Tuesday, July 12, 2011

Stuart Duncan: Father and Autism Advocate

As readers of this blog know, I try to keep this blog personal because I only claim to know and understand my personal experiences. I'm not comfortable straying far from what I know. However, there are a few voices I believe my readers should hear and read if they want a better understanding of autism spectrum disorders.

Stuart Duncan is a father of two sons, one with autism. He also has a wife with some physical challenges. You can read his reflection on autism at his website:
Autism from a Father's Point of View: http://www.stuartduncan.name/
Follow Mr. Duncan on Twitter: http://www.twitter.com/autismfather
Everyone should spend a few days (and yes, it will take you days) reading the blog and information posted by Mr. Duncan. He has provided a frank and detailed account of life as a parent to an autistic child. It is the single best parent-authored website I have found. I don't say that lightly, because there are many thoughtful blogs by parents. Unfortunately, there are also some bitter, angry blogs by parents.

The following email interview asks questions I've wanted to ask Mr. Duncan. I hope these questions help others understand his experiences as a parent and advocate, too.
Q: You write of the sacrifices made to ensure the best in services and supports for your son. Some parents at conferences tell me these sacrifices risk causing a sense of resentment among friends and family. You seem to have dealt well with these stresses. (I'm not a parent, admittedly, and don't always comprehend what my parents did. I do try to appreciate their sacrifices, though.) What would you tell other parents about coping with the emotional, physical, and financial costs of autism?
A: Well, first of all, it's true that it does hurt your friends and family. My mother hasn't seen her grandchildren in over a year because we moved too far away. But she understands too. She understands that she shares in our sacrifices. It's not just me that wants the best for my children, my friends and family do too and if that means that they almost never get to see us, then they are willing to do it. And to be honest, if they're not willing or able to understand and make those sacrifices for the better of your child, then you have to really consider if they're worth sticking around for in the first place.

When I tell other parents about how we sold our house and moved far away, almost every single person's reaction has been "well, we could never do that." I can't help but wonder why these people think it was any easier for me to do than it is for them. I mean, I lived close to family, all of our friends were there, my boys had friends there.. we owned the house, my job was there. On top of that, we had no money. Seriously, it was NOT an easy decision and it was an even harder thing to actually do. Friends helped pack our house for free. Friends helped pack the moving truck, for free. Friends took our furniture, BBQ and other items that we couldn't bring. We literally got here with next to nothing, having to take hand me down furniture or buy $100 stoves in yard sales.

What would I tell other parents? Stop making excuses and make the sacrifices. It's never easy and it's never easier for someone else to do. So when you see someone else do what you wish you could have done... don't make an excuse, do it.

My son is doing so very well. And it's because we made that decision and made that move. Instead of saying "we could never do that".. we did it. It was the best decision we've ever made.

Q: How did friends, family members, and colleagues react to learning your son was autistic? Is the education process ongoing or did some people decide they didn't want to understand?
We have, as I suspect many people do, some family members who reject what 'those doctors' say. They don't believe studies and they don't believe the latest "fad problems", as they put it. And so, for a long time, we had people telling us that our son was fine, he just needed more time.

There's generally 2 points, I've found, where family and friends have that "ah ha!" moment. The first is when they get to spend the day with us. Not just an hour or two, but a whole day. And you spend that time with them and show them the things they've been missing. Not just the delayed speech or repetitive behavior (because these things can happen to any child) but when you point out those with all the other things through out a whole day, you can start to see the pieces fall into place in their heads.

The second point is when you sit them down to watch a movie like Adam, Temple Grandin, Loving Lampposts or some others (NOT rainman!). Quite literally, after my sister in law watched Temple Grandin, she broke down crying, saying "I'll never force Cameron to hug me again!"

She really got it.

We've made it a point to try really hard to make sure all of our family see the films and spend a lot of time to understand him. And of course, I'm a pretty vocal advocate so I'm always trying to drive the point home, subtly. You know, once in a while mention how each child is different, how Autistic children are vastly different from other children and so on.

We still get the occasional "are you sure he ever really did have autism?" question, or something along those lines, because he's doing well now and those people tend to only get an hour or two with him... it can be frustrating. On one hand, it's a compliment towards Cameron's progress and hard work as well as our hard work. At the same time, it's a slap in the face. But they mean well so you have to accept it for what it is.

Q: Did other parents offer you lots of advice on which treatments and therapies to seek? How did you sort through the advice to decide what was worth investigating?
Oh yes, and I still argue that this is the biggest strength and weakness of the autism community, is it's passion. When mama bears (and dads) are taking on the world for the sake of their child, there is a lot of passion there that helps them to move mountains. The problem is... are they moving the right mountains?
Unfortunately, there are a lot of snake oil salesmen out there... whether they are just in it for the money or they actually believe their treatments work, it doesn't really matter. Many times, these people (not always doctors either) come up with something they believe works and push it on parents that desperately need something to work.

