As part of neurodiversity celebration week, we wanted to hear from those of us who look after someone and identify as neurodiverse. Our recent Mobilise Moment, a survey to carers in our community, revealed that 44% identify as neurodivergent with only 2% saying it doesn’t impact our caring roles at all. Neurodiversity and neurodivergence are umbrella terms that describe having a brain that functions differently from the typical. This includes a wide range of people who might have autism, ADHD, dyslexia or OCD that cause people to perceive the world in unusual ways.
We spoke to two members of our community who have autism to learn more about how autism can impact our caring experiences. We can click on the story that resonates with us the most, or read both for a fuller picture of the experiences of those of us with an autism diagnosis who are looking after someone.
Saul cares for his mum with dementia, while also navigating his late autism diagnosis. He shares the emotional impact, the challenges of change and uncertainty, and the importance of support networks.
Glynn cares for his wife with mental health needs. He shares how his diagnosis has helped him in his caring role. Plus what he's learnt along the way and advice for other carers in similar situations. Read Glynn’s Story
Saul’s story
Saul, an active member of the Mobilise community, has kindly shared his experience.
Saul cares for his mum, who was diagnosed with dementia. Like many of us, he took on the role out of love and responsibility, navigating both the emotional and practical challenges that come with caring for a parent. Saul is also autistic, something he only discovered in adulthood with his mum’s encouragement.
He opens up about how his diagnosis has shaped his caring role, the unique challenges he’s faced, and what he’s learned along the way.
My caring role
I’ve struggled to find my place at work, I don’t feel I have managed to reach my potential. I’ve never had a job I really liked.
I had been unemployed and not very well for some time. When I found out Mum had been diagnosed with dementia, I knew things later on would be hard.
Owing to my circumstances, Mum had been very supportive through very difficult mental health problems. I felt now I owe it to her to be there for her when she needed me. It’s a hard job, but I did my best. I am pleased I found I am more capable than I had thought.
Caring for Mum after all she had done for me, was the least I could do. I was not perfect, but I made sure I did my best. It’s the first job where I had such responsibility, and it was difficult at first to find my way. But I felt this was an opportunity to pay mum back, and I took it seriously. It meant the world to me.
How I realised I was autistic
I never had any idea what my problems were. I had been diagnosed with dyslexia when a teen but had not thought beyond that. It was Mum who saw a program on autism and felt it could apply to me. So she approached the doctor, and we pursued the autism diagnosis from there. I knew I had problems fitting in, but I had no explanation for them. It was thanks to Mum’s intervention that I found out I was autistic.
How has being autistic shaped how I care
Being a vulnerable person I just did my best for Mum as she means so much to me. I felt I owed her a big favour for caring so much to help me. Some aspects of my autism feel challenging in my role. I feel that my limitations made things much harder and more stressful.
When caring for someone with dementia you are gradually plunged into a world of the unknown. I have always felt a stronger than average need for security, to know how my future will be. To take comfort in the reassurance that things won't change. But of course, with this caring role, they can change any day. I may have needed to call the doctors if Mum was unwell. I may have needed to call an ambulance, and it was realistic that at any time we could face a medical emergency.
The anxiety this put on me was extreme. Lots of unknowns. And along with autism, I am working to manage depression. Being depressed means a molehill is actually a mountain. Simple things become extremely hard. Yet regardless of this, I had to carry on and do the best I could. I was determined to not let Mum down.
The biggest challenges I’ve faced when caring for my mum
One of the biggest challenges was Mum’s lack of mobility. She could barely walk, let alone go out to the doctor. Our doctors were great but I did have to continually mention mum was housebound. If she needed help it had to come to her. Luckily it did, and we
were looked after very well.
My biggest worry was Mum having a fall in the house, as that could potentially lead to a broken hip, other bone, or head injury. And could be an emergency. Overall, I felt supported by the professionals we interacted with from the GP to 111 call handlers to local services. I did feel they were helpful but the ambulances don’t prioritise falls, so if she fell the wait could be long, and that in itself is dangerous.
