Archive | July, 2011

How the media creates civil war within the autism community

media

The Media

Nothing much gets my blood boiling more than outright, obvious attempts to pit people against each other. I wrote about it before about how we do it to ourselves but the most obvious problem is the media.

We’re all well aware of the practice of sensationalizing a headline to entice the reader… to get at least one more pair of eyes on them rather than the competition.

But when I saw a headline tonight and clicked on it, I was appalled. Not just because the headline didn’t match the story….

What’s wrong with this story? Let me count the ways!

In the news tonight, I came across this story: Autism Risks: Genes May Not Play Biggest Role

Let’s begin:

  1. The title makes a rather bold statement which, other than the first paragraph, the story does not support. It states “it suggests factors other than genetics are at work” but in no way suggests that those “factors” would “play biggest role.”
  2. Dr. Joachim Hallmayer says “About half of what we see is due to environmental factors, and half of what we see is due to genetic factors” and then goes on further to say “being male is the most significant risk factor we know of.”  So the “biggest role” to which the title is alluding to is gender… which is… not… genetic?
  3. How old is this story anyway? Well, if you hit Google News to find it… you’ll find about 600 other reports on this… from July 5th!! That’s 25 days ago. Why is this story coming out so much later? Without even referencing the “twin study” in the title? Oh right… to get readers!

Now, all that said, the biggest issue I have is this…. Does the headline really tell the story? As I said in #3… there are over 600 news reports on this according to Google News, more if you use other search terms. I only skimmed the first page of results but here are some of the headlines…

Keep in mind that all of these headlines are for the SAME STUDY

  • Autism Risks: Genes May Not Play Biggest Role
  • Twin Study Points to Upbringing, Not Genetics, As Cause of Autism
  • Autism may be environmental, but it can also run in the family
  • Study: Environment plays larger role in autism
  • Autism triggered by environmental conditions, not just genes, says studies
  • Call for answers as research puts environment in the autism mix
  • Study: Environmental Factors May Be Just as Important as Genes in Autism
  • Study: Nurture, not nature, prominent in development of autism in twins
  • Reasons for autism in twins

Can you see just how wide of a net the media throws over this? In some cases, it’s all environmental, in other cases it’s “in the mix” to other articles that suggest it’s upbringing and nurturing that is “the problem.”

By the way, I love that last one. It’s from the “Times of India”… which I have rather enjoyed reading… here’s an example why: this is from their first paragraph:

A new study has found that apart from genetics, pregnancy and birth environment may also affect development of autism in twins.

Brilliant, non biased, no assumptions, no telling the reader what to think. Love it.

Does this happen often?

Unfortunately, this happens far too often with news stories as it is but within the Autism community, it’s almost like it’s par for the course.

It happens with just about every study that is released… which from what I can tell is about 1 per month. Some of the more prominent studies of recent years for the Autism community include divorce rates and diets.

Remember the study that suggested that there was “a higher rate of divorce” (pdf) for parents of autistic children? Then last year, a new study was released that said “80 Percent Autism-Divorce Rate Debunked in First-Of-Its Kind Scientific Study“… it was simply untrue. Or was it? Which do we believe?

The gluten free diet was in the news for a little while where scientists said “A Gluten-Free, Casein-Free Diet No Remedy for Autism.” The Mayo Clinic even went so far as to advise against it unless you’ve made especially certain with your doctor and/or dietitian. Meanwhile other articles such as this one clearly gives you references from PubMed which show that the GF/CF diet actually does clearly reduce some symptoms of Autism.

Where does this leave us?

Unfortunately, this leaves us to fend for ourselves but we’re not doing so well. We read news story headlines such as the one released today… 25 days later… and that title leads us into the story with either a preconceived notion of what to believe… and we believe it… or a complete contempt for the media and the people who would blindly believe it.

By the way, I don’t just mean the people who blindly believe this one particular news story I’m referencing today. I mean…. the people who believe any, or specificly certain articles out of the 600+ that were written about this one study. People will blindly believe which ever study has the most sensational, most hard hitting and more “says what I want to hear” headline they read no matter what the story says, no matter what the doctor is quoted as saying and no matter what anyone else tells them about the study.

And we fight… among ourselves… and I hate it. I hate the media. I hate what they put us through. I hate what they do to us.

