The second we finished watching the incredible Ted Talk: ‘Why everything you know about autism is wrong,’ we immediately set about getting in touch with Dr Jac den Houting.
If ever there was a voice we wanted to hear more from, for our Autism Acceptance campaign, it was this one.
So we’re thrilled to be able to share with you our conversation on Equality, Equity and all things Acceptance.
Our writer, Lindsay Bruce, spoke to Jac.
L: thanks so much for taking the time to chat with us. Shall we get the formalities out of the way first?
J: Sure, my name is Dr Jac den Houting, but “Jac” is fine! I’m non-binary and use “they/them” pronouns.
L: Where are you from in the world Jac?
J: Australia! At the moment I live in Sydney and work at Macquarie University.
L: Jac can you tell us a bit about your journey with autism and diagnosis?
J: I’ve had some awareness of autism since I was a teenager, because one of my younger brothers was diagnosed as Autistic at that time.
I read quite a bit of information about autism as a young teenager, partly to help me understand my brother, but partly because I recognized Autistic traits in myself and wanted to know more. That was in the late ‘90s, though, when understanding of autism looked very different to what we have now. So although I recognized a lot of Autistic traits in myself, the “Rainman” stereotype of autism still very much dominated understanding of what it meant to be Autistic, and I never seriously entertained the idea that I might actually be Autistic myself.
It wasn’t until I was in my mid-20s that I came across information online about some of the alternative ways that autism can present, including things like “masking” Autistic traits.
As I read more about these newer understandings of autism, I realized that the descriptions fit me perfectly. I was able to pretty quickly arrange an appointment for a diagnostic assessment with a Clinical Psychologist who specialised in autism.
For me, it felt important to have an official diagnosis, and I was lucky to be able to access it – for a lot of people, that isn’t the case.
L: So from that initial point of diagnosis, what have been the biggest changes to your views and worldview?
J: Finding out that I’m Autistic is easily the most important thing that’s happened to me in my life. It’s changed my entire perception of myself.
I’d gone through life up to that point always feeling like I was missing something, like there was some kind of “inside joke” that everyone else in the world understood and I didn’t.
I just never quite felt like I belonged or fit in.
Being identified as Autistic was, firstly, a huge relief because it explained those feelings for me. It helped me to realize that I wasn’t a weird or failed neurotypical person, I was a perfectly normal Autistic person.
More broadly, since finding out I’m Autistic and getting involved in autism advocacy, I’ve become very passionate about social justice. I’ve learned a lot about the disability rights movement, and the struggles faced by other minority and marginalised groups.
I’ve come to understand that our current society is designed for a very specific type of person, and that, unfortunately, life is generally going to be tougher for anyone who doesn’t fit that narrow ideal.
L: How have those emerging views shaped your professionalism do you think? And can you quantify the impact it could have on your life, and the lives of others?
J: I spend a lot of time now advocating for changes in the systems and structures that underpin our society, to make the world a more accessible and inclusive place for people who, like me, live outside the norm.
I think for many families, the most valuable take-away is that idea of changing the environment to fit the person, rather than changing the person to fit the environment. For such a long time, autism intervention has been about changing or “fixing” Autistic people to make us fit into society better. But really, what those interventions do is teach us that there’s something wrong with us, that it’s not okay to be who we are – and that can be terrible for our self-esteem and mental health.
In my opinion, it’s much more effective to look at the environments an Autistic person interacts with, and do as much as possible to change them to make them accessible and inclusive.
That includes changing physical environments like lights, but also – and more importantly – it includes making changes to the person’s social and emotional environment. That might mean, for example, changing the way you interact with an Autistic person; actively accepting and respecting Autistic people and Autistic ways of being; and providing whatever support an Autistic person might need to live the life they want to live.
L: We’ve done a lot of work around the importance of identity first language – but we are sometimes criticised for focusing so much on ‘word order’. What are your thoughts on this?
J: Language is actually a very complicated thing! I think most people probably aren’t aware of the power of language, or the history that surrounds the issue of person-first and identity-first language.
To sum it up very briefly, person-first language (i.e., “person with autism”) was introduced back around the ‘70s, to emphasise the fact that disabled people are people first, and that their condition or disability is just one part of their identity.
For a lot of Autistic people, though, autism is a key part of our identity. We think in Autistic ways, we perceive and experience the world in Autistic ways, we interact with other people in Autistic ways. If you took away our autism, we wouldn’t be ourselves any more. If you think about the way that we describe other key elements of a person’s identity, we usually turn the language the other way around – we describe someone as being “a mother”, “an Australian”, or “a gay person”, not a “person with gayness”.
Importantly, when we perceive something as being a negative trait, we often use person-first language to try to separate the person from that trait. We don’t do that with traits that we consider positive, or neutral.
