What does it mean to Parent Like an Autistic?

 I wrote the book and titled it, How to Parent Like an Autistic, but what does that mean? And why would anyone want to?

I wrote it simply with the premise that autistic people know what is best for us the vast majority of the time, if not all the time.  

With so many forums like, "Ask an Autistic" we know neurotypical (NT) parents want to understand what is going on in their child's minds. It's best to ask people with firsthand experience, aka Autistic Adults. Autistic adults know what works best for us and what worked best for us as children. We also remember what harmed us. 

This is my biggest piece of advocacy to date because not only is it empowering NT parents by giving them insights into the autistic mind and what to do, but by extension, will hopefully bring greater understanding to child development and lead to happier, better adjusted autistic adults. I want to see the next generation of autistic people with improved mental health, not suffering from PTSD, and not committing suicide at such high rates. We deserve better. I hope this book brings people on the path to make things better. 

I truly believe autistic children thrive when they are unconditionally accepted for who they are. I believe they need autistic mentors and friendships. I also believe autistic parents are the best at supporting autistic children and we share many common beliefs and practices about parenting. It was with this idea that I started surveying autistic parents for my book. 

Parents need support as well, and this book can either serve to guide them along the right path to make sure they are doing the best for their autistic child, or affirm that they are doing it exactly as an autistic would. 

I feel autistic parents will also enjoy seeing their parenting philosophy reflected in the pages, if nothing else than to feel validated and not alone in our unique style. 

How to Parent Like an Autistic

 

My new book, How to Parent Like an Autistic, is live! 

It's available on Amazon in both print and eBook version in 14 countries. 

You'll find some links in the link above. It's also on Rakuten Kobo in eBook format, where it is currently #1 in the Nonfiction - Parenting - Child Development category. 

Hoping to get it up on AppleBooks soon as well. And perhaps as an audio book. 

Thank you for all your support!

Ask Before Dumping Your Baggage

There's this video I see that gets shared every so often on Facebook or LinkedIn, with a Black taxi driver getting yelled at, and he explains calmly how everyone is like a garbage truck, walking around with a whole lot of garbage and needing somewhere to dump it. Sometimes that means you get dumped on, but it's nothing personal.

OK. Nice concept, but isn't that what therapy is for? Rather than dumping your shit on innocent random people or the people you love the most, maybe you should see a therapist.

Realistically speaking, not everyone goes for therapy, and it's also valid to have a trusted venting buddy for the more daily issues that pop up. All that said, no matter how good friends you are, you should still ask before venting/dumping.

Why?

Because emotional labour comes at a cost. You're basically dropping off a whole lot of heavy baggage at their front door and making them carry it around for you, or find a spot for it in their home. And those of us in the giving/caring professions, or those with families, or those with disabilities, or those who are minorities....for a whole bunch of different reasons, we often aren't as strong or able-bodied to take on extra loads than what we're already carrying, or our homes are already so packed with our own baggage and clutter, that we truly cannot find a spot for yours. We're bursting at the seams.

Even worse, many of us who are highly sensitive or empathetic are this way because we come from trauma. So we want to give and please. We want to listen. We want to be available the way no one ever was for us. We want to minimize harm, but I've come to realize, my fear of disappointing you comes at a great cost to me, as I am the one now stuck with your baggage.

People have always come to me with intensely emotional and personal things. And that has only intensified as I am more in the public eye. I also believe my writing makes people feel a connection with me, even though they don't know me personally, they think they do. So they also feel it is OK to message or email me personally. They come, dump, and disappear. Or they come, dump, and appear periodically, whenever they need to dump another load.

What they don't realize is, they are not alone. On any given day, I may receive three or four such dumps, out of the blue, never asking me if I am busy, or even interested. I am expected to drop everything to attend to this rant/complaint/confession/personal issue and then once they are done, they fly off again, much lighter.

I am not telling people never to vent, but I am asking you to ask if it is safe to do so, or if it is the right time, place and person to do it with.

You can say, "I have something sort of heavy..." or "something really frustrated me and I need to vent, is now a good time?" or "are you available?"

Again, a person with PTSD or bad previous experiences might still oblige even if they really shouldn't, but you at least have a chance of getting an honest person who will set boundaries.

Good examples of what to say to people demanding of your time and energy are:

"I'm out of bandwidth."
"I can't right now, but can I check in with you later?"
"This is not a good time."
"I am not the best person to ask."
"I have exactly 5 mins and then I have to go."

Notice how I didn't put any softeners or apologies? Don't apologize for setting boundaries and guarding your time and own mental health.

No one is owed anything. You do not owe anyone your time or mental/emotional energy or labour. Be conscious of the person you are demanding labour from and if granted, please express some gratitude.

