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Transcript:

Welcome to the Exploring Neurodiversity Podcast for adults who support Neurodivergent children. Whether you’re an allied health professional, medical professional, education professional or a parent of a Neurodivergent child, you are welcome here.

This podcast is recorded on the Aboriginal lands of the Gadigal and Bidjigal people. I acknowledge the traditional owners elders past and present, and I extend my acknowledgement to any Aboriginal first nations people listening in.

I’m Adina from Play. Learn. Chat. I’m an autistic ADHDer, a speech therapist, professional educator speaker, and I also support Neurodivergent Business owners in my other business, neurodivergent Business Coaching and Consulting.

I’m obsessed with creating a world when Neurodivergent people are understood, embraced, supported, and celebrated. A world where we Neurodivergent people can understand ourselves and thrive in a life aligned with our individual strengths, wants and needs.

On the Exploring Neurodiversity Podcast, you’ll get my perspectives and conversations with my Neurodivergent friends. All about how adults can best support Neurodivergent children in our lives.

I bring a Neurodiversity Affirming approach and indeed a human affirming approach to the support that we all provide for Neurodivergent kids in our lives.

Let’s dive in.

One really big, important shift with neurodiversity of having practice compared to let’s say traditional therapies. Is this understanding that we don’t need to or want to have eye contact as a goal for autistic people.

It’s something I talk about often and so many other people do as well. And rather than just kind of nod and accept.

Yes. Okay. Let’s not do eye contact as a goal. It’s also really, really important to understand why, why that is. Why have we stopped? Hopefully? forcing prompting and making eye contact a thing that children or anyone, any autistic person needs to aim towards or focus on.

So I did a little bit of research.

I am bringing you the results of a survey that I recently did opening up to my community and to anyone who they shared it with.

Where I’ve asked for autistic people’s perspectives and experiences of eye contact.

I hope an aim is to bring you diverse perspectives so that you can understand a range of.

Stories experiences and how autistic individuals experience, eye contact In their lives.

I received almost 40 responses with amazing detailed depth understanding. So many surprises in there for me.

Well, I did get, I believe quite a diverse range of perspectives. It’s maybe not diverse enough. And what I mean by that is this survey went out to pretty much my audience.

Whether that was Instagram people who received my emails. Facebook and so on.

In my audience, I have quite a lot of health professionals, some are autistic many, a late diagnosed.

There are quite a lot of females in my audience are quite a lot of Australians in my audience. So I do expect that the sample that you’ve got here is not exactly representative of. All autistic people. It’s representative of some of the autistic people in my community who knew about my questionnaire. That said,

I’m really happy to say this a few responses from teenagers. I’ve got some responses from people of all different ages across the world, but I think I would love to hear even more diverse perspectives, including. You know, from more people who are. Not female late diagnosed professionals like myself.

What I’m saying is if that is you, you’re very welcome to contribute your perspective as well. And if that is not you and you are autistic or you support an artistic person, I would love to hear further more diverse, autistic perspectives about eye contact. And I will continue to share these overtime.

All the perspectives of valid and I’d be especially interested to hear perspectives of nonwhite folks. Non-speaking folks. Autistic folks with intellectual disability. And folks with other co-occurring disabilities.

So please do keep sharing this questionnaire and the resource. And I hope over time, we can continue to get an even deeper body of diverse perspectives to keep sharing with the world.

Now there’s two ways that I’m presenting this, the full responses. Exactly. As everybody shared with me is on my blog and you’ll find it on my website. playlearnchat.com/eye-contact. That’s a Y E as in the eyes on your face. . So that is a resource that you are so welcome to share with other people in your world, world, your boss , parents that you work with with your partner or whoever it is. That you feel needs a bit more background to understand. Y eye contact is unnecessary and perhaps even harmful for autistic people.

If you were one of these people who contributed to the survey, I really, really appreciate your time, your effort, the spoons that you spent, responding and sharing your perspectives.

I invited people to anonymize themselves if they wanted to or share any part of who they are, either the name and initial and nickname, uh, how old they are, where they are, if they wanted to share the Instagram handle.

So each person has been attributed to, they had comment in the way that they chose.

Now I would like to keep this open in future.

