Adulthood autism diagnoses: ‘It’s just nice to finally know why I was always on the outside of all the groups at school’

Two women share their stories of learning they have autism much later in life than most people do

It is estimated that 1.5 per cent of school-aged children in Ireland have autism, a disorder which is described as a complex, lifelong developmental disability which typically appears during early childhood and can impact a person’s social skills, communication, relationships, and self-regulation.

But while most people who have autism are diagnosed at an early age, some don’t get a diagnosis until they are well into adulthood.

This was the case for Cliona Kelliher, who has just recently found out that she has autism, having “felt different” for her entire life.

“I was just diagnosed in the past few months,” she says. “It came about after a Facebook friend, who had got a diagnosis some years back, shared some information in relation to autism which I found really interesting. I realised [after reading the post] that I related to a huge amount of it and that began the process of me questioning myself.

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“Then I joined TikTok and began to see lots of content about diversity and again it all seemed incredibly specific to my own experiences — especially as all the changes that occurred due to the pandemic had the effect of making some particular characteristics of [what I now know was] my autism, more challenging. So earlier this year, I decided to pursue an official diagnosis, even though at that point, I was almost completely certain that I was autistic.”

There are so many wonderful aspects of my autism that I take joy in and I’m very proud to be autistic and to celebrate those characteristics in myself

The 53-year-old says that as soon as she got her diagnosis, she was also encouraged to find out if she had ADHD — and discovering why she always felt so different to others has been very liberating. “I went to the Adult Autism Practice [to get diagnosed] and found them brilliant, although the process itself was quite tiring and brought up a lot of memories that were quite difficult,” she says. “After I got my official diagnosis, I was also told that it would be worth pursuing a diagnosis of ADHD as one of the screening tests showed that this was also likely [the Adult Autism Practice specialise only in Autism diagnosis and don’t do ADHD diagnoses so I will have to pursue that separately].

“Discovering that I am autistic has been life-changing, but it will take time to unlearn a lot of the ‘masking’ I had been doing — and while I may not outwardly seem to be autistic or struggling, the constant effort of masking eventually took a huge toll on me and I ended up in what I believe to be autistic burnout for the last year. So, I have been very open about my diagnosis and I’m learning to manage my sensory issues better and try to minimise situations which cause me distress. I have also been learning to go with my own natural rhythms in terms of how I study (I am currently completing a Master’s) and leaning into hyperfocus when it happens and not trying to do things in a linear way.”

The married mother of two grown-up daughters, who lives in Kildare, says “feeling different” has always been a constant in her life. And now that she understands why, she would encourage others who feel the same way to seek a diagnosis or at the very least, celebrate the fact that they are different.

“I have often been bewildered by the fact that people can’t see things the way that I do, but for most of my life I didn’t understand that my brain literally works differently,” she says. “I tended to blame myself for my ‘oddness’ or inability to fit into social situations that seemed so comfortable for other people. I also tried to organise my life and time in a way that wasn’t suited to my own neurodivergence and that actually made things quite difficult because I was working against my own natural brain patterns a lot of the time.

The fact that society expects everyone to be the same is wrong

“For others who may feel that they are autistic or on the spectrum, I would say that a diagnosis has been very helpful for me. But a diagnosis may not always be possible because of circumstances, so (I think) self-diagnosis is valid. Talking to others in the autistic community can really help with the feelings of isolation and I would urge people to reach out and get the information they need and connect with others.

“So, I think it is really important to celebrate people being different. There are so many wonderful aspects of my autism that I take joy in and I’m very proud to be autistic and to celebrate those characteristics in myself. Understanding difference can also really make things easier for neurodivergent people who have higher support needs and need accommodation and understanding. Stimming, for example, is a way for autistic people to self-regulate and it would be great to just normalise that hand flapping or fidgeting is part of being an autistic person and not something to be suppressed in order to ‘fit in’.”

Anne Marie Gilson was also diagnosed with autism as an adult and says she spent most of her life trying to change herself until finally realising that she was ‘more than good enough’ as she was. “When I was a kid in school, I was always the butt of other girls’ jokes, as they didn’t see me as being the same as them and could quite often be quite nasty about it,” she says.

“I couldn’t sit still, I found myself zoning out when people were talking to me and I always (and still do) preferred my own company.

“When I left school, I got the perfect job in horticulture and have spent the last decade or so enjoying my time at work as it involves being outdoors on my own or in a poly tunnel attending to plants. This has made me very happy but I have always felt like an outsider — and it was only when my niece was diagnosed with autism last year, that I began to wonder as I could relate to a lot of the things my brother had told me that she was struggling with.

“So I made an appointment for an assessment and sure enough, it was confirmed that I do have autism.”

Although the 29-year-old, who lives in Dublin, says nothing much has really changed since her diagnosis, she does feel better in herself. “It’s just nice to finally know the reason why I was always on the outside of all the groups at school,” she says. “Looking back, perhaps the girls in my class didn’t mean to be intentionally cruel to me, but I think the fact that society expects everyone to be the same is wrong — I think we should celebrate people being different, rather than punishing them for it.”

About Autism

  • There is not much current data available, but in 2016 a policy advice report by the National Council for Special Education on Supporting Students with Autism Spectrum Disorders in Schools, revealed that 1 in 65, or 1.5 per cent, of the school going population in Ireland had a diagnosis of Autism
  • Autism can affect the way a person thinks, communicates, interacts, and experiences the world around them
  • It is referred to as a spectrum, and it affects different people in different ways
  • Some Autistic people communicate verbally, others may use non-verbal methods of communication through technology, pictures or images while some may use their hands or body to help them communicate or express emotions
  • Some people with Autism may appear to have difficulty with reciprocal conversation or find it difficult to express or understand emotion. This can sometimes lead to misunderstandings and can cause difficulties maintaining relationships
  • Some Autistic people can have sensitivities which mean that they may not see, hear, or feel things in the same way as others
  • An overload of sensory input may lead to a feeling of being overwhelmed and may cause anxiety in others
  • Some people with Autism need and find comfort in routine. If things change unexpectedly, it can be upsetting
  • Some Autistic people can have interests or hobbies which appear unusual to others or they may want to know everything about a particular topic
  • ·It is important to note that not all characteristics apply to every person on the spectrum as every person has their own set of strengths and challenges
  • While some Autistic people require no support or very little in their daily lives, there are those who require significant support
  • There are some who have co-occurring diagnoses, disabilities, or other significant care requirements
  • Some people with Autism may not be able to enter the working world, may be non-verbal, unable to advocate for themselves, and/or may require full time residential services
  • Every Autistic person is unique, should be respected, and should receive a level of support appropriate to their individual needs — in all aspects of life. For more information visit autism.ie
Arlene Harris

Arlene Harris

Arlene Harris is a contributor to The Irish Times specialising in health, lifestyle, parenting, travel and human interest stories