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In Their Own Words – Experience Breeds Ability

February 17, 2011 22 comments

This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – 02.17.11

February 17, 2011 1 comment

Ark. House panel endorses bill for autism coverage (Little Rock, Ark.)
Speech therapist and behavior consultant Dayna Miller cried Tuesday as she told a silent group of Arkansas legislators about selling nearly everything she owned to get treatment for her autistic, 10-year-son. Read more.

Faulty testosterone cycle may explain male autism bias (New Scientist)
More men than women have autism – now we may know why. Sex hormones regulate a gene linked with the condition, making it more likely that males will accumulate testosterone in the dangerous amounts that are thought to lead to autism. Read more.

North Dakota Senate passes bill on autism center program (Bismarck, N.D.)
A proposed program to help those with autism spectrum disorder and their families unanimously passed the state Senate on Wednesday. Read more.

How one mother copes with her son’s autism – Cafe owner Caroline Chan launches her KurumiKidz CD (Canada)
Cafe owner Caroline Chan, who has just produced a children’s music CD, has spoken of the challenges she faced in dealing with her son’s autism – and how those challenges have inspired her to make positive changes in her own life.
Read more.

Parents push for autism insurance bill (West Virginia Public Broadcasting)
For the past four years, West Virginia lawmakers have failed to pass bills requiring insurers cover services for children with autism, but parents are holding out hope that this year will be different. Read more.


A Boy and the Budget

February 17, 2011 11 comments

This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.

President Obama’s Federal Budget for the Fiscal Year 2012 allocated funding to various programs and initiatives designed to help “Win the Future for People with Disabilities.” These proposals include: expanding autism research, increasing support for workers with disabilities, and increasing funding for the education of children with disabilities. Click here to read more.

Have you met my son Jack?  He’s pretty awesome. Ok, I’m kind of biased, but he really is.  He’s handsome and smart, with a goofy sense of humor.  He loves to play the violin, go bowling with his friends, eat pizza and watch old Tom & Jerry cartoons. He has two brothers, who are equally awesome, and they spend a lot of time being gross boys together. You know, laughing about gross boy things. Jack likes hotels a lot and spends a lot of time researching them, because he wants to own a hotel when he grows up.

Sounds pretty typical on paper, doesn’t it?  Jack has autism. And in that one word, anything typical goes right out the window… and fast.

His past, present and future are anything but typical.   As his mother, I am plagued by questions about how my baby boy “got” autism.  I am constantly fighting someone for access to insurance coverage, or for his therapies, or for appropriate educational services.  Like most parents of a child with autism, I lie awake at night wondering how my child will support himself, because although he is very smart, the social and communication deficits that are the core of autism will make sustainable employment very challenging – and that’s if there is even a company that would hire him.

One out of every 110 people in America today is a “Jack.”  The tsunami is coming.

In my life as Connecticut’s advocacy chair, I try to read and process as much as I can about policy and legislation that may impact all of the “Jacks” here in my state, so I can be as effective as possible when communicating the needs of our community to state and federal policy makers.  I am NOT a policy maker, but I’m a mom advocating for my very own Jack and every time I see “autism” in a legislative document, I consider it a victory.  Having been at this autism gig for over seven years now – helping my state enact autism insurance reform law, as well as cultivating a close working relationship with elected officials –  I also have a pretty decent understanding of what it takes to get policy-makers to pay attention to the issues that affect individuals with disabilities like autism.

I recently read President Obama’s federal budget proposal for people with disabilities, which became the impetus for this blog piece.  I was pleased to see that the President’s proposal included funding for research through the NIH (National Institute of Health), so that we can get to the root of the autism epidemic and provide appropriate treatments for our families.  The President’s proposal also includes “a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide a high quality education and help offset state and local education costs for children with disabilities.”  Among other recommendations, the President’s budget plan proposes funding to encourage workforce innovation to make jobs accessible to people with disabilities (as Walgreens Distribution Centers has done) and suggests appropriating “$24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities.”

