Autism Interview #102: Marie Porter on Leading a Better Advocacy Movement

Marie Porter is a professional spandex costumer and cookbook author from Canada. She is an award-winning cake artist, and her cakes even landed her international magazine coverage, including “Every Day with Rachel Ray.” She blogs about new recipes, celebrations, crafts, and occasionally, autism. This week she shared her experiences growing up undiagnosed and ideas for how parents can better support autistics in leading a more positive advocacy movement.

How did you first develop an understanding of your autistic identity? Was this awareness positive/negative/neutral? Explain.

I was diagnosed when I was about 15 or 16. At the time, it was basically framed as “This explains why you’re weird/different/a loser/ etc,” and I was pointed to Rain Man for some reason. I was definitely under the understanding that my diagnosis was shameful, and that I should hide it if at all possible. I stayed in the closet til I was about 32 years old. I was pretty good at masking, and my circumstances – self employed, not really active in any social groups (aside from Mensa, where a HUGE percentage of the membership is autistic) – helped out.

You’ve written a recent article condemning ABA. What responsibility do NT parents have to prevent the spread of harmful therapies (other than avoiding them for their own children)?

Allistic parents need to realize that even if they, personally, are not oppressing autistic people, they belong to the “majority,” and that a lot of people in that group DO oppress autistic people, whether intentionally or not. A big part of that oppression is wrapped up in silencing autistic people, speaking over us, etc.

As such, the “ABA is good!” narratives – almost exclusively from people who have not been subjected to ABA themselves – tend to drown out the myriad autistic voices speaking up about how harmful it is. It’s not enough to simply not contribute to that drowning out of autistic voices, we need parents to go out of their way to center and elevate autistic voices, when it comes to autistic issues – especially on the subject of abuses we face.

There are may variations of a saying out there, “Silence favours the oppressor,” or “neutrality favours the oppressor.” It applies here, as well.

What did your parents, teachers, or other adults do to help support the development of a positive autistic identity for you when you were young?

Absolutely nothing. Because I wasn’t DXed til I was most of the way through high school, I was just treated as weird, broken, etc. Many times, I was told – by adults – that if I didn’t want to be called the ‘R’ word, I “shouldn’t act like one.”  I have no relationship with my family, but last I heard, my mother still denied my DX. Apparently it is personally offensive to her, that one of her kids was “broken” in this way.

What is something you wish your parents, teachers or other adults would have done differently to help support the development of a positive autistic identity?

Given that I wasn’t DXed until high school, I guess my answer would be that there should be some degree in universality in how students are treated by schools. Students should be treated like humans, no matter what their neurotype, personality, interests, etc. are. I don’t think kids should be treated as lesser-than, for being a different type of person than the teacher, or even from the rest of the students. Some kids are jocks. Some are musicians. Some are outgoing, some are introverted, some are autistic. Get to know the kids and give them what they need, in general. Let introverts be introverts, let the musical theater kids do their thing, let autistics be autistics. Homogeneity is generally not a good thing when it comes to society, and the understanding of that should begin in school.

The fact of the matter is that many autistic people – especially people of colour and women – aren’t even Dxed until they are adults. As such, I think it best to aim to develop positive identities for all students. See their strengths, play to those strengths. Gently work on weaknesses. These are base principles that would help all students, require no real monetary investment or special programs – just empathy and patience.

Obviously, for children that ARE diagnosed as autistic, teachers should work to not isolate them, demonize them, or shame them for their differences.  Presume competence. Again, playing to strengths and gently working on weaknesses is a universal concept here – but realize that there are accommodations that can and should be made, to foster a healthy learning environment for the autistic kid.  This will vary based on their needs – better lighting, trying to keep things relatively quiet, allowing for some (non abusive!) quiet, alone time if needed.

What mistakes do neurotypical autism advocates make?

The big ones are:

Not listening to autistics when it comes to their advocacy.

One big example of this comes with the language used. An overwhelming  majority of autistics (and the disabled community in general) prefer ID first language, and this has been written about so many times, by so many people, and covered in SO many polls. Yet, we’ll constantly be “corrected” on our own ID language by allistic “autism advocates” who tell us that our identity is wrong, because they learned (from other allistics) that “person first language” is the way to go.

It’s rude, it removes autonomy from us, and speaks over us. This is only one example, but it’s the most common one I see. If an autistic (or the overwhelming majority of us!) says “I prefer this” or “I don’t like this,” please respect that. Telling us that we’re wrong about our own lived experiences is infantilizing, dehumanizing, and incredibly disrespectful. Anyone claiming to be an autism advocate needs to respect autistics, or what’s the point of advocacy?

Not centering and elevating autistic voices.

