Tag Archives | awareness

What is Autism Advocacy to you?

By on August 31, 2011 in Autism

You would think that a question, such as “what is autism advocacy to you?”, would be pretty straight forward. However, if you ask a few thousand people that question, you’ll very quickly realize that it’s most definitely not straight forward.

Advocate

verb
1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

noun
2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.
3. a person who pleads for or in behalf of another; intercessor.
4. a person who pleads the cause of another in a court of law.

I think everyone can agree that, even though there is an official definition, there is no one way to be an advocate.

Autism Advocacy

So I asked what Autism Advocacy is to people on various social networks and thought I’d share some of the responses with you:

#empowerment #support to let families affected by #Autism , #ASD , & #FragileX know ‘they are not alone’

Active support that raises awareness, results in change & aid 2 individuals & families.

For me it means donating money to autism research, doing walks for autism, striking up a conversation about it with strangers in the checkout line, at the park or wherever. Online, it means posting articles, videos, blogs etc talking about different aspects of the disorder. I think it is a combination of these things, as well as being a “voice” for those people affected by it.

Raising awareness of the breadth and scale of autism and reminding people it is a life long condition. I certainly have got into the habit of posting articles / starting conversations about issues on autism.

Autism Advocacy on a parental level is educating the awareness of the challenges you face everyday with your child who is diagnosed. Especially with your community leaders, your local government, and advocating for change to enhance and strengthen the bonds of Autism Families. Most families are not able to financially support the intervention that is provided through health insurance, Fundraising is important aspect of providing those needs to your family. Structure is vital for children with Autism.

I even got some responses such as this one:

Unfortunately, mostly very loud parents.

Which may bring you to feel upset at first but I think when you really think about it and think back to some of the other parents you may have come across in your life, this actually may be true… maybe not “mostly” but certainly some do qualify.

You can quickly see just how varied the answers are. They’re all advocates but they look at the tasks, the targets and those they’re advocating for quite differently.

Who are some good Autism Advocates?

I also asked who people felt are good autism advocates. Many people named Temple Grandin, some people mentioned people on Twitter, such as @Diaryofamom, @shannonrosa, @CorinaBecker, @AutismWomen and @LauraBShumaker.

The response from some parents where that they, themselves, were the best Autism Advocates. Why?

Well, as the parent of a child with Autism, no one could advocate for their child better than they could.

But this brings us back to the first question, what is Autism Advocacy?

In a rather amazing bit of good timing, Jim (@GingerHeadDad) wrote this just yesterday: http://gingerheaddad.wordpress.com/2011/08/30/what-is-wrong-with-just-being-a-parent/

I had written several replies in his comments but never hit submit on any of them. I felt I wasn’t expressing myself clearly, I felt I wasn’t doing his post justice. I felt… I felt that the questions that I had been asking essentially are the response to his post that I am looking for. So I decided to write up a blog post of my own in response and share that in his comments….  which brings me to this:

Autism Advocacy – As Defined By Stuart Duncan

Autism Advocacy is the speaking up about, speaking on behalf of, speaking in support of, speaking in defiance of and speaking in defense of yourself, a loved one, all people with Autism or for Autism in general whether you are speaking to yourself, one other individual, a group of individuals or the entire world.

What does that mean?

It means that it doesn’t matter how much money you’ve donated, if you’ve created laws, written books, built buildings or if you’ve informed a family member, had a teacher recognize a special situation involving your child, had an impromptu discussion with a stranger or even if you’ve simply come to self realizations all on your own…. you are an Autism Advocate.

Never feel like you aren’t doing enough simply because your advocacy efforts are focused on those you love.

That change you made in a teacher, that stranger you talked to, that family member that has a better understanding… they’ll carry that forward to the next time they encounter someone with Autism and it will affect them. You will have made a difference.

Always accept that you feel you could do more but never let yourself feel like you haven’t done enough.

We all see advocacy differently. We all see Autism differently. We all have a different view that leads us to different goals.

It’s not about the number of people that hear you. It’s not about the size of the changes you can inspire in the world.

Big or small, loud or quiet, we are all advocates.

————————————————————

To the world you may be just one person, but to one person you may be the world. ~ Brandi Snyder

Comments { 2 }

When raising Autism Awareness gets out of hand and becomes something else

By on August 25, 2011 in Autism

I’ve been noticing a disturbing trend lately…. Autism Awareness.. run amok!

Autism awareness is a great thing, it’s a wonderful thing…. it’s a necessary thing.
But as we all know, too much of a good thing can be bad for you.