So while this is my big first presentation of these insights and perspectives. If you didn’t get a chance to respond and you’re an autistic person, or if you support an autistic person that you think would be interested in contributing their perspective to this data set.

You find the foam on that website? Play land chat.com/i hyphen contact. And I will continue to take responses in, I’m not sure at what point in the future, I will update this data set, but I will revisit this. Maybe it will be in a podcast episode or maybe it will be adding to the voices on the website.

Full of this podcast episode, I’m not able to read out everybody’s comments.

So I really would encourage you to go and visit my website, to see all of the comments that people left.

What I’ve done with this data is to analyze it for themes. So I ended up coming out with 7 key themes that were talked about across all the comments. And then as I picked the key points for each person’s comment that I’m going to share with you.

I figured out which theme was kind of most prevalent in that comment.

Many of the comments span many different themes and you’ll hear that.

Let me first share with you the themes that I came up with, and then I will go into some of the highlights or I don’t want to call them highlights. The whole thing was a highlight.

It was all very, very interesting and. Uh, to make a possible pun eyeopening.

So, the eight themes.

We’re talking about discomfort and pain. Sensory experiences, emotional impacts of eye contact. Masking. Coping and compensation strategies. The impact of relationships, meaning someone having a different experience of eye-contact depending on who they were having the eye contact with. And experiences of therapy and training.

*Kicking off with a theme of discomfort and pain.* My first comment is from Steph age 35 from Victoria Australia. She is at S G R occupational therapy on Instagram. She said. I always found the contact really uncomfortable unless the person was someone very intimate to me. My parents’ daughter, husband seemed to be okay to have fleeting eye contact. But other people I’m not comfortable with.

It feels so painful. If I force it, I don’t anymore. Now I explain openly to people that I’m listening to them and then I’m able to attend to them better when I’m looking elsewhere.

During doodling, fiddling, et cetera.

Kate 33 from Sydney, Australia. She’s at Kate K a I t.tattoo on Instagram. She says eye contact could feel painful and incredibly frustrating. I can be scrolling on my phone as a steam or engaging in my special interests while someone talks to me and they tell me to look at them. Which makes me just feel angry inside.

And in my mind, I’m waiting for it to just be over with. It can feel intrusive and aggressive, almost like a slap in the face. When I’m totally relaxed, like with my kids, I’ll look them in the eye with so much joy. And it can feel overwhelming and make me cry.

S H aged in their fifties in the UK says. I don’t mind, brief eye contact, but really feel uncomfortable. If someone is looking at me for more than say, 10 seconds, max, I’ll make eye contact for a few seconds, max, and then have to look away. I feel really under the spotlight and generally like they have staring into my soul.

And this is really interesting. The soul theme people staring in into my soul has come up in quite a few of the comments that was really interesting to me.

Jess 22 from Kent in the UK. She is at elephant mouse, M O U S . Number three on Instagram. Jess says. eye contact makes me feel very exposed uncomfortable. It feels like someone is staring into my cell and judging me for everything. I am. It’s too intense. The experience is horrible. I don’t feel physical pain, but emotional pain. I’ve told myself to look at people’s noses to avoid that intense, uncomfortable feeling.

But when I look away from people, the relief is so real. My whole body relaxes.

Nicole 33 from Perth, Australia says. eye contact has always been a hard experience for me. It makes me feel super uncomfortable. And I find I’ve always had to force myself to do it and to remind myself, to look away sometimes. And then back. I find if I’m comfortable with someone it’s a lot easier, but I do feel more comfortable when talking to someone and not maintaining eye contact.

Rachel Hazelwood 54 from Cardiff in Wales, says I was born in 1970 and was trained slash forced to endure eye contact.

I hate it. It makes me feel so exposed and vulnerable and is actually painful. I can tolerate it for short bursts, but have sneaky ways to give myself respite. Such as looking at the bridge of a person’s nose or taking long slow blinks. I would love to live in a world where eye contact wasn’t expected.

I love hanging out with other autistic people because we just talk and understand each other’s different use of facial expressions, body language, and gestures.

I absolutely love that, that vision of the future. And my hope is that this can be part of that body of. Work that goes to support the whole world. Understanding that eye contact can be an optional experience.

And not a necessity for communication.

