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Autism Speaks
We fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; increase awareness; and advocate for the needs of affected families.

Telephone: 888-777-6227
http://www.autismspeaks.org

CFC Code: 12413
IRS EIN Number: 20-2329938
AFR: 28.1% What's this?

Meet Brooke

Brooke was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short. It is a condition on the autism spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. This can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli. Just before she turned 4 years old. I started noticing that there was something off about Brooke before she was even 1 but at that age we just thought she would grow out of these things. Around the age of 2 was when I really started to worry. She wasn’t acting like other kids her age. She wasn’t talking much except for copying words and phrases that she heard all the time from us. She wasn’t communicating her needs and she wasn’t playing the same as other kids or taking an interest in playing with other kids.

read the story

Now, here is a first hand account from my sister-in-law Dawn about her and my brother Steve’s experience with Brooke, my niece – from before her diagnosis of Autism to the present.

Brooke was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short. It is a condition on the autism spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. This can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli. Just before she turned 4 years old. I started noticing that there was something off about Brooke before she was even 1 but at that age we just thought she would grow out of these things. Around the age of 2 was when I really started to worry. She wasn’t acting like other kids her age. She wasn’t talking much except for copying words and phrases that she heard all the time from us. She wasn’t communicating her needs and she wasn’t playing the same as other kids or taking an interest in playing with other kids. Over the course of that year, I went to the doctor 3 times and told him I had concerns. He just told me she would catch up and that all kids develop differently. I trusted him for awhile but eventually found someone else to help me. I searched the phone book and found the Early Childhood Intervention Program in Regina and got set up with this program. They pointed me in the right direction. I went back to my doctor and told him that I wanted a referral to the Wascana Rehabilitation Children’s Program in Regina and that is when she finally received her diagnosis.

It was a relief to finally get the answers we were looking for, but at the same time we felt very overwhelmed. We did not know a lot about Autism so we tried very hard to read everything we could and learn as much as possible about this disorder. We really didn’t know where to begin, but fortunately we had enrolled Brooke into a preschool program with a teacher who really did wonders helping our little girl. At this time there was a lot of guilt for me, especially as I started to think that it was my fault she was like this. I started to think maybe I did something wrong while I was pregnant with her – but really I followed all the rules. Didn’t take any medications, didn’t drink, and didn’t smoke. I did everything I could so why was this happening to our little girl. I did more reading and realized that there is no known cause for Autism and it doesn’t discriminate. All races and both males and females can be affected. I was driving myself nuts trying to figure it out. After this stage was kind of a mourning stage for me. Realizing that all the hopes and dreams I had for my little girl may never be there. She may never be able to drive a car, she may never have friends, she may never graduate as a typical Grade 12 student, she may never go to University, she may never get married nor have kids of her own. This took a lot out of me. I cried a lot about this but eventually that faded away and I started to just think in the present. We then faced a lot of loneliness and isolation. We really didn’t go out much because at that time Brooke would get very upset and was prone to extreme outbursts. She just wasn’t able to deal with the world around her. We didn’t go out to restaurants, we didn’t go shopping, and we didn’t go to friends houses. I think the hardest part about having a child with Autism for us has been that other people just don’t get it – and I am not just talking about strangers. Friends and family included. We have heard so many times that if we would just discipline her more or if she wasn’t so spoiled she wouldn’t act like that. Well it hurts when you hear that over and over again. I don’t think anyone truly gets it until they actually live in the situation.

Brooke is now 10 years old and we are now able to go out and enjoy the company of our friends and family with some limitations. As we grew so did they but there are still times when we hear different hurtful things, but we are at a point in our life where we can shrug them off more easily.

School was also a struggle for Brooke because at first she was placed in a program with both special education and regular classroom settings but she just did not function well in it. She had too many sensory issues and would get thrown off by the other children. She is now in a regular classroom with a modified program and full-time teacher’s aide. This is the perfect fit for her. She has been doing this same program for 3 years and it has been very successful for her. She has made incredible growth in the last 3 years. She is reading, writing, and doing basic math skills. She is at a lower level than the other kids in her class but she is learning everyday.

Brooke is not able to ride a bike, she is not able to go for a walk outside on her own, she can not swim, she has never had a friend come over to play at our house, she has never been on a sleepover, and she has never been to a friend’s birthday party. These are all things that typical 10 year old children have done tons of time. Things that many of us take for granted but Brooke doesn’t even know she is missing them. It is us as her parents that often feel the regret for her. There are times when we wish things could be different for her and we struggle everyday with what life will hold for Brooke but we are optimistic. We just want her to be happy and so far she is. She has a wonderful sense of humor and a personality that everyone remembers. We often find ourselves wishing we were more like her. She doesn’t care what others think of her. She lives life in the now. She doesn’t stress about the future. We learn from her everyday of our lives and that is what keeps us going. She is beautiful and inspiring and we are so proud to have her as a daughter.

