Autistic Moms Chatting: Moving Forward with Awareness and Action

Autistic Moms Chatting

This marks the second edition of Autistic Moms Chatting from Affect Autism. This episode features two autistic mothers of autistic sons and autistic and disability advocates living Canada. Autistic Moms Chatting is an addition to the usual podcast episodes.

You can also subscribe on your preferred podcast app by searching, “We chose play from Affect Autism”

More Resources

• Kelly Bron Johnson on Instagram
• Kelly Bron Johnson on LinkedIn
• Completely Inclusive
• Completely Inclusive on Instagram
• Disabled Women’s Network of Canada (DAWN)
• Autistics 4 Autistics Canada
• Books by Anne Borden King
• Noncompliant – The Podcast 

Show Transcript

Daria: Welcome back listeners I am really excited about this episode. I have two fellow Canadian autistic moms and we have three of us all have autistic sons. So this episode, I have Kelly Bron Johnson in Montreal, who is an autistic and hard of hearing self-advocate, a founder of Completely Inclusive, a social enterprise consultancy devoted to inclusion and accessibility in the workplace. Kelly has also written a book called, “How to Parent Like an Autistic” which is the most perfect book that I have read. Kelly, it was like super–just to the point and simple, and I highly recommend it, and I also have Anne Borden King, who is the co-founder of autistics for autistics, Canada’s autistic self advocacy organization. The group was founded in 2017 and it’s an international affiliate of the Autistic Self Advocacy Network (ASAN), she’s the host of Noncompliant – A Neurodiversity Podcast and the author of 3 books, including the forthcoming book, Informed Decisions, a guide for parents of autistic children to be published by Jessica Kinsley press in early 2026. She’s also written numerous articles in publications such as for The New York Times and others. And I love your–on the A for A website, the Autism Pseudoscience Physicians guide, so if there are any medical professionals listening, I will point people to that in the blog post with links. So as I mentioned, we are all autistic. We all have autistic sons. Kelly is the mother of 2 children aged 9 and 15 and Anne is the mother of a 15-year-old, and I am the mother of a 16-year-old, so welcome to both of you.

Anne and Kelly: Thanks.

Daria: I thought that we could begin with… I want to get into the professional work that you guys do, because it’s so important. And that’s what I want to highlight here for our listeners. Maybe just starting off just a little bit about your journey with autism, did it begin with your child’s diagnosis?

Kelly: Yeah, in my place it did. Um, I uh, I am very lucky. I think to have grown up in a very progressive and inclusive environment. My elementary school was doing what was called at the time “reversed inclusion.” They’re one of the only schools that was trying this out. So we had what was called a satellite school, so we had the Montreal oral school for the deaf students, a miniature version of their school within our school, and we had the Mackay Center here in Montreal also. So we had kids with physical disabilities and we had deaf kids and that meant that I got to be included with everybody. And so, we got to play with each other, we had lots of exposures, so there was…it was fantastic growing up. And in that sense, those are the people that I felt a lot of affinity towards. They didn’t judge me for being weird, and it was how I made some of my earliest friendships. And so I didn’t suspect that there was anything. I mean. Yes, I was told I was weird. There were many ways that I was obviously not fitting in-and in some cases bullied-but because I kind of had a bit of that protective environment, I kind of feel that I was still able to forge some friendships and have some understanding, and it wasn’t until I really got out into the working world that it started to really affect me. And the university as well, was extremely overwhelming for me, so I went through all of my 20s, pretty much struggling with severe anxiety and depression. And I’m trying to go for therapy and counselling, that was trying to address this anxiety and depression that wasn’t actually caused by–not a 100% anyway–because I do suffer from persistent depressive disorder anyway, but it wasn’t all the persistent depressive disorder’s fault.

So when my son finally got diagnosed, it was again another fantastic experience. The psychologist said, you know, normally when you know the kid gets diagnosed usually one of the parents that might also… kind of put it out there. And I looked at my husband I said, “Well, I must be you! Can’t be me!” And then, uh, I mean, it is still possible that it could partially be him. We have a lot of autism on his side of the family, all the cousins, almost and all that. I finally picked up a book by an autistic woman, a named Rudy Simone, who was writing about what autistic women want their partners to know. And I started reading that book, and I got through like the first 3 pages, and I said, oh my gosh, this is me. She’s describing me, and it was the first time I’d heard a description of autism based on femine traits. And so I went and got tested, so I went a little bit after my son was diagnosed. I went and got myself tested and got confirmation.