Here are just a few instances where well intentioned Autism Awareness becomes more of a nuisance than a good thing.

towerThe Share-o-holic

This happens all over the internet but the two most obvious places I see it played out is on Twitter and Facebook. This is what it looks like:

  • Twitter: Instead of tweeting a link or message, they mention every single person they can find on Twitter and tweet their link or message, over and over, to each person, until they get blocked by Twitter for spam. Often, these all come with a request to retweet it.
  • Facebook links: So excited about a blog post or someone writing about them, they race to every profile, fan page and group that they can find on Facebook to share that link. Thousands of shares later, they do it again the next day.
  • Facebook bios: Having written a cleverly worded bio about who they are, what they do or what they offer, they hit every profile, fan page and group that they can post to and repeat it again, word for word, weekly or more.

This constant repetition is frustrating enough but seeing it daily or weekly is enough to make me want to unlike those fan pages, remove myself from those groups and so forth… all because of one person. And I’m all for Autism Awareness! Imagine what others must think.

The News Source Replicator

Being aware of what is in the news is paramount to being aware of what’s happening in the Autism community but also in being aware of what may benefit you or your children. Some new information may shed some light on things close to home, some new therapy may be just what you need.

That’s great!

However, what we don’t need is for people to automate their Twitter account to just pull from a news source on Autism.

If their entire Facebook feed is news stories and never an actual conversation piece or anything, no one is reading.

If they login to Google+ once a day just to hit the share button on every single Spark available that day and then they’re gone after… people will remove them from their circles.

Listen to me carefully, if all you have is news… no one is reading. You’ve blown it. Autism Awareness is your goal but not your achievement.

Alienating Your Own Kind

Oh this one scares me… I just shake my head…. violently. I am just so dumbfounded.

Recently (late July to be exact), Temple Grandin created an actual Facebook profile. Not just a fan page, but a profile. So she could have friends and everything.

It was quite impressive to see how quickly she got to 5000 (the max). It’s a true testament to her and her work.

However….

For the last 2 weeks, I’ve watched update after updating of Temple Grandin joining an Autism group on Facebook. Now, groups don’t work the way you might expect. Temple Grandin isn’t actually joining these groups. The groups are adding her.

The way groups work on Facebook is the group can just add anyone it wants and it’s up to those people to opt out.

Now, think about how frustrating this must be when it happens 10 or 20 times a day.

Granted, it’s mostly someone representing her and also, she’s a very kind woman and probably doesn’t really mind being in all those groups however at the same time, it’s really quite rude of so many people to do this to her. Her Facebook stream must be simply filled with group posts. Insanely filled.

Is this really how we treat someone we respect so much? We force hundreds of Facebook groups on her until she finally decides she’s had enough and leaves Facebook behind?

What exactly is it we’re doing?

Are we really raising awareness when we do this? Are we really “sharing our message” with others?

Or are we trying to ram our own need for attention down the throats of others?

Because sometimes, I have to wonder.

And if you know me, you know that I’m all for raising awareness. For doing more than that! But this is not the way to do that.

Making people want to block you, unfollow you, leave the places they used to enjoy… all just to get away from you.. what is it you’re really doing?

Broadcasting

In the social media world, this is called broadcasting. This means that all you do is send message after message, link after link, story after story and you either don’t, or very seldom actually interact with anyone. You take nothing in.

If you treat social networks as your own personal radio station, you’re doing it wrong.

First of all, no one listens to a radio station that only has one song.
Secondly, people  looking for social interactions don’t turn on a radio for it.

I’ve often said that Autism Awareness is a passion for some people but the problem is that passion can be blinding sometimes. In an effort to share the message with the world, you become obnoxious and the world becomes annoyed and tunes you out.

When that happens, you don’t just hurt yourself, you hurt all of us for all of our messages become a little less powerful, a little less heard.

Comments { 6 }

The life of an autism parent advocate

By on August 21, 2011 in Autism

In one way or another, all parents that have a child with Autism will become an advocate… whether they are just explaining to fellow family members why their child behaves how they do, or if it’s fighting for their rights in schools and other services or if it’s speaking out to the world on behalf of all people with Autism… we all come from the same place, we all do our best with the best of intentions.

In some ways, it sounds glamorous… putting up the good fight, speaking to the hearts of others… but at the same time, it sounds like quite the struggle. A constant, tireless battle requiring a love filled heart surrounded by a skin of steel.

