‘I am tired of people saying I don’t look or sound autistic’

Marie’s list of achievements in her life are intimidatingly impressive and she has continuously defied outdated assumptions about what it means to be autistic.

A poster-child for gifted children, she went on to work as a high-level consultant and CCO; advised Fortune 500 companies in the US; rubbed shoulders with royal families; interviewed Grammy winners; volunteered at orphanages and advised government officials.

The 44-year-old also accompanied delegations on trade missions across Asia and Europe and was the last person to interview the late Nobel Peace Prize winner Mother Teresa, Saint Teresa of Calcutta, in her home in Calcutta.

But she says that she is still surprised and dismayed that it is often her diagnosis of autism that she seems to find herself having to explain the most.

Stigma

In fact, she tells us that comments made by Catherine Noone about the then Taoiseach, Leo Varadkar In January 2020 highlights why the condition is still stigmatized in this country.

“Autism doesn’t have a look. Autism doesn’t have a sound. Every person living on the spectrum is unique.”

Noone was quoted as saying of Mr Varadkar: “He’s autistic-like, he’s on the spectrum, there’s no doubt about it. He’s uncomfortable socially and he doesn’t always get the in-between bits”. She later apologised to both the Taoiseach and the entire autism community.

“As we’ve seen recently in the news, ignorance around autism is rampant in Ireland. Luckily, there are many terrific champions around the country. But attitudes still need to change. I am tired of people saying I don’t look or sound autistic. Autism doesn’t have a look. Autism doesn’t have a sound. Every person living on the spectrum is unique.”

Unique

In playschool, Marie understood that her problem-solving skills were not like any other children’s. “My photographic memory (eidetic) became apparent when I seamlessly memorized multiple complete collections of adult and children’s encyclopedia sets, telephone books, and the Golden Pages.”

By the age of 13, she was already participating in local and national radio programs and at 15 she’d already received a national short film award.

Amazing achievements in their own right. But Marie says it was a reason to feel different. “I rarely felt accepted by others. Somehow, I didn’t belong there and it is painful for a child to be in such a situation.

I had to figure out a lot for myself from a very young age. Today, some of the following are common knowledge. In Ireland in 1975, they were not”.

Last year, Marie was featured in the Huffington Post’s Five Things To Know About Thought Leader piece where she explained why she was so vocal about those on the spectrum.

“I feel a responsibility towards the Neurodiverse community and those who live on the autism spectrum. But, I am a part of two minority communities — pile being gay on top of Neurodiverse. It can be a lot to take for some families. Mine has traveled a long way on this journey with me”.

One in 65 people in Ireland are affected by autism. And to foster better understanding, Marie describes what life is like being on the spectrum.

“I do not own a pair of jeans and I will do anything to avoid trying on clothes when shopping. I feel everything very deeply and I have always cut the tags off of clothes. I gravitate towards soft clothing, heavy bath towels, and very heavy bedclothes. Weighted clothing and bedclothes are more popular now with what I call us ‘spectrum babies.’

“I notice the micro flicker in fluorescent lighting and the buzz from the units is hugely amplified for me. Off-lighting instead of overhead lighting is terrific, when possible, like at home.

A good tip when in a large crowd of people, look down. It helps a lot. I take in too much information and I read nano-gestures. Anything that calms the overload is welcome.”

Sensitive

What about sensory sensitivities?

“Well, food sensitivities are a whole world and internal alerts are dulled. For instance, I don’t automatically know when I am hungry or thirsty. I used to set alarms to remember to eat and drink when I was younger.

Bose noise-cancelling headphones have been one of the most important purchases of my life. I have owned several pairs over the years and still do. Professional earplugs are helpful too when watching an action movie in the cinema. My hearing has always been super sensitive. Friends joke that I can hear the grass grow!

I naturally beat track of what I hear, so classical music in my life is wonderful. It is highly mathematical.

Swimming also helps to improve my balance as I am forced to use both sides of my body. I am less clumsy outside of the water after I swim, but I am very awkward in the water as my centre of gravity is off.

I am ambidextrous and it helps to be able to use a mouse equally well with either hand. I can play sports equally well left-handed or right-handed.

Therapy

Marie admits she has never even tasted coffee. This seems to be a common theme born out of listening to families with children and other adults on the spectrum.  Nor does she drink alcohol.

“I sleep very well, but sleep research shows my mind is as active as when I am awake. Sensory overload causes exhaustion. We need to rest afterwards to recover. I can be quite sleepy still when I wake up in the morning trying to orientate my body. It takes my tummy ages to wake up too. I get up at the crack of dawn every day”.

Marie says Sensory Integration Therapy has been lifechanging for her. “I started the programme in London some years ago. It is a highly specialised area and it is a pity that I must travel to the UK as there are no such high-tech resources in Ireland.

I have two rocking chairs and an amazing double parachute hammock at home which resets my balance. The slagging I get from family and friends is hilarious. Secretly, I know they just want them in their homes too”.

I was told by an expert in the UK that we calculate faster than we process. People mistake this for being psychic or intuition. It is just that we can figure stuff out faster and neurotypicals can need an explanation for that!

Three of my senses, in particular, proprioception, interoception, and the vestibular system were underdeveloped when I was born.

I always get an easy haircut. I cannot manage complicated haircuts with left-hand, right-hand coordination difficulties when looking in a mirror!

Challenges

Cooking is challenging with poor knife skills. I eat out a lot. That’s my excuse and I’m sticking to it!

My core is also still underdeveloped. I have a private assessment this week to see if I am suitable to start pilates which I think I will enjoy.

I now get to go to work every day as I am with no labels.

Orthotic shoes help with balance as we tend to be born with very flat feet. My feet are as flat as a pancake.

An orthopedic bed and pillows help me greatly. I have worn a back brace at home too as my posture has always been poor. Three of my senses, in particular, proprioception, interoception, and the vestibular system were underdeveloped when I was born. It’s very difficult to catch up after that”.

Belonging

Marie also recommends Occupational Therapy hand plasticine which she says is great for building up muscle strength in the hands when they weaken with stress or overload.

But it is her work that provides Marie with the belonging she now finally feels. “Thankfully, despite physical challenges as a child, I now get to go to work every day as I am with no labels.

It is such a relief that being gay and autistic has always been a non-issue for me and my colleagues at work. We need to stop alienating others because they are different.

If you ask me, there is nothing more valuable in this world than diversity of thought.”

Image via Marie O’Riordan

This article was originally published in December 2021.