Daria: Interesting, you know, it’s funny because my diagnosis was only a year ago at CAMH in Toronto, and I’m still learning so much. And just some of the examples you gave I was like, oh, yeah. I forgot about that. I went through that, too. You know, my first university experience being on my own and everything and being totally overwhelmed. And I had forgotten all about that. So, another thing that add to my list of “yep, this diagnosis is correct!” Anne, how about you?

Anne: Yeah, so I mean, when I was a kid, I was diagnosed with like things like problems. I saw an occupational therapist. I had, you know, all the sensory issues, but like a lot of autistic women, the autism diagnosis didn’t come along with that. And then it’s really similar to what you experienced Kelly that I took my son to be diagnosed first of all, I resisted diagnosing him, even though people were telling me to take him in because he was just acting like normal to me, like by my standards and stuff. But we did take him to get diagnosed when he was about just before he turned 3. And he was diagnosed as autistic, and then the same thing, after when we were getting the diagnosis, she looks at me, and she said, you know, a parent who has autism, you shouldn’t feel bad like you made him autistic. You shouldn’t feel like he was copying you, and that’s why he’s autistic. Autism just happens, and I was like, “What was that all about?” I didn’t understand what she was talking about. And it took me awhile for it to click in. And I realized, well, that’s why I know how to play with him in a way that he likes. And that’s why I understand so many of the things that he’s experiencing. I watched as he’s gone through 15 years of his life. So many of the same challenges that I had faced, and I think the book that really clued me into that–how to parent him differently than like the norm of the time, like, 12 years ago–would have been Barry Prizant’s book, Uniquely Human. And that really also was helpful for me to realize, like we’re not from another planet, we just have to figure that figure out some of our communication and sensory issues. And then, of course, coming across the concept of the double empathy problem was also really helpful.

Daria: Well, thank you so much, both, for sharing that. I know that both of you are very active advocates and in the work that you do. And I love that you’re both Canadian, because so many of my guests are not Canadian, not that I don’t love them too, but it’s nice to have people that are, you know, in my area in my country. So I’d love to start with, let’s go back to you, Anne, and talk about how Autistics for Autistics started.

Anne: And different from your experience that experience that I grew up in this, like small mill town in the United States, and it was really like the Special Ed was in like a different building behind the school, right? And it was a punitive approach, I initially thought that we would have totally evolved as a society since then, but in the Toronto District School Board, we really have not at all. And so I realized, like, wow, like we, somebody has to be doing more advocacy than is being done, like all I’d saw happening for autism advocacy in the public eye anyway, were these giant rallies for ABA at Queen’s Park and I was like, well, that’s not what I’m looking for, so how do we build an organization and work with other organizations that already exist to kind of really advocate for alternatives and new approaches to inclusion. And so myself and a couple of other people we were in Facebook group called Autistics in Canada. And we said, why don’t we try to become a chapter of the Autistic Self Advocacy Network? And then we did, we realized that you come into being as an organization no one kind of taps you with a magic wand, like you just make things. You make a website, and you put out a blog, and you have a social media and all of a sudden, you’re kind of real and people start asking you questions, and then you can get your foot in the door where I couldn’t as an individual as a parent, get my foot in the door to talk about inclusion, I was able to once we had like an organization to do. So we’ve been around now, for what would that be 7 years, and we’re still working away at it.

Daria: Yeah, and I remembering you guys right from the start. And just being so grateful that you existed because I was so overwhelmed in my parenting experience. And doing the blog and you know, focusing so much on having play-based alternatives to ABA that I didn’t have any extra spoons, so to speak, to do advocacy work, and a lot of people kept asking me about that. And I would refer them to the Autistics 4 Autistics website, and just all of this stuff that you do. Thank you for that work. Kelly, I know that your organization works to get employers to understand and include autistics in the workplace, but tell us about how that all started in your journey.

Kelly: Uh, well, I thank my son again for that one. So at the time, the concept for that came out of the fact that I had just been to Parliament Hill, that I have my actual House of Commons. 2017, November 30th 2017, I went to the House of Commons in Ottawa, with Autism Canada to protest the DTC, not protest the DTC itself, but the changes or to the way that it was being implemented,

Daria: What’s the DTC?