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What a difference six years can make

Yesterday was Cameron’s birthday… the day he was born… 6 years ago. I originally started writing this post yesterday, to be posted on his birthday but we did so much the whole day that I never did get that chance.

Even though he’s taller than many nine year old children, he’s still and always will be my little boy.

If you have a few minutes, I’d like to give you 6 years.

Once upon a time, I think it was a Thursday…

cameron 0 days old

Cameron - 0 days old

Showing up at the hospital at 8am on the 27th, my wife was “induced” at 11am… wait, wait, wait, push, push, push… my beautiful little boy was born 14 hours later, after 1am on Thursday morning.

That whole first year was amazing… having this little baby sleeping on my chest as I lie on the couch, feeling his little fingers grab onto my finger.

It was everything that parenthood was meant to be. Even the 3 hour feeds all day and night. Friends and family would look at me with this wide smile, sarcastically asking how much sleep I was getting or how tired I was… to their disappointment, I was more than happy with how it was. I don’t even remember how much sleep I got, all I know is that I would have been happy being awake for the whole year… so that I wouldn’t miss a thing.

I loved it.

Enter the villain of our story

first birthday - cakeOn Cameron’s first birthday, my wife had this wonderful vision of a smashed up birthday cake all over the place. She had one made with 2/3 icing and only 1/3 actual cake… this makes it easier to get little fingers into and spread around.

But that didn’t happen. It turned out that we had the only little boy in the world (or so we thought at the time) that didn’t like to get dirty. My wife took his hand and buried it into the cake, which fascinated Cameron but again… it wasn’t what we had hoped for.

With the help of some off camera funny faces, we were able to get the picture that we thought would make it all… “normal.” It was what we had to do to get what we wanted. Not what he wanted.

On top of that… his entire first year was without any words, toilet training and without any more snuggling on the couch together.

His first year, he had to spend a good 20-40 minutes with me on the couch at the start of each day or else he’d be upset.

That hasn’t happened since.

The battle begins

After Cameron turned 1, he spent most of his time separating blocks by colour, lining up cars, flipping them over to spin the wheels, doing his Thai-Chi and other very unusual and repetitive behaviours.

I spent a fair portion of that year doing research and when Cameron turned 2, I asked our family doctor for an assessment.

He told me that Cameron was a bright boy, that he was likely just going to be a late talker and recommended we just wait.

We respected his opinion but insisted anyhow… 6 months later, I was in Toronto with Cameron, visiting a hospital.

Cameron in the news

Cameron in the news

During Cameron’s assessment, Cameron shocked me. Almost even worried me…. he spoke!

The doctor took out a little bottle, a little wand and filled the room with bubbles. To my complete and total surprise, Cameron said “bubbles!”

To be perfectly honest, and the reason I say it worried me, was that this.. of all times, would be when he speaks. That these people would look at me like a neurotic parent that was just wasting their time or worse, making things up. See, I had told them that Cameron can’t speak. He just proved me wrong… right in front of them.

How embarrassing! Wonderful… but embarrassing.

It turns out that I didn’t have anything to worry about because they diagnosed him with PDD-NOS, on the Autism Spectrum. One word certainly isn’t enough to fool a doctor out of a diagnosis… I know that now, I didn’t then.

Fast forward a bit

I’ve written previously about the 3 year wait lists we were put on, the $150/hour speech therapy appointments… how my wife took it upon herself to learn the treatments and therapies so she could do it at home…  I’ve even written several times about how we gave up our house, everything we had and moved pretty far in order to get Cameron into a special school where he could excel rather than regress… so I won’t repeat it.

I will, however, tell you about something amazing.

When Cameron was diagnosed, despite having said one word… they told me that it’s entirely possible he might never have “normal speech” and even if he does, it’s even more likely that he’ll never be very good at social interaction and communication.

We were told not to be too disappointed or hard on him if he just can’t grasp toilet training.

Essentially, we were told not to expect the worst but to be prepared for it. Cameron may never progress, he may progress and then regress… anything was possible.

Cameron proved them wrong. Not us, Cameron did.

Truly inspirational

Cameron iPad

Reading Cat in the Hat

I will never deny that my wife and I have done a lot to get where we are.. we’ve never given up and always tried our hardest. But the truth is that the real person responsible for where Cameron is today is Cameron.

At 6 years old, Cameron is reading Cat in the Hat books himself, he has friends, he’s doing well at school, he can ride a bike now (for the most part), he can finish video games, he speaks in complete sentences (he even says “You and I” instead of “me and you”!!)… he’s doing exceptionally well.