I can’t speak for everyone, only myself, but one could imagine that the stories of most people aren’t far off from what I’m about to tell you.

What you already know

If you’re reading this, you’re likely a parent. Which means you already know all about the cost of parenthood, the constant running around, the constant illnesses, the constant battles at bed time and so on and so forth.

This includes the unexplained rashes, heart break over bullying and more.

What you might not know

With Autism comes a host of other issues, including no sleep, irregular diets, regular therapy appointments, battling the education system, having to fight with the government for coverage and assistance and a whole lot more.

Bullying is far more likely as well as far more frequent. Friendships are far less likely and less frequent.

Regular clothing can be painful, bike riding can take 2 to 3 times longer to learn, special equipment may be needed such as trampolines or Lycra(stretchable) bags or bedding. Some children even need weighted vests.

The diets aren’t just stressful to keep on top of, but in some cases can be quite costly. For example, I can buy a loaf of bread for $1.80 at the store…. or I can buy a loaf of gluten free bread for my son for around $8. A small bag of gluten free pretzels, containing about 12 pretzels, costs $5.

The cost of success

So it turns out that I’ve been doing rather well at being an Autism Advocate…  but the question is, what does “doing rather well” mean?

Well, no parent becomes an advocate for the paycheck.

I have been asked by several blogs, even charities, to write for them. I’ve done several radio interviews, been in the paper a few times, even had CNN call me once. I have almost 10k followers/fans/circles across the various social networks and I get between 5 and 10 emails a day with questions or just to share their story.

All in all, I call that a success and am quite proud. However, there is an inherent problem with all of this.

As it adds up, I find myself spending 1-3 hours a day on Autism advocacy… that’s my own personal time.

When you consider that I have a 9-5 job just like everyone else, plus a family of 4 which I love to spend my time with and then various other responsibilities and commitments…  let’s just say that the 24 hour day gets used up pretty quick.

On top of that, as I said earlier, therapy, diets, special supplies and more really begin to add up when being a parent tends to cost a small fortune as it is.

The cost of success being an Autism parent advocate is that you get less hours, more bills and even greater stress.

It’s not a thankless job

The one saving grace is that it’s not a thankless job. I often hear from others how grateful they are and for that, I myself, am grateful. If money wasn’t a problem, that’s all I’d ever need. A thank you means everything to me.

Welcome to the crossroads. That’s where I am now. I love being an Autism advocate. I love hearing from people… their good stories, bad stories… I love writing the articles, reading articles from others…

The problem is, I simply can’t keep devoting hours of each day while the bills pile up and begin to fall behind.

I come across twitter account after twitter account, facebook fan page after facebook fan page… inactive. And I can’t help but wonder if they ran into the same crossroads. Did they lose interest? Or did they find that they simply couldn’t commit to it any longer?

Autism advocacy: it is glamorous, it is a struggle… it is all those things to different people.

The good news is that the numbers keep growing. Awareness keeps increasing. With every person that has to hang up their hat to focus on their family, there’s another 2 people there to take their place.

No matter what. Stay strong. Stay positive. And remember, support is where you give it.

Comments { 4 }

Autism blogs are not news!

By on August 12, 2011 in Autism

I’m finding more and more of a disturbing trend lately… where Autism blogs, by parents, are deeming themselves news media and submitting their work to Google News and other sources.

The media, especially aggregators such as Google News, make it especially easy these days for average people to be heard… not just heard, but to be included in with the other news stories.

Many news sources allow “reader opinions” or even let them write in as “editorial pieces”… which is good, to a point. However many people don’t differentiate these stories from actual, fact checked and verified news stories… not that actual journalists are a whole lot better these days, but you get the point.

fact or opinionWhen the news isn’t the news

There’s a code by which journalists go by, or at least should go by. That is that they reports facts as facts and opinions as opinions. That means that they need to get on the phone, go to the locations, talk to the people and verify that facts are facts.

The news agencies have a very real obligation to the public to bring current, accurate and fact checked information… obviously this doesn’t happen very well, especially with recent events in the media but in practice, this is how it’s supposed to be.

Blogs are a way for people to share their opinions, to add commentary to what they find in the news and to share information that they have acquired. Bloggers can do a fair amount of fact checking but for the most part, the fact checking involves what they read from the media, from other bloggers, from other websites that have random information and some people even use Youtube.

Two wrongs do not make a right

Many bloggers find that the media is slanted or even lie to tell their own versions of stories… so those bloggers write their blogs to combat what they find in the media, to argue their side of the story.