Kelly: DTC is the Disability Tax Credit and so one of the issues with it out of the many, is that many people were having to prove and reprove their disability over and over and over again, and so we teamed up with Diabetes Canada and MS Canada as well. Because people with diabetes, let’s say they had, what they need insulin to live, were being asked to prove that they still actually do need the insulin to survive day-by-day by the government in Canada and people would, say, who are amputees, had to prove that their leg hadn’t magically grown back in 5 years. And so it’s a horribly onerous process to the point that 65% of Canadians don’t even bother trying to apply for it, even though they’re eligible, and this is a problem that persists still today, so even though my son was diagnosed with autism, which is a lifelong diagnosis, the government is asking me to reprove that he’s still going to be autistic when he’s 18. So his DTC will then expire, and so we were at Parliament Hill, trying to make some change, hopefully, you know, force, the government to start making better decisions about how they’re discriminating against us, and so I came back from the Ottawa, that day, and I was tucking my son in and he was 8 at the time, and I told him that I was at Ottawa, and when I was doing there and that I was trying to make things easier so that when he turned 18, he wouldn’t have to, hopefully go through this crap. And he said You’ve got 10 years. What’s the big deal? And I said, oh Okay, yeah, you’re right, you can do a lot 10 years if I start now. I mean, why the heck not? And so, yeah, it was the gumption of an 8-year-old, just saying, like, yeah, you know, dude, go do it. So I did! In 2018, I registered my business. I was still working full-time at the time, and I kind of transitioned that way with the idea that I was trying to make the path easier for others, because there’s no point in taking a so-called diverse person, flopping them into a toxic workplace and expecting them to succeed. That’s not how it works. We need to completely change society, first of all. We need to change workplace cultures, and my hope is that by changing people within a business that, you know, you don’t just like take off your hat and leave all the knowledge that you’ve learnt work, you’re going to go home into communities, and I want people to have a better understanding when if they’ve learnt something from me at work during a training and they go on the bus and now they see somebody on the bus who’s rocking and humming and they understand okay, there’s no harm in this person. This person has a right to be here like anybody else and we don’t need to stare. We don’t need to accost them, we don’t need to call the police. We just need to take our bus and go on with our day like normal people…like kind and respectful people. And so that was my hope that the changing workplaces, I would eventually change all society and communities. And I still have another three years. So that’s what I’m going to do.

Daria: And let’s see how far we can go. Yeah, it’s really incredible to me how COVID changed so much, and at the same time didn’t change much. I know that I am so grateful that I have a job where I can work from home, because I think about how challenged I would be trying to manage everything ready in the morning, getting my son out to school, getting to work on time getting back after, you know, all of those kinds of things, and I’ve, you know, I’ve recently learned about the Autistic Culture Podcast, which you may or may not be familiar with, but hearing them talk about autistic culture really helps me understand like, oh, yes, like this is so normal to me, and maybe growing up in a family where your family stuff was normal, you didn’t realize that you were different than others, although I always did feel different when I went to other people’s houses, but they talk about that whole idea of the monotropism and the flow and all of that where we have these periods of and I mean, I have them all the time, I could sit for 18 hours straight and just work on my website and forget to go to the bathroom and forget to eat, you know, just this intense focus and intense productivity. But then having this autistic inertia, where, you know, you just have to lay down, and you can’t get out of bed till 1 PM or whatever, and just needing to come down from that. And then having this intense period of productivity and the 9 to 5 isn’t cut out for that. So that’s just another example of what you said like there’s certainly all of the sensory stuff like fluorescent lights in the workplace and the cubicles with all the noise that people experience like just so many different things. So I definitely will put the link to Kelly’s website. She does trainings and workplaces and stuff, and all of this stuff we can talk more about that, too. And what I’d like to ask you both about now is like I just mentioned since COVID so much has changed yet so much has not changed. What have you seen in the landscape since 2017, when it sounds like that’s when you both started these professional endeavours, because, you know, one thing that I saw was this explosion of neurodiversity-affirming clinics, podcasts, social media, tons of self advocates online describing their experiences, and that wasn’t around before when my kid was born until Neurotribes by Steve Silberman, nobody ever heard of the word neurodiversity and many people still have never heard of that word, but it is definitely taken off. So you know I’m sort of more in tune with a lot of things that are going in the States because I work for ICDL and they’re in the States. Tell us, what have you noticed that’s changed since 2017 or not changed?

