Autism: Do you have to be autistic to understand autism?

A friend of mine answered a Tweet yesterday telling someone that I am an ‘autism expert’, the response to this from a certain lady was  ‘if she’s not autistic she’s not an autism expert’.

I speak about how we need people with differently wired brains in my TED talk

Now, there may be an element of truth in this statement, but, not being on the spectrum but having a great understanding of the way autistic brains work has huge benefits as well. And why do I understand autism so well?  I’ve been around autism for my entire life!  My mother and both of my brothers were/are on the spectrum (one of my brothers and my mother are deceased), most of my children are on the spectrum and a lot of people I meet, and indeed, a lot of my closest friends are also on the spectrum. Five years ago I also set up, and still run, an autism support group where I obviously meet numerous people on the spectrum.

There is power in understanding the way the autistic brain works and how the different wiring affects people, but also understanding that the poor souls not on the spectrum sometimes struggle to understand the straightforward way the autistic brain tends to work.  I can interpret the differences in behaviour between those on the spectrum and those not, I can see where the communication struggles are occurring and suggest ways to overcome the challenges.  This is especially useful when I’m helping a couple where one is on the spectrum and the other isn’t.

I can often help to unravel the communication challenges

Because I understand how both types of brain work I recognise when communication is less effective due to the differences, and I’ve had plenty of practice with my own children who are all incredibly different within their autism.  They have challenges with totally different things and I understand what is causing those challenges, I’ve ‘studied’ my children in order to be able to help them as best I can and this has led to a great level of understanding.

No, I’m not autistic, but my time spent with autistic people has given me a huge amount of insight into how they think and feel, I can empathise with them, I can help them and I can use this to make people’s lives better.  On the other side of the coin I can also help people who are on the spectrum understand why non-autists seem to make communication so complicated and how to better understand what they are trying to say.  I see myself as being a kind of mediator.

And, of course, I can never experience the way the autistic brain actually works but maybe my perspective is the next best thing?  Better than nothing maybe, and, we need ALL types of brain wiring to make our world a better place to live.  Vive la difference!

3 thoughts on “Autism: Do you have to be autistic to understand autism?

  1. This was such a refreshing read.

    While I’m an autistic person who believes “autistic people are the true autism experts”, I don’t believe this means that those without autism cannot be knowledgeable on the subject either. Like you said, it’s important that we have all sorts of voices involved in the community, because while you may not be able to fully understand autistic brains, we cannot completely understand neurotypical brains, either. Therefore, having both sides of knowledge and using them to come towards a collective understanding of the condition and the challenges that face us is surely a good thing, is it not?

    I feel like the phrase “autistic people are the true autism experts” is a phrase originally created to fight against those who view autism as a negative thing. People like professionals trying to cure autism, those who create harmful therapies like ABA to change our innate behaviour, or those people who think autism is the absolute worst thing on earth and use their social media to explain how much of a burden autistic people are on society.

    From what I’ve seen of you and your family, through the documentary, your blog, your social media, and media appearances, I’d say you’re not like that in the slightest. If anything, you’re an ally for autistic people, trying to advocate for better treatment of autism–for your children, and autistic people on the spectrum! If anything, we need MORE people like you, not less. Yes, autistic voices are extremely important and should always be the first port of call, the truth is, we aren’t going to receive 100% awareness using this method alone because people don’t always want to listen to autistic people.

    Sorry for writing such a long response! This could almost be a blog post in itself. Oops!

    Rebekah Gillian |

    1. Thank you for your response Rebekah and I’m glad that you broadly agree with me. I believe that without autistic people the world would be a very sad, boring place! We absolutely need people with all kinds of different brain wiring, it makes life far more interesting. I think life would be incredibly boring without you guys….you rock! Also, I don’t believe we would be as advanced as we are without you. I’ll keep challenging conventional thinking as long as I have breath in my body! xx

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