Imogen H age 30 from Canberra Australia says. eye contact makes me feel pain. It feels like itchy. eyeballs held breath, tight chest, and an intense concentration. On an aspect of an interaction that adds nothing to the intention.

From a cultural perspective. I think forced eye contact is rude . What other form of social communication would be tolerated as polite if it caused harm. Forced eye contact makes me feel like someone is trying to dominate me. It feels like a power play even in well-intentioned people. It impacts my communication because I ended up running all sorts of contingency plans in my head, trying to spot what the person actually wants from me.

Instead of being able to use my words and other forms of communication to understand perspectives.

Vicky 39 from Chichester, UK. And I hope I said that, right. Vicky says. I find eye contact, hot and uncomfortable in a lot of situations, but most often in personal one-to-one situations. I also find it hard to think and make eye contact at the same time. So I tend to look up or away when I’m thinking of talking about something.

I make an effort to make eye contact at work when engaging with colleagues or clients.

But I have to think about it as in when to look, how long to look for and when to look away.

Sarah 45 in Jalong. Australia says eye contact feels excruciating for me. Most interactions with neurotypicals require me to maintain eye contact at the expense of my mental entity. And impacts my ability to regulate myself. The longer I’m required to maintain eye contact. The more recovery time I will need afterwards. That is deeply important.

Many of the experiences that people shared and my own as well. Uh, that we can do eye contact, but there is a cost there’s an expense, and it’s not at the expense of the neuro-typical person. It’s at the expense of the autistic individual. The energetic cost that mental health toll can be really hidden. And we need to talk about it.

We need to address it. We need to understand it.

On our next theme of sensory experiences. Here’s what some people shared.

K H aged 48 from Melbourne. Australia said I lip read. Not because I’m deaf, but because it helps me process auditory stimuli. I know that I’m supposed to regularly look in people’s eyes. So I remember to look at regularly. No one taught me this. I just do it.

I am age 38 from Australia, says I struggled to hear and know what the other person is saying.

When I focus on good eye contact.

I will say there were quite a lot of comments that were similar to that , in a lot of other people’s.

Contributions as well.

Anonymous age 63 from Queensland, Australia says. I’m hearing impaired also. So I look like I’m giving eye contact, but I’m actually reading lips, eye contact is welcome and okay. For me when I feel understood, if not, I am not giving that much of me to accommodate the other person.

I think what’s interesting is you’ll hear a theme across some of the comments as well. Of. People taking control, autistic folks getting more conscious about the impact of eye contact on themselves. And. Self-advocating. Making choices about how they do eye contact or how they tell other people about what eye contact is for them or how they will or won’t use it.

Which is very important, but at the same time, If there wasn’t an issue to start with, we wouldn’t have to self-advocate, but you know, there’s always case for self advocacy. So that’s interesting to hear these perspectives too.

Michael aged 49 from the gold coast. He’s at the deep dive AAU on Instagram. And he’s got a podcast, the deep dive, which is very much worth the lesson.

He’s excellent on the microphone. And so Michael submitted a video response. I’m going to play it for you and you can hear Michael’s perspective.

Around eye contact.

Okay, well, how does my eye contact affect me? Well, I may look a bit weird with eye contact, looking in different directions, looking at when I’m trying to think about things, and trying to put together thoughts into words. I may look down to the ground sometimes when I’m trying to socialise, or my neck may look at a funny position when I talk.

If it is a subject I’m really engaged about, I try and look around the face area, but sometimes I cannot tell bored or not. So that’s how I show eye contact.

Another person shared. When I make direct eye contact with someone, it feels like I’m saying everything about them all at once.

Well, then my facial expressions, what they are thinking and feeling and turning it into a hyper empathic way. It’s a lot to process, especially if I’m trying to focus on what we’re both saying.

I’m late self identified clinician and it blew my mind to realize that not everyone is constantly aware of what they are doing with their eye contact in the same way that I’ve always been.

On the theme of emotional impact of eye contact. Debbie from Australia shared. I’ve often wondered where the lack of eye contact has been. The reason why sometimes I was never considered for jobs, but there was never any feedback. So I can’t be sure. I’m often aware of my lack of eye contact and social situations.

And I think it gets worse in some situations than others.

I’ve often wondered whether it’s related to how regulated my nervous system is my emotional state slash relational safety. I’ve often felt very self-conscious about it.