You end up with doctors using chemical castration on children, electro-shock therapy and more.. but what's worse is that parents buy into it, do it and see results. They don't actually see results, it's just that their children are maturing and developing. But they believe it's the treatment through and through and so, with that mountain moving passion driving them, they don't just give you advice... they push it down your throat. You HAVE to do it!!

For new parents, or just cautious parents, this presents a huge obstacle. First, you try to believe the doctors but find you can't so you turn to your peers but it turns out that you're not going to do any better.
Unfortunately, the only recourse for people is to do homework and lots of it. Every time a doctor or fellow parent gives you a name of a drug, therapy, therapist or anything else that you can type into Google, do it. Do your absolute best to find all of the good about it, do your best to find all of the bad about it. Put it all into a pile and decide for yourself if it's safe, if it's a risk, if it's worth trying, if you can afford it and so on.

You're going to hear people push diets on you, oxygen treatments, drugs, specific therapies and so on. Some cost a lot. Some are very risky. Some don't actually even help at all. None of them "cure" but some do help some people. The thing is, no one treatment helps 100% of cases.

That means that even if you do find that one treatment helped 999 out of 1000 people you talk to, it might not help you. You're going to have to put in the leg work, do the research, do the trial cases at home (if you deem it worth the risk/price) and you're going to have to judge the results for yourself. There's no one else in the entire world that can do it for you.

Q: You website explains your "Autism: Awareness is Not Enough" campaign well, and you've created a Facebook group for Understanding at Acceptance: http://www.facebook.com/AwarenessIsNotEnough  
My experience has been that too many autism advocacy groups are unable to avoid contentious issues and end up "aligned" with one movement or another. How do you advocate without getting mired in these debates?
I refuse to take sides, always have. Must be the Canadian in me.

Autism is such a funny creature. It looks, smells, sounds, feels and tastes different to everyone. So why does it have to be that all autism is caused by genes, all autism is caused by vaccines, all autism is incurable, all autism is curable and on and on and on?

The thing is, you have to separate yourself from your own little world. Take a look around.
Yes, my son is doing well and I think he'll have a good adult life. Because of that, I would never try to take autism away from him. He does not need a cure. It helps to make him who he is and if he works hard, and I work hard, maybe it can even become a benefit to his life.

But it's simply not that way for everyone. For some people, it's very much a life long, life taking disability. Many people are never able to speak, use a toilet, feed themselves... should I hate those people for wanting a cure? No. My son is doing fine, that doesn't mean I have to push my opinions on them.
They deserve my help and my support. I'll gladly do what I can to help those people find a cure, if I can. That doesn't mean that I am forsaking my own child, it doesn't mean that I'm not happy with who he is or how he is.

The problem, as I see it, is going back to the passion thing. Once people see a cause, they attach themselves to it and then there is nothing else. It's only vaccines, it's only cure, it's only neurodiversity, it's only genetics, it's only environmental.... with people like that, you can see it in them. I've had one person talk to me about one thing, over and over and over... I literally said "can we talk about something else? Anything?" and they said no and unfollowed me on Twitter.

It's not that I didn't support them, it's that their mission wasn't my mission. My mission is my child and as an extension from him, all people with autism. Cure some, help others, empower others and give everyone the best shot at a good life that we can. If that means embracing and supporting all sides, that's what I do.

Because autism isn't black or white. There are no sides to a spectrum.

Q: You definitely love your son and have become a strong advocate for all autistics. When did you realize that your writings and public appearances were affecting larger audiences? Did that realization change your advocacy, as you were suddenly speaking and working for an entire community?
At first, my blog was primarily my son and I... talking about what we do, what I learn and so on. Along with that, I would have the odd post here and there where I share general thoughts. Something that I feel is insightful, educational... something we might all relate to.

Somewhere along the way, the blog has kind of flipped where I write mostly insightful/educational stuff and only occasionally write about actual father/son stuff. I still reference him all along the way because he's my foundation in learning/experiencing the autism world but more so, I write to the community now rather than just keeping a diary.

I'm not exactly sure when it happened though because it still seems rather surreal to me. When people message me or tell me that I'm inspirational or when they write about me as a leader in the community... I don't know, I have a hard time with that. I mean, I say thank you and all, but really, I'm just a dad... I'm just a parent like everyone else and I'm just a guy learning as I go, doing my best.