If you have a platform, elevate autistic voices. So many allistic “autism advocates” tend to center themselves, whether for attention, social media “currency,” or actual paid opportunities. This plays out in media interviews, panels at events, etc. If you are an allistic advocate being given a platform, please ensure that autistic voices are the majority.

For example, if you are being interviewed about autism, ask the reporter how many autistics they will be interviewing. Have contact information available in case this is something that they haven’t considered. It’s absolutely mind blowing how often articles will be written about autism – or even specific autistics – that don’t quote any autistics, or even the person the article is supposed to be about!

If you are invited to be a speaker at an event about autism, the same concept applies. I was once on a panel about how to thrive on the spectrum, and only 2 of the 5 speakers were autistic. The moderator was an “autism mom” that was a fan of Autism Speaks. The 2 of us autistics on the panel were constantly being spoken over and “corrected.” It was a horrific experience.

One panelist – whose only credential is that she “tended to date autistic men” – responded to an autistic audience member who spoke about being slapped by her parents for ‘saying the wrong thing’ by telling that girl to “just remember that your parents were doing the best they could, with what they had.”

These are the kinds of things that should never happen when the subject is autism, and could easily be prevented by centering autistic voices.

Attacking autistics online.

This is something I – and many autistic self advocates I know – encounter on a regular basis, especially on Twitter. “Autism parents” frequently take issue with autistics speaking up for ourselves – especially with regards to ABA – and go on the attack. I’ve been harassed, “shame tweeted,” doxxed, and more… and I haven’t even had it as bad as many others have. There have been death threats, in person confrontations, people calling the employers of autistic people, and more.

You can’t advocate for a better life and future for autistics, by attacking autistics for speaking up, and attempting to silence us.

A lot of the attacks I see online are about trying to discredit autistics, to render their views somehow less applicable. Many times, this comes as some variation of “you’re not like my kid!” (Said to an adult!), or “you must be really high functioning if you can tweet.” There are even attacks on nonverbal autistics, claiming that they’re faking being nonverbal, because they can type! (I’ll never understand that).

If you want a better future for your autistic kid, then listen to the people who were autistic kids. When the vast majority of autistics speaking out about how harmful ABA is (with PTSD research backing us up!), don’t try to discredit us and carry on about how your kid / your ABA therapist / ABA in general is somehow different.

If you’re feeling the need to shut autistics up when it comes to autistic issues, you should take a long, hard look at what you’re actually advocating for.

You have an eclectic mix of professional experiences (graphic designer, fashion designer, author, bridal consultant, bartender, and award-winning cake artist). What obstacles did you face to enter these professional settings? What assets do you have that helped you succeed? 

 I haven’t really faced any barrier to entry for any profession I’ve done, as they’ve all been self employment experiences.  (Note: I was never a bartender, just trained in bartending, which I used for other careers).

My first career was in fashion, sewing skating dresses. I was making my own, and that just morphed into getting orders from people at my rink, and branched out from there – both in getting orders from further away from my rink, and expanding on my offerings. I went from skating dresses, to synchro swim costumes, pro wrestling costumes, and more. Same aptitude, slightly different applications.

The sewing and design background helped with wedding planning, bridal design, and graphic arts, as well as cake decorating. As disparate as all of my career paths look, they all built on another, the skills pass along and evolve.

As far as my assets go, I’ve got the ability to see (or taste!) something and know how it’s made. For fashion, that means being able to take an idea and render it – a 3D finished product – into a pattern, and construct it from there.

For the cookbooks, it helps a lot when it comes to developing recipes. For instance, in my gluten-free cookbooks, I have kind of an innate understanding of the different qualities of ingredients, and how ingredients work with alternative flours, and developing recipes from the ground up. I’ll have a goal in mind – a certain dish – and know how it’s going to go together – and sometimes that means getting weird with ingredients or techniques to make it work, as alternative flours act differently from wheat flours.

When it comes to things like the retail product replicas in “More Than Poutine,” I can taste a food item, and pick out what all is in there, and the proportions. It made things really easy for that particular cookbook, and it made a lot of people happy to have access to making accurate replica items in their own home.

My biggest obstacle is not being a salesperson. I’m not really a “people person,” and I HATE doing sales work. I guess that’s why I like doing things like costuming – I can let the photos do a lot of the sales work for me.

What do you enjoy most about baking? What is/are your favorite recipes(s)?

Hmm. I guess I just like making tasty things, and especially passing tasty things on to other people. I think deep down, I’m like someone’s Italian grandma! Good food makes people happy, and I enjoy that.

I don’t know if I have a favourite recipe, as I’m always coming up with something new – and that’s a big part of the fun, for me.

I guess my Mango Mojito Upside Down cake is one of the ones I’m most known for, and has some fun history attached?

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