I'm Not Baking Up Woke Cookies and Handing Them Out

Some time ago, I bought my sister and I matching t-shirts that said, "I am not your magical Negro. Knowing me does not make you cool."

It is worn out - it was not good quality - and I should probably get a new one. I still need to wear it, just in a bit of a different way.

It is hard, as a Person of Colour, to share stuff specifically for or about my community on Facebook, without white people occasionally popping by to dump some white guilt on it, or shed their fragile white tears all over the place. I think about it every time I post, because depending on the topic, their silence will also speak volumes and I have to decide if I am ready for that today. Basically, I think about race every day. I live my race every day. And I have to consider my actions and speech concerning race every single day, every single post, every single blog article, every single interaction.

I recently had a white friend ask me if I considered race after I posted a video of a Philippino dancing for a Black American woman on a cruise. Yes. Yes, I indeed had. I considered both the class and racial issues. The power imbalance. The All The Things. Like I do every minute of every goddamn day, thanks for asking. 

I could be wrong, but I think white people only think about race when they sorta have to. And maybe it crosses their mind now and again and they have this wonderful woke revelation. Which is cool - I'm like, so proud of you, but please stop asking POC to pat you on the head each time you figure this shit out. Because for us, it's old news. It's very similar to a child declaring, "that's a circle!" and the first time your kid does this, you are super amazed. The next 20 times your kid says this, you're like, "ok, nice Jimmy." White people run to message or tell POC, "racism exists! Holy crap, I just saw it now!" and POC are trying to be as polite as possible like, "gooooood job!" and not sound too condescending.

But I am not going to hold people's hands through this anymore. I am done drying up white tears. And I am sooooo done with white people commenting with their performative wokeness, asking me for cookies for it. The same way I am not your magical Negro, I am not the giver of the woke cookies. Stop asking me for them. I don't even have a recipe for them. Not even sure what they would be made of. Raisins and mayonnaise?

Most of all, stop asking POC to praise and validate you. I'm glad when people come to important realizations. I'm even more happy when people take action and call out/in other white people. But stop trying to win points with us. Just dance like nobody is watching, or off the beat, or whatever you need to do.   

Disclosure in Exchange for Respect

In our effort to increase awareness and acceptance about disabilities, a subset of people seem to have latched on to the idea that if we just tell people we're disabled, others will suddenly understand be kind to us.

I'm talking about Sainsbury offering extra assistance to anyone wearing a sunflower landyard. Anyone with an invisible disability is welcome to pick one up for free and then shop freely, while displaying their diagnosis to the world in exchange for basic respect.

Or parents buying blue plastic pumpkin baskets or making signs or special treat bags that say, "be patient with me, I'm non verbal." But let's keep it real about what is actually happening: adults are withholding candy from children because they don't say "trick or treat" properly or at all. Who exactly is acting like an adult and who is the child in this situation? It's candy. It's cheap. People come to your home on one specific night a year and you've decided now you are the ableism Halloween candy police and must Lord over the visitors who are requesting candy? Give me a break!
Can we just agree to give candy to whoever comes to your door, without being racist, sexist, classist or ableist? Is it really too much to ask?

No one and no parent, should have to explain or disclose a disability in order to simply exist, shop, work, trick or treat, or just take a walk down the street. I shouldn't have to wear a giant sign on my head to have you be kind to me or use some patience.

Similarily, I had a conversation with a friend online recently where a meme was explaining some proper grammar for common expressions and I posted it not because I care about proper grammar, but because I wanted others to understand that those with speech impediments might get these wrong simply because they're hard to pronounce. My friend replied that people should at least know how to spell them correctly then. I said, "dyslexia is a thing and does not indicate a lack of understanding or intelligence." The friend responded, "people with disabilities get a pass."
No, that's not how it works. How about just don't judge at all? You are not the holder and giver of the "pass." We don't need your judgement. And a "bad speller" stranger on the internet shouldn't have to provide their diagnostic reports in order for you to not pass judgement.

I'm really tired of people suddenly requiring everyone else to provide an explanation for being different, needing some help, or just wanting a bit more understanding, in order to be treated like a human being. 

On Grief

I’m no expert on grief, but I want you to know you’re not alone and everything you are feeling is totally normal. Just like birth connects women to the wisdom of the ancients – we have been birthing for millennia and each of us become connected like a cosmic thread – death unites us in the same way. Or rather, grief does. I’m unsure if we are united with anyone after death, but for sure, once you experience the death of a loved one, you gain membership into a club no one told you about and one you never wanted to be part of.

