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Archive for May, 2011

Dining Out and Autism

May 31, 2011 71 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

The idea of dining out for a person with autism is often daunting. How do you prepare yourself or your child for going to a restaurant? Can you share some positive/negative dining experiences? What strategies do you employ to ensure the best experience possible for you and your family?


Autism in the News – 05.31.11

Study Suggests Special MRI Might Help Diagnose Autism (HealthDay)
At the moment, a diagnosis of autism is based on subjective evaluations, but a new way of using MRI might be an objective way of spotting the disorder, Columbia University researchers report. Read more.

Finish line gives kids with Autism new start (Australia)
Raising a child with autism is a real challenge for many Queensland families. Early intervention services can make a real difference to the quality of life of children with autism and their families. Read more.

Autistic children may need lifelong financial plan (Columbus, Ind.)
Moms and dads plan for family trips, college and weddings, but life sometimes throws a curve called autism. And it’s hitting more and more families. An average of one in 110 children in the United States has an autism spectrum disorder. Read more.

Driving with Autism (St. Louis Park Patch)
I have finished my tests and graduated. I am done with high school. So what’s next? I am going to be doing college classes during the summer, but I have a bigger goal in mind. I am going to get my driver’s license. Read more.

Education reversal over funding for autistic boy (The Age)
Six-year-old arraville boy Oscar French was denied funding for an integration aide at his mainstream school because he knew too many big words, such as ”flexible.” Read more.

Autism in the News – 05.27.11

May 27, 2011 1 comment

Rye Brook mom, son press for autism services, awareness (Rye Brook, N.Y.)
As the mother of an autistic son, Doris Perez aims high in her efforts to raise awareness — as high as the Empire StateBuilding. Read more.

Leaving (an Adult) Child for the First Time (The New York Times)
Liane Kupferberg Carter is leaving for Paris this afternoon. Probably. Almost definitely. Read more.

Complexities of Autism Extend to Its Treatment (HealthDay News)
Parents of children with autism often find themselves struggling to make sense of their child’s behavior. Read more.

Living With a Child With Autism (HealthDay News)
Julie Wismann knew her young daughter was troubled. The girl had been diagnosed with epilepsy at age 1 and put on medication, said Wismann, 34, of Centennial, Colo. But then the youngster, Kara Reno, began losing her words. Read more.

Ed Husar: Kathy Schwartz bids tearful farewell to special education career (Whig.com)
Kathy Schwartz has spent 29 of the last 38 years working with special education students in the Quincy School District’s early childhood program. 
Much of Schwartz’s effort was focused on kids with autism — the developmental disorder that affects social and communication skills. Read more.





The Latson Case in Virginia: A Danger Signal That We Can’t Ignore

May 27, 2011 57 comments

Teresa Champion is an attorney admitted to the bar in Kentucky and Washington State.   She has two children; Sydney and James, who has a diagnosis of autism.  She is a long time civic and community activist, who works with the Fairfax Autism Network (FAN) and the Virginia Ability Alliance (VAA). Champion is a member of the Council of Parent Attorneys and Advocates (COPAA). Currently, Teresa is volunteering for the Virginia Autism Project (VAP) as the Northern Virginia Regional Director.  

The Cry for Help:

I sat in the courtroom and sobbed.  I had never met this young man and I had just met his mother in person that morning.  Even though we were essentially strangers, I viscerally felt the anxiety and fear of this family.  Reginald “Neli” Latson has Asperger’s Syndrome, an Autism Spectrum Disorder (ASD) and was on trial for injuring a school resource officer.  I too have an 18-year old son with autism.

The evidence showed that Neli, in resisting arrest, had severely injured the officer, but only after an interchange that magnified his inability to process verbal input and significantly increased his sense of uncertainty and apprehension.  The officer had been alerted to look for an African American teenage male carrying a gun.  Neli had been sitting waiting for the library to open.  He had no gun.  Although initially cooperative when the officer approached him, Neli stopped cooperating when the police officer asked him for his name.  He had done nothing wrong.  The “rule,” he knew, was that police officers went after people who had done something wrong.  Since Neli knew he had not done anything wrong, to his concrete way of thinking, he didn’t need to obey the police officer.  So he didn’t comply with the police officer’s request that he identify himself and attempted to leave the scene.  It is undisputed that Neli did not possess a gun or any other weapon.  Until he encountered the officer, he had committed no crime.  The basis for the arrest was a county ordinance that makes it a crime to refuse to identify yourself in response to a request from a law enforcement officer.

Neli was found guilty of charges associated with an assault and the jury recommended a sentence of 10 ½ years.  In Virginia, the jury recommends a sentence and the judge imposes the sentence at a later date.  In Virginia, there is no parole.  He will serve every day of whatever sentence he is given.