Anne: There’s a lot that I wish has changed that hasn’t changed enough, but change within any institutions always change very slowly. And one of the institutions that changes really, really slowly is schools. I think workplace is actually my perception and Kelly, you can jump in, but I feel like workplaces are really open to neurodiversity trainings. They’re really interested in learning about neurodiversity and inclusion and being proactive. I feel like maybe there’s been a bit more progress there than there has been at schools. But I’m not sure. I also go out on a limb here and say there also could be a little bit of in society, what I would call, maybe neurodiversity fatigue. That is, we spend a lot of energy and time talking about what neurodiversity is. But there aren’t enough programmes like Kelly’s and some other programmes. There aren’t enough programmes like that. That aren’t just talking about what it’s like to be narratives, neurodiversity, what it is, but really talking about inclusion and you know what we can do. So we have a bit a lot of awareness without as much action to go along with it. And I think that’s kind of where I see what’s happening now, being very exciting in terms of neurodiversity, self-advocates starting to make connections more with parent and family groups and with employers with healthcare institutions, because I think we need that kind of partnership beyond just making people aware, to actually be able to give people tools. So we’ve done the critique of what’s wrong. Now we’re really in the stage of really giving people tools, and then hopefully, we’ll be seeing a lot more progress.

Daria: How about you, Kelly?

Kelly: So I’m a little bit more pessimistic or perhaps realistic in terms of what is actually occurring. I have seen an absolute uptick and tank since George Flloyd so since Black Lives Matter kind of exploded and the last 2 years, particularly, have been extremely awful and going backwards. I think it should be precise like it should be a bit more precise about what I actually do because I include because I have an interceptional approach because I include DI is a bad word right?Being woke is bad and so that has affected business and has affected my own business, but it has affected other business perceptions and where they’re putting their money. It was always a struggle in the first place. So for me, it’s not just about neurodiversity, it’s about neurodiversity, but with the whole intersection, because I’ve non-binary, I’m black, I’m proud of. I don’t hide these things. I think that I have some light skin privilege that helps me be a bit more palpable, but when it comes to dealing with politics, so when it comes to dealing with businesses, I am still not the people that they want to hear from, and I’m still a topic that is still very uncomfortable for most people to deal with.

Daria: Yeah, and I hear a lot about that on different podcasts too. There’s a lot of good discussions happening in the US. A lot of black women who are talking about these kinds of issues on different podcasts, and who have different approaches. I’ve heard from, you know, psychologists, business people and that, and so the awareness is out there, but I think the divide that’s happening with politics and we don’t need to get into all the politics, but there really is this idea of like… it seems like half the people totally being behind it thinking yes, this is the right thing to do, and then half the people being like, oh, I’m so sick of hearing about this, I don’t care, and just dismissing everything. I don’t know if that’s, you know, really what’s happening, because if you think about it, if we talk about these general principles of understanding people and accepting, like most people would agree with that. But it’s something about, no, you don’t think so?

Kelly: No. That hasn’t been my experience.

Daria: Yeah. Yeah.

Anne: Well, you can’t just educate people.

Kelly: Because it’s really not just 50%. It’s really, it’s, it’s not even just dismissal, it’s the outright: they do not want to address it, they do not want to change. They want to keep the colonizer, systemic, capitalist society. That is where the comfort is. So it’s a very clear not wanting to change.

Daria: And I’m so glad you’re on the podcast, because, you know, I don’t experience a lot of stuff because I don’t go out of my house. And so it’s important that anybody listening hears all of this experience, because I can’t ever know what it’s like for people of different race, even though I can appreciate it. And I have friends who tell me about it, and that, but to have that feeling of just not even–not just being welcome, but to actually feel, like, dismissed and rejected like you described is just horrendous, and it’s not the messages that we hear from our Canadian government, yet, it’s happening.

Kelly: We hear it, we hear it with Québéc talking about Legeault who said that there was no racial problems in Québéc, oh, right, but at the same time, you know, banning the wearing of the hijab. So I mean, it’s being addressed, it’s very clear that immigrants are not wanted. And that if you’re not “Québécois de souche,” which I am, because I am part Québécois, it doesn’t matter, it doesn’t matter. My skin is still the wrong colour. I don’t speak properly. It doesn’t matter.

Daria: And these kinds of things will never solve in a 40-minute podcast for sure, but being so I want to go on that topic, and you sort of started and then you stopped. You said education isn’t enough, so everybody’s heard the education. There’s the subset of people in Kelly’s experience, the majority of people, not listening to the education. What kind of things can we do?