The first year is the worst. It just is and there is nothing you can do about it. Accept it is awful. You will feel sick, weak, tired, drained, exhausted, depressed, angry, impatient, and sad. You are going through the process of seeing the world with new eyes and adjusting to a new way of life without your loved one in it. You will take pictures you wish you could show them, and the sudden memory that you cannot will sting your heart. You will go to pick up the phone to call them and remember you cannot. You will hang on to every shred of memory you can find – a scent, an item of clothing, a favourite object of theirs.

image of a woman holding her head in her hand, eyes closed with a pained expression on her face

The first Christmas/Hanukkah, birthday, whatever major celebration without them will suck. If you do manage to have fun, you might stop yourself and feel bad for having fun. Try to just feel whatever you feel and not judge it. I don’t believe any loved one would want us to feel bad – especially because of them.  Ask people to be gentle and patient with you.

I had/have days I wake up fragile without a good explanation other than the emotions just have to pass through and come out. It’s OK to tell your friends and give a head’s up – "today is a vulnerable day."

Every year after gets better. Unlike people, grief never dies. It morphs and lightens and changes, often leaving bittersweet memories instead of pure sadness in its wake, but it will always be with you. And this is why it is futile to fight it and easier to accept it as a journey or a friend who won’t go away. Annoying, but still a friend. A journey without an ending. See it as you wish but know it won’t leave you.

At the same time, there’s no need to hang on too tightly. By moving on, you are not disrespecting the memory of your loved one. They have tucked themselves into a little corner of your heart to make space for all the other wonderful people you will meet in your life. Your heart has enough room to hold them all. It’s a muscle that expands with exercise. Allow your heart to exercise its love muscle!

Remember that all this pain – this horrible heartache – is evidence that you have loved, and loved deeply. And that is a gift, my dear soul. You were lucky.

Beyond The Spectrum - Documentary Review

Content warning: functioning labels, pathology paradigm, feeding/gagging, injections, ABA language


Beyond The Spectrum screenings were held in theatres across Canada for World Autism Awareness Day, and I was invited to be on the discussion panel that was to be held at the end of the screening. In our case here in Montreal, no one showed up to watch, so it was just me and three other of my autistic friends.

We were all alone in the theatre. We had a private screening of #beyondthespectrummovie for #waad @georgeshuard

A post shared by K Bron John (@kbronjohn) on Apr 3, 2018 at 5:46am PDT

I'd love to say I really enjoyed this documentary and had a great time, but I didn't. But let me back up.

Beyond The Spectrum follows a Canadian family for a year after their two year old son, Oskar, receives his autism diagnosis. His parents decide to take a year off work to devote to his care and explore many different methods, therapies, diets, and supplement "cures" to try to make him less autistic - I guess this is the best way to put it. They don't explicitly say that, but the father "hates autism" so this is the best paraphrasing I can come up with.

It should be noted there's an older son, Teddy, who is also autistic. The mother appears to have been a single mother at the time Teddy was diagnosed, so the therapies she did with him were different. Teddy appears to be around 8 or 9 years old in the film (I do not remember his age) and says he believes he is no longer autistic. He speaks of having autism in the past tense.

Regardless of the functioning language used in the film (Oskar is "severe"), My Little Man (now 8) presented very similarly to Oskar at the same age and now presents very similar to Teddy. Only difference is we did not subject our son to even half the therapies this other family tried.

The PR people who reached out to me to sit on the panel warned me ahead of time that the content of the documentary could be difficult or controversial. I was told I did not have to agree to everything I saw in the film, just provide my opinion/perspective. I believe their warning was warranted and I also think it contributed to the lack of an audience showing up to see it.

After the screening, I posted on Instagram and the father asked me if I related to it. I had to tell him, sadly no. As an autistic person, I could relate to the children and why they were behaving the way they did. As a parent, I was deeply disturbed - I found parts of it extremely difficult to watch and am glad I had my friend next to me to comfort me. Images of Teddy undergoing "feeding therapy" and gagging are still burned in my memory. Oskar being injected in his buttocks with vitamin B12 just make me sad.

On the plus side, I am glad I saw it because it represents what I believe so many Canadian families go through. We are still such an ignorant and ableist society that we don't leave room for difference. Because of this, parents are absolutely terrified by autism. They don't understand autism and have never spoken to another autistic adult. They see no hope.
Because I am so well-surrounded for the most part by people who accept difference, I forget there are still those parents who are parenting out of fear and ignorance. But this is reality and they are in the majority.

Unfortunately, autism has become an industry based on fear. People charge thousands of dollars to apparently "make children indistinguishable from their peers" and parents fall for it because they're terrified of who their child will become.

It makes me sad for them because they are stressing themselves out, they are stressing their marriages, they are stressing their children, and they are emptying their bank accounts - all because of their misunderstanding of autism.

At the end of the year, the father decides to go back to work, and the mother seems to be more accepting of Oskar.

I don't know what this family will do in the future, but I hope they find a way to be accepting and happy. It makes me want to work even harder to destroy the myths and fear, and create a society that is truly inclusive so that this family's story doesn't have to be the norm anymore.