Aoife Dooley: Why we all need to talk about adult autism

An outspoken advocate for autism awareness, Aoife Dooley says it has been one of the reasons for her success and she would not want to change that part of herself, writes Denise O’Donoghue
Aoife Dooley: Why we all need to talk about adult autism

An outspoken advocate for autism awareness, Aoife Dooley says it has been one of the reasons for her success and she would not want to change that part of herself, writes Denise O’Donoghue

Aoife Dooley received a diagnosis of adult autism.- Photography by Ruth Medjber
Aoife Dooley received a diagnosis of adult autism.- Photography by Ruth Medjber

AOIFE Dooley has more than one string to her bow: She is an illustrator, a comedian, and an author.

Roddy Doyle once reached out to her to compliment her work and said it reminded him of why he loves Dublin. Remembering that moment, she says: “I nearly fell down the stairs running down to tell my nana.”

She is also an outspoken advocate for autism awareness. Aoife, who is from Coolock, was diagnosed with autism at the age of 27 and she says it gave her a greater understanding of herself. “It was surreal, if I’m being honest, and I’ve learned a lot about myself and others,” Aoife says.

“I spent my whole life trying to fit in to please others when I knew deep down that I was different but couldn’t articulate why I was different. I got to the stage where I would rather draw in my room than spend time with people my age because it wasn’t just about me feeling a bit different but how others made me feel about myself because I was different.

“It’s like you’re constantly looking for an answer you don’t know the question to.”

Aoife says she didn’t realise the extent of the autism spectrum until her own diagnosis. “When you get a diagnosis as an adult it’s bizarre because everything and nothing changes at the same time. You’re still you, but now you have the tools to understand who you are and how you work. A lot of people don’t understand what autism is or how vast the spectrum actually is and I was definitely one of those people; I hadn’t a clue.”

Tara Matthews, deputy executive director of the Irish Society for Autism, said the organisation is seeing more adults seeing advice about autism.

“In recent years we have experienced an increasing number of calls concerning adults who suspect that they may be on the autism spectrum,” she says. “A person may wonder if they are autistic; they may have seen or read something which describes their own experiences. It is not unusual for some people to have gone through life without a formal autism diagnosis. However, for those seeking a diagnosis we would encourage them to contact their GP to discuss this further and their GP should be able to advise.”

Speech and language therapist Dr Caroline Winstanley, who confirmed Aoife’s ASD1, which was once referred to as ‘high-functioning’ Asperger Syndrome, says she is seeing an increase in the number of adults seeking assessments for autism. Many, she says, realise they may be on the autism spectrum after attending an assessment for their child. “In the last two years, I have seen an increase in older teenagers and adults seeking private ASD assessments,” she says.

“A lot of the adults that I have assessed have been attending adult mental health services due to depression and anxiety, and through intervention, it had become apparent that the root cause of their difficulties may be autism.

“There have also been cases where some of the adults I have assessed have gone through an autism assessment with their child/children and then realised that they would have many similarities.”

Dr Winstanley believes more people are aware of the symptoms of autism through media reports.

“ASD is also more talked about in the media in general and some people I see would have read about autism and have self-identified,” she says.

Aoife too is trying to increase awareness of autism in adulthood.

She revealed her diagnosis publicly in a way that felt natural to her — through her illustrations on Instagram and @Aoife_Dooley on Twitter. “I use my illustrations to spread awareness about different issues, for example, the anti-vaccine debate which, unfortunately, people still believe,” Aoife says.

“It’s been discredited time and time again, proving no evidence that the MMR causes autism, and the doctor who initially started it all, Andrew Wakefield, has been discredited.

“People fear autism because they don’t understand what it is. People don’t realise that without autistic minds we would not have the technology, music, art, amongst other amazing things, that we have today.”

Aoife says people are happy to engage with her online about autism and learn about it. “The reaction to what I speak about is usually grand; people are interested in the topic.

“I don’t talk down to anyone either because there was a time when I didn’t know what autism was and I respect that some parents who are on the fence are just scared, but it’s important to weigh up the facts.

“I get the odd ‘anti-vaxxer’ or troll every now and then but that’s nothing a swift block doesn’t sort out.

“I actually think it’s funny when people use my autism to attack me like it’s something to be ashamed of when in fact it’s one of the reasons I’ve been so successful in what I do. I wouldn’t ever want to change that part of me, because it is me.”

Aoife says she knew when she was diagnosed that there must be others like her struggling without a diagnosis. “I thought it was important to talk about it because I was absolutely numb when I found out,” she says. “I was happy but I was really angry too because I had struggled for such a long time with no help. I thought to myself on the day I received my diagnosis, ‘how many other people are there out there, people like me, but they don’t know?’

“I’ve had nothing but positivity since I’ve started talking about autism on my platforms and it’s helped a lot of people. Some have been assessed and found out that they’re autistic too. Autism is different in women so some traits are harder to spot than others and we learn how to blend in and be like other people so it can be missed and go under the radar. This is one of the reasons why women are diagnosed late.”

Autism manifests differently in each individual, and Dr Winstanley says there are signs that can indicate it. “Autism, regardless of when diagnosed, is a spectrum and each person that I meet can present very differently from the next,” says Dr Winstanley. “Adults with autism can report difficulties in making friends and maintaining social relationships; managing the social components of their day job. They may experience difficulties in understanding their emotions and the emotions of others. They may have difficulties using non-verbal communication, such as gestures and eye-contact and then linking these with their verbal communication. They may have difficulties with small talk and conversation and may appear to have no filter and can make inappropriate comments. They may have intense interests that become all-consuming and make it difficult for them to engage in other activities,” she says.

“Some of the adults I would meet would have already developed many coping strategies for managing more challenging situations and can mask some of their difficulties.”

Aoife says her diagnosis means she understands herself better and, as a result, she is much kinder to herself.

“I am so much nicer to myself and don’t beat myself up over things that I know I’ve absolutely no control over. I think it’s also allowed my boyfriend and family to understand me better, which is great because I have a much stronger relationship with them now. It kind of feels like a weight has been lifted and I can just be me and live my life now knowing my own limits. I feel a lot more confident in myself.”

Dr Winstanley believes a diagnosis can ease a patient’s anxious feelings and allow loved ones to support them better. “Just receiving a diagnosis can be a great source of relief and a useful framework for understanding their early life experiences and also helping partners, wives, husbands, family members, employers, and friends understand and support them better,” she says.

Aoife tries to help others who reach out to her but says she can only speak about her own experience.

“A lot of people assume that autism is the same for everyone when in fact we are completely individual,” she says. “I wish I did have all the answers but I’m still only beginning to understand it for myself. I feel like I’m only on chapter two of a book with 200 chapters.”

  • aoifedooleydesign.com

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