Tag Archives | community

The truth about how a research study goes from the lab, through the media, to the people

By on August 5, 2011 in Autism

I recently wrote about how the media is causing a civil war within the Autism community… it happens with many communities but obviously my focus is on Autism. It’s why you’re here reading my blog.

In response to that, Josie commented with a link to an image which is both hilarious and, more importantly, true.

It’s a very accurate description of exactly how a study can go from a researcher’s lab/desk, through the PR office to the media, through the national and local media, through the bloggers interpretations and finally, to the people.

And sadly, like a really messed up game of Telephone where the original message doesn’t even come close to resembling the final message… the study gets very distorted until what’s being told from person to person isn’t even remotely the same as what the original study concluded.

So the next time you read about a study in the news, or see something on television… remember this image because chances are, this is exactly what happened before it got to you.

science in the media

Source: http://phdcomics.com (Click for full size)

Comments { 1 }

Being an Autism Advocate – What I can overcome and what I can’t

By on August 4, 2011 in Autism

There is one inherent problem with being an Autism Advocate. That is that what makes a person the best Autism Advocate also makes them the worst.

Sounds strange, I know but let me break it down for you, as how I see it.

The two best types of people to be an Autism Advocate are:

  1. A person with Autism/Aspergers
  2. A parent of a person with Autism/Aspergers

Who would know more or understand better than these people? Who better to stand up for their rights than the people right in the middle of it?

ObstacleHowever, think about it. Does it makes sense for a person with social and communication difficulties and impairments to be out there, speaking out and advocating for everyone? Does it make sense for a parent, with virtually no time or money, to be devoting time and money that they don’t have to speak out on behalf of others?

Parents are tired, Autistics are introverts…. Parents are busy, Autistics are usually avoiding the crowd.

It creates quite the problem when the best people to speak are the ones that are the least likely to.

There are some exceptions and there are other people that make great advocates, but for the sake of this post, I’m generalizing the majority for the sake of making a point.

What I can overcome

Social networks have really changed the world in that, you don’t have to be a celebrity or own a national news network to reach people.

My blog posts can reach hundreds, sometimes even thousands of people in a day. My tweets and status updates are the same.

And it’s not that what I do is all that great but that the people that follow me or read my stuff are so supportive and kind that they’re willing to share it with their own networks to help me reach out further.

Sitting in the comfort of my own home, I can reach thousands so long as wonderful people allow it and support me.

What I can’t overcome

I work a 9-5 job, like many people but I feel like I could do so much more if I didn’t. I can’t write like I want to, I can’t get out there and spend time with people, I can’t do interviews with people… it’s very limiting.

On top of that, even when I’m not doing the 9-5 thing, I am often doing quite a bit around the house since my wife has Fibromyalgia. Much of my off time, and even sometimes during my work time, I am doing quite a bit of chores around the house.

I live in the middle of nowhere, which means I can’t get to seminars, conventions or even out just to meet some of the wonderful parents, doctors and Autistics within the community.

No money is another big one. I can’t even buy the books that I hear about or that I’ve been wanting to read for so long.

The desire to do more

I have an itch…. I want to do so much more. I want to be more involved, I want to be contributing far more than I am.

But at the same time, I need to be a little proud of myself. I’ve been able to do quite a bit despite having so much limiting me.

The same is true for so many other advocates out there. If you reach an audience, whether that audience is 2 people or 20,000 people… just think of all that you’ve been able to overcome to achieve that. And think about, not only how good that feels, but how much good that does.

I think we’d all like to do more… and the more we do, the more we will want to do. That’s what makes an advocate a good advocate, I think.

If you’re an Autism Advocate, or any kind of special needs advocate, I want you to know that yes, I am bragging a little in this post.

It’s ok to brag a bit, so you should to. Don’t make it a big deal but feel good about what you are able to accomplish.

Even if you do find some obstacles that you are unable to overcome, you should be proud of the obstacles that you can overcome. You should be proud of yourself.

Comments { 5 }

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

By on August 2, 2011 in 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.

Comments { 4 }

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

By on August 1, 2011 in Autism

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

Comments { 1 }

How the media creates civil war within the autism community

By on July 31, 2011 in Autism
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.

Comments { 5 }