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The Blog Has Officially Moved!

March 6, 2012 1 comment

The blog is officially moving! Today is the day that our blog will be migrated onto the Official Autism Speaks website. The new address of the blog is:

http://www.autismspeaks.org/blog

We are making this move to serve you better!

We know that it will take some getting used to, but we are here to help you adapt. Here are some quick answers to questions you may have:

Will my emails subscription still work?
Yes, if you have been subscribing to our blog already, you will continue to get updates. If not, subscribe now via email or in a reader.

Will my bookmarks still work?
We’ll try our best to make bookmarks still work but sometimes we may not catch changes in time as we sync content from our old WordPress blog to our new Web site. We apologize in advance for this. If you have any questions, please feel free to email contactus@autismspeaks.org

What else will be changing about the blog?
The new blog will just be better integrated into our main Web site. This means you can search on one topic and not only get blog content but all our other content as well.

If I’m using an RSS reader, will I have to change anything?
No! If you have any problems, feel free to unsubscribe, and then add our RSS feed back into your reader.

Categories: Awareness

20 Years of Autism: A Mother and Son Perspective

March 5, 2012 36 comments

This blog post is by Kerry Magro. recently started a new video blog called “My Autism My Voice,” where he discusses a variety of topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerry.magro@autismspeaks.org or through his Facebook page here.

On January 15th of this year I turned 24. To be honest this milestone really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. 2 weeks later I received an email from a parent in regards to helping her grandson who has PDD-NOS. Maybe more than any of the other emails I had received before, this question was very detailed asking for several questions regarding topics such as an early diagnosis, therapies, early childhood, how to approach the diagnosis, etc. Even though I’ve helped answer questions before I asked my mom to help assist me in answering her questions.

What I would receive back from my mom was something I didn’t even realize and that was it had been 20 years since I was first diagnosed at 4. 20 years of autism. It made me realize how much time had actually flew by and of how I got to where I am today. I thought about the milestones I’ve  hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book, and maybe most importantly…having a voice to be heard. Time slowed down for a bit.

My Mom Wrote to The Woman:

“Looking at Kerry today I wish 20 years ago someone had offered me inspiration and hope that he represents and I can see why anyone would ask the question of how he got to where he is today. His PDD-NOS was severe. Although we did not know what PDD NOS was they mentioned that some children were institutionalized and that’s all I heard.
Kerry was our delightful only child reaching most development (height, weight) milestones except speech until he was 2.5 years old. At 2.5 he started to show extreme signs of sensory integration dysfunction where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues. There was a time when we could not bathe him – uneven surfaces such as sand and or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different pre schools because they couldn’t handle him the later he preferred isolation would not play or participate with other children and had delayed speech, limited pretend play, echophilia, twirling, extreme difficulty with transitions and tantrums. He had fine and gross motor delays. When I dropped him in the morning he would scream he didn’t want to go in and when I picked him up in the afternoon I would have to drag him screaming because he didn’t want to leave. Once home with a caregiver he would scream at the top of the stairs “Go away”.
Kerry was diagnosed first by Hackensack Hospital and then by Doctor Margaret Hertzig, The Director of Pediatric Psychiatry at Cornell. Doctor Hertzig is a world-renowned expert in Autistic and Autism Spectrum Disorders. She saw him as he grew marking improvement she saw. Interestingly to us she reconfirmed Kerry’s diagnosis last year for his accommodations for GRE’s as he started graduate school.
The Kerry you see today is not the Kerry I grew up with.
As to care Kerry did not come together for many years when he was diagnosed. Finally we tried to get him into a pre school handicapped class. There was a delay in that so we began Occupational therapy (OT) at home with a Pediatric OT working on the SID issues as well as speech. OT continued at home till he was 7 as well as in school where he was in a multi-handicapped class receiving speech, and OT. At 7 he began intensive physical, OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local PT.
One of the major things that worked for us was sports. Although he did not want to be around people I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes and the forced transitions helped condition him a lot. The vestibular planning therapy also help a lot.
Kerry started to respond to recognition, praise, rewards and I ran with that, we have a million great job stickers; magnets, trophies and I developed my own token economy barter system with him. If he would try something three times he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he did not want to do something I would agree to let him drop it. Since he wanted to do nothing three times sometimes seemed interminable for both of us but I kept to it and found a kid who loves bowling, played soccer, basketball etc. T- ball was rougher with the co-ordination issues and was one that got dropped but not till the third season.
All this time, speech, physical and occupational therapies continued, we also took lessons piano at the house to help him out.”

