A different way of being

Posted on: 5th November, 2018

Category: Features

Contributor: West Cork People

Elaine McGoldrick (53) was formally diagnosed autistic at the end of June this year, three days before speaking at the first Autism Friendly Town meeting in Clonakilty. Originally from Cork City, the teacher is now living in Rossmore, Clonakilty. She shares her story with West Cork People.

Before I start, I would like to say, I hate all the emphasis on me.  At the same time, I try to avoid using us, because the autism spectrum is so broad and varied, I can’t speak for everyone.

I am sharing my story because I see the same feelings that I experienced in the children I teach. The Autism Friendly Town initiative has given me an opportunity to open a discussion. Maybe to cause someone to think twice in terms of their own understanding or expectations.

It can be hard for any of us to fully appreciate another’s struggle with something we find straight forward. But their struggle is real and needs to be validated whether they sit on the spectrum, or not.

For some reading this, my problems may seem trivial by comparison to the life of their loved one and my story may cause them pain.  I am sorry.

Q: You were very recently formally diagnosed with Autism. What kind of impact has this diagnosis had on your life?

A: It has been life changing on a number of levels. It makes sense of me. It helps me make sense of the world and it’s given me a community. I have made some amazing friends, great people who truly get me.

Q: What was it that prompted you to get assessed at this stage of your life?

A: It never occurred to me that I was autistic until I began to research friendship to help a student transition to secondary school. As I was reading I began to realise how much of the social information was news to me. That lightbulb moment was followed by intensive research into the female presentation of autism. I was also lucky to find the Cork Women’s Aspergers Group. They meet every fortnight and warmly welcome anyone who identifies or is questioning the possibility of being on the spectrum. Hearing other women’s stories and relating to so many common threads was just such a huge relief.

It takes time to become convinced.  I joined the online community. I would read books, articles or watch online videos, anything to find the differences that proved I couldn’t be autistic!  At some point the balance tips as you realise we are all different.

My decision to seek a formal diagnosis relates to my wanting to advocate. Much of what is written about autism is written from a neurotypical or non autistic perspective. The autistic perspective is so different that I’ve often felt like a lone voice. My hope would be that having a formal diagnosis would mean that voice could be recognised as offering an essential autistic perspective. The Autism Friendly Town initiative has taken that hope way beyond anything I could have imagined.

Q: What kind of impact did not having a diagnosis have on your life before this, as a child, teenager, young adult and mother?

A: I’m still working that out. Knowing I am autistic means I have to reframe so much of my life and challenges. It’s not unusual for women to have a history of ME or mental health problems. This can actually be autistic burnout, which results when our minds and bodies are so exhausted from the sheer effort of masking or trying to fit in. Unfortunately we mask so well, and the predominant male stereotype abounds, so nobody thinks of autism.

There are lots of flashbacks. It can be funny too, as suddenly an embarrassing  memory pops up and you realise, that was my autism!

Q: How do you view Autism?

A: For me, autism has been a key to unlocking the past and opening a brighter, gentler future. I had been struggling to be someone I was never meant to be. That struggle brought a lot of pain, frustration and self blame. Now I have the choice to accept my autism, embrace it and maybe finally be my true self. It’s still early days, but discovering I am autistic means I can learn to be compassionate to me.

Q: How do you feel the majority of people view Autism?

A: Sadly, as a problem to be solved rather than a different way of being. This comes from focusing on difficulties without sufficient emphasis on autistic strengths. Unfortunately this can create a sense of panic to focus on catching up.  Most autistics follow a scattered developmental path, soaring ahead in some areas, lagging behind in others.  Where possible we should follow a child’s lead to develop skills as opposed to targeting the skills to lead the child. The latter can be very frustrating and might even hinder progress.

Q: Tell us about the female presentation of Autism…how it differs from the presentation of Autism in the other sex?

A: The female presentation isn’t limited to females; some males also fit the pattern.   The recognisable male presentation however is more externalised and can be quite visible. It fits the stereotype more readily. The other is often almost invisible, hidden behind awkward efforts to fit in. Unfortunately this type of ‘success’ brings higher expectations and so it can often be more difficult to access support.

Q: What kind of challenges do you face on a daily basis?

A: Challenges can vary greatly on different days, even within any given day. A lot has to do with maintaining a balance. Too much sensory input or social demand and everything heightens – my system goes on high alert.  Something I might take in my stride another day may suddenly prove too much. This has to be internalised until I’m in a safe space, not unlike the child who has the meltdown when they get home from school.  I am more likely to shutdown and retreat to the safety of my bed.

Why are some situations more difficult for you than others…explain?

A: Socialising in larger groups, something which I suppose most people would look forward too, can fill me with dread.  Every detail from what do I wear, to where will I stand or sit, who will I speak to, what will I say, spark anxiety.  Over the years I have braced myself to face nights out because of a sense of duty.  It is hard work when I get there, because I always try to give it my best shot.  I watch people banter with ease, but I run out of small talk really quickly and find the ensuing silence painfully awkward. I usually have an early exit strategy planned before I go.

Q; Tell me about being a teacher w:th Autism…what are the challenges, highlights?

A: Every teacher faces challenges, and yes autism can add to those.  One of the main reasons people look for diagnosis can be to help with workplace accommodations.  As we have seen with the Autism Friendly Town initiative, minor changes around communication, predictability and sensory differences can have huge benefits.

I would think the highlights far outweigh the challenges. For me it is the connection I can build with my students.  I love working in Special Education. I think it is quite a creative field, because you are constantly striving to find a new path to success.  That is so individual to each child, but when you get it right, it is awesome.  For me, it is important that my students have the opportunity to be themselves when they come into my room. I take it as a compliment if they come in angry or frustrated, because it suggests they feel safe.  The sensory box is always at hand.  I try to follow their lead and direct learning within their interests.

Q: How did you become involved with the Autism Friendly Town initiative in Clonakilty?

A: There was already so much fantastic work going on in Clonakilty, from the autism friendly shopping in Scally’s that Patricia O’Leary instigated, to the amazing work of the Autism West Cork Group in supporting families. I was very involved with the online community and the Cork group so I had met Adam Harris on a few occasions.  It is crucially important for our community that there is nothing for us without us, so Adam was looking for someone local.  By sheer coincidence I had been diagnosed three days before the first town meeting.  I was already keen to advocate so it was a case of being in the right place at the right time.

Q: In your opinion, how will people with Autism mainly benefit from an initiative like this?

A: The wide range of AsIAm training that was availed of across all areas of the community has led to many self confessed moments of enlightenment and shifts in attitudes.  Knowing that there is not simply an understanding, but a welcome for autism to such an extent in this community is empowering.  The provision of visual guides to help with planning and predictably and the widespread welcome for assistance dogs means increasing social access.  The sensory accommodations, such as quiet hours and sensory boxes act not only to reduce possible overload, but are strong visual reminders that you are welcome to be yourself and stim in Clonakilty.  I don’t think you can overestimate the benefits of this initiative for the autism community.

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