their experiences may change and their needs may change – what works today might not necessarily be as effective tomorrow.”

Many experts also point to patients who say a diagnosis has helped the whole family. “They talk about how it has brought them closer to their loved ones because they feel more understood,” says Drew. It can also help relieve past traumas and issues, or act as “an explanation for long-established behavioural patterns”, says Williams.

“It does sometimes help when somebody has felt confused by the way an older member of the family behaved at different points in their lives,” adds Dr Sue Smith of the National Autistic Society. “Being able to see that in a different way can be really therapeutic.”

Finding a pathway

If you and a parent want to explore a diagnosis, the first port of call is your GP. However, Williams says: “Many older patients feel they are a low priority for an NHS assessment, so seeking diagnoses through private providers has become a common solution.” She adds: “Accurate and robust private providers exist, but care must be exercised to ensure that any diagnostic testing is administered by a regulated clinician who is qualified to do so.”

There are two quality markers to look out for when choosing private providers. The first is whether they offer face-to-face, in-person assessments, as these give rise to the most accurate and reliable outcomes. The second is whether the individual providing the testing is a clinician regulated in their practice, for example by bodies such as the Health and Care Professions Council or General Medical Council.

Physical benefits

Getting a diagnosis can be important to an older person’s physical health as well as their mental health. Pavlopoulou says neurodivergent people can be more prone to health conditions (such as high blood pressure, heart attacks and cardiovascular diseases) that have been exacerbated by the chronic stress of masking for decades. She also notes research that shows people with ADHD are more likely to die prematurely as a result of accidents. ADHD medication could curb these, and will help people not just to survive, but to live happier, healthier and longer lives.

Don’t wait to adapt

While a diagnosis can be affirming, it’s not necessary to have one before adapting your behaviour to help a parent. “We might just focus on things like, do they feel safer with routines?” suggests Pavlopoulou. “Do they prefer clear instructions, literal communication? What can protect their senses from overload? We can still support people, even without a diagnosis, by supporting the nervous system without labelling it.”

Professional support is patchy and a postcode lottery, but Smith advocates for support that involves other neurodivergent people. She says: “Whether that be mentoring, coaching or groups, the opportunity to link up with other people who understand your journey in a very experience-centred way – I would see that as ideal.”

Lean into hobbies and special interests

Having more freedom away from work or caring responsibilities can mean “less pressure to conform”, says Pavlopoulou. Lean in and exploit this freedom. “Some people, for the first time in their 50s and 60s, take an opportunity to unmask and show others who they are – and to connect with their special interests and hobbies, with no guilt.”

Moorhead says it’s about making sure people’s “values and strengths are seen and appreciated. Neurodiversity is as much about the things that people can contribute.”