Let’s talk about autism: diversity & inclusion

 

“Autism is something that people associate with cisgender white males. Moving forward, we must ensure that research is representative of the diversity of the autism community” – Desi Jones, PhD Student at The University of Texas

“Trying to put autistic people into boxes is one of the problems we have both in and out of the medical field” - Sarai Pahla, doctor and medical translator

“We need to think strategically about how autism research makes a difference” - James Cusack, CEO of Autistica

“Representation matters – we all bring different experiences to the table” – Mala Thapar, charity worker and mother to her autistic son

“We need precise tools to pick up anxiety in autistic individuals who cannot verbally explain if they are feeling anxious” - Caroline Richards, Senior Lecturer at the University of Birmingham

“No one else has the experience other than autistic people and it is their voice that needs to guide the way” – Matt Bond, event chair and head of the Birmingham Psychology Autism Research Team Consultancy Committee

“Autism researchers need to step down from their ivory tower and start disseminating their work and engaging with the communities that they do research for” - Desi Jones, a PhD Student at The University of Texas

 

The Joys and Challenges of Being Autistic

We asked a variety of autistic individuals about the joys and challenges of being autistic. On this page, you can see what some of them said!

 

What People Are Saying

 

JOY: “I love the fact that I do not have what I refer to as ‘a need to conform’. This doesn’t mean that I don’t want to be a part of groups and feel a sense of belonging – but it means that I have the confidence (the absence of fear, really) to express my views, my preferences AND to enjoy learning of and understanding those of others. ‘Same-ness’ bores me. I have always thought: ‘I already know what I think…I’m interested in hearing what everyone ELSE thinks, likes and feels.’ I don’t need to be agreed with (in terms of other people thinking and liking the same things as me in order to feel secure.”

CHALLENGE: “I was diagnosed as an adult, and I think one of the main problems was the length of time to get diagnosed. I had to wait over two years to get an appointment… I think a lot of resources and support are directed towards children and the parents of children who are diagnosed. When you’re an adult, there isn’t a lot of resources.”

JOY: “One of the things that I experience from being autistic is the ability to ideate patterns of the future. So, when someone asks me a question, one of the reasons it takes me a while to respond, sometimes I am searching through hundreds of different answers, and where those answers might lead to based on my prior experiences and expectations. So even though it might seem like I’m not responding very quickly, I’m almost like playing chess with the conversation and seeing where it might go.”

JOY: “I love that I have a ‘Double A-dar’. This helps me enormously in my profession. I have both autism and ADHD. Being able to sense when students and clients have either of these conditions enables me to adapt naturally to their needs, ask questions and make suggestions and recommendations that fit and work well, instinctively. It often takes professionals years to diagnose a child or adult (if at all) when a fellow autistic / ADHD person could ‘diagnose’ them in minutes!”

CHALLENGE: “Feeling that disconnect. That slight awkwardness that always makes me want to leave – especially when there are more than two of us! Things get too hard to read and interpret at that point!”

CHALLENGE: “Accessing healthcare as an autistic person can be a bit challenging. A lot of the time, it’s perfectly fine going to the hospital… if I explain things, people are very accommodating. Accessing mental health care can be a lot more of a challenge. I became quite depressed a while ago, but it took a long time to access healthcare and then when I explained that I was autistic, they were unsure of whether they would be able to help me. And then subsequently what they were able to offer me was large group sessions which doesn’t really suit me and I probably actually found it detrimental.”

JOY: “I love how brilliantly I get on with other people who have autism and/or ADHD – whether or not they have a diagnosis or awareness of the fact! The connection is completely free from the usual awkwardness I experience when relating to non-autistic people, with whom I’m always having to work that little bit harder as I delve into dictionaries to translate their body language and read between the lines.”

CHALLENGE: “What annoys me is this incessant quest that the world seems to have in terms of categorizing us as ‘normal’ or ‘not normal’ – with whichever politically correct or sensitive terminology they care to use. Diversity is diversity. Neurodiversity is NOT another word for ‘not normal’ or ‘weird’.”

JOY: “There is real joy and fun in my life. I’m not like a robot. Me and my wife have a lot of fun, we have a great sense of humour. I have a little baby girl and she’s wonderful, it’s lovely playing with her. I take things quite literally often which can be quite fun in the house… My life is full of joy! I love reading, I’m very interested in things, I pick up a lot of information about different hobbies and things like that and it’s really fun and it also helps me with work as well- my ability to focus in on things…Taking autism away from me would take away who I am.”

CHALLENGE: “One of the challenges I have found throughout my life is that I feel lonely a lot of the time. I’ve always likened being autistic to like being a parent- you can’t describe to someone who isn’t a parent what it’s like to be a parent. But also, your experience of being a parent is very different to every other parent. I think from my experiences of autism, that is a similar experience. So I feel quite lonely lots of time.”