Archive for September, 2011

Family Services Office Hours – 09.28.11

September 29, 2011 6 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

Welcome to Family Services Office Hours! We are here today to answer any questions you might have and help connect you to resources. Let us know how we can help!
Comment From Kelly

Hi, I have a 9 year old son that I believe has aspergers. His current official diagnosis is ADHD but he has so many other symptoms. Cincinnati Children’s assessed him several years ago and told us that he was bi-polar. I’d really like to know someplace that I can take him for a full eval. Can you help?

Hi Kelly! The Asperger Syndrome/High Functioning Autism Tool Kit will be helpful to you. It contains lots of helpful information and resources!
In addition, the Cincinnati Children’s Hospital is now an Autism Treatment Network site. Here is the contact information: Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
Contact: Terry Mitchell
Phone: (513) 636-1665
Comment From renaye

I am having a difficult time finding a speech therapist for my grandson who is nonverbal .. none of them take medicaid and there is a waiting list for the one that does.. what do I do.. He is 11 non verbal and we want him to use tap to talk or some assisted device

Hi Renaye! We have a very extensive resource guide on our website that contains lots of speech therapists. You may want to try contacting others in your area to see if they take Medicaid.
If you’re not having any luck through Medicaid, you should also ask the school district for your grandson to be evaluated for his speech and language needs which can be included in the IEP guide. Check it out here!
Comment From Kimberly Rossi

Hello I was looking to find out where I can get information to help a friend of mine a 26 year old male with autism information about dating. He has a belief that “normal” girls won’t date him because he has autism. He says that he wants to date “normal” girls not those with autism. I’m not sure how to help him he refuses to go to any local mixers that happen in the area. Any suggestions?

Hi Kimberly! We also have a Resource Library with lots of general resources. We have 2 different pages you may want to check out, our Asperger Syndrome page, as well as our Adults and Young Adults page. There are tons of helpful resources there.
Comment From renaye

we live in indiana,,, northwest part of the state

Hi Renaye, I still thiink you will want to call Cincinnati Children’s Hospital Medical Center (Cincinnati, OH), and ask if they know of an expert in your local comunity.
For everyone else out there, we have lots of different resources in our Resource Library that cover a wide range of topics, like toys and games, autism apps, magazines, books and much much more!
Comment From Guest

I looking for feeding therapy in Illinois south of Springfield.

Hi Guest! Thanks for joining us. I suggest you search our Resource Guide. We have a category for Diet/Nutrition in there. If that doesn’t help you, I would contact your pediatrician, he or she may have some recommendations for you.
Be sure to consult with your pediatrician, this is a medical issue that requires a team approach.
Comment From Jack Dawson

Hi There! I was wondering when the Family Support Tool Kits are being released? Your Tool Kits have SAVED my family!

Jack we’re SO happy to hear our Tool Kits have been helpful to you! That’s what we’re here for!
Hi Jack- Family Services relased A Granparent’s Guide to Autism last week. We will release Parents, Sibllings and Freinds in the next few weeks.The Tool Kits are specially designed to help with the emotional and support reactions to having a child diagnosised with autism.
All of the Family Services Too kits can be found at; 
Comment From meta kane

I need a school for my son who has autism. My son has a photographic memory.

Hi Meta: You can look in our Resource guide for Private Schools. If you are interested in public school, that is something you will have to work with your IEP team in making an determination of public schools that are available. 
Comment From Dana

I’m wondering if there is a Dallas-area toolkit for the Dental community? Or if there is a group specializing in the ASD population? My stepdaughter has Asperger’s Syndrome.

Hi Dana! We have a great Dental Tool Kit on our website. It has information and helpful tips for families AND dentists. It also has helpful videos. You can see our Dental guide here:
We also have dentists in our Resource Guide that specialize in treating individuals with special needs including autism. Click on your state, then the category Dentists and you can search by your zip code. I hope you find a great one!
Comment From Mari

I live in California and my son is a Jr. in high school. He has not been able to pass the Ca exit exam. What happens next? We would love for him graduate with a diploma and not a certficate.