I don't really even see myself as an advocate, even though that's exactly what I am... but advocate, activist... it's not my goal. Being a parent is my goal. A fellow parent along with everyone else that needs some help, support and advice. I love to read other blogs, I love to ask questions. Many times, a blog post of mine is a result of a question I've asked. I write it after I get a few dozen or even hundreds of answers. I might have had a thought on it, but I didn't have the answers. Enough people inform me, I share what I've learned.

Which means we're all equals. I'm not sharing anything that people didn't already know. They're the ones who told me!

If anything, I think it's my ability to stay in the middle, to not choose sides, to hear out everyone and take the time to understand everyone's motivations that helps the most. When I ask a question, I don't dismiss the responses that I don't agree with or that I didn't want to hear. I include those in my posts.

That helps, I think, to relate with everyone that comes to read my blog. I might not agree with some of the answers I got, but it's not my place to tell them they're wrong. I include what they have to say.

Q: I suggest parents to follow your blog, your Twitter feed, and Facebook pages. However, I also encourage autistic teens and adults to read your page to better understand parents. What do you think autistics, including me, could better understand and appreciate when parents discuss autism?
Parents, for better or worse, are the gate keepers. No, we don't know what it's like to have autism or to live with autism, but we're the closest thing you have. Not doctors, not "experts" and not authors... but parents that live it second hand. We learn how to cope with meltdowns in order to teach our children to cope. We learn how to recognize what will cause over stimulation so that our children can recognize it and avoid it. We learn how to build routines for our children so that they can live with routines.

A parent is an adult, but a parent grows with their children. You become an entirely new person. You start as a grown up and over time, you become a parent. You develop a bond and understanding that is pretty powerful and even though you don't become autistic yourself, you come to know autism better than anyone else ever can without actually being autistic themselves.

The problem is that, as I said, autism is so very different from person to person that parents can forget that it can be so very very different for another parent and child. In their own way, they're doing their best and trying their hardest and they're fighting for you. Maybe they have forgotten that not every autistic person is a savant, or average or "low functioning"... maybe they forgot that not every child isn't exactly like their child is... but that doesn't make them a bad person, just a little misguided. Don't hate them. Their best intentions are driven by a lot of passion.

Most parents remember the differences, most parents remember that it affects adults and teens too. But we all stumble sometimes. We all forget sometimes. It's easy to become consumed by your own little world when your child is your world.

Please be patient with us. We're getting there.

Q: Autism communities divide along several lines, from "severity" to theories of causation. It seems many parents turn on each other at autism conferences and support groups. I've overheard some vile comments. Is there a way to bridge some of these differences?
My first attempt at bridging that gap was to have every single person in the community to write a common letter, where the last part of the letter began with "this is what autism is to me:" and they'd fill in the rest. The idea being that if hundreds of people read hundreds of letters... people would realize or remember just how extremely different it is to everyone.

Autism can be beautiful, ugly, a gift and a curse. It can be so many things to so many people. And we all need constant reminders of that.

Autistics need to remember that other people with autism are not like them. Parents need to remember that other parents have a very different situation with very different children.

We all have reasons for believing what we believe and feeling what we feel. No one has any right to invalidate that in others and to have it invalidated by someone who has no right.. is quite enraging.
Passion... our greatest strength.. our greatest weakness. Passion leads us to hate each other sometimes. It makes us stop listening to other people who don't share our passion.

We need to keep the passion strong, to learn, educate, support.... we can't stop listening. We can't judge each other. We certainly can't hate each other. That's not what passion is for. It's not what passion is about.

When you see someone make a hard decision that you don't agree with, instead of hating them for it, lend them a shoulder to cry on. You don't have to understand their decision to support them. Not understanding doesn't give you a right to judge them.

Isolation is not the answer. We need to spend more time together, more time listening to each other. We need to take the time to at least try to understand the things and people we don't understand.

Understanding doesn't mean we agree with it. You don't have to agree. Just take the time to understand.
When that happens, I think our differences won't seem so large and with more understanding, there will be less hate. At least, that's what I hope for.
I want to thank Mr. Duncan for his answers. He is busy with his own business, in addition to being an autism advocate. I know my readers also thank him.

4 comments:

  1. Thank You Stuart. I will work hard to keep your wise words in mind because I know at times I have been blinded by the passion to find answers and support for my family and community. TannersDad Tim #UWAC Unity within Autism Community #FAY Feel Autism Yet?

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  2. I'm wondering, is Stuart the same father that also writes on

    http://www.autismstreet.org/weblog/?p=17

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  3. Nope, that's not me.

    Thank you Tim (TannersDad)!

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  4. I really liked this. A very balanced view. And a good new site for me to read.

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