Many ASD families who read about this case thought, “that could be my son/daughter.”  If the autism community doesn’t do something quickly, similar outcomes could face many more of our young adults.

How do we stop this from happening again?  We must educate and train the community at large about autism.  How do we help this young man and his family? Try to explain autism to the Judge and ask for treatment not punishment.

Helping the community at large:

During the pre-trial interviews of prospective jury members only one person was aware of Asperger’s Syndrome.  He did not make it into the jury box.  When Neli was being interviewed at the police station after the tragic event, he was asked if he had any sort of disability.  When he said he had Asperger’s, the police officer interviewing him said, “What’s that?”  That is too late.  Although the injured officer in this case has a disabled son, he didn’t recognize someone with an ASD when he encountered him, nor was he trained to deal with the likely consequences of Neli’s disability.

As this population with an ASD ages and those individuals, like Neli, who didn’t have access to adequate treatment and therapy become adults, we must explain autism to the community at large.  Just like we had to do for our children’s teachers, caregivers, and family members when they were younger.  We worked for acceptance and training everywhere they went.

We have to be one step ahead of our adults with an ASD in the community.  We must talk honestly about the hallmarks of someone with an ASD and also educate our young adults on how to interact with someone in law enforcement. We have to show our disabled adults how to be interviewed and possibly arrested by the police.  Statistics show they are seven times more likely to encounter law enforcement than the general population.[1]

The legal system is not equipped to deal with individuals that can’t respond appropriately and/or control their response because of a disability.  We have a lot of work to do to educate and train the judicial and legal systems and the community at large.

Helping Neli and his family:

Helping Neli and his family is a more complicated issue.  Funding supports in the community so that someone can be supported and live with a disability safely is a long-range goal that can’t be ignored.  A more immediate goal is let this 19- year old disabled man (who likes to read Goosebumps books) and his family know that he is treasured and they are cared about.  Most importantly – support the attorneys and professionals working to present a sentencing report to the judge that will explain the side of autism that the jury never got a chance to hear and understand.  He should be given rehabilitation and treatment not further incarceration.  Neli has been in jail since this incident happened in May, 2010 but he has been trapped inside the cell of autism his whole life.

Pay attention to this case and pray.

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

Here is a letter submitted to Judge Sharp from Gary Mayerson, the Director of Autism Speaks Federal Appeals Project.


[1]  http://www.autismriskmanagement.com/,  Dennis Debbaudt citing FBI Law Enforcement Bulletin,  April 2001.

 

 

Don’t Let the Sun Go Down on Combating Autism Act

May 26, 2011 5 comments

The landmark Combating Autism Act (CAA), signed into law by President George W. Bush in 2006, gave all of us in the autism community a foundation on which to build. But key provisions in the law are scheduled to sunset September 30. Unless Congress acts quickly to renew the law, the funding we need to continue vital research will vanish. The progress we have made over the past five years will grind to a halt. There simply is no more important or immediate issue for us today at the national level.

Autism impacts not just the people with the disorder themselves, but their immediate families as well as taxpayers who will have to pay higher taxes to care for people with autism if treatments and therapies are not developed to help them live independent lives. Fortunately, bills have just been introduced in both houses of Congress – the Combating Autism Reauthorization Act of 2011 (CARA) – to continue the momentum we have built since 2006. These bills have the support of both political parties, a rarity in Washington these days, but need the support of the entire autism community. The original 2006 act passed Congress with near unanimous support – it is time again to make sure your voice is heard with your Senators and Congressmen. Sign up to receive alerts from Autism Votes.

Why was CAA so important? For the first time, the U.S. government recognized the specific impact autism spectrum disorder (ASD) has on a significantly large portion of the American population. Nearly $1 billion in federal investment was authorized for biomedical and treatment research for autism. The law also required the development of a comprehensive, strategic plan requiring all federal agencies that have anything to do with autism, whether in health, education, or social services, to coordinate their efforts and, for the first time, communicate with each other through the Interagency Autism Coordinating Committee (IACC). This is important because it is easy for each agency to work in isolation without ever realizing how their work or study could impact another agency’s efforts.

One billion dollars is an extraordinary amount of money. But the fact that one in 110 children, including one in every 70 boys, is now diagnosed with an ASD is also extraordinary, an alarming testament to the growing crisis of autism in the U.S. It is easy to understand why our community is coming back to Congress to reauthorize this legislation for vital research. The newly introduced CARA bills would continue federal funding at current levels for another three years. The need for even more funding is obvious; but the concerns within Congress over the size of the federal deficit must be respected if we are to move forward.