What would make the biggest difference for me as a carer with autism?
I think there should be someone to check on the well-being of the carer. I was lucky to have an admiral nurse. But for those who are neurodivergent, a regular specific professional should be checking how that person with needs is. Especially with their stress levels and mental health.
What I wish more people knew about neurodiversity
Everyone’s experience of autism is different. No two people navigate caring in the same way, and assumptions can be unhelpful.
Autism is very diverse and they say it is a spectrum. The best thing anyone can do is listen and let autistic carers share their own experiences rather than predict what one person’s experience of autism is like. Let them tell you.
My advice to other carers who are autistic would be to seek good social support networks, you will need them. That’s what I found in Mobilise.
If you are looking to join a support network of others looking after a family member or friend, join the Mobilise hub.
Glynn’s story
Glyn lives in Hornchurch and cares for his wife who has mental health needs which have re-occurred over the past 25 years. He took early retirement at 60, from a 20+ year City IT role and following a 14 year RAF career. Glynn is autistic.
"Coming out as autistic is liberating, especially when others are aware of the syndrome"
Background to my Autism
Having a 'Bee in Your Bonnet' may be a classic description used, for someone you know, as being on the Autistic Spectrum and that 'Bee' has been buzzing in mine for a few days now, wanting to explain Autism to someone not on the Spectrum. Even this short paragraph has seen me go back and forth over it for grammar, inflection and intention.
Firstly, a background to mine and my paternal family's history with this condition or gift. My father is, currently, the source of this Aspergic river we all are tributaries of.
From childhood, I remember what 'hobbies' were but now are quite clearly Autistic 'devotions' and the classic 'devotion drops'. He initially was devoted to Airfix models, a hobby for many a man in his 20s. But they had to be authentic, with several models being adapted to indicate subtle changes to this or that airline's configuration. So a BAC 111 for Court Line may differ to BEA with a tipped wing or additional length or windows. He would then tell us over and again why.
This was dropped in favour of drawings and details of steam engines and rolling stock of the Great Northern Railway (a hobby/obsession kept to this day). Photography also became all encompassing only to decline after a few years.
From dad came the three boys, all touched in differing ways with obsessions and Aspergic tendencies. The eldest, being a gifted look and draw artist, a draughtsman, a curious intellect who would take things apart to see how they worked but fail to see the logic of putting them back together again.
You then had me, born left handed (but corrected by the church), a reading age ahead of my years, inability to make friends, preferred factual books to fiction, an A student in class but Z student in exams, totally absorbed in history. My failure to mix with people almost cost my RAF career ever starting, but for the pleadings of my dad.
Social gatherings that included loud music and flashing disco lights were a taboo, a discomfort and are still to this day.
My younger brother, was the statistics man, totally immersed in cricket statistics, memorising single overs in 1930s or 1950s test matches for trends. He is the reminiscer too, possibly very informative to others but dull to me. He too cannot take loud noises and flashes, with New Years Eve being his latest time of having to hide away from them.
So we are establishing here a genetic link to autism through my paternal line and it doesn't stop here. My eldest brother has two sons through different partners, the eldest is not on the Spectrum (possibly through his mother's chromosomes), the other, from a mother who is also on the Spectrum, a diagnosed Aspergic.
I only had a daughter and she does not appear to display the trait but my younger brother has three sons, with the middle one so high on the Autistic scale that he is unemployable. My sister's children do not show the tendencies.
"...caring in my case can be considered relatively straight forward if all the ducks are lined up."
What Autism is like for me
So that is the potted history of where we are. I suppose I need to assist the lay person to understand what it is like.
To us, what we do is normal, with a view that perhaps the rest are abnormal in not needing the details we so much strive for. We are constantly gathering information, constantly learning, constantly analysing this or that fact. A question cannot go unanswered and could, before the wonder of Google, go for weeks of research. If that subject appeals, scratches an itch, it then can become the next big thing within our devotions.