I might actually sleep a bit tonight knowing these proposals exist. I’m also comforted knowing that Autism Speaks has developed resources for kids like Jack as they make their way through adolescence towards adulthood (see links below).

Make no mistake, this is not a political endorsement.  Autism is not defined by a political party. It is defined by the families who live it day in and day out.  That being said, I do hope our elected officials in Washington, DC read this blog entry and take it to heart.  One out of every 110 people in this country are relying on them to help us take care of our precious children.

For more information:

Read Summary of President Obama’s FY2012 Federal Budget for Individual’s with Disabilities

Download the Autism Speaks Transition Tool Kit

Visit Advancing Futures for Adults with Autism (AFAA) website

It’s Time to Change the Conversation

February 17, 2011 143 comments

Autism Speaks recently declined an invitation to participate in a Dr. Oz show. In reviewing the pre-taping materials, it was clear that the program’s major focus was again on the vaccine debate, a debate that has been addressed multiple times, without resolution, and more importantly, a debate that prevents other equally important topics surrounding autism from being discussed. Last month, in a letter to the editor published by The New York Times, Autism Speaks’ Chief Science Officer Geraldine Dawson, Ph.D., said it is time now to focus our attention on the future and on the real problem: We still need answers to too many questions regarding causes and treatments for autism and we need to address the generation of a half million adolescents with autism who are about to enter adulthood without adequate supports.

Autism Speaks has consistently stated that children should be vaccinated to protect public health and the health of the individual child, and has urged families to develop a trusting and collaborative relationship with their pediatrician on all health matters including vaccination. While the Dr Oz show certainly makes for “Good TV,” this was not the televised conversation in which Autism Speaks believed it could make its most valued contribution on the science of autism. When “Good TV” presents “Good Science,” it makes an incredible difference for the families who struggle with autism and this is where we hope to be involved in the future.

In the short five years since Autism Speaks was formed, we have committed over $160 million in research on causes and treatments. In 2010, we analyzed the outcomes of the first 107 separate research grants funded by Autism Speaks and found that 82% of those completed studies resulted in 146 novel findings. We’ve “home grown” over 150 new scientists who are now committing their careers to the field of autism research. And even more impressive, for every dollar Autism Speaks committed to seed these innovative research projects, 10 dollars of additional research funding was leveraged in new grants from the federal government and other funding agencies.

Far beyond the research directly funded by Autism Speaks, there is new information and hope to share with parents. Effective diagnostics can identify infants at risk for autism as young as one-year old. We have learned that validated behavioral therapies can offer the best possible outcomes, particularly when started early, with such significantly increased cognitive, language and social skills, that in some cases, it may be possible for the child to no longer meet the diagnostic criteria for autism. The study of a wide range of treatments, including complementary and alternative therapies, will help parents find those that are truly effective to help them deal with medical conditions that so often are found in people with autism, from gastrointestinal to sleep disorders. Through Autism Speaks Autism Treatment Network, doctors are currently developing the gold-standard best practices for the treatment of the whole child with autism, which can be shared with practitioners in every town.

Autism Speaks sent a statement to Dr. Oz letting him know that we are eager to participate in a future program that focuses on how science offers hope for families. We encourage Dr. Oz and others in the media to feature the broader range of important issues facing families struggling with autism. These issues include:

·     The role of a multiple environmental factors that are potentially contributing to the increase in autism spectrum disorder (ASD) prevalence

·     New insights into the underlying biology of ASD that are leading to novel treatments

·     Ways we can address the medical conditions that impact the everyday lives of people with ASD, and

·     Programs that are being developed to help adolescents with ASD successfully transition to becoming happy and fulfilled adults.

Autism Speaks will always welcome the opportunity to talk about the scientific breakthroughs that are within our reach, and how by pulling together, we can advocate to increase research funding, end insurance discrimination, and create better services and support for people with ASD of all ages.

Parenthood and Learning to Let Go

February 16, 2011 4 comments

Episode 216: Amazing Andy and His Wonderful World of Bugs gave us a lot to think about this week. We can discuss the pressure and stress of planning a birthday party or even Max’s meltdown when Gaby changes her sticker rule.