The CAA has given us the foundation on which to continue to build. Some of the bricks in that foundation include:

  • Development of standards of care for medical and behavioral health, clinician guidelines and training
  • New treatments for commonly associated medical conditions, such as sleep and gastrointestinal disorders
  • Improved methods for autism screening and recommendation for universal screenings at well baby check-ups
  • Development of effective early intervention methods for toddlers
  • Detailed surveillance by the federal Centers for Disease Control and Prevention (CDC) of the increasing prevalence of ASD
  • Identification of several autism susceptibility genes leading to drug discovery and earlier detection in infants at risk for ASD

And what do we lose if CAA is not renewed?

  • A requirement holding the federal government accountable for its efforts to improve the lives of persons with ASDs through research
  • Two intervention networks – physical and behavioral health – that support the development of clinical care practice guidelines, clinical training and research on effective treatments
  • Augmented support for the University Centers of Excellence in Developmental Disability (UCEDD) to promote training and dissemination of best practices in ASD screening, diagnosis and treatment
  • The mandate requiring that a strategic plan for autism be updated annually
  • A shutdown of the IACC – the special team that has come together to share any and every advance that has emerged to help combat autism

One day, we will put a roof on autism – find the causes, effective treatments and, ultimately, answers for all those seeking a cure.

In the coming months we will need your help to contact your United States Members of Congress, both in the House and the Senate. Please sign up to receive alerts from Autism Votes. We make it easy for everyone to get involved. To speak your mind. To tell legislators what you want. To make Congress listen.

The FedEx 400 Benefiting Autism Speaks delivers

May 26, 2011 1 comment

It’s been a couple of weeks since the “FedEx 400 Benefiting Autism Speaks,” but we’re still feeling the love from our friends in NASCAR community.  The race weekend, May 13-15, was an overwhelming success thanks to our partners at FedEx, Dover International Speedway and Dollar General.  Here’s a recap in case you missed all of the excitement on TV.

On Friday, May 13, Autism Speaks rolled into Dover International Speedway ready to raise funds and spread autism awareness.  Autism Speaks President Mark Roithmayr kicked off the day with a live interview on the SiriusXM radio show “The Morning Drive.”  Roithmayr and host Mike Bagley discussed Sunday’s Sprint Series race and the ways NASCAR fans can help raise autism awareness.  Later in the day, Mark was joined by FedEx No. 11 Toyota driver Denny Hamlin for a press conference at the speedway’s media center.  In addition to featuring a special Autism Speaks puzzle piece logo schemed car, FedEx would donate $100,000 Autism Speaks if Hamlin won the race.  Following the press conference,  Red Horse Racing Competition Director Terry Cook treated everyone to a tour of the truck series team’s trailer.  Terry and his wife are wonderful autism advocates within NASCAR community.  A special thanks to Terry and the Red Horse Racing team for featuring theAutism Speaks puzzle piece logo on the hood of their No. 17 truck.

Saturday began with another Mark Roithmayr radio interview on SiriusXM radio, followed by a check presentation ceremony with our friends at Dollar General prior to the start of the Nationwide Series race.  Rick Dreiling, CEO of Dollar General, Reed Sorenson, driver of the Dollar General No. 32 Chevy and his crew chief Trent Owens, who is a parent and autism advocate, presented Autism Speaks with a check for an amazing $1,193,256.  In an effort to raise funds for the autism community, in April, Dollar General partnered with Autism Speaks for a month long fundraising campaign and Reed’s No. 32 Chevy was adorned with theAutism Speaks puzzle piece logo, helping to spread autism awareness from racetrack-to-racetrack throughout Autism Awareness Month.  Late Saturday afternoon, Jacob Boenizi, a special guest of FedEx and Autism Speaks arrived in Dover.  After his mom posted o nAutism Speaks’ Facebook page that Jacob, an 11 year old on the spectrum from Mesa, AZ, was a huge NASCAR and Denny Hamlin fan, he was invited by FedEx to serve as the Grand Marshal for Sunday’s Sprint Series race.

Sunday…Sunday…Sunday. Sprint Cup Series race day!  All of the families who were guests of Autism Speaks received a special treat courtesy of FedEx.  They met with driver Denny Hamlin in the FedEx suite prior to the start of the race. Denny took time out of his busy schedule to sign autographs and take pictures with all of the kids, including his biggest fan, Jacob.  In addition to hanging out with Denny, Jacob went on a tour of pit row and met NFL legend Joe Gibbs.  Shortly thereafter, Denny joined Mark Roithmayr for a live pre-race interview on the SPEED channel to talk about NASCAR’s commitment to autism awareness.  While walking back from the interview, it was wonderful to see almost every car lined up in pit row featuring an Autism Speaks puzzle piece logo  –  a heartfelt show of support from the NASCAR community.