A K aged 7 from Queensland. Australia has shared.

In response to my question of how does eye contact make you feel in different situations?

And casual, happy contexts, eye contact is fine. And part of sensory exploration. In contexts of criticism, review psychological pressure, eye contact, presses, trauma buttons to flee freeze, or bite back.

Continued trauma precious, such as bullying leads to psychosocial safety collapse, dopamine loss, and potential incapacity to talk, operate, et cetera. I E a deep trauma outcome.

And now the person shared. Making eye contact, especially in emotionally intense interactions, feels like everything sensitive and private about myself is written on my eyeballs and the longer I make eye contact, the more secrets they can steal from me.

Despite this, I mostly always make eye contact because I feel a sense of safety in masking. But noticeably different feels unsafe. So either way I’m feeling unsafe in an interaction. It’s a trap.

Tash shared. Lack of eye contact does not bother me. It bothers other people. My mom used to feel really offended when I didn’t give her eye contact.

Another person shared. After a number of comments saying I have an intense gaze. It has made me paranoid about where to look and how much to make. eye contacted itself though is not my issue. It’s what goes along with it. When you aren’t doing it in a neuro-typical way.

On the topic of masking.

Ash age 38 from Australia shared. Being taught as a child that it’s necessary or polite means that I will often try to make eye contact with people, despite it feeling deeply uncomfortable for me. When I have to focus on making the appropriate level of eye contact, not too intense, not too little, or they’ll think you’re shifty. I find it much harder to use my words and communicate effectively.

Jessica O 30 from lake Macquarie, Australia. She’s at. aussie autism family on Instagram. She shares. I always thought I was okay with eye contact until I realized I’ve been masking all these years and would put strategies in place to use eye contact in a neuro-typical way. I’m always thinking about how much eye contact I give . When someone is talking to me, I will look into their eyes. Then after a while, I will realize that I’m actually staring at them for too long. I do this to better understand what they’re saying. I prefer sitting side by side to people while I was talking. This allows me to look at what’s going on in front of me while talking . And not have to stare right into someone’s eyes.

SP aged 53 from the UK shared. My autism assessment said that I made normal in inverted commas. Eye contact. But I think that I’ve spent years learning how to do it. I wasn’t diagnosed until I was 52. When I start to think about it, I get confused and uncomfortable and have to break eye contact. I was told when I was younger, that I stayed at people, but not in the eyes.

JP age 26 from Sydney.

Australia said eye contact is interesting. I recently learned that the way I show eye contact is a form of masking. I feel really comfortable providing eye contact when I start my sentences. And then as I’m finishing the sentence, if I have a lot to say, I’ll often look to the side or down at the materials that I’m referring to. As a speech pathologist, it was taught that eye contact is important for communication. But I realized that it was stressful for me and my client to try and force it.

once I leaned into not forcing it, I realized that social interactions are much smoother.

Nathaniel aged 18, turning 19 from Malanie in Queensland Australia says.

I usually try to make eye contact, especially in formal circumstances because it was what I was taught in therapy is attained before I was diagnosed. If I feel like I’m masking, well, eye contact isn’t as bad, but masking can be really hard. And interpersonal conversation. I sometimes use eye contact and sometimes don’t. But I always feel really guilty when I don’t use it because I feel rude for ignoring someone and not meeting their eyes. It’s a lot better when I’m with other autistic people, but I still feel a little guilt. I do make more eye contact with people who I’m romantically interested in, because I think being vulnerable is part of romantic affection. And thus making eye contact is me removing the barrier of all the anxiety and just letting myself be.

Plus sometimes people’s eyes are really pretty.

I actually love all of that. There’s so many great insights, but this idea is something I relate to as well. Sometimes the sensory experience of looking into someone’s eyes do actually look at the. eye itself. It’s really fascinating.

And I can get very absorbed in looking at the colors and the details in somebody’s eyeball without actually following the conversation.

S M S from Queensland, Australia, aged 41 shared, forcing myself to meet the other person’s eyes along with other appropriate in inverted commas. Signs of attention is distracting for me and often means I miss what they’re saying. I can’t keep my train of thought when I’m focused on maintaining eye contact.

Sarah age 27 from Brisbane, Australia shared.

