Celebrating Neurodiversity: A Parent’s Perspective

By Anna Noakes Schulze – Lead UX/CX Strategist, Team Wakabayashi

WiCX community member Anna shared the following piece in celebration of World Autism Awareness month in April.

Following the recent Inspiring Women in CX podcast episode featuring Adi Tobias on why her neurodivergence is a CX superpower, we are reproducing Anna’s blog here to share more perspectives of neurodiversity.

Celebrating Neurodiversity

Did you know that every April is World Autism Awareness month? It’s a topic that’s close to my heart as the mother of either one or two boys on the autism spectrum – one who was actually diagnosed and one who doesn’t want to know.

I became the mother of an autistic child 20 years ago, but I didn’t actually know for sure until 14 tumultuous years later.

An Invisible Disability

Autism is often described as an invisible disability. Many people on the milder end of the autism spectrum are either diagnosed late or not at all. Sometimes the husband or wife of an autistic person becomes the first to connect the dots.

In our case, it was our son’s teachers who kept raising the alert. Teachers are not always trained to recognise developmental disorders, especially when the signs are subtle. If it’s ADHD (not so subtle), teachers are quick to spot the signs. If it’s a learning disability or something unusual, then the mystery unravels a lot more slowly. We ended up caught between our teachers who insisted something was off and psychologists who equally insisted that our son was fine. Many times, I was told that I was just a nervous mother.

‘Blame the Parents’

In many cultures, “blame the parents” is the go-to strategy for anything about a child that doesn’t seem normal. That’s not just people in general but mental health professionals as well – the ones you think should know better. In the end, my son’s diagnosis of Asperger Syndrome (a mild form of autism) came after eight weeks of in-patient assessment in a youth psychological facility. Eight weeks of psychologists blaming, gaslighting and undermining our confidence while restricting access to our child, who was asking to come home every day. I still tear up just thinking about it.

Fighting for your child’s wellbeing is both heartbreaking and exhausting. There are glimmers of hope that come when you are so battle-weary, you’re about to collapse. You can hear the cavalry coming and you think, hooray we’re saved! But it’s the Visigoths who come slashing and burning and now you’ve got to deal with them, too.

Incredibly, our younger son was in the same psychological facility at the same time getting his ADHD diagnosis confirmed. Somehow, they missed the signs of autism despite having all the time in the world and plenty of clues from his brother. By the time our boys were finally released we were clear about never going back there again. Spoiler alert, we never went back, and we’re all a lot happier now.

Battling Misconceptions

There are so many misperceptions about autism and the signs can present in very different ways. When I think of my sweet, kind, funny and thoughtful older son it’s hard to accept the common belief that autistic people aren’t capable of empathy. Sure, it isn’t always easy for him to read facial expressions. It might take him a heartbeat longer to interpret what he sees. But he does care, and he does demonstrate empathy because he makes it a priority. How many neurotypicals talk the talk about empathy but don’t walk the walk? Just ask a child or an autistic person if you want to hear something true…

Autistic people often have to make a special effort to learn the social skills that neurotypicals take for granted. Mental checklist: eye contact, smile, say hello, shake hands, etc. They’re not good at small talk or anything else that seems trivial to them. They don’t play along with other peoples’ expectations because they have no use for role-playing. They won’t even lie and say you look great if you don’t that day. No wonder people find them a bit odd!

The Beauty and Power of Neurodiversity

And yet, there is something so pure about their honesty, integrity and deep loyalty. I especially love the creativity and ingenuity that comes from their ability to perceive and think differently. I’ve seen first-hand the tremendous capacity to absorb information and learn every last detail of their favourite topics. I love how kindly they accept difference in others while remaining true to themselves. All this and more makes me question why we even call autistic people disabled. Certainly, they are differently-abled but we need people who think, feel and act differently from ourselves.

This April, I’m not just raising awareness of autism; I’m celebrating the awesome beauty and power of neurodiversity.

Get involved

If you’d like to get in touch regarding sponsorship, partnership or membership, please send us a message here. We'd love to hear from you! 

Bio

For over 20 years, Anna has been dedicated to building better digital experiences that foster connections between businesses and their customers. She is a digital and platform business consultant, WiCX founding member, online communities advisor, and co-author of the bestselling Customer Experience 3, with a chapter on platform CX.

Anna is a keynote speaker on customer experience in digital ecosystems and the essential role of customer-centricity for business strategy. Her mission is to help business leaders realise the potential of platforms to connect and create value in the 21st-century digital economy.

Originally from Canada, Anna is the mother of two boys with special needs whom she raised in five different countries. Her TEDx talk is called, “Living Abroad Teaches Us the Power of Connections”.