But what really struck us, was  Zeek’s transformation in the way he saw Andy, the party planner. He was put off at first by Andy’s behavior. Why was he refusing help and not allowing people to touch his things? Once Adam explains that Andy does in fact has Asperger’s he is impressed. It was eye opening for him to see that he was living an independent life.

For those families who are preparing for the journey from adolescence into adulthood, please check out our Transition Tool Kit. It is an extremely useful resource.

We love the ‘Experts Speaks‘ portion of the ‘Parenthood‘ website, and we think it is important to share with you, especially this week. Here Roy Q. Sanders, M.D., shares his experience in learning to ‘let go’ of his adolescent son.

Our son Frankie will be 15 in May. Not a day goes by without my thinking about his future. The discussion over the past month has been whether he will go to our public high school or not next fall. He is absolutely sure that the time is right for him to “move on.” Yesterday, while we were cleaning the chicken coop (birds are his thing), he told me, in his own peculiar sounding voice, “I know I have autism. I know I am different. I am okay with that.” When I expressed my concerns about his not having the support that he has now at his current school (a specialized program for teenagers with autism) he told me, “You are worrying too much. You need to let it go.”

I had to smile. How many times have I told Frankie “You need to let it go”?

I suppose it’s difficult for any parent to imagine a child all grown up and taking care of him or herself. For those of us with children on the spectrum – and even though we worry about it every day – actually imagining a kid like Frankie all grown up and taking care of himself and being “okay with his autism” is an almost impossible leap of imagination. But we do know that our children will grow up, and we know each of them will live their lives as independently as they are capable with the tools we have given them.

Here’s another thing Frankie told me: “Don’t worry, you have taught me how to do this. You have taught me everything.” Like Adam in this episode, I tend to get so wrapped up in the day-to-day struggles with Frankie that I forget how much he is learning and how much his (and our) hard work are paying off. I often don’t see that we are making real progress in helping him grow into an independent adult with his own life, his own interests, and his own difficulties and quirks – just like Andy the Bug Man.

What I have seen with Frankie’s typical friendships is the same sort of understanding and support that Zeek gives Andy. Frankie’s friends are all ready to jump in and help. They “have his back.” Because they understand Frankie has autism and that he’s “different,” they do what any good friends would do: they help him out, and do what they can to structure the environment to give him room to be himself in all of his wonderful differentness.

For years I have counseled parents, teachers, patients and all sorts of social groups on how to look beyond any disabilities and see the abilities. I have advocated for inclusion. I have challenged us all to work to move beyond acceptance and toward embracing our children’s differences. I have believed (along with Jennie Weiss Block, author of “Copious Hosting: A Theology of Access for People with Disabilities”) that welcoming and embracing people with disabilities brings a theology of liberation – not only to the disabled but to those of us who are “abled” as well. We are all blessed. Now I find myself on the horns of a dilemma. Do I opt for safety, security, nurturing and growth in a very secure environment for the next few years before “allowing” Frankie the path to more complete inclusion… or do I walk with him now into the messiness of life in the “real world” and all the growth, pain and joy that this choice entails? Do I “allow” him to liberate himself while bringing liberation to those around him? Do I restrict his willingness to give himself or the willingness of others to give to him?

In reality, the choice may not be quite so stark, but it sure feels that way. This episode has been a great reminder of not only how our children’s passions can give them a life of working and loving, but also of how painful it can be for parents to “let go” and “allow” their children to risk the pain, but also experience the joy of living their own life.

Written by Roy Q. Sanders, M.D.

Make sure to visit the Parenthood website to watch full episodes!

Autism in the News – 02.16.11

February 16, 2011 1 comment

Ark. House panel approves bill that would force insurers to cover autism diagnosis, treatment (Little Rock, Ark.)
Speech therapist and behavior consultant Dayna Miller cried Tuesday as she told a silent group of Arkansas legislators about selling nearly everything she owned to get treatment for her autistic, 10-year-son. Read more.