If I’m having a general conversation with someone where I feel I have to mask to neuro-typical numbs, I will try my best to give as much eye contact as possible without staring into their soul.

Half of my mind is focused on whether I’m blinking too much, or if I should look away for a moment to make sure I’m not making them uncomfortable with too much eye contact.

It also impacts my ability to retrieve words, provide well-structured sentences and retrieve memories accurately.

I also find it extremely hard to describe something I’m talking about. If I can’t look up in a way to a blank space, for example, a roof will, or the sky to try to visualize what I’m thinking about.

As a child, I used to get a lot of prompts to focus on people when they were talking. With my family lovingly referring to my inattentive moments as oh, butterfly moments. And correctly. So sometimes me looking away was an unintentional distraction of thoughts and disengagement with the conversation. However, sometimes looking away would help me visualize or process what others were telling me.

So it was difficult as a child to not get upset when I was listening. The teachers or family members would assume that. I wasn’t, because I had looked away.

On the topic of coping and compensation strategies. Now you’ve already heard quite a few.

Peppered throughout the other comments. And here I’ll share a few more that specifically talk about these strategies.

Kate M from Sydney, Australia shared.

The way I experienced it is that. It is mainly distracting from the conversation. And I have a lot of thoughts about eye contact. The analogy I use at work is like, if someone had a little flashlight next to their eyes and expected you to make eye contact with them, it blink a lot. I want to look away and think, wow, that light is so bright. And wow.

Can it just not. And also get a small headache and not pay much attention to the actual conversation. That’s exactly what it’s like. I tried using my phone torch to show someone this exact thing once, but they didn’t like it. Maybe that’s because it was uncomfortable. Maybe that was the point. I’m not sure yet if it’s a good teaching tool. Kate.

I think that is fascinating. What an interesting idea to actually turn your experience into.

Something quite tangible that you might be able to show somebody that somebody else might end up perceiving as a version of your experience.

Cool experiment. Thank you for sharing that. Anyway, Kate goes on.

Now that I know all this I’ve stopped going to restaurants or cafes where you sit right across from the other person. I really disliked that. So usually I’ll go for a walk with friends or husband, et cetera. If we want to catch up, talk with a third object that we both look at. I sit in a corner booth at a cafe and always try to be 90 degrees, et cetera.

It doesn’t come up that much as a distressing thing, but I’ve tailored my life around having comfy interactions.

Kim age 31 from Australia. She’s at creativity and beyond OT on Instagram. Kim has shared. I regularly avoid eye contact in regular situations. I a supermarket caches and we’ll make the perceived wrong eye contact with your friends. For example, they had braces and I’d always be looking at them and not their face. I regularly look away to speak and stare in multiple directions as it helps keep my focus.

S P H 30 plus in Melbourne, Australia shares. As a healthcare worker, I’m aware that some patients and family members prefer, eye contact to show that I care and I’m paying attention.

I use tricks to look at the sides of their eyes or the middle of their eyes.

People with eye makeup is easy as I look at their eyebrows, lids and lashes, I think because I’m in this situation, I am the professional in the power dynamic. It’s a lot easier to do and I can make eye contact as part of my routine spiel to build rapport and connection.

Sometimes though, if I need to concentrate on the situation eye contact is too hard to manage. Eye contact is exhausting and uses a lot of focus. It feels uncomfortable. Like I’m staring at something. I shouldn’t see. It’s the same feeling slash reaction that you get when you first glance at a disabled person or someone different to your race. And in brackets as a disabled brown person, I know the feeling well. And. I know to look away quickly.

Hannah age 33 from Sydney, Australia. She is at HannastaciaX on Instagram.

I tend to enjoy one on one walks in nature with people. So I’m walking parallel with them, which means no, or very little eye contact while also regulating on a walk and connecting with nature. I’ll often have a little voice in my head stating have I been holding eye contact too long? Wait, I need to make eye contact.

I definitely relate to that over thinking. How much is the correct amount of eye contact? How is it supposed to look.

And anonymous coming to from the USA shared growing up, I was supposed to make eye contact you to the social norm. As an adult. I’ve chosen not to. Well, it might be awkward for the other person at first, getting accustomed to the lack of eye contact. It’s freeing for me. It helps strengthen the relationship because I can be authentic and open up more.