Hi Mari- I am going to recommend you request a Transition Tool Kit – a special kit for families whose child are transitioning into adulthood. 
As far as your son not passing the exit exam, I would recommend you call an IEP meeting in order to specifically address this issue. Our IEP guideline will be a great resource to check out. 
Comment From Jennifer

My 4 year old was diagnosed with Autism and is in a special needs pre-k. I”m trying to find help with the state laws that are associated with Special Needs Classes. Regarding class sizes, full days/ half days…ect…

Hi Jennifer! We have lots of information about eduation laws in our IEP Guide. You can read our IEP Guide that was written by a professional team of lawyers on our Your Child’s Rights page: You can also search our Resource Guide for other preschools in your area.
Comment From Dana

Your IEP guide is invaluable! We did our first IEP last week, and knew how to advocate for our daughter with Aspergers. Thanks to your site, we were able to include both speech therapy *and* counseling in her IEP, as well as ensuring her caregivers had Autism certifications.

Thanks Dana! I’m so happy that was helpful to you and your family. We have gotten some great feedback!
Comment From Mari

Do you anything about a waiver in Ca?

HI Mari, you can check with your Regional Center. They should be helpful about how to obtain a MediCal waiver. Its great that you are investigating a waiver while your son is making his transition to Adulthood.
Comment From Catherine Ritter

My family needs a good counselor for helping us cope with our eleven year olds AS/OCD. It has been extremely difficult dealing with the anxiety meltdowns that turn violent and destructive. He has a good pshychologist already. Our eight and four year are having a hard time with their brothers behaviors. It is really bad and we are looking into temporary placement outside of our home for him. It is hard to find doctors who can counsel in relations to the spectrum. Any suggestions?

Hi Catherine. I suggest you look to you discuss this with your pediatrician to see if he/she can make a referral to a counselor. You can also search our Resource Guide for psychologists/other professionals in your area who may be able to It is important to make sure this counselor has experience with autism. But those are 2 great places to start!
Keep an eye out for a Sibling Tool Kit we are working on that will come out in October. We also have books for Siblings in our Resource Library which you can see here:
For those of you making comments about issues at school or education-related problems, definitely check out our IEP guide here
Parent involvement is very important in the IEP process and your child’s education. Make sure you advocate for your child’s rights even though the process may be difficult!
Comment From Thereasa

My 6yo daughter was recently diagnosed with Aspergers. Do you have information that is easy to explain to my family so they understand what that means? They tend to be rather anti psychobabble and will not accept this diagnosis.

Hi Thereasa! First off, I suggest you order our Asperger Syndrome/High-Functionig Autism Tool Kit, which we send out for free to families of recently diagnosed children.
We have family tool kits coming out, but it is normal for different family members to respond differently to the diagnosis. It can take some people longer than others to accept it. I suggest you point families to our website information. We’ve suggested that better understanding can lead to more support for you and your family.
Comment From Catherine Ritter

Our pediatrician does not know of one. I already spoke with him last week. ?? I feel so overwhelmed and stressed, because my family is struggling.

Catherine, I am so sorry to hear you are struggling. Feel free to call our Autism Response Team at 888-AUTISM2 or email us at so we can help you.
It may help you to connect with other parents either through support groups or your child’s school. We don’t want you to feel alone. Sharing your feelings with others going through similar times can be extremely helpful.
Comment From Mari

Thank you soo much for all the help! Have a Wonderful Day!

Thanks Mari, we are so happy to help! Hope to see you back next week!
Comment From Willmom

We have noticed that our 4 year old ASD son is becoming much more stubborn. He is melting down with every no any suggestions?

Hello Willmom – I am glad you are asking tis question. Its important to understand and have a plan of action when children are having new behaviors.
You will want to work with a professional, preferably a behavior analyst who is an expert on understating behavior
Our resource guide has a catogory called ABA, take a look!
Comment From michelle

when our son was that age willmom, we found previewing situations that would have no answers helped. such as we are going to the grocery and there will be things that I am going to say no to. you can get 1 thing, if you do not melt down. (of course all of this is in 4 yr old language) it helped some. didn’t get rid of all them..still had some store meltdowns

Thank you Michelle! It is so nice to see moms and other parents talking to each other and sharing stories. That is one of the best ways to get support, by sharing information with others who may be going through similar experiences. As many of you know, there are constant chats happening on our Facebook page and lots of parents have been able to connect and help each other!
Comment From Willmom

Also, our 4 year old son (ASD) is having a very hard time with potty training. Any suggestions?

Comment From Willmom

Thanks for suggestions

Comment From Willmom

Michelle, Thanks for reaching out!