Michael McCartan: Golden Globe award brings autism needed attention (The Times Herald)
It’s safe to say Temple Grandin is the most famous person with autism in the world. She is a prolific author, noted for her activism on behalf of individuals with autism and for her stunning contributions to our understanding of animal behavior, both of which grew out of her experience with autism. Read more.

Brady, Robinson Peete to host NAACP Image Awards (Los Angeles, Calif.)
Actor and comedian Wayne Brady and talk show host, actress and author Holly Robinson Peete will host the 42nd NAACP Image Awards, broadcast live from Los Angeles’ historic Shrine Auditorium. Read more.

Autism Spectrum Therapies Expands Services to the Bay Area (Clover City, Calif.)
Autism Spectrum Therapies (AST), an agency providing comprehensive autism services, has expanded its services to the Bay Area, including the cities ofAlameda,Berkeley,El Cerrito,Richmond,Oakland,FremontandLivermore. AST provides support for individuals with autism from infancy through adulthood. Read more.

Charity Motorbike Parade Thunders Through Dubai (Dubai)
“We are riding in something called the Thunder Parade. We’ve got I think in excess of a thousand bikes and we’ll be riding out on the highway with a police escort and it’s just time to show off the bikes and show Dubai what the bikers’ community is about.” Read more.

Autism Speaks launches major effort to develop new effective medical treatments for people with ASD

February 15, 2011 32 comments

This guest post is by Nancy Jones, Ph.D, the Program Director for the Autism Treatment Network and Autism Clinical Trials Network at Autism Speaks.

Developing novel and more effective treatments that improve quality of life for individuals with autism is a great need but also a substantial challenge. The challenge is not only to discover treatments but also to support their efficacy with evidence from rigorous treatment trials.

There is a large body of research showing that a wide range of behavioral interventions are safe and effective for improving cognitive and language abilities and adaptive behavior in children with ASD.  Many people with ASD can receive additional benefit from the use of medicines, but the medications that are currently available,  tend only to address symptoms associated with ASD, such as irritability and hyperactivity.  While important, there is a great need to develop medications that can help reduce the core symptoms of ASD, including difficulties in social interaction and communication and repetitive behaviors.  To accelerate progress in this area, this year, Autism Speaks launched a Translational Medicine Research Initiative. Its overarching goal is to increase the number of safe and effective medical treatments available for individuals with ASD.

One may wonder why the development of new treatments is such a challenging task. One challenge is getting all of the different stakeholders needed to accomplish this goal together and working collaboratively by sharing resources and ideas.  This means bringing together the academic scientists who are making basic discoveries about autism, the clinicians treating children and conducting the clinical trials, private and public funders who provide research grants,  the companies that develop pharmaceutical and nutritional treatments and the families and individuals with ASD.  To achieve this, one of the first endeavors of Autism Speaks’ Translational Research Initiative was to host two meetings bringing together these key stakeholders. These meetings launched the initiative and set the stage for further directions and activities.

One barrier to the development of effective treatments has been the tremendous individual differences found across individuals with ASD in terms of their symptoms and needs.  This raises  two important questions: 1) How do we best identify the individuals who will be most responsive to specific treatment, and 2) What is the best way to measure that a treatment has actually had an effect? These questions are concerned with “outcome measures” – the  assessments that are used to determine whether a treatment has been effective.  Outcome measures were the focus of the first meeting, Outcome Measures for Clinical Trials with Individuals with ASD: Challenges and Opportunities, co-sponsored by Autism Speaks and Pfizer, Inc., held in Washington DC on Jan. 11-12, 2011. The meeting hosted clinicians, academic experts in the field of outcome measurement, representatives from eight pharmaceutical companies, funding agencies, and community stakeholders. The meeting’s goals were:  1) to discuss strategies for promoting more effective clinical trials of medications to address autism core and associated symptoms and  2)to develop consensus regarding  the best clinical assessments to determine whether a treatment has been effective in clinical trials.

