Why I choose to be open about my autism

April is Autism Awareness month, and April 2nd is World Autism Awareness Day.

To mark this important period, I wanted to share why I personally feel it is important to put myself out there and be open about my own Autism diagnosis, even at risk of judgement, impacting relationships or my career.

I was diagnosed in my mid-thirties and at the time in some ways it wasn’t a shock but still came with a rollercoaster of emotion. I had to accept that there were major aspects of my brain wiring that made some areas of life difficult. There were sensory impacts in the workplace or at home, and confusion navigating social situations or relationships. A lot of the challenges will always be outside of my control and can trigger anxiety and stress. It’s an ongoing way of life for people on the spectrum. There was a post-diagnosis crisis, a lot of tears and much research and understanding required to come to terms with this reality.

Some things were confusing.
As silly as it sounds, one thing I couldn’t understand was this stereotype of autistic people being highly intelligent and scientific. It wasn’t me. And if I searched for role-models I found Bill Gates, Albert Einstein, Sir Isaac Newton, and many more well-known individuals who had achieved great things. And yet I felt like I had achieved nothing. It was difficult floating somewhere in average life but having the traits of amazing mathematicians and scientists. I felt broken without any benefit. It was a tough period!

I kept it to myself for a while. I had been masking things all my life, why change now. It was very personal and something I needed time to sit with. I needed to experience the world slowly gauging how things impacted me. What were sensory impacts vs social challenges. It was like a long-term science experiment – read about autism traits and then go about my life assessing situations. You don’t just tick a box of officially autistic and then completely understand yourself, just like you don’t just receive a diagnosis for a child and know how to raise them. During this entire time, I had only opened up to my husband, parents and about 2 close friends.

A while later, when my daughter was going through phases of assessment, I realised that I couldn’t show her that when you are diagnosed with autism it is something you keep to yourself and try to mask. What sort of role model would I be if I was constantly masking my true self and hiding who I am. It became clear to me that I had needed time to come to terms with the diagnosis and work through the detail. What I hadn’t thought that entire time was establishing a dialogue in our immediate family and teaching my children. This was a turning point to make our children more aware of neurodiversity and feel like our household was a place of inclusion and positivity for all of us.

Wouldn’t my consulting be impacted by potential clients knowing I am autistic?
Yes, at first this was a concern. I was worried people would think I was less capable or not the person for the project.
I think in my 20’s I would have worried more about this. At this stage in my career the concern was something I let go of. I know many of my contacts, for example, on LinkedIn know me well enough to believe I am highly skilled and capable. I know previous managers and colleagues who have tried to hire me again and think highly of me… being careful because the directness of autism might come across as arrogance here!
The overall feeling was unmasking was worth more than a few potential lost projects or maybe missing out on working with clients who don’t support neurodiversity so happy to dodge that bullet. I didn’t worry there would be work lost that would impact my income. There were enough opportunities in organisations who were much more accepting and inclusive.

With openness comes a sense of relief.
Trying to mask long-term felt like I was in a pressure-cooker. It was like perfectionism; constantly thinking about how I am coming across, the quality of my work, how much I achieve etc. It was exhausting.
The first time I referred to a challenge with my colleagues it felt almost life changing. I commented that I was feeling over-stimulated and needed a day to work at home to block out the world and focus deep on something. I told them what I was feeling and what I needed. Very validating!

Following the crisis period came rediscovery of self. I questioned everything in my career, quit a job and then after a few months off built up confidence again. The 12 months that followed I threw myself into everything. I kind of decided “f#$k it!” and I may as well try many things to assess what am I really good at and direct my energy there. This is where the sudden blogging, presenting at conferences and in general trying many new things came about. This phase was great and so worth it. Redefining self and shifting my career and interests to those strengths or passions was so rewarding.

Wouldn’t it be wonderful if, in the workplace, we could be open about our personal needs? Our neurodiversity, learning disabilities or mental health challenges. I would love to more often say “I am anxious and could use a break”, or “I am having challenges keeping track of all this dialogue, could we whiteboard”. While some things I feel ok to open up about, there is still a long way to go in neurodiversity being understood and accepted in the workplace. Awareness is so critical, and not just that neurodiversity exists, but how is it experienced by people and how can they be supported.

Look at me, I am a highly intelligent, professional woman who appears fairly ‘normal’. To say I am high functioning gives the impression I go through life with minimal issues with my autism. But females with autism are sophisticated maskers. High functioning doesn’t mean less impacted by their traits or challenges. It can be tough and also fluctuate. Yes people say “I never knew you were autistic, you seem normal” but there isn’t much dialogue around what does that mean for a person on the spectrum, how do they experience the world or how can others understand. Some days I can feel highly emotional and try to keep it all down, others I am deep in hyperfocus and just getting s#%t done. I am crap at parties but awesome in a crisis. I know friends with ADHD, OCD or Autism and they struggle hiding their true selves but have so much to offer. It is such a shame.

When my daughter eventually received her autism diagnosis she was excited. She commented on the way to school the following morning “I’m going to tell all my class and friends that I am a yellow circle instead of a blue square” (from a book we had been discussing).
At the end of the day, I do all of this first and foremost for her.
And if I am role modelling in a way that she thinks having autism is something to celebrate, then it’s all worth it.
And if beyond that I can help drive further awareness or help someone else with a diagnosis see strengths, how they can add value to a workplace or increase their self-worth, then that is amazing.

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