Plus I can focus on what they’re saying better, and it reduces the likelihood of being overstimulated.

On the impact of relationships.

Winston aged 16 from Sydney, Australia.

At Winston junior DeSilva, D E Z I L V a on Instagram.

Winston shares.

I, as a matter of fact, actually love making eye contact with people I really trust or want to be intimate with. It’s a similar rule to touch. I’m not really a touchy person except with close friends and people I trust, I don’t force it, but I don’t mind or want it.

Sam aged 32 from Virginia in the USA.

In my work with autistic kids, I found that some will have moments of holding very intense eye contact with me while being pretty close to my face. Often these seem to be my kids with limited spoken communication. And in those moments, there is an incredible sense of trust. And like a whole conversation has had.

ES aged 14 from the USA shares.

For me, eye contact is an intimate action. I do like to make eye contact with a few people in my life that I’m really close to, but it’s uncomfortable to make an eye contact with strangers, acquaintances. Most people I interact with on a daily basis.

Mel aged 34 from Melbourne Australia. She’s at Neurodivergent dot reflections on Instagram. Mel shares.

The only person I’m more comfortable with more extended eye contact with is my husband probably due to those feelings around intensity and intimacy. Even then it can feel like a lot. I’ve got to have the energy for it. Which feels kind of funny, to be honest, needing entity, to do something that so many people take for granted.

And our final theme is experiences of therapy and training.

Ana aged 34 from Australia shared this incredible reflection. A story from childhood. At one time when I was a child, a teacher, one to, to explain to me how to do a task and came over to talk to me. She got offended. I was ignoring her.

Because I was avoiding eye contact. I’m forced me to hold eye contact with her while she was speaking. I felt humiliated, overwhelmed, and terrified. And to this day, currently I’m in my thirties. I remember how bad it was and how awful I felt. and wonder what did she possibly get from forcing an eight year old girl to look her in the eye? What sort of adult has such a fragile sense of self-respect that it can be threatened by an eight year old’s lack of eye contact.

I still feel confused and hurt when I think about it, because for me it was so intensely confronting and also so unnecessary. It feels so unfair that I get a traumatic memory for the rest of my life because she couldn’t deal with 10 seconds without eye contact.

That interaction is why I learnt to mask, so I would never have to deal with that again.

K shares. I’ve not had any therapy about this, but did attend an annoying social skills class at uni that was really designed to build more understanding of Australian social norms for international students. They made us make eye contact, which was annoying because I know how to do that.

Not because it’s uncomfortable. I do notice that I really hate eye contact and a bit my gaze when I’m distressed or dysregulated. Outside of moments of distress. I seek eye contact to make sure I can read my conversational partners and feel connected with them.

It’s a really important observation, that eye contact norms are very, very different across cultures. And across sub cultures.

So while Kay was asked to participate in a social skills class to fit in more with Australian social norms, I’m not sure who wrote the book on Australian social norms.

It does make me wonder whether we Australians are on the higher end of expectations for eye contact.

There were certainly cultures where eye contact is viewed in different ways, including being an important marker of power and respect and, there’s so many different interpretations, so it’s not a universal given.

Anyway, I digress. Let’s go into our last comment. So anonymous 63 from Australia shared I was in my thirties in a class on small business management. One of the tasks was to sit opposite a person and speak to them on a subject whilst looking them in the eye. I couldn’t do it. It was extremely uncomfortable and I started to cry. I don’t think I realized to what extent I had avoided looking at people.

There is so many more important, essential insights. So I really, really hope that you will go to check out the full array of comments that people left. And again, if there’s something. That you as an autistic person or an autistic person in your life would like to contribute.

On this topic, please head over to playlearnchat.com/eye-contact. And you can join in the conversation there.

I hope that you will share this podcast episode and that blog post

as resources to support other people in your life. To understand just some of the differing perspectives and experiences that autistic folks have around eye contact.

Thank you so much for sharing this space and time with me. Thank you for being open to learning and unlearning and to listening to the perspectives and experiences of Neurodivergent folks.

If you found this episode helpful, please share it with a friend, share a screenshot on Instagram, pop a five star rating and a review in your favorite app. And join me on Instagram and Facebook.

I’m @play.Learn.chat. Have a spectacular day!