Sometimes in order for us to know where we are going, we need to take a look back to where we came from.
When I was in my late teens, about 25 years ago, I worked for a summer camp that had developed a week-long sleep over camp experience for adults who had cognitive and physical disabilities. It was called “Special Needs Week” at camp. At that point in history, the staff and I were really proud of this newfound term “special needs” to label people who had developmental/physical disabilities/differences.
Why was it so progressive at that time? My generation was on an important mission to obliterate the “R” word from our vocabularies as the medical term “mentally retarded” had been co-opted into a damaging and degrading slur.
Good for us. The word “retarded” is an old medical diagnosis that we don’t need anymore in our current development of medical diagnosis for people who have brain/body differences. We also know the damage that a word can cause when it becomes delegated to a slur in society – it had to go.
But, about 6 or 7 years ago – I paused and asked a really important question: “Don’t we all have some measure of special needs?” What was it about people with developmental disabilities that made it extra “special”. As my career developed and I began engaging and connecting with adults who have differences – and was then diagnosed as a neurodivergent adult myself – I knew a shift was in order.
I was also noticing how the words I had to use were creating a box of shame and limitation to put people with disabilities, “special needs”, syndromes, disorders and differences inside. Hide them away behind diagnosis and closed doors, just like the legacy of institutionalization.
So, I went looking for new words, new ideas, new ways of thinking, new stories and new definitions. I started asking a different question. Instead of asking about the lack, I started asking about what was beautiful and accurate. Some of the ideas and definitions I had to co-create with the people I was supporting in the reality that a lot of things in the system, especially language, didn’t really want to change.
Here’s my definition of Neurodiversity:
A neurodiversity is a brain(neuro) difference (diversity). Brain differences show up in lots of ways: at birth, from an acquired source, from a trauma, or maybe a genetic reason. Neurodiversity impacts the way humans experience the world from a perceptual and physical sense.
Like so many things about humans, neurodiversity is on a spectrum; neurodiversities are totally unique to the person’s brain/nervous system and have both barriers and gifts.
Here’s a quote from the Cleveland Clinic to further support my explanation:
“Neurodiversity” is a word used to explain the unique ways people’s brains work. While everyone’s brain develops similarly, no two brains function just alike. Being neurodivergent means having a brain that works differently from the average or “neurotypical” person. (https://my.clevelandclinic.org/health/symptoms)
When we can see the word “neurodiverse” as umbrella that covers a variety of effects and manifestations of a brain that processes information differently: Autism spectrum, acquired brain injury, developmental difference or things like dementia, psychological trauma or concussions. That’s just a few things that can cause a brain difference in a human – the list is pretty long. The truth of the matter is: ANY of us could be or could become neurodiverse so it is worth it to understand these concepts for yourself, your family, your co-workers, your teams and the community at large.
This awareness is meant for all of us.
The word neurodiverse opens up a field that asks for a lot of curiosity and fewer assumptions about intelligence, capability, capacity or what a person can or can’t do. The term neurodiversity allows space and more importantly grace around how our brains function – and what we need to observe, plan and do as a professional community to support those amongst us with barriers and constantly celebrate all of our triumphs.
“Neurodiversity” is a word in time. As we learn more and more from self advocates, we may need to change our words again, just like I did from the time I worked at “Special Needs Camp” to now where I can proudly call not only myself but many fabulous humans I interact with: neurodiverse.
It’s important to know I don’t speak or write for other people who have neurodiversities. It remains most important that we ask people with differences how we should talk about those differences. Some people are really fine to be referred to as “disabled”. Others prefer with “brain difference”. And still others may chose the name of their diagnosis (“I have ADHD”), and people on the Autism Spectrum sometimes choose to call themselves “autistic”. All of this is ok if we are having open and clear conversations about it. We trust people to know how they want to be spoken about.
Rule of thumb: if you’re not sure, politely ask. Sometimes we need to be vulnerable and admit we don’t know to move the conversation forward. Be polite, be humble and ask. Something like, “I have heard you refer to yourself (or your child, sibling, friend) as “autistic”, I’m not always sure how to use my language around neurodiversity, could you educate me from your perspective?”
I hope that when you next encounter a human with something that appears to be a “little different” you can ask yourself if a neurodiversity may be present and see how that changes your communication, perception, judgement and treatment of that person.
I hope that you can get to know some people with neurodiversities (or more deeply understand the people you already know) and see the incredibly beautiful ways that brains can work – and when we start putting all that brain power together it matters not if it is neurotypical or neurodiverse – we can change workplaces and the world.