Eventually, they discover that they can submit their own stories as news sources as well, thinking that their own slant will help to balance the system but this couldn’t be more wrong.

First of all, two wrong opinions, event if opposites, have no guarantee of being right. Also, even if one is right and one is wrong, who should the reader believe? Because most people will believe one and not the other, rather than find middle ground or seek more information.

Worst of all, most people won’t even read information from both sides in the first place.

No room for a second opinion

People don’t read the news from various sources to get a second opinion. If they get their news from one source, they depend on that source…. and will rarely go to another source. Especially if it’s the same story.

Which means that they won’t fact check it themselves, they just believe what they read and take it as fact. You see it all the time when you talk to people that argue with you on current events… they’re so sure of something that you believe differently… it’s because you got your news from different sources.

If a person believes your blog posts to be their dependable news source, good for you…  bad for them. I feel bad for them because they now think your opinion is a fact. And whether you are right or wrong… no opinion is fact.

When the solution only adds to the problem

I see these blogs in the Google News lists and I cringe. Actually, I see red. It really upsets me.

These people, upset that the media is deceiving them, go out of their way to deceive people. What kind of messed up logic is that??

It’s even worse when I continue on to read them and it’s so blatantly obvious that it’s an opinion, and more so, a wrong opinion… that is so blatantly obviously slanted to their own views…. that’s what really upsets me.

Now, there’s nothing wrong with having a blog, there’s nothing wrong with even getting hundreds of thousands of readers… if people like your reading, like what you’re saying… great work! Good on you.

But your blog is not news!!!

I wish there was a way to “report” these sites or people such that they’d be de-listed because there’s just no way that they should be included with other news sources.

But as it stands, there is no way to do that. We have to filter ourselves and just hope we can recognize a blog post from a news source.

If our community isn’t messed up enough with the conflicting messages we send the public, do we really need to make it worse by doing this?!?

Comments { 0 }

The Jenny McCarthy-Autism paradox

By on August 8, 2011 in Autism vs Vaccines

Jenny McCarthy Autism

Perhaps I titled this article wrong… paradox should be plural.

If you’re an avid Jenny McCarthy fan and have some very strong beliefs in certain things, this may upset you but I still ask that you read with an open mind.

1998

Wakefield releases a study stating ties between the MMR vaccine and Autism… not stating exactly that one causes the other, or that you should stop taking vaccines… but that’s the message that the public receives. The media doesn’t help much nor does Wakefield in subsequent interviews.

1999

Thimerosal is removed from almost all vaccines in the US, except for some flu vaccines.

As a side note… Thimerosal was never in the MMR vaccine.

May 18th 2002

Jenny McCarthy’s son, Evan, is born.

2005

Evan, 2, begins having seizures so severe that he’s repeatedly rushed to hospital emergency. – http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Evan is diagnosed with Autism at the age of 2.

Remember, Evan was 2 in 2005 until May.

2006

Jenny writes about her “crystal child” in Insights of an Indigo Mom: A Mother’s Awakening… in which she writes about chain smoking and cheeseburgers up until his birth at which point she changed to Hepa air filters and eating vegetarian.

I wonder why she never blamed the chain smoking and cheeseburgers… also, one would wonder why she’d write about Cystal/Indigo stories if he was diagnosed with Autism 

2007

Jenny changes her story in May, saying that he’s not really a “crystal child”, he’s actually Autistic. – http://en.wikipedia.org/wiki/Jenny_McCarthy#Activism_and_autism_controversy

She claimed that the MMR vaccine specifically caused his Autism… and began campaigns against Thimerosal despite the fact that it never contained Thimerosal and he was born several years after Thimerosal was removed from most vaccines.

Jenny goes on a book writing spree over the next several years, publishing several books on motherhood as well as “healing Autism”.

2008

Jenny begins her crusade against Autism, becoming a spokesperson for Generation Rescue and TACA and appearing on several radio and television programs, including Oprah. Each appearance includes endorsements for her books.

Jenny also claims that Evan has “recovered”… which isn’t the same as cured. But it doesn’t stop the media from using that word a lot in articles about her and her son.

Jenny and Jim Carrey begin a “march on Washington” to “green our vaccines”. When interviewed, Jenny claims that Evan was “undiagnosed with Autism”.
Jenny also reinforces that she is not anti-vaccine but rather for safer vaccines and spaced out schedule. An excerpt:

Don’t do more than one shot in a visit. Do you see what I’m saying? Not to not vaccinate. Space them out, ask for mercury-free. Make sure your child is not sick before you vaccinate. Your child does not have a good immune system. How is it supposed to detox the vaccine? Test your child for an immune system. Make sure they have really good glutothion. Glutothion is your body’s naturally antioxidant to detox these things.