Time for the start of the big race.  Jacob joined Mark onstage for driver the introductions, where they met NASCAR hall of famer Bobby Allison, and greeted the likes of Jimmie Johnson, Jeff Gordon and Dale Earnhardt Jr.  Denny Hamlin also presented Autism Speaks with a check for $50,000 from FedEx to goes towards vital research and advocacy initiatives.  As grand marshal, Jacob was given the special honor of announcing “gentleman start your engines” prior to the start of the race.  Standing before thousands of fans and on live national television, the young fan from Mesa nailed it, spurring a huge ovation from crowd.  It was truly an inspiring moment for everyone in attendance to hear Jacob says those words with such determination and confidence. He was the perfect ambassador for the autism community. Be sure to see for yourself:

Although Denny Hamlin didn’t win (Matt Kenseth finished first), the Sprint Cup Series race was a huge success thanks to FedEx, Dover International Speedway and all of our friends at NASCAR who worked hard throughout the weekend to bring attention to the needs of families and individuals affected by autism.  Thanks to everyone’s efforts, a message of understanding and hope prevailed in Doverand was broadcasted by FOX on televisions across the country.  In addition, a young NASCAR fan on the spectrum was given the experience of a lifetime.  You couldn’t ask for a better finish when the checkered flag finally waved, signaling the end of a memorable weekend.

We snapped plenty of pictures from the FedEx 400 Benefiting Autism Speaks. To view them, visit the Autism Speaks Facebook page.

Early maternal prenatal vitamin intake associated with reduced risk for autism

May 26, 2011 23 comments

This post is by Guest Blogger Rebecca Schmidt, Ph.D., Assistant Professor, Department of Public Health Sciences, UC Davis and first author on the research described below.

UC Davis researchers conducted a study comparing children with autism to children without autism, all aged 24-60 months, to see whether their mothers differed in terms of taking prenatal vitamin supplements before and during pregnancy. Combined effects of maternal vitamin intake and genotypes affecting a key metabolic pathway known as one-carbon metabolism were also examined.

In this retrospective study, mothers of  children with autism were significantly less likely than those of typically developing children to report having taken prenatal vitamins during the three months before and the first month of pregnancy. Prenatal supplement use was similar across the other months of pregnancy. Maternal education and the child’s birth year were accounted for; however, because the mothers were asked about their vitamin use years after their pregnancy, and after their child’s developmental status was known, recall bias could have influenced the results.

The researchers postulate that folic acid, the synthetic form of folate or vitamin B9, and the other B vitamins in prenatal supplements, are probably protecting against deficits in early fetal brain development. Folate is known to be critical for proper neurodevelopment and studies have found that supplemental folic acid has the potential to prevent up to 70 percent of neural tube defects.

Interaction effects were also observed between periconceptional prenatal vitamin intake and maternal and child genotypes. When a mother did not report taking prenatal vitamins and she or her child had genotypes associated with less efficient folate-dependent one-carbon metabolism, the child was at much greater risk for autism. These findings demonstrate gene/environment interactions in autism.

Maternal genes involved in significant interaction effects included the well-studied methylenetetrahydrofolate reductase (MTHFR) folate metabolism gene and vitamin B6-dependent cystathionine-beta-synthase (CBS), which is an enzyme involved in metabolizing protein building-blocks that contain sulfur. The child’s catechol-O-methyltransferase (COMT) gene was associated with more than seven times the risk for autism when in combination with no maternal periconceptional prenatal vitamin intake, compared to children with other genotypes whose mothers did report periconceptional prenatal vitamin intake. The COMT enzyme, responsible for the degradation of the neurotransmitter dopamine and well-known for its association with schizophrenia, is active during early neurodevelopment. Structural and functional brain differences have been described across COMT genotypes, particularly in the hippocampus and prefrontal cortex, regions previously shown to be affected in individuals with autism.

These findings are the first to suggest a concrete step women can take that may reduce the risk of having a child with autism. Future research is warranted to replicate these findings and enhance understanding of potential mechanisms.


Gene expression in the brain reveals surprising similarities and differences

May 26, 2011 9 comments

Autism is a very heterogeneous disorder. As the grand lady of neurology, Dr. Isabelle Rapin liked to emphasize when training new students “If you have seen one child with autism, you have seen one child with autism.” This heterogeneity has made understanding causes and designing effective treatments more challenging than it would be otherwise.