That’s not to say that he doesn’t still have his issues… his senses are still very sensitive, he still needs his specific diet, he still gets overwhelmed quickly and needs quiet time… you get the idea.

I try my best to support people, give them positivity and even inspire people as best I can but the honest truth is that the real inspiration is Cameron.

It’s just simply amazing to think of how well he’s doing despite all of the things I was told almost 4 years ago. He’s overcoming obstacles, he’s smashing through barriers. He’s never giving up.

I don’t just say that as a proud parent.. if you ever get to meet Cameron, you’ll see it in him.

Never Giving Up

As soon as I could have actual conversations with him… I would ask Cameron “What do you do when you fall down?” and his very simple answer was “get up”.

I asked him that at least 2 or 3 times a week, for over two years now. Half the time he answers on auto pilot (without thinking about it), the other half he is always happy to answer because I always praise him so much for being right.

He didn’t learn that from me. I learned it from him. All I ever do is remind him.

Cameron didn’t learn to ride his bike until he was 5… he started learning when he was 3. It took a long time but he never gave up. Cameron had a very hard time playing any sort of video game due to poor motor control but a year later, he could win most races at Mario Kart Wii.

Reading, writing, math, puzzles… it never mattered what it was, he would do it every day, on his own, never willing to give it up.

It was really quite easy for my wife to sit him down to learn the alphabet or numbers or how to do tasks because he was always eager to learn them and no matter how hard it was, he was always eager to keep doing it over and over.

And if there is something he can’t do, if a bad guy in a game can beat him… he gets mad. Not meltdown mad… just… mad. When that happens, there is no turning off the game, there is no doing anything else. It drives him.

No matter how inspiring people can be, no matter how much wisdom they have to share with me… no one inspires me as much as Cameron does.

My hope is that one day he’ll be able to look back on this blog and anything else I do and realize how much he has done for me. I’m so very proud of him.

Cameron - 6 Years Old

Cameron - 6 Years Old

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The Amazing Race to Understand Autism

This post is dedicated to a young man, who’s Eagle Scout project is to not only raise awareness but to give people a very unique perspective into Autism that will go a long way to their understanding and acceptance.

Justin is 14 and his older brother Gregory, 17, has Autism… the kind of Autism that makes it difficult for him to tie his shoes or speak.

Justin had the idea to have an Amazing Race style fundraiser where, not only do you race, but you also complete tasks designed to make you struggle as though you had motor skill issues, language impairments and so forth… so that you can better understand what it’s like for his brother and others with Autism.

The only downside I can see to this is that it’s local to Sammamish, WA… which means that only a certain number of people will likely be able to get involved. The reality is though that this really needs to become a national project… much like Autism Speak’s “Walk for Autism.”

I am quite impressed with the local media for not only picking this up but giving Justin and his family good quality time to explain it. That’s really very decent of them. You can view the news clip here: http://www.king5.com/new-day-northwest/The-Amazing-Race-to-Understand-Autism-126210108.html

All of the proceeds will go to Autism Speaks.

If you are in WA, or willing to get there for this event on August 13, you can visit his website to register at http://raceforautism.wordpress.com

Even if you can’t get there, let’s show this boy and his family some support for such a wonderful idea.

 amazingredbluelogo

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Autism Advocacy – Some ideas to get you started

autism ribbonI have been rather fortunate to be able to write for not only my blog, but also some pieces for several other blogs as well. It turns out that writing is something that I rather enjoy and I can even be proud to say that I do quite well.

It occurred to me though, that not everyone is a great writer… or comfortable with public speaking… but that doesn’t mean that they can’t be a great advocate. Some people find some great ways to advocate while others still struggle to find what works for them.

So I thought I’d put together some thoughts and ideas in ways that you could help be the advocate you really want to be even if you have no formal training or previous expertise.

Every day life

Probably the most recognized and frequently used method for advocacy is simply to live life with Autism or with a child that has Autism. You’ll find yourself explaining it to friends and family, you’ll find yourself correcting others or volunteering information when people ask… sometimes you might even have to explain yourself or your child in a public setting if something embarrassing happens.

When you live it, you advocate it simply by walking out your front door.

Don’t be afraid to answer questions, don’t be afraid to offer information. You don’t have to have all the answers, just your own experiences. Explain how it’s not the same for everyone but you can offer your own knowledge on the topic.