The group discussed the following key points to be addressed in future initiatives:

  • Since there are currently a number of very good outcome measures that are appropriate for clinical trials,developing consensus on a group of standard measures is a key next step. FDA approval of a medication requires consensus outcome measures.  Among the questions that were discussed in regards to standard measures were: 1)  what are the most sensitive outcome measures, 2) what is the best setting to measure outcome, and 3)  from whom should the outcome data be collected (parents, teachers, clinicians)?
  • There are opportunities to develop new outcome measures based on promising technologies that provide measures of biological change.  Experts in new technologies that can make use of devices such as the iPhone to collect outcome data in real time and in real world settings also offered several promising ideas.
  • Long-term success of those conducting clinical trials with people with ASD requires closer collaboration between parents, clinicians, and the basic scientists who are developing treatment targets.

The second meeting was focused on the basic science that is aimed at developing new treatment targets. Translational Medicine Research in ASD: Challenges and Opportunities, was held January 25-27, 2011 in Santa Monica, CA. The goal of this meeting was to identify ways to accelerate the basic science needed to discover and develop new medicines.    The meeting included a cross-section of leaders from research funding agencies and the pharmaceutical industry, as well as experts in the fields of molecular biology, neuroscience, animal models, metabolism, and clinical research.  Topics ranged from single gene disorders to medical conditions such as GI problems, epilepsy, and mitochondrial disorder, to assays for screening medications, such as induced pluripotent stem cells.

The discussion and presentations addressed three key issues: 1) What have we learned from drug discovery in other disorders that can help us develop novel autism treatments? 2) What does autism biology tell us about promising systems and pathways that might be amenable to treatment? 3) What is needed to take promising ideas from the lab and speed their development into effective treatments?

A number of key points were highlighted, including:

  • Private and public partnerships involving non-profit organizations, NIH, and industry will be critical for providing the supportive environment to move discovery forward.  Partnerships with industry, in particular, are crucial since these companies are responsible for bringing medications to market.  These partnerships are necessary not just for funding opportunities, but also for the creation of research collaborations and shared resources, such as biorepositories and databases.
  • New findings in the areas of genetics and neuroscience are helping us better understand the biology of ASD and are pointing toward the development of new treatments. Some new treatments are already in the pipeline and others are being studied.  Continued investments in understanding the underlying physiology and biology of ASD are crucial for making continued progress in this area.
  • The discovery of new therapeutics for ASD can take advantage of what has been learned from related single gene disorders such as Rett Syndrome, Fragile X and Tuberous Sclerosis.   Because we know so much more about the biology of these conditions, drugs targets and in some cases, human clinical trials are already developed for these conditions.  Will some of these medications also be useful for the larger population of individuals with ASD?
  • New technologies exist for understanding the biology of ASD and testing novel therapeutics that were not previously available.  The hope is that these technologies will accelerate discovery.
  • Individuals with ASD and their families can provide vital information about their experience with treatments and their treatment needs to prioritize future research investments.  Progress will depend on families and scientists working closely together.

Many families and individuals with ASD have been awaiting the development of novel treatment options. A clear message from both these meetings is that we are at a place where we have knowledge, promising technologies, and most importantly, the interest and commitment amongst key stakeholders to be successful in this pursuit.

Autism in the News – 02.15.11

February 15, 2011 2 comments

J-Mac continues to inspire five years after scoring feat (Democrat and Chronicle)
Can it really be that five years have passed since that remarkable night in February of 2006 when Jason McElwain of Greece gave Rochester – and ultimately, the world – a performance no one will ever forget? Read more.

10-year-old autistic boy, Brandon Strong, punished for behavior caused by his condition (East New York, N.Y.)
An East New York boy diagnosed with autism has gotten dozens of detentions this school year for behaviors caused by his condition, his parents say. Read more.

Proposed Law Cracks Down on Fake Autism Therapists (The Daily Stamford)
State lawmakers and autism advocates are proposing measures to protect autistic children from people such as Stacy Lore, the woman convicted of misrepresenting herself as an autism therapist. Read more.