However, a new study published this week in Nature and supported by Autism Speaks’ Autism Tissue Program and Autism Genome Project reveals that the heterogeneity may not be as problematic as it initially seems. Differences in common molecular pathways appear to underlie the pathology in the brains of individuals with ASD.

Daniel Geschwind, M.D., Ph.D. (UCLA) launched an ambitious study to examine not just the variants of genes that may confer risk for autism, but the interaction with those genes and proteins working to support brain function. Looking for patterns of interaction in the brain, Dr. Geschwind and his colleagues sought to characterize the transcriptome – the set of fragments of instructions, called RNA, read from the gene DNA on the path to making functional proteins.  Importantly, unlike the gene DNA that is relatively fixed for an individual’s life, the RNA transcriptome is modified through experience and interaction with the environment.

The authors analyzed patterns of expression of RNA for three areas of the post-mortem brain tissue from individuals with ASD or typically-developing individuals. Two areas of the late-developing cerebral cortex (prefrontal cortex and the superior temporal gyrus) and a region of the cerbellum known as the vermis were compared between the autism and typically developed brain tissue. The first big surprise was that although the cortex transcriptome revealed over 400 different genes with different expression between the autism and typical brain tissue samples, the similar comparison in the cerebellar transcriptome revealed exactly two differently expressed genes. Whatever differences exist in the brains of individuals with autism, these differences are greatest in the instructions that guide the structure and function of the cerebral cortex.

This, however, was just the beginning of what the research team found. Imagine the cerebral cortex of brain is like a bustling metropolis – one part of the city develops into a residential area and the other becomes a business district. Both neighborhoods have very distinctive features that make them unique due in part to the time and manner in which they developed and the people who inhabit them. So too for different regions of the typically-developing cerebral cortex.  Different regions of the cortex develop at different times and with different inputs from the environment. The prefrontal cortex is one of the late-developing regions in the infant brain. Different regions also serve different functions, like integrating information from sight, sound and touch in the case of the superior temporal gyrus, and higher cognitive functions in the prefrontal cortex.

Importantly for Dr. Geschwind and his colleagues, these two cortical regions also have their own unique pattern of expression in brains from typically developed individuals. However, when looking for these unique signatures, the research team instead found surprisingly similar patterns of gene expression across the two regions in the brains of people with autism. Referring back to the metropolis analogy, in the autism brain samples, the residential and business districts are more alike than they ought to be.

There were also differences in expression of two gene networks between the autism and control brain samples. The first network of genes encodes synaptic function. This is reassuring because most of the autism risk genes identified through previous studies focused on synaptic function. The second network of differential gene expression was related to immune function and inflammation. This too harkens back to previous studies showing inflammation and immune system activation in the brains of individuals with autism. This gene network does not correlate with the results of large gene association studies like the synaptic network, indicating that secondary or environmental effects are involved in stimulating the observed inflammatory markers.

“This is the first study to show differences in the patterns of gene expression between brain regions, said Rob Ring, Ph.D., Autism Speaks vice president for translational research. “It’s those patterns of gene expression that enable the brain to function normally and to communicate properly with other regions of the brain.”

Taken together, these results have quite an impact on how we understand autism. The similarity of gene expression across different regions of cerebral cortex in the brains of individuals with autism tells us that we should look closely at very early brain development as these patterns in cerebral cortex emerge. The same goes for the network of synaptic genes that are differentially regulated in individuals with autism. However, the differences observed in immune and inflammation gene networks are more likely to be related to secondary or environmental effects.  We must follow all the leads this research has provided if we are to make the next steps in developing supportive treatments and therapies for those living with autism spectrum disorders today.

An Inside Look from ‘Perfect Pals’ Faculty Sponsor

May 26, 2011 4 comments

This is a blog post by Liz Reinemo, faculty sponsor of Perfect Pals, Nantucket High School’s mentoring club for students with disabilities. Liz works with Kim Horyn, Director of the Nantucket Autism Speaks Resource Center.

I am both honored and humbled to be the faculty sponsor of Perfect Pals, a group committed to ensuring that all kids have a friend and have some fun!  I became the faculty sponsor by chance, after a conversation with Kim Horyn, the director of Nantucket Autism Speaks Resource Center, who was wondering if I knew of any students who would like to volunteer their time to work with students with disabilities.  I immediately jumped at the opportunity to form a group, because I knew several of my students would reap the rewards of befriending students with disabilities.  Hence, Perfect Pals was born.

