'Autism isn’t an illness, you don’t outgrow it, and there's no need for a cure'

Four years ago, I decided to share that I'm on the autism spectrum and have Asperger's syndrome for World Autism Awareness Week.

I was 28 the first time I spoke about this publicly, because I felt a huge need to mask this.

I truly believed that sharing this about myself would affect my prospects, that people would treat me differently, advantageously or disadvantageously, and I didn’t want to be wheeled out as the autistic person, or be coddled.

As a result, I masked and hid this part of me in every role. Even the aspects that are highly challenging to me, at some personal cost over the years.

Furthermore, I was concerned about having to deal with another bias as a result of another label. After all, I can’t hide I’m Black or a woman, but I could try and hide my autism.

Why did I speak up?

In an episode of Dr Shini Somara’s ‘Innervation’ podcast on speaking out, she said that we must all speak up when it will achieve the following:

1. To help others,
2. To inspire others,
3. To connect with others, and
4. To do good and be of service to others.

Therefore, I hoped that raising awareness of autism would demonstrate the following:

• Autism doesn’t stop you from reaching your potential and being a productive member of society.
• To acknowledge that my journey could’ve being easier if society was more tolerant and accepting, and advocated for adaptations that are more inclusive of autistic people.
• Challenge the common stereotype of autism and make it clear that autism is a spectrum.
• Challenge everyone to reflect on how they include themselves and others.

What is autism?

The National Autistic Society defines autism as a ‘lifelong developmental disability which affects how people communicate and interact with the world’.

It says that ‘1 in 100’ people are on the autism spectrum, and that’s around 700,000 autistic adults and children in the UK.

Some autistic people have average or above-average intelligence. Autism is sometimes coupled with other learning disabilities, such as ADHD and dyslexia.

My autism diagnosis came later in life – the story of many autistic women. It can be a very difficult journey often filled with wrong diagnoses due to masking and gender bias.

My biggest challenge has been in understanding why people behave as they do, and their motivations. As a result, I use a lot of my bandwidth to unscramble the world around me, and try to assess danger posed by my blind spots. This often means I’m working harder.

However, my difference has resulted in consistency and hyper focus as a positive, and additional stress, missing some social cues, and anxiety as the negative.

Debunking myths about autism

Let’s debunk some myths: autism isn’t an illness, you don’t outgrow it, and there is no need for a cure.

It simply means that your brain works differently from a neurotypical brain. Neurotypical means not displaying autistic or neurologically atypical patterns of thought or behaviour.

 The National Autistic Society lists the most common traits for those on the spectrum as:

• Having a hyper focus in an area of interest;
• Difficulty communicating and interacting with other people;
• Finding it hard to understand how other people think or feel;
• Finding things like bright lights or loud noises overwhelming, stressful or uncomfortable;
• Getting anxious or upset about unfamiliar situations and social events;
• Taking longer to understand information; and
• Enjoying repetitive behaviours and routines.

It’s important to remember that autism is a spectrum and affects everyone differently, with everyone having varying strengths and weaknesses, and therefore needing varying levels of support.

As the saying goes, if you’ve met one autistic person, you’ve met one autistic person.

Professor Simon Baron-Cohen, director of the Autism Research Centre in Cambridge, explains: “We know that autism is not just a disability. It’s also a difference, and sometimes those differences include strengths or even talents. And I think that side of autism has got neglected.”

He compares the way in which autism is viewed today with how left-handedness once was, and says he hopes it will eventually be regarded as another variation.

My personal experience

Often as autistic people, as children we're forced to stop expressing needs that are inconvenient for others. "Stop crying about the tag in your clothes, stop fussing over the loud noises."

Over time, this can start to distance you from your own feelings, leaving you unable to express your emotions or even acknowledge your physical pain.

This doesn’t seem to end in childhood. Since disclosing my autism, I’ve been faced with people not believing me when I share my diagnosis because I’m high masking.

This often leaves me in a difficult position. I'm high masking because of growing up I learned that the way I was naturally was unacceptable, so that taught me to hide who I am.

However, this perception of needing low support means I have to work hard to meet all my own needs.

I often think the idea of having ‘low needs’ is simply a way of invalidating our need for support. It doesn’t consider all it takes for an autistic person to navigate life, to mask at work in order to keep our jobs, pay our bills and maintain independence.

The many copings mechanism we take on along the way can damage our mental health.

The link between autism and civil engineering

It isn’t new for civil engineers to tackle social issues, from Bazalgette to Bryn Noble, a fellow ICE President’s Future Leader alumnus who talked about the role of civil engineers in tackling mental and social health issues by designing out loneliness.

Autism awareness is an opportunity for us to take this social responsibility further and design the built environment with neurodiversity in mind, and to be an industry that practises real inclusion.

Maybe by accepting yourself inside, you can be yourself on the outside, and extend that grace to others, showing them the kindness you are now giving yourself. This in part will deal with loneliness.

After all, we can’t connect when we don’t show ourselves authentically.