We're Not As Divided As You Believe

Image of a man icon on a circular gradient chart with sections of varying shades of pink, with black text which says "a community divided?"

If you speak to a lot of parents of autistic people, you'll hear many excuses for why they don't listen to us as authorities of the autistic experience. Aside from the whole, "you're not like my child" (well no, we've grown up), I'd say the most common way to try to discredit us is by saying our community is divided.

And I'm going to jump in here as someone who's very active in the community and say NO. That is not the case. If you choose to believe that, you're just making excuses. 

If anything, you are the one creating a divide by not listening to the many of us who are speaking. It's also amazing to me how much energy many would rather spend trying to come up with excuses for not listening to us rather than just listening to us. 

When I speak to and meet other autistic people, I feel an instant connection. Not only that, but even if I don't agree with them 100%, I am totally able to see where they are coming from and why they think the way they do. (I can't say the same for dealing with NT people)

Do we argue amongst ourselves at times? Yes, we're human. Do we get very passionate in our debates? For sure! We are logical beings. We have feelings and emotions. We have a distinct need to be heard. Do we disagree on language? Sure, while most people prefer the term autistic, some people prefer to be called people with autism. No biggie. These are not major devisive issues.

By and large, do we agree that ABA is abusive? YES.
Do we have issues with Autism $peaks? Many of us do.
Do we want to be cured? Nope.
Do we believe in neurodiversity? Yes!

When it comes to big and important issues, we're much more cohesive and in agreement than many might think!

I see it as no different than the Deaf community - there are many for sign language and there are some for cochlear impacts and verbal communication. There's a whole overlap within there, but they are still a distinct culture. Do we discredit the needs of Deaf people simply because there is more than one way to be deaf or hard of hearing?
(Actually, I'm going to say society finds way to discredit pretty much any disabled experience, but I'm trying to make a point here.)

Look, the fact is, people can pick and choose what they want to hear and what advice they want to take, but do not discredit us as a whole, or tell us you just don't know who to listen to because you've heard more than two opinions. Get more opinions and listen to the majority - even if it's not what you want to hear.

Not All Opinions Are Equal

In another form of tone policing lives the statement: we all need to come together, get along, and all opinions should be respected.

Actually no. All opinions do not need to be respected. Not all opinions are equal.

You might have the opinion that killing kittens on the weekend is totally acceptable. I am under absolutely no obligation to respect your opinion. Just as much as you have a right to kill kittens, I have a right to tell you I think you're wrong. I am under no obligation to "get along" with you just because we also both happen to like the colour red. I am under no obligation to respect the fact you do it in the privacy of your home. All I can do, is report it to law officials and let them decide, but other than that, I don't need to respect your actions.

Similarly, some opinions are just wrong. I do not have to respect opinions that don't make any scientific sense. I don't have to respect people who shove bleach up their kid's ass because they think it will cure autism. Actually, I think that's child abuse, so no, I will not respect that.

I'm not really sure where this idea of "respecting" opinions comes from. I can agree to disagree with you and move on, but I have no need or desire to respect you or your opinions. Of course, you are free to do the same with me.

When we're talking about a divided community, no, I will not unite with people I can't respect. Especially ones who do harm. I, quite frankly, don't want you on my team or trying to represent me. Because you don't. We have about as much in common as a snail and a car transmission.

When it comes to the autism community, the ones who get the biggest share of the voice pie are actually Autistic people. Then come allies. I don't have to listen to the input of allies, but allies should for sure listen to mine. It's not fair, you say? Well, life isn't fair, is it? I get to be in charge of my story and that narrative, and if you want to help, the best thing you can do is to listen and repeat it. That's it! Your job is complete!

You don't get to change the story or tell me to edit my tone or delivery of it. You also don't get to blame me for dividing the community because you hear something you don't like. Either you're an ally, you're or not. If you no longer agree with the story, you don't have to keep reading it or repeating it. And none of that is my fault. You're in charge of what you do and I'm in charge of what I do.

The autism community is not divided, you just don't happen to agree with some parts of it, but the vast majority of us agree on the major points and either you're with us, or you're not. 

The Value of Good Neighbours

I grew up in the city - not downtown, but not far from the core. I was about 30 minutes away on public transit. Houses (duplexes - multi-family homes) were close together, if not completely attached and kids were everywhere. It was generally safe to run in the street (one time my sister actually lay down in the middle of it, much to the anger of my father when he saw her) and everyone's doors were unlocked all day long, as troops of children ran through. In summer, the sound of kid's playing outside did not stop until it started to get dark and the street lights came on.

All this to say, there was community. Though at the time our school system was segregated between the English-speaking Catholics, and English-speaking Protestants or others (since the Protestant schools were the only ones that would allow people from other religions in them), and the French Catholics, we all still played together on the street despite not attending the same schools. Our street was a wonderful mix of Blacks, Italians, Portuguese, Greek, French Canadians, Anglos and Indians, and all different age groups.