I was both nervous and excited by the thought of Perfect Pals.  I dreamed of what could be, and I explored all of the potential roadblocks.  It was important to me that the students involved were not let down.  At our first meeting we had thirty interested high school kids, eager to check out what the club was all about.  I was so pleased that these students, who already had a full plate, juggling rigorous academics, athletics, theater and extra-curricular activities, found the time and showed a sincere interest.  Word spread and at our first event, a Halloween Mixer, we had over thirty students come to help.  Watching my students outside of the classroom, and for some their comfort zone, has been a rewarding experience.  They are not looking to stand out as they can in the classroom, or are cocky like they can be on the athletic field, they are just themselves, kind, effervescent kids with big hearts who are humbled by the experience to help.  These students go above and beyond working in Perfect Pals.  I am lucky to be able to watch these kids reach out and sit with their pals at lunch, invite them to homecoming activities, read a book with them in the library and volunteer their time to babysit some of the younger pals.  Countless stories have emerged from the school community about what a difference our club makes and it is because of the dedication these students feel to their pals that keeps the club thriving.

It doesn’t get much better than watching a child’s face light up at finding a friend to talk Star Wars with or make a Valentine’s Day card for their favorite teacher or ride in the homecoming float.  It is especially rewarding when these students have disabilities, and for some this is their first taste at hanging out and being one of the gang.  Watching the pals play ping pong with their mentors or win a game of Uno is sheer awesomeness.  At a recent movie morning the pals got to dictate the events, everything from Jenga to coloring to table hockey.  The diversity in the room is heartwarming.  Every child is the same and is treated the same, and feels safe, loved, and accepted.  This is the second year of Perfect Pals and the growth in the students with disabilities has been remarkable.  At first many of our pals did not want their parents to leave.  Now, they are excited when they see their friends and feel comfortable telling mom or dad that they will see them later.  Being a part of their growth process is wonderful.

I am truly grateful to the parents of these children.  I have been stopped in the supermarket or at a game and listened to different versions of the same story.  The moral is basic and straightforward: Perfect Pals has made a difference in my child’s life.  My son/daughter can come to these events and be him/herself.  Nobody is there to judge them, and they can interact with a diverse group of kids, everyone from the prom queen to the hockey star, or head of the class.  There are no barriers.  My child feels accepted and has a blast!  That sums up the mission statement of Perfect Pals.  By providing activities and forming meaningful friendships within the club, parents are given much needed respite.  They do not need to continually entertain their child.  The students are interacting within their peer groups and learning life’s lessons.

I am a better teacher and friend from my work with Perfect Pals.  I watch my students step away from their friends and make new friends stepping out of their comfort zones, learning strategies of how to engage some of our students with special needs. I see the value of this club reflected in the delightful smiles of our pals who have discovered that they belong.  I witness the relief of parents who know that this club and its work is benefitting ALL children.  At the end of the day, it feels good to be part of something so great.

Click here to search our Resource Guide for recreation and community activities in your area!

Family Services Inaugural LIVE Facebook Chat

May 26, 2011 4 comments

In case you missed it, the Autism Speaks Family Services Team hosted their first LIVE Facebook Chat on May 25. The chat was an overwhelming success, with 426 participants!

If you have any questions,  you can call, 888-288-4762 and the Autism Response Team Coordinator will be glad to speak with you and help find answers.

You may have some similar questions asked in the discussion, so here is the transcript. 


3:27
Hi Everyone!
3:27
Thank you so much for joining this chat! We are so excited to share our resources with you all. Our goal is to point you all in the right direction and help you in every way that we can!
3:29
Comment From Guest

is there a test for asphergers syndrome?

3:31
Unfortunately there is no medical test to determine Autism Spectrum Disorders, the diagnosis is made through structured observations of the person.
3:33
Comment From Lilly

My son has moderate autism and is 16 years old. where and when do I look for services for him when he is an adult? What services does he get or can he get?

3:35
Family Services has just released the Transition Tool Kit, this kit will be a tremendous help to you and your family in finding resources go to www.autismspeaks.org/familyserviices.
3:35
Comment From Guest

When I read “early intervention”, how old is ‘early’?

3:36
Thanks for your question!
3:36
Early intervention typically starts at the age of 2, although the earlier, the better.
3:36
Some children are being diagnosed at age 1 today because of better detection and awareness.
3:37
Comment From Angie

I sent a question, did it get received?

3:37
Hi Angie!
3:37
Comment From Melanie

I was wondering if you have any book recommendations for family members who dont know anything about Autism and educating them?

3:37
We are trying to answer as many questions as possible!
3:38
Our Resource Library is available online and we have a variety of autism related information and the latest books
3:38
Comment From Chall

How do I learn about support groups in my area? I currently live in Mt Pleasant. Also, is it possible to have a diagnosis of PDD NOS at age 4-5 and then suddenly fit ito a category like Aspergers?

