Neurodivergence Collective of New Brunswick reshapes narratives around autism

Written for The Aquinian

(*artwork by Incé Husain)

Louise Tardif, an autistic person in New Brunswick, founded the Neurodivergence Collective of New Brunswick to offer community to neurodivergent people and reshape the narrative around autism.

Its establishment was driven by Tardif's sense of isolation when she received her late diagnosis.

She describes her autism as an "exhausting sensory overdrive" - a hypersensitivity to bright light and most clothing fibres, wariness of casual touch and eye contact, and neurological tics to cope with the daily "sensory assaults".

As an adult, the help she could access was minimal; most resources were for children or families.

"I wanted to be able to connect with community members, and (there wasn’t) anything for me to be able to do that, so I just created my own," says Tardif.

The collective began with separate groups for those with autism or intersecting 2SLGBTQAI+ identities, then converged into a united collective extending to all neurodivergent communities. Each subgroup manages its own activities and initiatives.

"It (started by) just bouncing ideas with other autistic people," said Tardif, who had started the Autistic Peer Support Group in 2019. "(We decided to) expand and make a collective, because all the neurodivergent people could benefit from this peer support network."

Tardif describes the monthly Autistic Peer Support Group meetings as "facilitated discussions." The meetings involve open dialogues on topics chosen by the members that are guided by a facilitator - usually Tardif - and discussion questions. New members are introduced at the start of each meeting, and personal "highs and lows of the month" are shared as a warm group check-in. Tardif also offers sessions in French.

"(Meeting with other autistic people) is the biggest learning," says Tardif. "It really helps that learning curve if you have people who've already had those experiences you've had.”

Tardif believes that the narrative around autism is “overwhelmingly one of tragedy”. She defines pride in her autistic identity as the commitment to reclaiming the narrative as one of acceptance and empowerment. She distinguishes this from ‘awareness’, which is restricted to mere acknowledgement and devoid of “disability pride”.

“You see (awareness) in parents when they get the announcement “maybe your child has autism” - you can see (how) their faces just drop. I don’t want that,” says Tardif. “We should see ‘disability pride’ more - for society to be accepting and understanding of our differences.”

In future, Tardif hopes that the collective can become a social enterprise, like a charity. Currently, the group’s Facebook page has garnered nearly 300 followers.

“I see (autism) as an essential part of my being and identity,” says Tardif. “It’s a beautiful thing when you find other people in your ‘neuro-minority’.”

***

Melanie Green is an autistic Psychology Honours student at the University of New Brunswick. She follows the Neurodivergent Collective of New Brunswick on Facebook and says it provides a sense of connection.

“When autistics get together, they connect, and they understand each other and communicate without deficits,” says Green. “It’s really important to speak to others who validate your experiences.”

Green was diagnosed with autism at forty two. For her, autism makes life “challenging and confusing” when it comes to reading people’s emotions and intentions. But she also akins it to “being from a different culture” - to simply associate with different norms than the majority.

“Society makes (unfamiliar) attributes into a disorder because it’s not set up for us,” says Green. “Society disables people.”

Green shares that receiving her diagnosis gave her a “toolbox of coping mechanisms” and the language to describe her lived experience. Her choice to return to school was driven by her diagnosis - she wanted to study psychology to help people like herself.

“If you don’t have a language to describe something, how do you talk about it? You don’t,” says Green. “You just struggle with it, because you don’t know that (there is) a proper way of discussing it.”

For Green, the best support for autistic people is genuine curiosity.

“Ask questions. Get to know people,” says Green. “Just be curious. Try not to go in with any kind of preconceptions... approach (autism) as something that’s neutral.”

***

Barbara D’Entremont is a professor of Psychology at the University of New Brunswick who studies autism and runs a private clinical practice.

“I appreciate hearing (autistic people’s) voices because I think it makes me a better researcher,” D’Entremont says of the Neurodivergence Collective of New Brunswick. “I think it informs our research in ways that can be more directly relevant.”

D’Entremont’s research involves identifying factors that improve quality of life in people with autism and the contexts that enable them.

She explains autism through the medical and social models of disability. The medical model describes autism as clinical attributes for enabling diagnosis, while the social model focuses on day-to-day challenges experienced by those with autism. These models prioritize different interventions.

“In the medical model, we get focused on looking for a cure or changing the individual - it puts the onus of change on the individual,” says D’Entremont. “In the (social model) we spend more time figuring out how we can make the environment work for the individual - it puts the onus of change on society.”

While D’Entremont believes that both models can help improve quality of life, she emphasizes that suggesting a “cure” for autism is problematic. It implies that autistic identities are unwanted. She compares the statement “is there a cure for autism?” to one like “is there a cure for brown hair?”.

“When we’re talking about a cure for autism, what we’re saying is “we wish you weren’t here, we wish you were someone else”,” says D’Entremont. “It’s very stigmatizing and it’s hurtful.”

D’Entremont considers understanding and acceptance to be the greatest barriers posed to people with autism. She tries to read about the lived experiences of people with autism as much as she can to ensure that her research is meaningful.

“We have misunderstood people with autism for a very long time and we are only now starting to hear them.” ♦

A modified version of this article appeared in The Aquinian on November 4th, 2022:

https://theaquinian.net/neurodivergence-collective-of-new-brunswick-reshapes-autism-narratives/