To have this written out for me to read left me with so many emotions. Some of the stuff was so long ago I had no recollection of it whatsoever. What stayed with me though was the passion and the love that came with this letter. No matter how many struggles were presented, my parents were always willing to go the extra step to help me and today I want to live by that example to help others.

My parents are strong. They are saints. Without them I have no idea where I am 5 years down the line let alone 20. I know I still have a long way to go but one thing I know is for the next 20 years that I have autism I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future. Please join me by having your perspectives of autism, both for you and your family heard in the comments section below. Thank you.


Our Blog is Moving!

March 3, 2012 5 comments

We are pleased to announce that on March 6th we are moving our blog onto the Official Autism Speaks website. We are making this move to serve you better!

We know that it will take some getting used to, but we are here to help you adapt. Here are some quick answers to questions you may have:

Will my emails subscription still work?
Yes, if you have been subscribing to our blog already, you will continue to get updates. If not, subscribe now via email or in a reader.

Will my bookmarks still work?
We’ll try our best to make bookmarks still work but sometimes we may not catch changes in time as we sync content from our old WordPress blog to our new Web site. We apologize in advance for this. If you have any questions, please feel free to email contactus@autismspeaks.org

What else will be changing about the blog?
The new blog will just be better integrated into our main Web site. This means you can search on one topic and not only get blog content but all our other content as well.

If I’m using an RSS reader, will I have to change anything?
No! If you have any problems, feel free to unsubscribe, and then add our RSS feed back into your reader.

Categories: Awareness Tags: , , ,

Autism Fire Rescue Program Featured on NBC’s ‘Today Show’

March 2, 2012 4 comments

The training of first responders is absolutely critical to keeping individuals with autism safe. Unfortunately, there are far too many stories of dangerous situations that arise because of a lack of communication and understanding between safety professionals such as firefighters, and individuals with autism and their families. Yesterday, NBC’s Today featured Bill Cannata, the father of a young adult with autism who has developed a program that has educated over 15,000 first responders around the country in how to handle people with autism, and as a result, saved lives. Bill was also a member of the professional advisory committee for the Autism Speaks Autism Safety Project, where he provided tips and quick facts for firefighters interacting with individuals with autism. To further these efforts, in 2011, the Autism Speaks Family Services Community Grants program provided funding for the Autism and Law Enforcement Education Coalition (ALEC), designed to help foster a deeper understanding of autism spectrum disorders by training public safety and law enforcement personnel. Autism Speaks applauds these first responder training efforts.

Longtime firefighter Bill Canatta is committed to caring for his 21-year-old son Ted, who is living with autism. Bill teaches people across the country how to rescue other people with the condition, and his training helped one first responder save a boy’s life. TODAY’s Amy Robach reports. You can find out more here.

An Evening with the Stars – and YOU Can Be There!

February 24, 2012 1 comment

We don’t know about you, but we have Awards fever! The Chicagoland Chapter of Autism Speaks is hosting an awesome event, ‘An Evening With the Stars.’ Unfortunately we can’t all physically be there, but you can VIRTUALLY be there! Throughout the night we will be giving updates on Facebook, Twitter, and our newly created Tumblr account! Please be sure to follow along and have some fun this Sunday!

Coverage starts at 6pm EST – so be there!!

Categories: Awareness, Fundraising

Autism Speaks Kicks off “Light It Up Blue”

February 22, 2012 23 comments

In celebration of World Autism Awareness Day on April 2, Autism Speaks will again seek to turn the world blue. Our third annual Light It Up Blue initiative is fully underway with over 350 buildings already committed to turning blue.

Among the landmarks that will be turning blue on April 2, 2012 are Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City, Hôtel de Ville in Paris, France, the famous Tokyo Tower in Japan and Canada’s CN Tower, the Sydney Opera House in Australia and Michigan’s Mackinac Bridge.

Check out LightItUpBlue.org to register your events and see a full list of participating buildings.

Last year we had over 2000 buildings and landmarks turn blue. With your help, in 2012 we will more than double that number!!

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Autism Speaks to Young Professionals Winter Gala a Success

February 17, 2012 Leave a comment

Last night, more than 250 guests, including Miss New York 2012 Johanna Sambucini, packed the house at the ultra-cool Avenue lounge in New York City for the fifth Autism Speaks to Young Professionals winter gala. The annual event is designed to bring together young professionals from all industries to generate funds and awareness of autism. Co-chaired by Jesse Morris and Danny Ryan, the Autism Speaks to Young Professionals winter gala raised over $33,000 dollars for Autism Speaks’ research and advocacy initiatives.