3:38
Hi Chall!
3:39
If you visit our Resource Library, you can search by state to find services in your area
3:40
Also, it is true that children can change over time, so it is important to have your child reevaluated to track progress and changes in development
3:42
Comment From Marie

Is there resources or supports for siblings? I have an 11 year old son with Aspergers and Tourettes and our younger son who is 9 is dealing with some issues dealing with his brother…

3:42
Hi Marie – that is a great question
3:43
We covered this topic in a ‘Community Connections’http://www.autismspeaks.org/community/family_services/siblings.php
3:43
Comment From Annie Ellis

I asked a question and got no response. I’m wondering if you have any suggestions for getting my 3yr old autistic son, Jamey to eat or even try new foods?

3:43
Hi Annie Ellis
3:43
Selectivity in food choices if very common in individuals with autism
3:44
This should be included in your child’s IEP as a goal and addressed through a team effort because of the challenges of this type of behavior
3:44
There are several programs out there to help Jamey try new foods, it is a matter of individualizing it for your son
3:45
Comment From Dawn

My daughter has found a program for the summer for my grandson, but it is so expensive and not covered by her medical insurance. Is there help out there?

3:45
Hi Dawn
3:46
Summer Programs can be very expensive and one of the things we encourage families to do, is to ask for scholarships or sliding-scale fees for those who cannot afford to pay full tuition
3:47
Also, there are community groups who do make donations to cover the individuals tuition
3:48
Autism Votes is working to ensure that these types of programs can be covered under medical insurance.http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
3:48
Comment From DENICE

HOW DO YOU BECOME AN ADVOCATE IN A AREA SUCH AS TEXAS THE VERY TIP OF TEXAS ? MCALLEN TEXAS…

3:49
Hi Denice
3:50
Walk Now for Autism Speaks has a strong presence in Texas and we would encourage you to become a part!http://www.walknowforautismspeaks.org/site/c.igIRL6PIJrH/b.4356939/k.BF85/Home.htm
3:50
If you need more help, check out Texas Resource Guide here:http://www.autismspeaks.org/community/fsdb/state.php?sid=51
3:51
You all have such great questions! We are working to answer all of them!
3:51
Comment From Guest

what sort of trainings might parents of children with (mild) autism want to participate or get trained in? (ABA, etc.)

3:52
It is well known that families that get involved with working with their children ahve a higher success rate in achieving their goals
3:52
It is important to find local trainings or workshops that can assist you with these details
3:53
Comment From chris

How do I tell my son about the changes his body is going through?

3:53
Hi Chris!
3:53
This can be a very difficult conversation
3:54
There is a ‘Sexuality’ section in the Transition Tool Kit that helps to explain the changes their body is going through
3:54
Comment From Sarah

My son is a 16 years with a diagnosis of asperger. He really wants to be like “other” kids, and would like to get a part time job…but making calls, etc. scares him. Any suggestions?

3:54
Hi Sarah! Thanks for your question
3:55
It is understandable that he would react like this. Practicing will help him learn and gain this skill.
3:56
He could take his resume and bring it to a store if he feels more comfortable face-to-face. Sometimes it is easy to interact in that way
3:56
Comment From allisa

I need to find qualified respite or care giver for an 11 year old with a dual diagnosis of down syndrome & autism. I am a single mom with 3 children….and I never ever have a break …..is there any options at her age ?

3:56
Hi Allisa
3:57
Typically parents will go through local agencies, like Easter Seals, that provide respite
3:57
Networking to find that respite worker is key – maybe other parents, your church group, local colleges, etc.
3:57
You are right – you need a break!
3:58
It is key to find someone that you and your child are comfortable with
3:58
Comment From Tasha

My daughter is 3 and just got diagnosed with Autism last week. When I tell people she is Autistic, NO ONE believes me. Not even family. Could the doctor and I have been wrong? Or is there a way to open peoples eyes and except it?

3:59
Tasha
3:59
Accepting an autism diagnosis is a process
4:00
Sometimes family members will react with denial, and this is normal and difficult. If your child has been diagnosed by a competent professional then you should feel like you have taken the right steps in getting your child the right help that they need
4:01
Comment From arrione

Are there any good programs in Louisiana for autistic children?

4:01
We offer a Resource Guide Directory of autism resources and agencies that can be of help to you.http://www.autismspeaks.org/community/fsdb/state.php?sid=22
4:03
Comment From Courtney

We just found out my son has Autism last Thursday. We were also told that the waiver for funding for his treatment will take about a year. What can we do in the mean time?

