Should you tell a stranger if you suspect their child may have autism?

Recently, the folks at Babble.com asked the question “Would you tell a stranger if you thought her child might be autistic?

parentsDepending on your convictions, you would likely answer it pretty quickly, one way or another but after putting some more thought into it…. well, let’s just say there are some very good arguments for saying yes or no.

As an example, let’s say you go to a community event where you meet new people and all of the children are playing. One child is not playing with the others, aligning toys in a row, making repetitive actions and the mother seems oblivious to any of this. She just thinks that her child is going through a phase or is “quirky” (we’ve all heard that one, right?).

Do you say something to her?

I’d like to go over some of the thoughts on this:

It’s none of your business

One of the most obvious answers and likely to be the most common is that it’s none of your business. They’re not friends, family.. you don’t know them. If they don’t know, that’s their problem. Let them figure it out in due course.

In theory, if you believe in that sort of thing, everything happens for a reason. If you interfere, you may be altering their course which could have been set for a reason.

But then one could argue.. perhaps you were there, at that time, to witness the autistic tendencies as part of that “everything happens for a reason” path and you were meant to say something…. hmm….

Either which way, is it your place to be making such assumptions of other people?

Will she be offended?

Most of us would assume that acting on behalf of your best interests would be a welcome and appreciated action however we all know better. Parents don’t appreciate other people pointing out their children’s flaws, much less giving them a label… certainly if that label is associated with a disability.

Some parents would even go so far as to hear “retard” in the place of “autism” and be ready to fight you for saying such a thing. Rightly so, the “r” word is not acceptable but many people still think that it and autism are the same thing.

Early intervention is passing them by

With every day spent in this “phase”, they miss valuable opportunities at getting treatments, therapies, financial aides, a shot at school support (IEPs) and so on. They are letting very valuable time slip by which means that in this case, ignorance is not bliss.

We all know the motto and there’s even a news story now that explains it well in terms of insurance coverage: Pay Now or Pay Later

Indeed, it is true. If that mother makes no effort to help her child…. what will the child’s future be like? If you don’t say something… their future could cost them a lot more than what some therapy would cost them now.

Are you certain of their situation?

If it’s a total stranger, chances are you don’t know. This person could be in denial, which means they know but don’t accept it, they could know but just not want to tell others (“a phase” sounds so much nicer than “disorder”) or this person could truly just be oblivious.

You really don’t know.

You also really don’t know if it’s actually Autism. Perhaps it’s something else (yes, there are other disorders which look similar). Perhaps, and this may shock you, it actually is just a phase. Yes, these things can be a phase in some children that they just move on from.

If you’re not a trained professional, and even then, it’s iffy, is it really your place to make all of these assumptions about their situation?

A responsibility to each other and our community

If you saw someone about to put their hands into a wood chipper… and you knew they’d lose their hands and struggle for the rest of their lives from that moment on… would you do something to stop it?

Do you have a responsibility to help others? Well, in the case of physical harm or death (dangerous situations), yes you do. In fact, you could be arrested and charged if you do nothing…. unless you’d be putting yourself in harms way to do it. Anyway.. you get my point.

In this case, it’s obviously not that black and white and Autism certainly isn’t life or death (although some would argue that with the number of wandering cases in the news continuing to increase).

But for the future of that child, maybe even the parents (if the child remains dependent for life) and even for the community around you that may have to pay for this child should he end up in a care home… if you say something now, you could help avoid all of that.

If you say something, the parent listens, a diagnosis is made, resources made available and all goes well…. the child’s life, parent’s life and even the community itself could benefit.

Conclusion – It Depends

Ultimately, there is no right or wrong answer.

Some situations are more obvious than others, some people seem more receptive than others, some people are better at broaching the subject with others… so the answer has to be… it depends.

Still though, I think the odds are that no.. you shouldn’t. There are more reasons not to than there are reasons to do it.

It’s unfortunate that autism still has such a stigma attached to it that suggesting such a thing would be so offensive.

Perhaps, as society grows and awareness (also understanding and acceptance) of Autism increases, maybe then it would be more acceptable to talk to a stranger about it like that.

I dream of a day when people are aware and unafraid to hear that their child may have Autism. Not that Autism is such a good thing but they know more about it and more about what to do should their child be diagnosed with it.

Right now, it’s still very much unknown among the general population. It’s a mystery. People know there is no cure. People know that it’s very expensive for therapies and treatments. People don’t know what Autism really is or that some people do live a very full and rewarding life with Autism.

With further education, with further understanding and acceptance, perhaps the answer to this question will be far more obvious… and far more positive. And when that happens, everyone will benefit from the kind word of a thoughtful stranger who only wanted to help.

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Autism and Google+: The potential for a new Autism Community

Google+ AutismI’ve been using Google+ for a little while now (being relative since it’s only a month old) and the way I see it, Google+ could radically alter the Autism Community online forever… that is… if it really does take off and people use it.

Let me tell you a little bit about how it’s different, some very powerful ways to use it and a couple of surprises at the end that I think will really intrigue you.

The advantage over other social networks?

Facebook lets you share with friends. You can start to branch out a bit but really, the people you reach on Facebook are people you’ve already reached in some way.

Twitter on the other hand is a bunch of connections with people you don’t know. This allows for a much larger network, obviously, however your network is your network. That is to say… what you say is answered by your network. Other people don’t get to see each other’s replies.

