Why Neurodiversity needs Self-Advocacy


So, admit it... The title threw you!

Firstly you're asking what on earth Neurodiversity is and secondly, you want to know why it needs to advocate for itself.

The answer to your first question is easy:

Neurodiversity (ND) simply means: A fundamentally different way of thinking caused by neurology.

Someone might have Autism, or SPD, or Bi-Polar, or Depression or any of a myriad of neurological or mental issues that make them different to a Neurotypical person ("Normal"- for want of a better word and I use that term very loosely).  All of those things make a person see, react and negotiate the world very differently, when compared to a Neurotypical (NT) person. An ND brain is hard-wired completely differently to an NT brain.

"But everybody is different!" I hear you cry!  And, yes, they are.  But a collective group of Neurotypical brains, on a basic level, work, think and act in the same way. A collective group of people on the other hand, Autistic people for instance, likewise have brains that work in very similar ways to each other but very differently to an NT's. 


If you take someone with Autism and someone with SPD, although there may be similarities between them, their brains are very different to each other.  The same with Depressive and Bi-Polar brains and so on.

But, all these Neurodiverse brains are in a minority together, in that they are outnumbered by all the Neurotypicals in the world.

That's the waffly bit done.  Now for the key part:

Self-Advocacy...

I'm Autistic and one of the most frustrating things that can happen for me is when someone decides they know better for me, than I do.  When someone speaks over me.  When someone ignores my opinion...

There is a Meme in the Autistic community about 'Autism Moms' (Or 'Autism Mums' where I'm from in the UK).  Now this is not directed at  Mums who are Autistic, or all Mums, just some Mums in particular and you'll know the ones I mean.  Chances are, if you're reading this, you're not one of them. The one's who wear their child's disability like a badge of honour   Who consider themselves some kind of superhero because they have a child with Autism or a Sensory Disorder and seek attention because of it. 

Mario Cirrus, in his excellent blog post "An analogy to explain Autism" describes Autism through the medium of the Harry Potter stories.  This is a beautiful example: 

"His (Harry's) Aunt and Uncle are what we call Autism-Parents. These are the Parents that claim the label autism for themselves, to make them martyrs. 'Look at how difficult we have it, with you in our living room.'"

You meet these overbearing Mums all the time, in public, in Facebook groups.  And there are a lot of them. They post a question about Little Joe's fixation with eating red crayons and what should they do about it?  And then, imagine the audacity should an Autistic person deem to respond with an answer...

It has happened to me, it happens to others, over and over. We are shut down, dismissed, silenced, asked to leave.  Autism Mums seem to forget that their Autistic children turn into Autistic Adults. God forbid a Neurodiverse person might have an opinion on something that affects another Neurodiverse person...

If you see Neurodiversity mentioned on the news in one of its many guises, no doubt some Psychologist or Professor is wheeled out to give their opinion after 40 years of study.  Or the Parents are wheeled out to speak. Those perspectives can be great, and do have their place, but at the end of the day, if you really want to know exactly how much a type of cancer hurts, how much it affects dad-to-day living, do you go to the doctor or the cancer patient's Mother? Or do you go to the cancer patient?

The same rule applies to Neurodiversity.  If you need an opinion on Neurodiversity, why not ask the Neurodiverse person?  It's not rocket science.  If you want to know how my sensory issues with touch affect me, ask me, don't ask my Mum, or my Doctor, or my next door neighbour's cat and certainly, when i speak, listen, don't shut me down, don't silence me, listen.

Neurodiversity is 'hot' in Entertainment Media at the moment.  Alongside a plethora of shows that have blatantly Neurodiverse characters (The Big Bang theory, Bones, House, Dr Who, Sherlock etc) but seem to fear labeling them for some reason, there are currently two Prime Time TV shows currently airing in the US that have an Autistic person as the main character; The Good Doctor and Atypical.  Now firstly, to have open Neurotypical representation on Prime Time Television is awesome, secondly and disappointingly, neither show deemed it worthwhile to hold a discussion with Autistic people about the characters.  "But we got an expert!" Whoop the Producers.  Whoop indeed.  How about next time you consult the actual experts? Or even, shock horror, get a couple of Autistic writers into the mix.  I'm sure there must be a few who can put pen to paper. Off the top of my head... there's like... Me...

If I say I am Autistic, call me Autistic. If i say a puzzle piece is not representative of me, don't argue. If i say an organisation does not do its best for me, believe me.

As a community (and we are a community) Neurodiverse people want and need to be listened to.  

The Star Institute for SPD have listened this week.  They heard the voice of the Neurodiverse Community, the Autistic community especially, listened and changed their plans. Kudos to them.  The irony being that a hashtag intended to separate two areas of Neurodiversity: SPD and Autism, has ended up with a discussion on listening to the Neurodiverse Community as a whole.

Don't make decisions for us, be guided by us.  
Don't speak for us, silence the rest so we can speak for ourselves.  
Don't talk over us, about us, for us, just listen to us. 

Encourage and enable your child, or friend or family member to connect with others whom share their differences, let their voice rise up with them. Help them learn to be proud of who they are, embrace their differences and allow them to embrace them too. Your children need your help to enable them to decide for themselves what they want and how they want it.

We need to be heard.

The Neurodiverse Community is large and growing larger.  It is frustrated and wants to be heard.  Even those who cannot speak can still communicate. 

Please, cup an ear and hear what we have to say.

The Star Institute for SPD quoted me this week, so I'm going to quote me back:

"The Rule of thumb with all neurodiverse communities: speak to us, speak through us, but don't speak for us. We need to be empowered and enabled."

***A shorter and revised version of this article is available on the website and Facebook pages of the STAR Institute for SPD under the title "I'm Autistic: I have a voice"***

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