A special thanks goes out to the sponsors who helped make the event such a special evening, including RBS, Brooklyn Brewery, Crop Organic Vodka, DonQ Rum, Farmers Botanical Organic Gin, Given Tequila Liqueur, Magner’s Irish Cider, and Tito’s Handmade Vodka. And finally, thank you to Lauren Colatrella of Bakari for the delicious and festive cupcakes!

Be sure to scroll through all of the great pictures below.

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NBC’s ‘Parenthood’ Explores ‘Tough Love’ and Autism

February 15, 2012 3 comments

This is a re-post from NBC‘s ‘Parenthood‘ ‘The Experts Speak.’

Many of us know the feeling of being chosen last for a team or the wish to “ditch” gym. We all know the desire to make a friend. In this episode, we see Max struggling with these issues. In some ways, these are typical struggles for a middle school student.

There are at least three issues here. The first issue is Max’s not wanting to be part of a group that wants to exclude him; the second is using his Asperger’s disability as an excuse to avoid a difficult social situation; and the third is his taking the time to make a friend. All in all, except for using the Asperger’s diagnosis as the excuse, Max sounds like almost any adolescent to me. That’s a great thing.

The central concern in the episode for me is the gym teacher’s failure to facilitate both Max and Micah’s participation in gym. It isn’t Max using his Asperger’s to get out of an awkward situation that is the problem, but the teacher’s failure to use it as a teaching moment for both him and the other students. However, because Micah is sitting out, too, we know that she isn’t one to look for accommodations.

With regards to Micah, she simply isn’t doing anything to accommodate him during the class at all as he sits alone on the sidelines with his electronics. Regarding Max, she does nothing to facilitate his being part of the group so he can learn and participate by accommodating his social disability. Her actions are not simply wasting the boys’ time, but are actually depriving the boys of a free and appropriate public education (in this case, the physical education curriculum) as required by law. She and the school, by extension, are breaking the law. She is also unfortunately teaching the children that it’s okay to discriminate.

This is a serious breach of the IDEA (Individuals with Disabilities Education Act), a law that protects students with disabilities from being discriminated against in the public school system and mandates that children with disabilities receive a “free and appropriate public education” (FAPE). The laws governing the education of a child with disabilities also assert that education take place in the least restrictive environment. The gym – with all of the nondisabled students – is a perfect, least restrictive environment to make the accommodations necessary for the boys with disabilities to learn the lessons we all learned in physical education.

As I was thinking about what to write regarding this episode, I talked over the general issues it raises with Sarah Vinson, one of the Emory Medical School residents I teach in my clinic. Sarah astutely pointed out that students aren’t ever allowed to simply “not participate” in math class. This, of course, is true: if either boy had a math disability, the math lesson would be modified to allow their full participation at a level appropriate for them, and they would be expected to participate. The time wouldn’t simply be wasted. The boys wouldn’t simply be left to their own devices, literally.

Thank goodness Max and Micah find one another and use what could be completely wasted time to work on their social skills and to make friends. Good for the boys!
I remember nearly every time Frankie has made a friend. These have been times of celebration and pride for us as parents. I am sure parents who have children who struggle with mobility, sight or reading have the same memories of their children’s successes in overcoming their core difficulty. For those of us with children on the spectrum, our child making a friend is the real measure of winning against the autism. In the blossoming of Max and Micah’s friendship we see all of his, his parents’ and his therapists’ hard work paying off as he overcomes his Asperger’s. Too bad the school isn’t doing their part to help both boys.

Written by Roy Q. Sanders, M.D.

I’m Joey and I Met President Obama!

February 15, 2012 7 comments

Hi I’m Joey – I got to meet President Obama at the White House Science Fair. Meeting him was really fun, and he’s really nice. I showed him my Extreme Marshmallow Cannon. The White House Staff told me not to encourage the President to fire it, but he wanted to fire it! You can’t really say no to the President of the United States.

I never thought that it would become this big – but if more kids see my cannon – then more will realize they can build or do what ever they put their mind to, big or small. I want lots of kids to see how cool it is to MAKE and go to Maker Faires. Thanks to ‘Make and Cognizant’ for giving me this awesome experience!

Don’t be BORED…MAKE Something!

Joey Hudy and President Barack Obama

You can follow Joey on Twitter at @Joey_Hudy

The Autism Speaks Puzzle Piece Appeared on ABC’s ‘Grey’s Anatomy!’

February 10, 2012 9 comments

Last night we couldn’t believe our eyes! The Autism Speaks Puzzle Piece appeared on an episode of Grey’s Anatomy! There was no autism storyline, just our poster! Thanks so much ABC for helping to spread autism awareness!

You can watch full the episode here!

PS: We are on the 24th minute!

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