Autism Interview #81: Michelle Swan on Modeling Autism Acceptance

Michelle Swan is an autistic Australian writer, speaker, mentor, and neurodiversity rights advocate. She has experience in peer support, mentoring, education workshop presentation, community building and advocacy with degrees teaching and psychology. Michelle is also a mother to six neurodivergent children and is the author of The Real Experts: Readings for Parents of Autistic Children and the co-author of The Respectfully Connected Anthology. This week she shared information about her advocacy work and offered advice for how parents can model autism acceptance in order to help build a positive autistic identity for their children.

How did you become interested in your current line of work as a mentor, speaker, and neurodiversity rights advocate?

It was actually more a natural progression into this kind of work than anything. I trained as a teacher, worked in that area for a while, then left the industry for a while to raise my children. All my children are neurodivergent, and so am I, so it was easy to transition over to wanting to work in human rights. I studied psychology a few years ago, and found much in that system that wasn’t actually disability friendly. Around that time I was also involved in a couple of community building projects local to me, and things just went from there. I could see so many ways neurodivergent people were asking for help and support and not getting it. I started out offering myself for free as a volunteer in everything I did, but reached the point where I had to make a decision to either attempt to earn some money from the work, or go and get a job doing something else. I figured I’d be a terrible employee, mostly because I need to be able to choose my own hours around my children’s and my own needs, and knew I would rather keep helping people as much as I could using the strengths I know I have, so here I am.

What topics are you most often asked to speak about?

I’m most often asked to speak about “managing challenging behaviour,” usually by parents and teachers. I always start by asking them if they would like to be “managed!” Actually, I do like answering this question, because it gives me an opportunity to tell people about the experience of neurodivergent people in a world not really designed to meet their needs, and to discuss with parents and teachers how they can better understand and support the neurodivergent children in their care.

Do you have any children on the spectrum?

Yes. I have 6 children. All are neurodivergent. My children among them have received the following diagnoses: Bipolar Disorder, Autism Spectrum Disorder, Pervasive Developmental Delay, Sleep Initiation Disorder, Sensory Processing Disorder, Major Depressive Disorder, Generalised Anxiety Disorder.

Do you have any advice for families who have an autistic child among neurotypical siblings?

Yes. It is the same advice I give to all parents who ask me about the best way to parent. Treat your children with kindness and respect. Model graciousness. Stand up for their needs. Expect great things from all of them, and give them the tools they need to achieve great things. Find out what they love and are good at and help them build on those things. Find out what they need help with and support them the best way you can.

In particular, how can we go about teaching children to embrace differences and advocate for acceptance?

The best way to teach anything is to model it. If you want your children to value diversity, you have to genuinely value it yourself. Mix with people of all ages, backgrounds, interests, and abilities. Listen to the thoughts and knowledge of people who are different than you, and learn from their experiences. In the case of neurodiversity, centre the voices of the neurodivergent in all conversations about neurodiversity. Make informed decisions about how to support your neurodivergent children based on what you hear neurodivergent adults say. Don’t be too proud to admit you have a lot to learn, that you make mistakes, and that you need to change.

What mistakes do neurotypical autism advocates make?

They think they know what neurodivergent people need better than the neurodivergent people themselves, and then set about helping them the way they think they need to be helped, regardless of whether that is actually what is needed.

They fail to listen to autistic people. In fact, they often actively speak over them.

When they do seek out autistic input, they don’t value autistic perspectives and expertise enough to pay autistic people who give their time to help others understand their children and their childrens’ experience.

What does a real ally to the autistic community look like?

I find this question a bit irritating, to be honest. I get that people want to be seen as being helpful…. but, as an autistic person it’s pretty annoying to have people jostling for position and seeking your endorsement as an “ally”. I’ve thought about it a fair bit and I can’t decide if hearing the question “am I a good ally?” speaks more to me about the person asking really trying to do right, or seeking approval with a lack of understanding that it really isn’t about them at all! It could be either. Being an ally to any group of people shouldn’t be seen as a badge of honour, a stamp of approval, or a status to be obtained.

A good ally is such a hard thing to quantify, and such a rare thing to find someone genuinely doing well. It is equal parts doing good and doing no harm. It is genuine humility to know, and openly say, that you don’t have the answers or the right to speak when autistic people can do so themselves. It is defending the rights, competence and dignity of autistic people at all times. It is respectfully deferring to autistic people in every instance and every conversation about autism. If you have concerns or things you want to question, it is keeping thoughtful and respectful questions to be asked within the context of an established and trusting relationship where the autistic person can speak freely to answer your concerns without fear of intimidation or shaming.

How did you develop a positive autistic identity?

I spent time with other autistic people who were comfortable with themselves and had a positive self image. I read articles by autistic people who were not ashamed to identify as autistic and wrote about both the strengths and challenges that come with being autistic.

How can parents help their children develop a positive autistic identity?

Tell them they are wonderful just as they are. Let them know they are strong, resilient, persistent, creative, funny, kind, generous, clever, …. whatever their strengths are. Never shame them for struggling and needing help.

Give them access to autistic community and let autistic adults mentor them (pay them!). This can be done in person or through online community.

 

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1 Comments

  1. Reply

    PREACH!!

    Lovely to “meet” another advocate who’s a neurovergent Mama with neurodivergent children.

    “Kindness and respect” is our family mantra. I think pretty much EVERYTHING can be analyzed and decided on the basis of these two qualities.

    Thanks and love,
    Full Spectrum Mama

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