Something that’s really interesting in the scientific research around autism is that most of the literature talks about autistic children using person-first language, “children with autism”. But when they talk about non-autistic children, they use identity-first language, “typically developing children”; not “children with typical development”.
Language is important because the words we use to describe something can both express and influence how we think and feel about that thing. For a lot of Autistic people, using the word “Autistic” is powerful. It’s about being proud of who we are. And although the majority of professionals and service providers use “person with autism”, research shows that the majority of Autistic people prefer identity-first language. If you’re not sure how to describe an Autistic person, though, the easiest and best thing to do is just to ask that person what their preference is!
L: In your Ted Talk you talk about social inclusion – what does social inclusion look like for Society?
J: Creating a completely inclusive society is a big goal. Some people argue that it’s impossible to create a society that accommodates every individual person’s needs, and that may be true. But even so, there’s a lot we could be doing to work towards greater inclusion and accessibility for as many people as possible.
For me, an important part of inclusion is understanding the difference between equality and equity. We often hear people talking about equality as the goal that we should aim for – that “everyone should be treated equally” – but that overlooks the fact that we all need different things in order to be successful. There’s a cartoon that depicts this really clearly. It shows a monkey, an elephant, a penguin, a goldfish, and a few other animals, and the text says “For a fair selection, everyone has to take the same exam: Please climb that tree”.
Rather than an equal society, I believe we should aim for a society that is equitable. In an equitable society, we don’t treat everyone the same. Instead, we give everyone what they need in order to succeed. How much help each person needs is going to depend on how well the social environment already fits their needs. If you think about the help we might give to the animals in the tree-climbing test, it would look quite different for each animal. But now imagine we were giving the animals a swimming test instead – by changing the context, we change who needs help, and what help they need.
To achieve equity, we can give each individual person the specific help and support that they need to succeed. As well as that, and even better, we can work to design a society that is physically, socially, and emotionally accessible and inclusive for as many different people as possible, with as many different needs as possible.
We already do this in a lot of ways, it doesn’t have to be expensive or difficult, and it often works out to benefit many more people than it’s designed for. A prime example of this is kerb-cuts – you know the sections of pavements where the kerb is “cut” out to form a ramp down to the road, instead of a standard gutter? You usually see them at traffic lights and other intersections. Those ramps exist because they’re mandated in disability access legislation. But if you’ve ever needed to cross a road while pushing a pram, or with luggage, or while you’re riding a bike, you’ll know that they can be useful for just about everyone.
L: Jac you’ve seen some of the changes we’ve made – and our drive to move from passive awareness to proactive acceptance – what’s your thoughts on an ‘autism services’ charity / provider making this shift?
J: I think it’s really encouraging that more and more autism service providers are making the shift from awareness to acceptance campaigns. Historically a lot of the “awareness” work has been led by parents and professionals, so it’s been driven by the experiences and priorities that those people have, more than the needs and priorities of Autistic people.
The idea of “autism acceptance” has largely been led by Autistic people, so the goals of an acceptance campaign are more relevant to what we actually need, and it’s great to see the broader autism community getting on board with that.
Sometimes people argue that we still need “awareness” campaigns because a lot of people still don’t understand anything about autism. An acceptance campaign doesn’t mean that we stop educating people about autism, though.
People who read your campaign materials are still going to be learning about autism, it’s just that the messages they’re learning have been reframed.
They’re learning about our strengths as well as our challenges and, of course, about how society contributes to those challenges. Importantly, by pushing for acceptance we’re not just asking people to learn, we’re also asking them to take the next step and act on what they’re learning. It’s those actions that will make the difference in Autistic people’s lives.
Sometimes the parents and carers of Autistic people who have high or complex support needs struggle with the idea of “autism acceptance”. They might find it difficult to understand how or why they can “accept” autism when their loved one faces so many barriers, which I can completely understand. A lot of people are scared that adopting an acceptance approach or a neurodiversity approach means we stop giving people the help that they need – I’m not sure where that idea came from, but it’s a very common misconception.
For me, autism acceptance is about recognising that every Autistic person is a valuable human being, who deserves to be treated with dignity and respect, and who deserves to live their life to the fullest.
Living a full and happy life is going to look different for every Autistic person, but many of us are going to need support to achieve that. We should be able to access those supports, whether that means a once-a-month psychologist appointment or a full-time carer.
Part of accepting diversity is accepting that different people have different needs, and doing our best to meet all those different needs. Acceptance isn’t about ignoring challenges, or pretending that differences don’t exist. It’s about seeing someone in all their messy, unique humanity, and saying “I choose you”.
L: I love that. I see you – I choose you.
Thank you so much Jac. Incredible.