Anne: I think it’s a combination. I mean, you look for those little cracks and rays of light coming through because when you’re dealing with institutions, I mean, the nature of institutions is not to change, right, and I’m talking about school as an institution politics as an institution, right? So how do you then kind of breach that and make change? You look and try to find individual people that are open-minded enough to be a change agent within, say, a school. And that’s what we see in a lot of innovative school programmes that are happening which are just kind of done on an adhoc basis by some individual who just really cares about it. We’re not really seeing it coming from above the institution. I think that what we really will need to rely on and do kind of leverage is law. So if you look at successful social justice movements, for example, the civil rights movement in the United States, they were marching. They also had like a lot of lawyers, and they had a lot of people working on looking at policies that already existed, making sure that they get enforced, changing policy litigating when policy wasn’t, when laws weren’t being followed, and litigating to create precedent for laws. That would then set a precedent, where if you’re not being treated fairly, you can go through the courts. And some of that is starting to happen I think for neurodivergent, people as well, particularly students, particularly in the United States, around human rights violations around issues like restraint and seclusion in schools and a lot of times if it something doesn’t want to change an institution doesn’t want to change, you have to make a change by going to the courts and kind of going along and educating is, you know, that’s not going to work. So then you come back and with a with the law that’s something that we haven’t done very much of at all in the neurodiversity movement, certainly not in Canada. And I think that’s kind of the next step to make sure we have existing disability rights legislation in Canada, but there is scant or no mention in some cases of people of autistic people. So then how do we work with that law and get our disability rights enforced?

Daria: Yes, so Kelly, what do you see as the path forward to make your son’s experiences different and is it about reaching out one-to-one with certain people who are inclusive and interested in change? And being these change agents, is it I mean, it seems to be that certain people come along and make little things happen. And then those are examples for others and kind of a snowball, but in this backwards movement of the last 2 years that you’ve described… What do you see as your path in the next 3 years?

Kelly: So I’ve always kind of had a multipronged approach, um, if you go to my website, you can see what I have as active Bills briefs and signatures of things that I’m working at in terms of using the politics, so I also have a policy where I only sign petitions that are going to go to the Quebec National Assembly or towards the house or the senate, because I don’t want to waste time and things that aren’t going to actively go anywhere or make it the actual change. I’m actually going to be in Ottawa next week with DAWN Canada this time. DAWN is the Disabled Women’s Network of Canada, because we’re celebrating our 40th anniversary. We’re the longest-running feminist disability rights organization in Canada. And so I’m going there for that, but I also have a whole list of Bills and Briefs that I submitted that I’m working on. And I’ll bring that up also because I want to encourage your everyday Joe: you don’t have to be special to write a letter to a Senator or to the Parliament, or to address a Bill or to submit a Brief. Anybody can do it. It’s free to do. And you don’t need a stamp on your letter or email it. And so I have it on my website, because I am encouraging other people to go ahead and sign joint statements if you’re interested in the same bills that I am interested in which are quite vast.

So for me, seclusion and restraint in schools is a big one–the elimination of that. We still allow Corporal punishment against children in Canada. Where one of the last countries in the world to still allow that, which is embarrassing, just horribly embarrassing, and is a violation of the UN Rights of the Child. But anyway, all that to say, I mean so yeah, I mean I do one-on-one work. I do advising work. I do consulting work. I am working with other nonprofits. I am on a board of another nonprofit, I go and stand up in Parliament. I’m not shy to do those things. So to make change, I think, it takes a whole lot of different angles, and even you know, people ask me when I talked about just inside a small business. They say, oh you know, should you address the top or from the bottom, and it’s it’s everybody, it is everybody. It definitely helps, of course, if the top is interested in helping because if without that, without that buy-in, it’s not going to happen. But I always tell people, it’s not an HR issue. It is an everybody issue. It matters as much to finance as it does to your programming department. It’s an everybody issue, because we’re everywhere, because diverse people are everywhere. And it’s a human issue, so it’s not about going to one place. And saying, oh, it’s on this person to change, or it’s on me to do the education. It’s really everybody’s got to get together and do this.

I am grateful for the knowledge Kelly and Anne shared with us and am in awe of their advocacy work. I hope that you found this episode of Autistic Moms Chatting a worthwhile listen. If so, please consider sharing it on social media!

Until next time, here’s to choosing play and experiencing joy every day!

Thank you to Toronto recording artist Ayria for the intro/outro song permission.