Thank you Dawn and Steve for sharing your story. I am also proud to have Brooke as my niece, and you two and Noah, my nephew/Godson as my family. Brooke was one of the many faces of Autism that was featured in The Globe & Mail this past week. If you want to check that out, click here for the link to it.

Some background info on Autism:

Autism is a neurological disorder that affects the way the brain processes information. This in turn affects the development and behavior of people who have autism. All children and adults with Autism Spectrum disorders are affected in the areas of verbal and non-verbal communication, social skills and relationships, and behavior, interests and activities. Despite sharing these three identifiable challenges, autism is called a Spectrum Disorder because there is a wide range of symptoms that people with autism may display, as well as a range in the degree to which the symptoms affect their lives.

Pervasive Development Disorder Not Otherwise Specified (abbreviated as PDD-NOS) is characterized by severe and pervasive impairment in some areas such as reciprocal social interaction, or restricted activities and interests but the strict criteria for autistic disorder are not met.

For more information on Autism, visit AutismSpeaks.org and to find out more information about World Autism Awareness Day, click here.

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All News and Press Releases

Katie Couric to Host a Twitter Chat on Autism

Wed, 22 May 2013

Katie Couric will be hosting a Twitter Chat on Wednesday May 29th at 1pm EST about autism.

May 22, 2013

We are thrilled to announce that Katie Couric will be hosting a Twitter Chat on Wednesday May 29th at 1pm EST about autism. She has invited specialists in the field as well as parents to participate. Stay tuned for more details!

On May 30th Liz Feld, Autism Speaks' President, and Lisa Goring, Vice President of Family Services, will appear on the Katie Show where she spotlights autism. Check your local listings.

German Business Software Company to Employ People with Autism

Wed, 22 May 2013

SAP will hire people with autism as software testers, programmers and data quality assurance specialists across the world.

May 22, 2013

German business software company SAP will start to employ people with autism as software testers, programmers and data quality assurance specialists across the world as it teams up with Denmark's Specialisterne. Specialisterne works to assess, train and employ individuals with autism as consultants in IT and other sectors with technically oriented tasks and jobs. SAP will become the first company to work with Specialisterne on a global basis.

SAP promised that 1 percent of its 65,000-strong workforce would be people with autism by 2020. This move shows that SAP recognizes that approximately 1 percent of the world’s population is on the autism spectrum and should be equally represented in the workforce. SAP clearly sees a great value in the population of people with autism is showing themselves to be a leader across the globe. It is our hope that other businesses around the world will follow.

Read more about the partnership between SAP and Specialisterne from CNBC, or on the SAP website.

Autism Speaks has created an Employment Tool Kit, written specifically for adults with autism, to help them research, find and keep employment in the current, competitive labor market. Click here to learn more about the Adult Initiatives at Autism Speaks.

Autism Speaks Responds to the Midwest Tornadoes

Tue, 21 May 2013

Autism Speaks is working hard to provide resources to families in the autism community affected by the tornadoes in the Midwest.

May 21, 2013

Autism Speaks extends our deepest sympathies to the families affected by this week's devastating tornadoes in the Midwest. We are working hard to provide information, resources, and assistance to families affected by autism who have experienced or continue to experience the effects of these horrible events.

AutismCares

AutismCares provides grants for individuals with Autism Spectrum Disorders during times of crisis or unplanned hardships. Financial support awards provide financial relief for individuals with ASD and their families to help cover costs associated with critical living expenses.

Autism Response Team

The Autism Speaks Autism Response Team is taking calls from families affected by autism and the tornadoes. Trained staff members (both English and Spanish speaking) are available to provide support and resources during this difficult time. Families can call the Autism Response Team at 1-888-288-4762, en Español at 888-772-9050, or email us at familyservices@autismspeaks.org.

Autism Safety Project

The Autism Safety Project provides information for families and First Responders with information and guidelines for communicating with individuals with Autism Spectrum Disorder (ASD) in emergency situations.

Resources for Children with Autism

In the wake of the tornadoes, children all over the country are asking questions. Children are likely very frightened and may need help better understanding what happened. Helping a Child Living with Autism to Deal with Disaster is adapted from an article by school psychologists Dr. Peter Faustino and Dr. Andrew Livanis.

Helping Children Deal with Tragic Events in the News, a resource from Mr. Rogers at PBS, is another great tool to help your children better comprehend and cope with yesterday's tragedy.

