Neurodiversity: a typical view

By Annette Thompson (Abilities Collective @ Curtin, Secretary)

What is Neurodiversity?

Neurodiversity is an important-sounding word that just means a brain works differently. People use it to categorize a group of invisible diagnoses, including but not limited to:

Autism Spectrum Disorder
Attention Deficit Hyperactivity Disorder
Obsessive Compulsive Disorder
Developmental Delay Disorder
Developmental Language Disorder
General Anxiety Disorder
Borderline Personality Disorder
Chronic Depression

It’s a nice, neat word that allows us to talk about not being ‘typical’ without being offensive. Yet, getting a diagnosis for neurodiversity can be a minefield.  It can be a long and complex, and sometimes fruitless, process. As the mother of neurodiverse children, it’s the most challenging bureaucracy I’ve ever encountered.

A neurodiverse person’s condition is often ‘hidden’, meaning it isn’t immediately obvious in the way some other conditions can be. This means individuals, carers and families need to prove to agencies and organizations, for the purposes of funding and supports, that a diagnosis hasn’t ‘gone away’ and still applies. We complete the same forms and present the same evidence – typically numerous expensive specialists’ reports – every year. This is a sad reflection on society. We so often need to see something tangible to be comfortable with accommodations or support.

Lived experience and stigma

I have spent enough time in the neurodiverse world to claim lived experience. I am a parent to three out of four biological children who are neurodiverse. Diversity is typical in my family and I wouldn’t have it any other way. They are perfect.

Yet, when I mention my youngest daughter’s recent Autism diagnosis, for example, the reaction is almost always sympathy or pity. Occasionally, people are defensive – perhaps they see themselves in a neurodiverse behavior I mention, and presume I have somehow labelled them as well. I have even been asked if there is any known cure for my daughter’s autism.

I don’t understand these reactions. I know these people, and I know they mean well. Yet, I wonder why it is “a shame”? Where does this stigma around neurodiversity come from? What can we do about it? How can we change it?

Navigating a complex world

People with a physical or neurological difference often face daily hurdles to meet goals that are foreign to neurotypicals. They will inevitably spend more time explaining the ‘what’s’ and ‘whys’ and ‘please accepts’ than a typical person will ever have to. I’ve never had to discuss my physiology to explain why I am just as good as everyone else. But I’ve lost count of the number of times I’ve had these conversations to justify supporting a person with a neurodivergent condition.

My middle son lives in an independent home, with necessary supports, but people still defer to me instead of talking to him directly. He is fluent in two languages other than English, and is teaching himself a third, yet people think it is acceptable to give him orders instead of talking to him and supporting him to make an adult choice. He recently resigned from a job and, instead of meeting with him, the employer phoned me to ask if I was going to permit it. He is 22 years old.

Last year, my third son was prescribed Irlen’s lenses for the visual disturbances that accompany his dyslexia. He was so proud when he got them; he’d waited for months. He happily declared that “the words have stopped moving” but he removed his glasses before he entered his classroom. He worried his classmates wouldn’t understand. Why is that ok?

Neurodiversity is not a bad, sad or shameful thing. Rather, it’s an everyday part of life that we, who are not neurodiverse, need to learn to understand better. The neurodiverse do not need to explain themselves to us. We need to try harder to meet people where they are, and to accept them for the wonderful, unique and interesting people they are. As renowned autism advocated Temple Grandin said in her famous TED talk – The world needs all kinds of minds. And it’s all the better for them.   

About Anni

Anni started at Curtin in 2007 and works within Curtin Information Management and Archives, predominantly supporting Privacy compliance and Freedom of Information.  Anni uses She/Her pronouns and is married with 4 biological and 3 stepchildren.  3 of Anni’s children have a neurodivergent diagnosis and Anni has spent the past 24 years advocating for and negotiating the disability space in education, employment and NDIS and allied health in order to support her family.  Anni is one of the founding members of the Abilities Collective.

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