Hi Willmom. There are 2 books that have been submitted to our Resource Library that have been helpful to families who are having difficulty with potty training. Here are the 2 links:
Comment From Jeni

Willmom – the Book Love and Logic help my family tremendously in dealing with my son’s tantrums when he was your son’s age. We also had a 1:1 ABA therapist that would go to the store with us and help guide me through the situation.

The Autism Treatment Network is working on a toilet training tool kit that they hope to have out soon. So keep checking back to our Family Services page for its release date!
Comment From Ashley

I was just wondering if there has been any link in genetic disorders and autism? I’m asking because I have two boys who have mutated “X” chromosomes, and as a result they have “symptoms of autism” they cannot say for sure that’s what it is, but that’s what everyone thinks it is. It was passed on to them through me (I have the exact same genetic make-up) and I am afraid my daughter will have to too (already had her tested, just waiting for the test results). Thanks for your time!

Hi Ashley! That is a great question, but I’m sure you would get a better answer from our Science team. You may want to check out Alycia Halladay’s live chat on siblings and genetics here:
Our science team would be happy to answer your questions They are very helpful!
or you can try for more specific research-related questions.
Comment From Gayle

My grandson lives in NC and has been diagnosed as being on the autism spectrum, adhd and I’m not sure of anything else. He takes medications that are costly and also sees a psychologist for dealing with anger issues. He is 7 years old and does well in school and most of his meltdowns are at home. His parents are separated and my daughter is the sole source of financial support. Are you aware of any no- or low-cost services in NC to assist with his medical costs? My daughter has health insurance but the psychologist specializing in children with autism is out of network and the insurance pays very little. My daughter has to pay more than $135/week for the therapy session and his meds are not in the range of what she can afford. Thank you for any assistance you can provide.

Hi Gayle: You are correct to investigate financial recourses for families. Is your grandson receiving a Home and Community Based waiver? If not, this is the first step you want to take.
There are so many stressors that family’s face, and financial issues are one of the primary ones that we see in families of children with special needs. There are potential sources of aid…. many of them depend on the state in which you’re living. Many of the services in some of the states are provided for through state agencies.
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance. Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
Comment From Guest

hi, i have an 8 year old boy, who has asd and adhd. We have just had our 6 year old duaghter accepted to be screened for autism. shes very intellegent and we feel shows signs of adhd and ocd too. she saves up all her anger, and behaviours for us at home, and we are told, does as she is asked in school! soo frustrating! ive read alot about high functioning girls disgusing their behaviours etc in school, then letting all come out at home.

Hi guest! This is a very common problem reported by parents. We recommend that there by close communication between you and the teacher so you can learn about what the school is doing to get the success they have. Communication is everything when trying to raise a child who may have autism. Remember, this won’t be easy because the school environment is so structured, but it does help to have this information so you can learn from their success.
These issues should also be brought up in the IEP team meeting. The teachers/school professionals should have lots of information for you. It is great when teachers and parents are on the same page.
Thank you everyone for joining us today!! We weren’t able to answer everyone’s questions but I hope all of the participants learned a lot from the questions that we did answer. As always, feel free to call our ART team with questions at 888-AUTISM2. See you next week!!

Autism America Radio Presented by Verengo Solar September 24

September 29, 2011 Leave a comment

Special Guests, actor and autism advocate Gary Cole and Neli Latson’s mother, Lisa Alexander! Join hosts Matthew Asner and Nick Geber for two hours of talk and interviews this Saturday 3-5 PM PST on KTLK 1150 in Los Angeles. Want to participate?

Call in studio 877-520-1150! Listen online and as podcast on iTunes! You can also visit Autism America Radio Presented by Verengo Solar on Facebook!

2011 Chicago Ride for Autism Speaks

September 29, 2011 2 comments

On Sunday, September 18, the 9th annual Chicago Ride for Autism Speaks was held. Despite the rain, more than 300 bikes rode with 550 people participating—together raising $50,000…and counting!

Starting at the Villa Park Harley-Davidson, the morning kicked off with music from our media partner, the Loop 97.9FM and their Loop Rock Girl, Tricia, who has a nephew on the spectrum. The 88-mile ride ended at drink, a Schaumburg nightclub where participants dined on burgers, brats and pizza while listening to live music from the band, Mistaken Identity. More than 100 prizes were offered in this year’s merchandise raffle, featuring expensive motorcycle gear, courtesy of Wild Fire Harley-Davidson and sports memorabilia.  All riders received an entry for the Riders Only raffle to win an Apple iPad, courtesy of sponsor, CDW.