That community is missing now where we live. While the Little Man was born closer to the downtown core in a highly-populated part of the city, we opted to move to a part of the island a little further out, with a big backyard and a completely detached house. I didn't want to hear neighbours and noise. I always dreamed of a big backyard. But now, unfortunately, there are hardly any kids in sight. It seems that people keep their children inside, or maybe playing in their own backyards.

So when everyone is guarding their kids and helicopter parenting, I'd like my son to be able to experience the freedom of wandering around all day with a gaggle of other kids - getting dirty and into trouble. Going to the corner store to get candies (or see if we could get away with pocketing a box of Nerds), going to the park and the pool. See how fast you can ride your bike and how far you can get before you get lost. Running back home only when someone scraped a knee or needed a popsicle, or when you heard you mother yelling your name from the front door telling you to come in for lunch. To me that is what childhood is about.

I guess more playdates are in order to get around this, but I find parents reluctant to just leave their kids in our backyard. It could be because special needs kids are a little more sneaky at times.

Anywho, luckily we have a nice retired couple living next to us. The guy's name is Bob and the Little Man likes Bob, which is the reason I think he wanted to be called Bob for a while.

Probably because I gave them lettuce from our garden a few days before, the Little Man decided he wanted to give them an orange. Fine, I said. 'Go put on your socks and shoes and ring their doorbell.' While he was getting ready, we called Bob to give him a head's up - we're sending him over by himself to practice. He needs to ring the doorbell, say hello, give the orange and come right back. I wanted to warn them to send him back because otherwise he will get into a whole big long conversation and take up their whole afternoon!

At first the Little Man protested about not being able to put his socks on by himself. Well, I said if he really wanted to do this, he would find a way. We helped him a bit, but in the end, he did the rest. He opened the front door, orange in hand, and took off running to the neighbours'. Then we waited. And waited. We gave him five minutes and then I peaked out the front door. He was on their porch talking the neighbour's ear off.
I told him it was time to come back now. He finished his story and informed them how great it was they wouldn't have to buy an orange now and came running back home.

He came in and said, "I went over to Bob's house all by myself!" and was so proud.

This to me, is what summer and childhood is about. Testing yourself. Learning. Sometimes failing and bruising knees. Sometimes doing something new and being proud. This is what I want for him. Thank goodness for good, patient neighbours.

The Magic of Inclusion

I am proud to say I grew up going to inclusion schools. My elementary school included two smaller "satellite" schools within it. One for physical and learning disabilities and one the Deaf. It was normal for our teachers to wear an FM transmitter when teaching, in order to help those with hearing aids. It was also normal to have children in wheelchairs and using adapted desks. One of the first things I got to learn in Kindergarten was how to lock and unlock the leg braces of one of my disabled friends and get him back into his chair in the case of a fire alarm. I was his "buddy" and it was my job to push him out of the building during fire drills. (Of course, I was not alone, the physiotherapist also came in right away to help, but I took my responsibility very seriously and with great pride :)

Inclusion word cloud in shape of a butterfly

In high school, the school integrated into ours was for those with learning and behaviour disabilities. Wherever possible, these students took classes with us. Art, music, gym - we were all together.

For whatever reason, even as a child and not knowing I was disabled myself, I always gravitated towards those who were different, disabled or outcast. My mom always told me I rooted "for the underdog." Maybe I felt an affinity. Maybe those were the only people who would accept my own differences. I don't know, but I am grateful for those who were brave enough to be friends with a "weirdo" like me.

So in this way, inclusion saved me because it allowed me to have friends. While we're more aware as a society these days, and more children are getting better diagnosed and earlier, I'm sure some are still falling through the cracks. Despite that, even as a child, we still know we're different. Others know we're different also and tend to shun or bully us. But when you have inclusion, there is more of a likelihood these children will have friends. It's also a higher likelihood that those who are not disabled will be better aware of disability, less likely to bully, and more compassionate. Kids who go to inclusive schools are not going to be the adults of tomorrow staring at disabled people and making snide comments.

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I recently read about the Assertive Community Treatment model recently. A small town in Belgium integrates adults with mental illnesses into foster home-like long term living arrangements. It improves the health of those with special needs by making them feel like members of a family. They get a private room in a house and are less lonely, as a result.

As a mom, I wish we had a model like that here. After my husband and I are gone, I want the comfort of knowing my son will still have a "family" who cares about him. People he can lean on for support. Inclusion benefits all of society, whether you are disabled or not.

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You can read more articles about the town of Geel, Beligum here and here.

You can read a chapter of a new book about how children benefit from inclusion here.