FEMA's Tips for Helping Children Cope with a Disaster is another tool to help children understand the tornadoes..

American Red Cross

Find help in your area. Find an open shelter, search the safe and well listings, and read disaster recovery guides.
www.redcross.org/find-help

Contact your Local American Red Cross
www.redcross.org/find-your-local-chapter

Find an Open American Red Cross Shelter
www.redcross.org/find-help/shelter

Federal Emergency Management Agency

FEMA’s mission is to support our citizens and first responders to ensure that as a nation we work together to build, sustain, and improve our capability to prepare for, protect against, respond to, recover from, and mitigate all hazards.
www.fema.gov

Apply for Assistance from FEMA
www.fema.gov/apply-assistance
If you do not have access to a computer, you can apply for assistance via your smartphone at m.fema.gov, or by phone by calling (800) 621-3362 or TTY (800) 462-7585 for people with speech or hearing disabilities.

Tips from FEMA: What to do Before, During and After Tornadoes
FEMA's ready.gov provides tornado-specific tips, information about putting together safety plans and more.
www.ready.gov/tornadoes

Tips from FEMA: Coping with Disaster
The emotional toll that disaster brings can sometimes be even more devastating than the financial strains of damage and loss of home, business, or personal property. FEMA has put together a page of tips to help you and your family cope with the aftermath of natural disasters.
www.fema.gov/coping-disaster
A special section on Tips for Helping Children Cope with a Disaster:
www.fema.gov/coping-disaster#4

Find a Disaster Recovery Center Near You
A Disaster Recovery Center is a readily accessible facility or mobile office where applicants may go for information about FEMA or other disaster assistance programs, or for questions related to your case. The Disaster Recovery Center (DRC) Locator allows individuals to search for DRCs nearest to their location. DRC Locator also provides additional information about each DRC, such as hours of operation, services offered, and driving directions to the DRC.
www.fema.gov/disaster-recovery-centers

For more information or resources, contact our Autism Response Team at 888-288-4762 (en Espanol 888-772-9050) or email us at familyservices@autismspeaks.org.

Autism Speaks Launches New Ad Council Campaign – “Maybe”

Tue, 21 May 2013

New series of public service advertisements in English and Spanish designed to reach African American and Hispanic parents

May 20, 2013

Extending its award-winning “Learn the Signs” campaign, Autism Speaks today launched the “Maybe” campaign, a new series of public service advertisements (PSAs) designed to reach African American and Hispanic parents. According to research, children in these communities are often diagnosed later than the national average. The PSAs, which are being distributed to media outlets nationwide this week, show some of the early signs of autism and encourage parents to take immediate action if their child is not meeting standard developmental milestones. Read a story on the campaign launch from the New York Times.

According to the CDC, the average age of diagnosis is 4-5 years, but a reliable autism diagnosis can be made as early as 18-24 months. While early detection is critical, research shows that many parents have very little knowledge about autism and its symptoms. The current age of diagnosis among low income families, as well as African Americans and Hispanics, is higher than the general public. With appropriate early intervention services from ages 3-5, between 20 percent and 50 percent of children diagnosed with autism will be able to attend mainstream kindergarten.

The new “Maybe” PSAs show parents observing the unusual behavior or non-reaction of their child in seemingly ordinary situations. A child’s lack of eye contact, babbling or big smiles invite parental worry and speculation: “maybe it’s this” or “maybe it’s that.” Showing the subtle presence of potential problems in otherwise everyday instances, the PSAs emphasize that these “maybes” are reasons enough for parents to consult their pediatrician or primary care provider for further screening. The PSAs encourage parents to seek further information about the early signs of autism and additional screening resources at autismspeaks.org/signs and autismspeaks.org/aprende for Spanish information.

In addition to the “Maybe” PSAs, Autism Speaks kicked off its Early Access to Care initiative to reduce the average age of autism diagnosis and increase access to screening and evidence-based early intervention services. Autism Speaks’ Early Access to Care initiative focuses on reaching out to underserved communities, utilizing new and existing technologies, leveraging local community resources, engaging federal and state partners, using parents and para-professionals as dissemination channels and training providers of screening, diagnosis and intervention techniques. The program includes new website information and resources, screening events with volunteer clinicians, coordinated activities with federal and regional partners, training opportunities for professionals and the distribution of research findings, tools and resources.

“We know we can diagnose children sooner, and the earlier the diagnosis occurs, the faster a child can start receiving intervention, resulting in better outcomes,” said Autism Speaks President Liz Feld. “While we have seen a great increase in awareness thanks to our partnership with the Ad Council, many parents still don’t know what red flags to look for in their children’s behavior and development. If a parent has a concern, they should not wait – they should talk to a pediatrician immediately.&rdquo

In conjunction with the launch of the campaign, Autism Speaks is also educating through text message. People are encouraged to learn the signs of autism by answering six simple questions via text message*. Users can text MAYBE to 30644 to begin or in Spanish, text QUIZAS to 30644.