4:04
Hi Courtney – I can’t specifically answer your question because most funding and treatment depend on the state you live in
4:04
In the meantime you can visit this page, ‘Your Child’s Rights’http://www.autismspeaks.org/rights/index.php
4:05
You are doing the right thing about asking questions and asking why. The earlier you start, the better off you are
4:05
Here is also a link to our ’100 Day Kit’ that can help steer you through early diagnosishttp://www.autismspeaks.org/community/family_services/100_day_kit.php
4:05
Comment From Sue

We have struggled with pubic school to get what our 8 y/o son with Asperger’s needs. They think all Aspie kids are the same. We will be home schooling in Fall. Can anyone suggest curriculum’s that help keep a 3rd grader engaged?

4:06
Hi Sue
4:06
We have developed a Tool Kit that you may find very helpful that is geared to individuals with Asperger’s Syndrome
4:07
Comment From Trina

Are there any resources online to help an autistic teen prepare for a job interview?

4:07
Here is the ‘Asperger Syndrome and high Functioning Autism Tool Kit’http://www.autismspeaks.org/docs/family_services_docs/AS-HFA_Tool_Kit.pdf
4:08
Trina, I would recommend you visit our ‘Autism in the Workplace’ guide
http://www.autismspeaks.org/community/family_services/autism_in_the_workplace.php
4:08
‘Autism in the Workplace’ is a useful guide for helping individuals prepare for a job interview
4:09
This focuses on employment readiness
4:09
Comment From Traci

I am single mom with no income and I am having troubles finding the help I need for the guardianship paperwork for my son. He is turning 18 in July so I don’t have much time. Any suggestions?

4:09
Hi Traci
4:10
This changes depending what state you live in. There is a section in the ‘Transition Tool Kit’ called legal matters.
4:10
Guardianship differs from state to state so it is important that you discuss with a state agency
4:12
Hey Everyone!
4:12
We are so excited that you are all participating, but we just don’t have the time to answer everyone’s questions!
4:13
If your question goes unanswered you can call, 888-288-4762 and the Autism Response Team Coordinator will be glad to speak with you and help find answers to your questions
4:15
Comment From Suzanne

When my 3-year old was diagnosed a year ago with Autism, doctors and early intervention services were lined up to evaluate him. But nobody cares about getting my 8-year old a diagnosis. How do I get a comprehensive evaluation for an older child?

4:15
Hi Suzanne
4:16
We are so sorry to hear you are having difficulties. The process should be the same as a younger child, but we often recommend that you go through your pediatrician to get a referral. This is a good way to begin the process.
4:16
The school district and state agencies should also be involved.
4:17
This is a common complaint from families that have older children requiring an evaluation
4:17
Comment From amy

need information on how to make a child with aspergers behave at school

4:18
Hi Amy – here is our ‘Asperger Syndrome and High Functioning Autism Tool Kit.’http://www.autismspeaks.org/docs/family_services_docs/AS-HFA_Tool_Kit.pdf
4:19
This is an excellent resource and you should be able to find just what you are looking for!
4:19
Comment From arrione

Do autistic kids need to get their hearing checked?

4:19
Hi Arrione
4:20
Along with their vision, hearing should be included in their annual check-up with their pediatrician. This is true for all children.
4:21
Comment From Jess

My son, 5, has problems with aggression. He has pretty severe sensory processing disorder (official diagnosis PDD-NOS). He’s always hitting and kicking the people around him. I’m worried it will keep him from having friends as kids are already eyeing him warily. What are the best resources to help us deal with it? Time outs and other typical discipline do not work.

4:22
Aggressive behavior can be part of having an autism spectrum disorder. It is important to have a professional understand and evaluate the child’s behavior. This is done through observation of the behaviors and the environments they occur in.
4:23
You should ask your child’s teacher or members of the IEP team for a behavioral consultation
4:24
Part of the evaluation will be a plan that will help to address behaviors across all environments
4:26
Comment From Devin

My 3 year old daughter has been diagnosed with PDD-NOS. I was just wondering if there are any ways to help her cope while out in public. We can’t stay at home ALL the time, but she just cannot function in public. It’s heartbreaking and embarrassing at the same time.

4:26
Hi Devin
4:27
Our recommendation is to get some help with this and your IEP Team should be a resource
4:28
It is important to have your child out in public and exposed to different people and communities. It is also important to deal with behaviors once they do come up
4:28
Your child will have the opportunity to adapt and learn new behaviors when you respond consistently each time
4:29
It is important that you are addressing these behaviors at a young page – good for you!
4:29
Alright everyone, this chat is coming to a close
4:29
Thanks to you all for participating!
4:30
We are so sorry if we didn’t answer all of your questions. We are still here for you!
4:30
Please call the Autism Response Team 888-288-4762 and you can talk with coordinators who will be glad to answer your questions
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