Thursday, March 12, 2020

“I think we all need people in our lives who share our identities”: The Power of Autistic Mentorship

Photo courtesy Anne Borden
[image: Two white people: A boy with medium-short dark blond hair, and a
woman with short dark brown hair, posing for the camera.
They are sitting on a wooden bench next to a large bush.]
Anne Borden and Raya Shields live in Toronto, where Raya is an autistic mentor to Anne’s son Baxter. Both Anne and Raya are members of Autistics for Autistics (A4A), an autistic self-advocacy organization. In this conversation, they discuss autistic mentorship: what it is, why it’s important, and how we can forge new approaches to autism through autistic-led and directed projects.

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Anne: Raya, how would you describe what you do? Is it autistic mentorship, or what term would you use?

Raya: I refer to myself as a mentor and to the work that I do with children and young people as mentorship. I also have my Bachelor of Arts in Child and Youth Care from Ryerson University, and so am also a child and youth care worker, and sometimes refer to my work in that way. I am an autistic adult working with autistic and otherwise neurodivergent children and young people, so I think it makes sense to refer to what I do with children and youth as autistic mentorship.

In recent years, I have been more open about the fact that I am autistic in the work that I do. Previously, I kept this information private for fear of families not wanting me to work with their child, knowing that I am autistic. I’ve noticed a shift recently with parents seeming to be open in a way that they were not previously (in my experience) to the prospect of having an autistic adult involved in their child’s life. That makes me feel hopeful about the future. I’ve had parents reach out to me because they know that I am autistic, and that feels really amazing.

Anne: Do you feel like a few years ago it was riskier to be open about being autistic, in the work you do?

Raya: Well, yes, in a way though I would say the risk is context-dependent. For example, I started peer mentoring when I was in high school. At that point in my life, parents knew I was neurodivergent (though not necessarily that I was autistic). Then the work I did with children gradually moved from the school and into the community when parents hired me to work with their child on weekends or after school. As I began to connect with parents interested in mentorship or support for their child outside of the school setting, I initially did not bring up the fact that I am autistic. People were contacting me because they heard from others that I ran social groups for neurodivergent (ND) youth, that I worked with children and teens one to one on life skills and particularly coaching ND teens on using the subway with more independence, and that I provided “respite.”

At that time (and to some extent now) I had this anxiety that if parents knew I was autistic, they wouldn’t trust me to do good work with their child. The irony is that I am good at what I do because I share their child’s neurology and can establish relationships that are child led, that respect autistic ways of communicating, and that (I hope) support children/youth in learning new skills in navigating a world that just isn’t built with autistic people in mind.

So I guess I’d say that when I first became involved in mentorship there was no need to disclose because everyone who attended my school was ND. Then after I graduated, I spent several years being afraid of disclosing my neurology because of ableism. The experiences of being told that being autistic was bad, that it made me less than human, had made me feel that masking and hiding the fact that I am autistic and ND was the only way I would be able to do the work I loved.

In the last three years or so I’ve had this wonderful experience of having a few families reach out to me because they knew I was autistic, and that was the reason that they wanted me to work with their child—and that has been so liberating. It felt like I was holding my breath for so many years when working with kids/youth, afraid that any tic, or stim, or the way I spoke, or misunderstanding figures of speech or knowing if someone was being funny or sarcastic, or not holding eye contact for the “right” amount of time—that just started melting away, and I could finally take a breath.

I mean, let go of the breath I was metaphorically holding!

Anne: I’m one of those parents who was looking for an autistic person, specifically, to hang out with my kid. Before my family met you, we went through a series of neurotypical (NT) babysitters and they had such a limited repertoire, like because my kid wasn't into reading Rainbow Fish or making Lego action figures they would just throw up their hands. Honestly, I felt like saying “good luck with life” to them because they didn’t seem to have much inclination to adapt at all. I was like, you really can’t line up crayons with a kid? That’s just too outside of your comfort zone??

Raya: Oh man, some of favourite moments spent with kids are ones where we do something like ride the subway to every stop and photograph each station or ride different elevators around the city. I would be very down to line up crayons.

Anne: Right? I remember there was this one babysitter…after she left one day, Bax said: “Why does Samantha go to the bathroom so much?” And we figured out she was going into the bathroom and texting…not doing her bit at all! And this was heartbreaking, and it was also very hard when [a babysitter] would just not show up, for example. I was mad at them for giving up, for being inflexible. I also just did not get why they couldn’t connect, when he was clearly reaching out and doing his best to make a connection with them. 

