Archive | August, 2011

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

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Autism Study of The Month: Older Fathers Face Greater Risk of Having Child With Autism

By on August 30, 2011 in Autism Study of the Month

dna

Increased de novo copy number variants in the offspring of older males

Source: http://www.nature.com/tp/journal/v1/n8/pdf/tp201130a.pdf

Abstract

The offspring of older fathers have an increased risk of neurodevelopmental disorders, such as schizophrenia and autism. In light of the evidence implicating copy number variants (CNVs) with schizophrenia and autism, we used a mouse model to explore the hypothesis that the offspring of older males have an increased risk of de novo CNVs. C57BL/6J sires that were 3- and 12–16-months old were mated with 3-month-old dams to create control offspring and offspring of old sires, respectively. Applying genome-wide microarray screening technology, 7 distinct CNVs were identified in a set of 12 offspring and their parents. Competitive quantitative PCR confirmed these CNVs in the original set and also established their frequency in an independent set of 77 offspring and their parents. On the basis of the combined samples, six de novo CNVs were detected in the offspring of older sires, whereas none were detected in the control group. Two of the CNVs were associated with behavioral and/or neuroanatomical phenotypic features. One of the de novo CNVs involvedAuts2 (autism susceptibility candidate 2), and other CNVs included genes linked to schizophrenia, autism and brain development. This is the first experimental demonstration that the offspring of older males have an increased risk of de novo CNVs. Our results support the hypothesis that the offspring of older fathers have an increased risk of neurodevelopmental disorders such as schizophrenia and autism by generation of de novo CNVs in the male germline.

Translation

To begin with, “de novo” is latin, it means new, or “in the beginning”.

Also, CNVs or “Copy Number Variants” refers to the strands of DNA, the stuff that makes us us.  Sometimes there are “variants” which puts things out of sync, thus adding to “anomalies” or “errors” in our genetic code. Sometimes something is copied when it shouldn’t be, or is missing when it should be there.

So to translate “de novo copy number variants“, what they are talking about is new anomalies in a person’s DNA.

Traditionally, DNA is largely inherited from the parents.. a person will inherit eye color, hair color, skin color and more from their parents. This is present in the DNA.

However, there is also new elements to the DNA which is not inherited… these are “de novo“.

Ok so now that we know that, to continue, this article is discussing the likelihood that Autism could occur despite the family history showing no signs of Autism in the past.

To accomplish this, they took mice of varying ages, 3 months and 12-16 months and compared their offspring.

They found that there were 7 different CNVs among the offspring where it was already present in previous generations, meaning it was inherited.

However, they also found 6 new CNVs among the offspring that had older parents… and 0 new CNVs among the parents of the younger mice.

This would indicate that brand new CNVs can arise if the father is older… creating a new line of Autistic family future possibilities.

My opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

First of all, these are mice. Mice do not have Autism. However, one can’t dismiss the findings especially in light of other recent findings in genetics and DNA, in terms of Autism.

If true, this could help to explain why a child could have Autism despite being unable to find any history of it in the family tree.

Not all CNVs are harmful which means that while there could have been differences, and sometimes those differences are associated with Autism or even Schizophrenia, there’s no evidence that those differences would definitively cause Autism. Some may, some may not.

Like most studies, while they did find some CNVs in some mice, not all of the offspring showed these results. Meaning that just because you’re an older father, there’s no reason to think that your child will definitely be born with Autism.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

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Starting the School Year When Your Child Has Autism

By on August 29, 2011 in Autism

This post is assuming that your child has Aspergers or HFA level symptoms and thus, capable and “ready” for school.

The whole school process is a struggle enough. Parents have so much to get ready…. supplies, paperwork, transportation and more. Then you have the child who’s going to be heading out into the world, for the first time on their own, to fend for themselves.

It’s nerve wracking. It’s scary. It’s tiring.

On top of all of that, your child has Autism? This is a recipe for disaster if not prepared for in advance.

I don’t have all the answers, I’m just a guy trying to get my own kids through it but I can share with you some of the things that we’ve done. Maybe some of it will be new to you, maybe you’ll have much better ideas than I do (and please do share them in the comments!)

schoolFirst Year

If this is your child’s first year of school, you’re going to have to do a lot of preparation in advance. This doesn’t start a few months before or even a year before… this should start as early as possible.

  • seated learning time (counting, alphabet, shapes)
  • scheduled snacks/lunches as per strict routine
  • scheduled play time
  • play with others. Whether that means playing “next to” another child or what have you.
  • play groups would be ideal. Learning how to cope in a room with other children

Obviously this isn’t going to be fundamental or even strict for the first little while but as you approach that all important first day of school, it should become more and more a part of the regular routine.

A good idea to get your child ready is to visit the school and the teacher in advance and find out what some of the routines will be.
Also, listen for keywords because they may refer to certain things differently than you would at home.
For example, my son’s school has “nutrition breaks” rather than “lunch”

As part of your build up routine, have your child get up at the same time every day, get dressed, teeth brushed, breakfast in and everything before 8am or 8:30am.

I know that most of those things are a challenge on a good day but the more it becomes a part of the routine, the better it will go over time. It’s far better to struggle BEFORE school than when school actually does start.

Back to School

So your child has been to school already and is just finishing their summer vacation. That’s fine, a lot of the same rules will apply except that your child is likely a bit older which may mean having to rebuild some routines.