People are very receptive, people are often very willing to learn. You don’t have to advertise it but don’t hide it either. When someone shows an interest, speak up.

Wearing Autism Merchandise

Wearing something on yourself is not only a subtle reminder to people but can be a conversation starter. There are a lot of choices, some people even opt to get a tattoo!

What ever it is you do, don’t go overboard. The last thing you want to do is annoy people with it. So keep it smart, keep it clever and even classy if you can. Funny is good too but can be offensive to some if you’re not careful.

Ultimately, so long as you’re not annoying anyone… do what ever looks good on you.

Volunteer

Most charities and events are non-profits… meaning that they don’t do what they do to make money, they do it to fund research or support families.

That means that they could really use the help, since they have no extra money to pay people. And usually it only involves and afternoon or just a few hours but your help would be invaluable.

In these instances, I like to think of it as the worker bee scenario.

Events, such as concerts, walks, bbq’s, etc take a lot of people to pull off properly. Whether it’s flipping burgers, getting people’s names… what ever.

Each and every little job is not only important, it’s necessary… and if they can’t fill those spots, the entire event could be in jeopardy.

Your help, whether big or small, for hours or days, is a big part of it’s success. If you can’t afford to donate, if you can’t be a public figure… just pitch in and help out. It’s needed more than you know.

Local Support Groups

Every community, big or small, has at least one local support group. Those groups usually consist of people with valuable information that you can learn from but there’s often people there that have no information, that need information… that feel quite lost and alone.

Someone at that meeting will likely step up and help those people out… that someone could be you.

You don’t have to pay their mortgage, just help them to realize that they’re not alone. Give them some friendly advice, a shoulder to lean on…. take an hour or two to be a part of a team.

You could learn, teach and grow, all the while making friends and maybe even new friends for your children.

Donate

So maybe you don’t have a lot of time but you are able to muster $10 or $20 here and there… donate it. Keep the receipts for your taxes.

Charities do some amazing work but they don’t do it all on their own. They need donations from people like you and me to fund the work they do.

Also, no matter how hard you have it, there is always someone or an entire family out there that has it worse. Those people struggle far more than you or I could even imagine and they need support far beyond what you or I could give them as individuals.

That’s where charities come in. They pool those donations and build valuable support for those families using the donations from us all.

You don’t have to donate hundreds, every little bit helps.

Take part in the events

I mentioned volunteering to help events run smoothly but it’s also just as much of a help to actually take part in the event… like a walk or fundraiser.

The AutismSpeaks Walk for Autism events have proven very successful in raising donations as well as general awareness all over the world. And all you have to do is walk.

Several other charities and even just local businesses and people right in your own city hold events all the time. Find them, get involved. You don’t have to work if you don’t want to. Just be there.

In fact, you don’t really even have to be there. Help get the word out about them. Tell friends, post to your social networks…. if you get 2 other people to take part in it, you’ve doubled what you could have done just by being there yourself.

If you do get 2 friends to do it and do it yourself too… well, you can see how something relatively small can grow to something very big and very worthwhile very quickly.

Make up something, do what you do best

As @OperationJack says: “Whatever you do best. For me, unfortunately, that requires running waaaay too much.” He’s a marathon runner. When his son was diagnosed with Autism, he decided to run to raise awareness as well as donations. He ran over 61 marathons in 2010!

Another Twitter member, @invisaWriter suggested: “if you know how to plan a killer party you could do fundraiser dinners, or maybe you can organize boxtops for edu. collections”…  not a bad idea!

Use your strengths… even if what you do has never been used for advocacy or fund raising before, try to put some thought into it. You can make it happen!

We’re all equals

I often marvel at how public speakers can travel the country, helping people all over…. or at book writers who can produce amazing pieces of literature that informs and even inspires.

The truth is though, when it comes to being an advocate, we’re all equals.

From talking to a neighbor about Autism to telling the country on national television, we’re equals. We do the same thing… we inform. We have the same purpose, to inform.

The only number that is important to an advocate is 1. If you can inform 1 person, if you can open the eyes of just 1 person, if you can make just 1 person recognize the difference…. if you can inspire just 1 person to want to make a difference…. you’ve done your job.

Whether you write, speak, walk, donate, volunteer… what ever it is you do, your goal is to reach out to 1 person and have them understand.