The funny thing is the stereotype of autistic people is we're rigid and inflexible, yet all these NT babysitters we tried were so rigid in their expectations. The person who could go with the flow was you. But it took some time to find you. It’s not like there’s a database of autistic mentors or babysitters, although there should be. 

Raya: As far as I know there is no database for finding autistic mentors here in Toronto although there are many, many respite services and directories that match a non-autistic respite worker to families. I think it’s basically word of mouth here, I can think of two or three other neurodivergent folks offering classes or programs or mentoring to disabled kids.

Anne: Yes, and this is in a city of three million, so clearly we need to build capacity and support! 

I wanted to ask you about how you deal with parent expectations. How do you negotiate, for example, when parents might have a different expectation than the client, than the kid themself?

Raya: I generally reframe what I am hearing from parents. So with many of the kids I work with, their parents have concerns about anxiety, frustration, socialization, executive functioning skills, and increasing a person’s independence. I might hear something like “we want you to help David* develop his social skills.” For me, I ask more questions about what the parents think they want and what the child wants and go from there.

For me the question is always: Is this about a critical life skill, is it a safety skill, or is this just an NT social expectation? I draw a lot from Ruti Regan’s blog “Real Social Skills” which offers insight into NT social expectations and the logic behind them that can be useful information for autistic folks to know, even if we may not relate that way.

I use a similar approach to the work I do, where my aim is to model ways to relate that are not overwhelming, and that respect autonomy. So parents might list different concerns they have about their child or goals they have for their child and I do my best to sift through the parents’ wishes and the child’s wishes and move forward in a way the respects the child’s autonomy while also reframing the issue the parent has presented.

I’ll give an example—many parents do tell me they want their child or teen to develop social skills. They often cite social anxiety, lack of confidence, difficulty tolerating a group environment, or difficulty with the NT conversation dynamic. What I offer is a group of likeminded peers—other autistic teens—who gather regularly and spend time in the community doing activities they mutually enjoy, and help to choose.

Through this supportive and accepting environment, where everyone is ND including myself, there are opportunities to navigate social dynamics on the person’s own terms and in a community of peers where it is ok to be autistic.

If parents say they are interested in their child or teen developing a better understanding of how to use public transit or money, I will co-design activities with the young person that address those skills while also respecting the young person’s own desires for how they will spend our time together. That might look like taking the subway each week to a different library if the kid is into DVDs or comics, or working with a young person on developing a budget to save up for a special event like Comic Con.

Many of the kids and teens I work with have a lot of anxiety and sometimes trauma from being in school environments where behaviorist-based programming was used. So it’s even more important that our work together is client-directed and that the young person has the opportunity to develop skills in a safe environment where their “no” will be respected and understood as a powerful way of communicating their boundaries.

Ultimately, what I hope young people get out of the mentorship experience are tools to advocate for themselves and their needs, pride in their autistic identity, and greater access to their communities.

Anne: What's your favourite thing about mentoring autistic kids? How does this experience impact you personally?

Raya: Hmmm, it’s hard to choose a favourite part! I love being able to get to know so many amazing autistic and ND kids and teens, and I especially love that I get to be part of their lives and see them grow and develop into amazing autistic young adults. I’ve been working with some of the youth I mentor for almost a decade, and to see someone you knew as a ten year old kid turn into an incredible twenty year old young man is really humbling.

I love getting to travel all over Toronto and exploring really niche and fascinating parts of the city—like a 113-year-old vintage birdcage elevator at the Gladstone Hotel, Toronto’s “secret” lower Bay Station and old railway cars, and looking for the albino squirrels in Trinity Bellwoods Park. Tomorrow I am going to an antique store with a kid to check out the city’s only Biblio-Mat (a vending machine filled with vintage books). I also love quiet moments of connection where I may be reading a book with a kid or watching an episode of Pablo where there is just this easy feeling of acceptance and mutual joy in being with someone who gets you.

I like that I can share my own niche interests with kids and they are so receptive to them and often look for ways to engage with me about them—for example I really love washing machines, especially vintage ones, and when I’m with kids I work with who know how happy these make me, they might point out coin laundromats or send me photos of washing machines they find when they go on trips. (So much for the myth that autistic people lack empathy!)