2010

Doctors and scientists start to question McCarthy and the diagnosis that her son received, claiming that his symptoms more closely resemble Landau-Kleffner syndrome… very similar to Autism but treatable. – source http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Despite the possibility that he never had Autism to begin with, Jenny confirms that she’ll continue to “be the voice” for the disorder. She also begins to realize that it wasn’t really the MMR vaccine after all, stating that she just wants vaccines to be safer, rather than getting rid of them entirely.

2011

Jenny joins the Generation Rescue board in January.

Jenny speaks out in support of Wakefield, claiming “I know children regress after vaccination because it happened to my own son” and asking “Why have only 2 of the 36 shots our kids receive been looked at for their relationship to autism?”

One would wonder why there’s any need to check the other vaccines if she’s so certain it’s the MMR.

Jenny continues onward, claiming that “kids do recover from Autism” as her son did, with a gf/cf diet and vitamins. Previous articles went into more details of his treatments including “a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. ”

What can we take from all of this?

Well, first, we have the fact that the blame she has shifts radically from Thimerosal (ethyl-mercury) to the MMR vaccine itself to the vaccine schedule (multiple vaccines at one time) to simply vaccines in general, asking for more research.

Secondly, she seems very conflicted about what exactly her child may actually have. First there’s crystal child/indigo mom theories, then it’s Autism and now there’s questions of Landau-Kleffner syndrome which, from what I can tell in my research, she has never actually explored.

Third, almost everything she gets involved with seems to have a heavy self promotional feel to it. Many praise her for getting into the spotlight for Autism awareness but at the same time, there are many people who believe she does it simply to get herself into the spotlight. Most notably when she recently offered to pose nude once again for Autism awareness reasons.

Finally, and this is a big one… she has become the leader of the anti-vaccine movement despite the fact that she never once said she is anti-vaccine herself…. and in fact, professed many times to wanting more research, safer schedules and “greener” vaccines.

Much like Wakefield, who had his own patent for a vaccine as partial replacement of the MMR vaccine (who would patent a vaccine if he was anti-vaccine?!?), her concerns over vaccine safety lead to hysteria and paranoia among parents who now place their children at much greater risk than they ever were before.

In my opinion

Seriously, as others have said before… stop listening to a Playboy bunny/actress for medical advice. That’s not to say that she’s not allowed to have an opinion. She is… but she’s doing the same research you are. She’s not a doctor nor a researcher.  She’s a mom just like every other mom and her opinion holds the same weight.

Also, stop putting words in her mouth that she didn’t even say. She never said she was anti-vaccine and she never told you to not vaccinate. Don’t tell me she did. Whether you hate me right now for writing all this or not, don’t assume I haven’t researched this. I have. I know she’s “pro-safety” and not “anti-vaccine.”

Lastly, and this is just my opinion… people of high influence, such as celebrities, should be very very careful about what they randomly put out there. These are our children and unless you are absolutely certain (and when it comes to vaccines, no matter what you think you know, you are NOT absolutely certain), you should not be putting fears and doubts and unproven concerns into the minds of people that could put themselves and their children at risk.

The point is, there is a chance that what you *think you know* may be wrong. There is an even bigger chance that the way people interpret what you say may be wrong.

The one clear message through this entire post, that I’d like for you to take from this is, Wakefield and McCarthy are not anti-vaccine!!!

Despite them both saying that they are for safer vaccines, they have not made it abundantly clear that they are not anti-vaccine.

Wakefield needs to stop putting out articles on studies, McCarthy needs to stop putting out articles on recovery and her own story.

What they need to do (if they insist on continuing) is write articles and do interviews that consist of nothing except them telling parents “Vaccinate your children! Do not withhold vaccinations. Vaccines save lives!” They need to explain their stance, clearly and definitively. If they are pro-safety and not anti-vaccine… then why are anti-vaccine activists praising their work?

If they have no intentions of making this clear, then they should no longer be in the media, in my opinion. Because the message they think they are sending is not the message that some parents are receiving.

This is the Jenny McCarthy paradox as I see it. On one hand, I respect her work to raise awareness. On the other hand, I despise the self promotion and her willingness to let parents continue to be anti-vaccine in her name.

Is it any wonder that people’s opinions of her are so conflicting?

Comments { 54 }