Autism Interview #114 Connor Ward on Technology, Hospitals, and Autism Advocacy

Connor Ward is a speaker, consultant, and vlogger. His popular YouTube channel features autistic expertise on a variety of topics and promotes autism acceptance and understanding. This week Connor discussed some of his advocacy efforts, how he uses technology to manage anxiety, and his recent experience in the hospital following a car accident.

How did you become aware of your autistic identity?

When I was 15 years old, I was on holiday in Turkey, and I met someone there. We really got on, and I’ve never really felt so much on the same wavelength as someone. I’d always known I was a bit different from everyone else, but I really got on with him. A few days later, my mum said, “Did you know he’s autistic?” This question started making me think, “Maybe that’s what I am.” So I started researching autism, and then, when I was 18, I pursued a diagnosis, and, yeah, it turns out I was autistic! The psychiatrist actually said, “I don’t know how you’ve gone 18 years without this being noticed.”

What prompted you to start your YouTube channel? What do you hope for your audience?

When I got diagnosed, I was actually at an office job, and I had to leave that job because they were unable to make adaptations. I thought getting a diagnosis would be the way to force them to have to make adaptations because I wasn’t coping. But it left me with no choice but to leave, and I didn’t want anyone else to have to go through that. I didn’t think it was right that I had to sacrifice stability just because they were unable to make a few reasonable adjustments. So I thought I would put exactly what I feel online. Hopefully it will end up being a wake-up call to some people as well as providing support to some people who had been in a similar situation.

In an article for the National Autistic Society you mentioned the importance of asking for help and not assuming your problems are insignificant. Do you have any advice for people who experience anxiety with unexpected changes as you described in this article? Can phones or other technology be used to communicate in these situations (like the phone message you typed)? Any other ideas?

I often find that when I am in stressed out situations, one of the first things to go is my ability to articulate myself. I can do it when I need to, but there are moments when there is no articulation and zero words escape, and, if they are going on in my head, I’m definitely not able to produce them out loud.

It’s hard because I don’t really see these scenarios happening until they happen, and I think it’s just luck that I realise it might be helpful to write what I’m thinking down on my phone. I find it a lot easier to do stuff with technology, but that’s my preference. I will use technology in any way I can to try and communicate. Even if I’m in a state where I can’t communicate my thoughts, I can use technology to just message someone. If you just get in touch with someone, they might be able to help you. Of course they’re not in the exact same scenario as you, but they might be able to think of things to help you fix whatever you need help with.

I basically use my phone to try and be my own little electronic carer. There’s many things you can do with your phone. But that’s my eventual goal. I want to be independent, and technology will be what makes up for me needing someone else with me everywhere.

You mentioned you were in a car accident recently. How was it communicated to the hospital that you were autistic? Did you experience any issues due to a lack of awareness of autism or misconceptions about autism?

It happened very quickly. My mum stated it from the beginning, “He’s autistic. He’s autistic. He’s autistic.” When we went into the pre-assessment, my mum was saying, “He’s autistic.” I asked someone at the hospital, “Surely that should be one of the first things that flashes up on your record?” She responded, “Oh no, a lot of autistic people can function normally.” And my response–bear in mind I’m in quite a panicked state, which means I’m extremely blunt–, “Well I don’t know many autistic people that can hold it together in an unfamiliar circumstance such as this.”

Because that’s the truth of it. It’s an unexpected situation, you don’t ever plan to be in an A&E. So, the hospital employee didn’t touch me at all because it wasn’t going to be worth it. But then we had the actual examination, which was just too much because that required a man having to touch me. He had to probe me with his hand, and I didn’t react well. I can’t really remember what happened, which means it didn’t go the best. I know that once I freaked out, he slowed down and told me everything that he was doing and everything that was going on.

What did the hospital staff do that was especially helpful? Do you have any insight into how hospitals might be more accommodating to autistic people?

The actual wait time was meant to be four hours, but they decided that I wasn’t going to be able to do that, right from the pre-assessment, so I only had to wait five minutes from after the pre-assessment to the actual doctor visit. They were confident that they knew what was going on, and that I was suffering from whiplash; therefore, the nurse just went to the doctor and said, “Look, to save the torture of him waiting four hours, [because obviously I was in a strange, stressful situation] let’s just get it done, get him out and home.”

Additionally, because of the extent of my whiplash, I should have been in a neck harness. However, they were straightforward with me and said that it would almost be cruel to put me in the harness because of how confining it would be, so they didn’t do that. Obviously, it probably damaged me a little bit more to decline the harness, but it wasn’t worth the psychological stress.

I don’t go into hospitals often, and I don’t plan on doing it anytime soon, but the fact that they were able to pick up on these needs and accommodate was great especially because, in hospitals, the sensory environment is actually really severe.

Describe some of the most important allies in your life. Who are they and what makes them special to you?

My family and my friends. My family are the ones that keep it all together. They are the ones that make the environment manageable for me. And my friends are the ones in my life who understand that I struggle, but they are also tolerant of that, and they allow me to be myself. This makes me to feel like I don’t stick out as often. Because my friends are all super-adapting people, my differences don’t really need to be a thing. The fact that my friends are very accepting and understanding people makes a real difference.

What mistakes do you see neurotypical autism advocates make?

There’s so many neurotypical advocates who think they know autism, and they assume because they’ve raised an autistic child, they know exactly what it’s like to be autistic. No, you don’t know what it’s like to be autistic, you know what it’s like to raise someone on the spectrum. There’s a massive difference. That’s not saying there’s not a place for parental advocacy because there’s of course other parents who need to be able to relate to that. I also think that autistic people need to hear the parent’s perspective because if we have a two-way conversation, we are ultimately going to create a better outcome–every party is going to gain something.

This is very much why I’ve created a Facebook group with my friend, Holly, called Autism Assemble. We very much want it to be a place where everyone’s viewpoint is appreciated because a lot of the time the conversation on autism can be overshadowed by parents. That tends to be typical autism advocates, most of them are parents. I want to create balance with autism advocacy, but I don’t think there is anything wrong with neuroypical autism advocates; they just need to stop saying they understand what it’s like to be autistic. So as long as they are clear and transparent about that, I can’t see why anyone on the spectrum should be upset. Continue to advocate as a parent because I’m sure that’s doing good work for someone on the spectrum close to you.

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