So if I ask for the answer to world peace and someone answers me….

  • Facebook: I see it, my friends see it and my friends see my friends replies.
  • Twitter: Only I see it. No one sees that reply come in unless they follow me and the person who answered it.

Google+ is entirely different in that you can circle (a lot like following on Twitter) so you can pick and choose as you wish, like Twitter. The difference is that when someone replies to me, everyone gets to see that reply. The secret to world peace just went viral!!

Let me put it this way… you may only be in 3 people’s circles… but if I am in 200 people’s circles and ask for the answer to world peace and you answer, the other 199 people in MY circles  get to see that answer.

From there, those 199 people can circle you, you wise person with such a great answer! Think about it, no matter how quiet of a person you may be… that answer never would have been heard because you don’t know the secrets to social networking and self marketing but now, you just gained an audience of 200 people that you didn’t have before simply by answering me.

The potential for network and community building is astronomical compared to the other networks. And your brilliance, no matter how quiet, has a chance to shine.

So what are circles? How should I use them?

Think of circles like Twitter’s lists… it helps you to sort the people you follow into different categories. Think of them as “circles of friends” where you may have a circle of co-workers, a circle of family members and so forth.

The thing to remember is that some people fit into multiple circles. A co-worker could be a family member. So that person would fit into both circles.

In this way, when you share something on Google+, you can choose which circles get to see it. For example, a family reunion update would be shared with your family circle and not your co-workers.

How do I use Circles?

I will give you a run down of the circles I use, as they pertain to autism. This is my list of circle names:

1. Autism
1.1 Autism Parents
1.2 Has Autism
1.3  Autism Advocates
1.4  Autism Charities
1.4.1  Autism Speaks
1.4.2 National Autism Association
1.4.3 Autism Society
1.4.4 Autisable.com

This may look a little strange at first but let me explain.

First of all, EVERYONE that is involved with Autism is put into circle 1. From there, if they’re parents, I put them into circles 1 and 1.1. If they have autism or aspergers, they go into circles 1 and 1.2. If they are advocates (don’t have autism or a child with autism), they go into 1 and 1.3. If they are a charity (as of this writing, I think only Autism Speaks has a Google+ account), they go into 1.4. If they’re an employee of an autism charity, let’s say Autism Speaks, they go into circles 1, 1.4 and  1.4.1.

Now, if I want to share something with only Autism Speaks employees, I share with circle 1.4.1. If I want all autism charities and their employees to receive it, I choose circle 1.4. If I want everyone involved with autism to read it, I choose circle 1.

By breaking it down into sub categories like this, you can include everyone, sub groups or specific people. It saves me from having to select 5 circles when I want to share with everyone. I can just choose one circle this way. Like wise, I can share with just fellow autism parents and not bother others, if it’s parent specific.

Wait, autism charity employees?

That’s right, I have started comprising a list (it’s small right now) of people of interest on Google+ right now.

Google+ gives us an unprecedented ability to reach people on a much more personal level. A huge amount of Google+ staff have profiles, Mashable’s writing staff have profiles, even Facebook’s top staff have profiles!

And so it is with Autism charities as well. Here are some notable people to circle:

Autism Speaks:
Marc Sirkin – https://plus.google.com/103356743690962786437/posts?hl=en
Peter Bell – https://plus.google.com/114190864043437006493/posts
Allan Benamer – https://plus.google.com/114400648902272848682/posts

National Autism Association:
Wendy Fournier – https://plus.google.com/101658238903147028726/posts

Autism Society of America:
Amanda Glensky – https://plus.google.com/116516874708262899866/posts

Autisable.com:
Joel Manzer – https://plus.google.com/115997835837459639477/posts

If you know of more, or if you are an employee of an autism charity/organization/company looking to make connections, please contact me so that I can add you to the list.

Hangouts

Hangouts are super cool webcam chats where, instead of talking to one person, you can talk to up to 9 others! And it is quite the intelligent system where everyone is shown in a thumbnail but the person making the most noise (ie, talking) is shown in the main window (large webcam image).

I’ve already approached some people and have found some interest in doing a regular webcam chat where people can ask questions, get support and even talk to notable people such as the staff of autism charities.

Sorry, you will need a webcam to participate in this and yes, we’re going to have to see you… but we’re all tired, we’re all needing some support and having some questions so there’s no need to be shy.

Look for this to start happening soon!

Let’s start networking and grow this community

If you were to view my “about” page on Google+, you’ll see a link to one of my updates (https://plus.google.com/106357905229054139137/posts/3bYSbVAqk8V). Basically, I created this as a way for people (you) to introduce yourself and also as a way of knowing how you fit into the autism community.

You certainly don’t have to rush there to be a part of the group or anything but it gives you a good idea of how to begin.

Introduce yourself, put a little bit into your bio, as you would on Twitter, so that people know how to circle you. You have to remember that this isn’t a “friend” network… also, people might not even recognize you since you’re “encouraged” to use real information rather than just a twitter username there.

So if you sign up and don’t use a familiar avatar or username, people might notrecognize you and know how to circle you.

And don’t be shy about circling others. If you see people commenting, if you see people sharing… circle them. The bigger and better the community, the better we can grow and support each other.

By the way, you can find me here: https://plus.google.com/106357905229054139137/posts

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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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