Rhodesian ridgeback stands tall as autism service dog (New York, N.Y.)
Janice Wolfe is waiting for her late lunch of lobster and scallop ravioli at the Affinia Hotel. Her Rhodesian ridgeback, Wyatt, is lying beside her. Read more.

Funding cut fears hit Burnley autism centre (UK)
Hundreds of young people suffering from autism and their families across East Lancashire are facing the loss of vital respite services. Read more.

Autism in the News – 02.12.11

February 14, 2011 Leave a comment

Norwalk lawmakers propose autism protection bill (Norwalk, Conn.)
A bipartisan coalition of lawmakers is proposing a bill that would crack down on people who fraudulently represent themselves as board certified behavior analysts – primarily for the treatment of children with autism. Read more.

Autistic youths get fewer services after high school (Boston, Mass.)
As children diagnosed with autism spectrum disorders age, they are less likely to use special services after high school. In a study that analyzed data from a long-term survey of 920 autistic children conducted by the US Department of Education, the most dramatic finding was a decrease in the percentage who received speech therapy from 75 percent during school to 9 percent after graduation. Read more.

Autism Sunday about one of life’s puzzles (Canada)
One could have gotten a lot of reading done in the Moose Jaw Union Hospital’s Wascana Room on Sunday. Read more.

Playground time, technology work for children with autism (The Brownsville Herald)
Last year, stimulus money was being spread across the country to the nation’s school districts, and in preparation for the arrival of those stimulus funds, the local school district encouraged campuses to write small grants on ways the money could be used to help children learn better. Read more.

South Coast group helping residents with medical travel (Canada)
For anyone needing to travel outside of coastal Labrador for medical reasons, the transportation, accommodation and living expenses can be quite steep. Residents of coastal Labrador needing to travel for medical appointments on a regular basis know how expensive it can be. Read more.



My Pledge

February 14, 2011 11 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

Ever since I was aware that I was on the spectrum I’ve always had difficulty over hearing people use certain words in their every day conversations.  I’m bringing this up, since I have recently been in a situation where one of my peers used the word “autism” in a derogatory fashion about one of my friends who was not on the spectrum. As someone who has been advocating for those on the spectrum for several years now I have always tried to pick my battles wisely. Sometimes though it’s not that simple; you have to say enough is enough and take a stand on something, no matter the costs.

My friend said during this conversation, “Why is she not speaking tonight, it’s like she has autism or something.” As soon as this was said, I was angry. Angry that someone would use autism in that context and also how someone would use the word knowing that I was on the spectrum. This was not the first time I had heard the word autism being used like this, but I knew this was the last time I wanted to hear it. Instead of getting angry and verbally lashing out, I am taking the time to educate people about the hurtfulness some words can have on certain individuals.

With this I had an idea. Over a year ago I took a pledge to stop using the word “retarded” via the Spread the Word to End The Word Campaign through the website r-word.org. With permission, our Autism Speaks U Chapter at Seton Hall will also be doing a similar project in relation to World Autism Awareness Day on April 2nd. Today however I would like to make a pledge via the Autism Speaks Blog in regards to autism. With this, I am also making a pledge to put myself out there to say what is on my mind more and to be more open to people in general. Over the past couple of years I have learned that there is a tremendous opportunity for myself to do some good for many families and individuals on the spectrum.

I encourage others to make a pledge, regardless if you are on the spectrum or not because the bottom line is you can make a difference and it all starts off with awareness. Here’s my pledge:

I, Kerry Magro, make the pledge to not use the word autism in a derogatory fashion due to the harmful effects it has on certain individuals. I will also make my voice heard and educate others who want to learn and/or are unaware about autism. As an individual on the spectrum, I hereby take it as my duty to stand up and protect my fellow brothers and sisters in the autistic community as we progress forward within our disability movement. Nothing About Us Without Us.”- James Charlton

(Would you be willing to make a pledge? Feel free to post your own pledges in the comment section below. Thank You.)

This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org.

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