Anne: Bax does that! He makes little video laundro-tours for you when we’re out of town.

Raya: Yes…I like being able to support future autistic adults in a way I wish I was supported as a young (and initially misdiagnosed) autistic child. I think we all need people in our lives who share our identities and who understand what it is like to be neurodivergent in a world that isn’t always accommodating or friendly to autistic ways of being.

Anne: Mm-hmm.  I’m going to shift to policy for a second, because the work that you and other autistic mentors do—which is incredible—is also really marginalized by funders and I can’t leave that unsaid. 

For example—and this might be hard for some readers outside of Canada to believe—but the Government of Canada just funded half a million dollars for an “autism mentorship” program at an autism centre where none of the so-called mentors are autistic! They are neurotypical social workers or social work students. 

Now, how is that mentorship by any definition?  Why do you think the government and autism service agencies would call it “mentorship”?

Raya: I think it’s twofold. For one thing, the public image of the autistic person is as perpetually white, five years old, and male. I think there is an inability on the part of autism service agencies to imagine what autistic futures or what autistic adult lives might look like. When autism continues to be thought of in terms of young children and when autistic adults are infantilized, I don’t think autism service agencies are able to be creative, and to imagine a world where autistic adults are the ones who work with and guide autistic children.

I think following from this incredibly inflexible way of understanding autism, there is also a belief that autistic people need neurotypical mentors who will model neurotypical ways of relating and who will reinforce neurotypical social norms. The idea of an autistic adult working with an autistic child makes some autism “professionals” a little nervous, I think.

After all, traditional autism services often have a normalizing agenda; they want us to learn how to be more NT and it doesn’t occur to them that perhaps we would benefit most from learning how to move through this world as an autistic person from someone who has spent their whole life doing just that.

Anne: That’s right. And I think there are market forces involved. I don’t think most autism service providers actually want to share their space in the market with autistic people. When the autistic self-advocacy group I am in goes to speak somewhere, we get more questions and positive responses from attendees than the neurotypical “expert” presenters do. So there is obviously a demand for what we have to offer! But there is also an element of the established service providers worrying about their bottom line, seeing actually autistic individuals and organizations as competition.

Raya: Interesting. Yes I think that’s very true.

Anne: Because if they didn’t see us as competition, they would share the space with our organizations… and they do not. There is an entire economy operating around “autism,” and that’s why I think the neurodiversity movement is really more than a human rights movement, it’s also a market disrupter for the autism industry. Autism service agencies feel threatened by neurodiversity and especially autistic-led organizations So they try to co-opt ideas like mentorship, but without actually making any structural changes that might impact their existing business approach. They will even use terms like “neurodiversity” without being inclusive! It’s window dressing.

That leaves the question: how do we get the useful programs and services, such as true autistic mentorship, supported, funded, and integrated so that people in our community can access them? 

Raya: I honestly don’t know what the answer is. It would be great to compile some kind of database of autistic/ND support workers, mentors, tutors, teachers, and autistic-led programs so that the work we are doing in the community is more well-known. In Toronto I can think of three programs that are run by ND folks for ND kids and teens, but there is such a monopoly on private programs run by ABA therapists, private autism centres that run social skills groups…and then government funded “respite programs” that tend to be run out of ABA centres.

Anne: There are some workarounds with funding, sometimes…

Raya: But it doesn’t solve the larger problem that you bring up that autistic people are strategically and consistently shut out of spaces that are dominated by so-called autism “experts,” in part because perhaps they feel threatened or that their jobs are at stake.

I don’t have the answers to this important question but I think a point of entry is through the work of grassroots organizations like Autistics for Autistics and Autistics United Canada. Advocating for a seat at the table in the decisions that affect us and our community—even when it is hard won and tenuous—can give us a little influence, and perhaps open doors towards thinking differently about services and funding for autistic people and moving towards services that we want, that are actually needed, and that we choose and design for ourselves.

Anne: Amen.

What’s the biggest message or takeaway that you’d like your clients to get from your mentorship?

Raya: That it is ok to be autistic and that the autistic community is vibrant and welcoming and that they can find a safe harbour with autistic adults. That they are valued and respected and loved for who they are now and that they aren’t “too much” or “not enough” despite what they may experience in NT spaces.

Anne: Thank you for all you do, Raya!!

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*A fictional name; not the name of a real client.