Since the launch of the “Learn the Signs” campaign in 2006, the percentage of parents of young children who have spoken with their doctor about autism has increased by more than 60 percent (from 8 to 13 percent) and the number of parents who say autism is very or somewhat common among young children has increased from 45 to 65 percent.

The new “Maybe” PSAs were created pro bono by Autism Speaks’ award-winning lead creative agency BBDO and LatinWorks. The ads will air and run in advertising time and space entirely donated by the media. Since the launch of the campaign, media outlets have donated nearly $376 million in time and space for the ads. The PSAs have also earned numerous awards, including an Effie Award for advertising effectiveness in 2008, a Silver Telly in 2009, a Silver Addy and Gold Ogilvy in 2011.

*Standard message and data rates may apply.

Sharing Condolences with the Families of Mikaela Lynch, Owen Black and Drew Howell

Mon, 20 May 2013

In the wake of the tragic events that took place last week, we’d like to express our heartfelt condolences to the families affected.

May 20, 2013

In the wake of the tragic events that took place in California, Florida and Ohio in the last week, we’d like to express our heartfelt condolences to the families of Mikaela Lynch, Owen Black and Drew Howell, and also offer thanks to the searchers. Unfortunately, wandering-related tragedies are far too common in the autism community. In a 2012 study funded by Autism Speaks through our support of the Interactive Autism Network (IAN), nearly half of parents surveyed reported that a child with ASD had attempted to wander or run away at least once after age 4.

Autism Speaks is proud to be part of the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration, a working group of six national non-profit autism organizations whose mission is to prevent autism-related wandering incidents and deaths. The AWAARE website contains a variety of resources, tips and tools for families of individuals with autism as well as first responders, including tool kits and an autism-wandering prevention brochure. The Autism Speaks Autism Safety Project also provides resources designed to help keep you and your family safe both at home and in the community.

$50 pays for a single 100 Day Kit. The Autism Speaks 100 Day Kit is created specifically for newly diagnosed families, to make the best possible use of the 100 days following the diagnosis of autism. The kit contains information and advice collected from trusted and respected experts on autism as well as from parents of children with autism.

Autism Speaks public service announcement “Learn the Signs” campaign, produced with the Ad Council and BBDO, has received over $210 million in donated media and is responsible for an unprecedented increase in national and global autism awareness.

Autism Speaks increased its focus on the necessary supports and services for adolescents and adults with autism through programs such as Advancing Futures for Adults with Autism and Autism in the Workplace.

In 2009 alone, seven states enacted new autism insurance reform laws: New Mexico, Montana, Nevada, Colorado, Connecticut, Wisconsin and New Jersey. Presently, an additional 25 states have similar insurance reform legislation under consideration.

RESEARCH

Through the Global Autism Public Health initiative, Autism Speaks facilitated the first prevalence studies in South Korea, Taiwan, Ireland and Mexico. In addition, Autism Speaks supported the translation of standardized diagnostic instruments into languages spoken by 1.75 billion people.

The Interactive Autism Network (IAN), the first national online autism registry, is accelerating autism research by linking more than 30,000 registered family members to researchers nationwide. This year, IAN contributed data to the largest published study of concordance among ASD twin pairs to date. IAN also published reports on family stress and gender differences in 2009.

QUALITY OF LIFE

Autism Speaks called on the government to step up its funding of autism research and services when the CDC announced the alarming new prevalence numbers of 1 in 88 children and 1 in 54 boys.

Autism Speaks launched the Autism Safety Project, an online tool kit for individuals with autism, families, and first responders that provides information and strategies to promote safety in emergency situati

Advancing Futures for Adults with Autism, a national consortium of autism organizations, hosted a National Town Hall, coordinated by Autism Speaks.

ADVOCACY

After President Obama’s election, the White House website prominently featured autism as part of the disabilities agenda, the only disorder specifically cited. In his presidential campaign, Obama pledged to seek to increase federal ASD funding for research, treatment, screenings, public awareness, and support services to $1 billion annually by the end of his first term in office. Additionally, he committed to bringing autism insurance reform to the entire nation.

The American Recovery and Reinvestment Act committed $10 billion in new funding to the National Institutes of Health over the next two years. Autism Speaks urged the National Institutes of Health to commit $200 million in stimulus funding to autism research and to date $116 million has been awarded through this incremental funding mechanism.