There are varying forms of attachment we can place with people but never expect me to be best mates. Friendship is too big a commitment to make with our in and out fluctuant ways, not to say that common ground shared with someone isn't akin to friendship.
You have to consider that an action or deed to us is there permanently. It is a reference point for our understanding. Being wronged once means it is a tangible expectancy that it would happen again.
You may not find us to be unfriendly, we may be aloof, peripheral and avoiding any central position. We are capable of courtship, romance and marriage.
For me, Autistic people are details people, are seldom late or on time but early (just in case), we can take offence easily but similarly can miss the whole tenet of a discussion. Most of the time it will be difficult for you to read our expressions.
"I have an intense loyalty to people or positions and therefore know it [caring] is something I have to do with gusto"
How autism has helped me to adjust to my caring role
We have to accept that autism has many guises and facets of ability. In my case, it is logic and order. So caring in my case can be considered relatively straight forward if all the ducks are lined up.
I regiment the day into periods of activity that best suit my wife's care. I am therefore up before her and retire after her. I ensure all that she needs; food, medicines etc are available and that they are consumed at set times.
How autism has made my caring role harder
Obviously an autistic person tends to follow things that suit their needs at the time. I have displayed above that we have all encompassing interests and throw ourselves into them, only to drop them for another interest. Unfortunately caring, nursing etc does not come into that category. But thankfully I have an intense loyalty to people or positions and therefore know it is something I have to do with gusto.
"The social and emotional void we often display to people are irrelevant, if you are able to plan and deliver care."
Have my own needs been accommodated by professionals when putting support in place for my wife?
Whether I view this as an autistic person or as a carer, my needs have never been paramount in any of the professional support for my wife.
I have purely been seen as an ancillary arm of their support to her, or more so her own support. I didn't know I was viewed as a carer until I broke down in front of a psychiatrist attending my wife and was introduced to carer groups. With my finding Mobilise myself at an online event.
What techniques have helped me?
Thankfully through cuppas with Mobilise, I have learnt I am hardly the first or only person with a caring problem. I have learnt that in real terms my situation is no easier or harder than others.
I have learnt to be open and expressive of my feelings (a challenge for someone on the Spectrum). I suppose I have also learnt about myself and how for some of the parents with autistic kids, that a normal-ish life is achievable for their charges.
I suppose mindfulness and wellbeing through creativity are not for me but I can use the breathing techniques - which I have checked against an Oximeter for SpO2 and pulse improvements when doing it – I know sad!
What would you say to another carer who has autism?
Without doubt the main thing I would advise is that you are capable and able to adapt to the role. The social and emotional void we often display to people are irrelevant, if you are able to plan and deliver care.
If like me, you have the added heightened emotional string – 'have excessive tears for a sad story' such as watching Long Lost Families or Love you Gardens, don't expect it to be apparent when dealing with your cared for because you will be too engrossed on your role.
Personal growth is hard to score on this journey because I have adopted a role, that is needed to be done and will be done to the best of my endeavours. I will say, however, that coming out as autistic is liberating, especially when others are aware of the syndrome.
Many thanks to both Saul and Glynn, for sharing their stories.
Useful resources
If we would like to explore autism and neurodiversity further, here as some helpful resources.
The national autistic society - The national autistic society are dedicated to transforming lives and changing attitudes towards autism.
Autism central - Autism Central is a peer education programme, commissioned by NHS England. It aims to build knowledge and understanding of autism and empower families and carers to advocate for the autistic people they support.
Christine McGuinness: Unmasking My Autism - A helpful documentary to understand how autism can present itself differently for women.
Autism (NHS) - The NHS page with more information on getting a diagnosis, and signs of autism.
Finally, if you are also looking after a family member, friend or neighbour, join the Mobilise hub. A space where those of us who just 'get it' come together and help one another by sharing our experiences and wisdom.