If you can do that, do it again and again and again… always aim for 1. Before you know it, you’ll have reached hundreds, maybe even thousands.

Ideas from you

I asked this on several networks, here are some of the responses I received.

Sometimes the most effective thing you can do is just be 'out there':
live your life openly, don't try to hide it or be ashamed of it.
It is what it is. You can also give moral/financial support to
others who can go out and speak, write books, etc.

Answering people's questions as they are asked. Wearing Autism Awareness
stuff, my brother got a tattoo to help raise awareness and has become a
conversation starter...

I've been helping make a local Asperger Support Group for Adults and
Children become a 501(c)(3) organization. A lot of work, but it's so
rewarding when we see the families we help!!

I agree, to speak up when people ask questions, to tell people about your
journey. I have been amazed and overwhelmed how people want to listen, get
involved and even donate money to try to help my son be able to speak! I
used to lock myself away and at one stage became very isolated and
defensive. I turned my life around when I took positive action to raise
awareness of autism and what I'd been going through, people all of a sudden
became understanding, supportive and encouraging! Search for Time to Talk
Liam on Facebook to see what ive been doing. People don't understand,
unless you tell them, it's just not possible for them to understand
without you telling them. I'll keep speaking out for my son, until the day
he is able to speak himself! And even after that too probably!!!

I'm an autism advocate in that I ensure that my daughter gets treated like
everybody else, no matter what I have to do. :)

If there is no local clearinghouse for info on ASD and how to handle,
start one.
Please feel free to share your ideas as well!
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Vaccine Math

vaccine mathAs you may or may not know, I try to avoid this topic but sometimes, for the health of those that are unable to protect themselves, I feel the need to speak up.

Recently I read a news article about how the “Vaccine Mistrust Spreads To The Developing World“, where obviously a news story from a place like Afghanistan can be completely accurate or a total farce. I have no way of verifying any of it.

However, it is very concerning and down right scary to think that people would be choosing to brave Polio than take the (unfounded) risk of Autism, or any of the other associated risks of being vaccinated.

(I included a link to the Polio wikipedia page because I think it’s important to take a minute to recognize just how devastating Polio can really be)

Vaccine Math

Now, this isn’t exactly math so much as a comparison but just follow me on this for a moment:

Your options:

  1. You know that vaccines prevent X, Y and Z… and despite the fear that it may cause Autism, you get your child vaccinated.
  2. You deny vaccinations for your child and now risk contracting X, Y and Z… and despite the fear that it may cause Autism, your child could STILL be Autistic.

Summarized:

  1. Your child may become Autistic.
  2. You now risk contracting X, Y, Z and becoming Autistic PLUS you also put babies, children and others at risk of X, Y, Z that are not yet or unable to be vaccinated.

Outcomes:

  1. A child that may become impaired/disabled, with a possibility for life long dependence on a guardian/care provider.
  2. A child that may face illness, life long health issues, neurological impairment/disability, disfigurement, paralysis, death… PLUS, you also put babies, children and others at risk that are not yet or unable to be vaccinated.

The Logic

To me, the logic is pretty straight forward.

I’m not saying that I don’t recognize the rather questionable ingredients that are used… I’m not saying that vaccines couldn’t be safer.

However, to not vaccinate for fear of Autism really makes no sense to me at all. Mostly because even non-vaccinated children can be Autistic. But also because of the HUGE RISK in doing so.

And it’s not just your risk. You put others at risk as well. A baby may not be able to survive a battle with vaccine preventable illnesses… people with weakened immune systems may not be able to survive them either. They are either not yet vaccinated or unable to be vaccinated. They depend on you and I.

Safe Vaccine Advocacy

Being pro vaccine safety is entirely different than being anti-vaccine.

If you push for safer vaccines, I’ll support you. Even vaccine makers can admit that they could be safer.

Safer schedules? I’m no scientist. I can find articles arguing back and forth, from doctors no less, so I’m not in a position to say but I don’t question it so long as the vaccines are still given.

I’ve written about this before, I’ve also taken a stance earlier this year and this post is an extension of that stance.

Not saying something might mean another innocent baby being infected with whooping cough, or further measles outbreaks.

Don’t react emotionally, don’t base life and death decisions on a Youtube video. 

Do the math for yourself and ask yourself, what risks are you really avoiding and more importantly, what risks are you really taking?

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