For example, your child’s bed time may have been pushed a little later since the sun doesn’t go down as early. Your child may even be waking up later as a result.

Going out to the park, swimming, sitting around and playing video games…. all of these things disrupt the routine and even though they know full well what to expect at school, they may still find it a huge challenge to cope.

About 2 weeks before going back to school, start to ease their bedtime back to it’s regular time. Not at all once but a bit by bit.

The week before school, go back to your school routine. Waking up at a certain time, going to bed at bed time… and everything else becomes school mode.

Get them dressed, fed, cleaned and even pack their lunches in the morning.

To make it fun, use that packed lunch as an excuse for some last chance trips to the park or the lake or what have you. Let them do their lunches as they would at school… meaning, no help (or not much) from you.

This helps them to get back into school mode.

The Best Thing You Can Do Is Not Be A Parent

I know, you just want to enjoy every last minute and make them as happy as possible for every last minute of freedom they have.

But that does very little to prepare them for what is to come.

And there’s no saying that the preparation can’t be fun. You just have to be creative. As I said earlier, go on picnics… give them rewards for a job well done.

Preparation is key, I’ve found. My wife is a master at it and really, this post is just notes as I tag along with her awesome planning.

The only way you can discover, recognize and avoid as many potential pitfalls and issues as possible in advance is to start before the fact. Treat the week before (or even 2 weeks before) as if they were school days so that you can hash out any problems or find out what will become problems before you have to deal with it for real.

That way, failed mornings don’t jeopardize an actual school day. It’s far better that you try to recover at home, where your child is comfortable, than at school where they really don’t want to be.

I’m sure your child’s teacher would appreciate it!

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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.

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Clinical Trials – Where are they? How do I get involved?

By on August 24, 2011 in Autism

Have you ever wondered how those clinical trials come to be? Where they are? How you can get involved?

Ya, me neither. But now that you are wondering, I have found the man that has the answer to these questions.

Mr. Sarkis Dallakian is the father of two and has come up with a way to give you these answers on an on going basis. What he has built is nothing short of genius, merging Google’s Maps technology with the clinicaltrials database giving you a visual and searchable dynamic map of your area with information on who is doing it, why they’re doing it and how you can be involved.
ClisMap

ClisMap

ClisMap is not just the best tool, but the only tool that I know of on the net to get detailed, easy to understand information on clinical trials anywhere in the world. Not only is it feature rich (allowing you search by many categories), it is easy to add it to your own site allowing you and your visitors access to this information as well.

Yesterday, I had pleasure of talking to Mr. Dallakian, I thought I’d share some of that with you here. Below the interview is an example of the ClisMap integrated right into this site, specifically targeting Autism trials!

 

1. Who are you and what do you do?

I’m a research programmer and web developer. I work at The Scripps Research Institute, in La Jolla, California, which is one of the world’s largest, private, non-profit research biomedical research institution. http://www.scripps.edu

2. Do you have children with special needs? Can you tell us about them?

We have two kids, my son is 5 years old and my daughter is 7. We had no special problem with our daughter. However, with our son, we noticed that he was having problems with speech when he turned 2. We were very afraid that he might have Autism spectrum disorders and that our worst nightmares might realize. We were fortunate enough to meet another couple who went through the same troubles. Long story short, my son is now doing good after we spend countless hours paying special attention to him. Now he goes to kindergarten and he is doing fine. 

3. How did you come up with the idea for ClisMap?

In 2008 Google introduced Google App Engine (http://code.google.com/appengine) and I started experimenting with that. I started building websites and learned web development skills. I was also watching many NIH webcasts (http://videocast.nih.gov/PastEvents.asp), in my spare time, and learning about different Clinical Trials. I also visited http://clinicaltrials.gov to see what kind of information is available there. This website is a great resource that many clinicians are using to find information about Clinical Trials. It has advanced search options including location based search. However, there was no options to search for clinical trials near specific location, similar to the one we use on Google maps. In general, clinicaltrials.gov is oriented more towards clinical investigators rather than patients. I started searching for a site that would let me find Clinical Trials based on my location. I wasn’t able to find one after searching hours on Google. That’s why I decided to create ClisMap as it’s useful for both me and the community. 

4. How often is ClisMap updated? Where does it get it’s information?

ClisMap updates its database daily. It takes this information from http://clinicaltrials.gov RSS feed and stores it on Google App Engine. 

5. How can people best use ClisMap? How do you get the most out of it?

People can best use ClisMap for searching for clinical trials nearby. For instance, one can search for smoking or obesity related clinical trials to see if there is one available nearby. You can also browse for clinical trials by conditions, interventions or sponsors to see who are conducting these clinical trials and why. 

6. What other projects do you have?

I also run a website called Food Prints (http://food-prints.appspot.com). This was my first Google App Engine project and it has been one of the top 5 projects featured in Google App Engine Gallery for 3 years in a row.

7. Do you have anything else that you’re working on?

I’m now spending most of my free time (besides family and G+) working on Heritage Health Prize Competition which offers a US $3 million Grand Prize. I’m not expecting to win this prize but rather learn new things from best data mining and machine learning specialists around the world.

Once again, thank you Mr. Dallakian… and now, here is an example of his ClisMap in action:
(If it doesn’t show up the first time, just reload the page. This isn’t a Clismap issue, it’s a wordpress+iframe issue.)

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