Autism Interview #123: Evaleen Whelton on Connecting with the Autistic Community

Evaleen Whelton is a public speaker and trainer advocating for positive change for autistic people in Ireland. As an advocate Evaleen concentrates her efforts in raising appreciation for Autistic thinking, delivering educational workshops, writing articles, and organizing conferences relating to autism (including Ireland’s only all-Autistic conference). Evaleen has trained professional groups, schools, and businesses on Neurodiversity and Inclusion. This week she discussed the benefits of connecting with the Autistic community.

How did you become aware of your Autistic identity?

I was diagnosed six years ago at 37. I guess I always had that feeling of being “other.” My diagnosis was a year after my little girl was born and looking back now I can see that it was the pressures of maintaining the mask in this new role as a mum that created so much anxiety at that time.

What was it like to be diagnosed as an adult? Wonderful! A huge relief to know that this is who I am, that I could embrace myself and grow to love and accept myself in new ways. It was a huge freedom.

How did you first become involved in the theater work you do today?

I studied speech and drama from a young age, since I was about 4 or 5. I loved it and continued it into adulthood where I completed my Teaching Diplomas with London College. I went on to study Commerce in college, but always wanted to teach drama. It was actually while I was studying commerce that I came up with the idea for my business Konfident Kidz, which focuses on using drama as a tool to build confidence not just in class or on stage, but in everyday life.

Tell me about your AUsome event-Irelands’s first ever all-Autistic conference. What role did you play in the planning and execution of this event? Do you plan on repeating it? What ways are you thinking about improving it?

I played all the roles! I’m a bit of a one-woman show, so I did everything from booking venues and speakers, hiring sound equipment, planning, exhibitor recruitment, marketing and advertising, compiling mailing lists… you name it, I did it. I also mc’d the event on the day and stood in for one speaker who couldn’t make it, and did a short presentation on Autistic Rights. Last year was our first one, this year will be our second one, and I’m already in the planning stages for 3 and 4! Improvements we’ve made this time include Irish Sign language interpreters, non-gendered toilets, and an overflow room where people can watch the live feed but can move about and don’t have to stay quiet like they do in the main room. We had a pretty inclusive environment last year, but I think there’s always ways to improve in that area.

I really try to have a diverse range of presenters also and am currently recruiting AAC users for our next one as well as other minorities within our community. It’s really important to me that I include all voices in my advocacy.

Has Autism training always been a part of your Konfident Kidz offerings or is it something that grew out of a need you saw?

I designed a course to teach kids “social skills” or non-autistic culture and language right after I was diagnosed. I quickly had people asking me to run classes all over Ireland, but that wasn’t going to be feasible, so I then designed a course which I deliver all over Ireland to parents and professionals so they can learn the skills to teach the Autistic person in their lives. I’ve since developed other courses and offer onsite training to professional groups, businesses, and schools. I did start using my business as a tool to reach people very early on after I realised the lack of representation we have in Autism Training and events. I organised two Walk in Red Events and a number of talks featuring Autistic voices only months after I realised I was Autistic myself.

The Autism Training & advocacy has grown so much that I am now running AUsome Ireland alongside Konfident Kidz, and I’m currently working on making our training available online on our soon to go live AUsome Ireland website.

What mistakes do you see neurotypical Autism advocates make?

An interesting question and one I could spend a long time on, but to summarise, I think the biggest issue is that they are not understanding what it is to be Autistic from our perspective.

I find I spend a good bit of my time “unteaching” parents and professionals who have previously received training from a non-autistic person. The problem is that most of what is available to them is based on myths and the non-autistic perception of what the Autistic person is doing.

To give a few examples: Stimming and the important role it plays in our communication and learning is not understood, it’s never even mentioned. This idea that Stimming is just for coping or regulating is only a tiny part of the story.

Also, much of what they think is “sensory seeking” is not! A lot of the time we’re stimming and taking in the information around us, having a conversation with the world which they don’t understand, through no fault of their own but because we interact with the world differently.

When I train I can provide the “why” behind the list of behaviours or traits, and I think that’s the big difference. Also much advocacy is still placing the difficulties within the Autistic person rather than looking at how the environment, particularly the social environment, and how that impacts us and our development in negative ways.

What have been some contributing factors to helping you develop a positive Autistic identity?

One factor : The Autistic Community: Meeting others like me, connecting with like-minded people and disregarding much of the nonsense that is out there about us, and building the confidence to redefine what Autistic actually means and to be myself in this world without a protective mask.

Can you comment on Autism acceptance in your community? Where has progress been made? Where does society most need to improve?

In Ireland we have much work to do. While we have made advances in public awareness, some of that is still based on false ideas about us, and much is based on helping the poor Autistic people rather than true Acceptance and Equality. Autistic kids are not being taught in ways Autistic kids learn best, and ABA is still very prevalent and often disguised and rebranded as Positive Behaviour Support and other friendly sounding names. 

There are also lots of developments here on creating “autism friendly” spaces, but we need to do much more on that.

Adults face barriers to mental healthcare, healthcare, employment, and education.

I think while there’s more awareness that Autistic People don’t like loud noises and bright lights, most are unaware of the real issues that face our community such as anxiety, depression, PTSD, cPTSD and that we are living in oppression.

I find there is a lot of “pretend” Acceptance even among parents of Autistic kids. I see it a lot on social media where they say they celebrate Neurodiversity, but yet also say things like “autism won’t beat me.” That’s not Acceptance, that is something else entirely.