The event is made possible by event sponsors, CDW, Shefsky and Froelich, drink and Ala Carte Entertainment, JA Rentals Corp., United Camera & Binocular, Stratford Dental, The Law Tigers, U.S. Equities Realty, the Loop 97.9FM Chicago’s Classic Rock and Wild Fire Harley-Davidson.  And, once again, the Rescue Riders were on duty to ensure a safe and fun ride.  Very special thanks to the police departments that helped to ensure a smooth and safe route, including: Lombard, Villa Park, DuPage County, West Chicago, Carol Stream, Batavia, Kane County, Maple Park, Pinegree Grove, Elgin, West Dundee, East Dundee, Carpentersville, Barrington Hills, Palatine, Hoffman Estates, Addison, Glendale Heights, Geneva, and the Illinois State Troopers. We proudly recognize their commitment to support our riders along the course.

We’d also like to thank our outstanding committee, chaired by, Diane Gedik and her partner, Leo Tavolacci. Diane founded the Ride in 2003 in honor of her son, Joshua.

Autism in the News – 09.29.11

September 29, 2011 Leave a comment

Congress extends autism research programs (Bloomberg Business Week)
Congress is sending President Barack Obama a bill to keep the government’s autism research program going. Though the legislation had broad support, it almost didn’t make it out of the Senate. Read more.

Paul Scholes reveals son’s autism battle (UK)
Former England and Manchester United player Paul Scholes has revealed that his youngest son is autistic. In an serialisation of his autobiography Scholes: My Story, the retired midfielder speaks about his experience of having a son who suffers from the developmental disorder. Read more.

Musical Savant, Derek Paravacini, Stuns Audiences (ABC News)
When Derek Paravacini, 32, played his concerto in London’s Queen Elizabeth Hall Wednesday night, he knew the piece by heart — and all the parts for each instrument in the orchestra, about 45 in all. Read more.

Autistic local artist aims to show work at NYC exhibit (New York, N.Y.)
A local artist is trying to get to New York City to show his work, but he needs some help. Anthony Rivera, 40, has autism and is a talented artist who would like to participate in “ARS SPECTRA: The Autistic/Artistic Mind” later this year at the Soho Digital Art Gallery in New York City. The event, featuring numerous artists with autism, will begin Oct. 27 and last for three weeks. Read more.

Gap to Host Fundraiser This Weekend (Bridge Water Patch)
Gap stores in the area are coming together this weekend for “Help Close the Gap on Autism” in an effort to collect donations to help the worthy cause, according to a release from the store. Read more.

Categories: Autism in the News Tags: ,

CARA: It Took a Community

September 28, 2011 5 comments

This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.

I couldn’t be happier to share once again the news that we all had been waiting for…the Combating Autism Reauthorization Act is on its way to President Obama. Late Monday night, the U.S. Senate passed HR2005, the same bill that passed the House of Representatives last week.

For those who followed the chain of events during the past week, the band of four Senators who had placed a “hold” on the bill agreed to allow CARA to pass the Senate under the Unanimous Consent procedure. Their only condition was a request to the U.S. Government Accountability Office (GAO) to undertake an investigation on the federal funding of autism research, a request Autism Speaks has long supported to ensure our scarce federal research funds are spent wisely.

So now we have a law…well technically it becomes a law once President Obama signs it later this week!  $693 million in authorizations for autism research for the next three years.

Our success in the Senate this week and the House of Representatives last week was the result of a rare show of bipartisan leadership in today’s Congress. In the Senate, we thank our two original sponsors, Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY), along with the chairman of the Health, Education, Labor and Pensions Committee chairman, Sen. Tom Harkin (D-IA). Senate Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY) also earn our thanks by enabling our bill to move through a crowded agenda and on to the Senate floor for a final vote. In the House of Representatives, a team effort between Reps. Chris Smith (R-NJ), the prime sponsor of HR.2005, and Mike Doyle (D-PA) was assisted by House Majority Leader Eric Cantor (R-VA) who expedited consideration of the bill.

But this team effort extended well beyond the Beltway. The tens of thousands of Autism Speaks grassroots supporters and advocates across the United States who we called upon time and time again to make their voices heard played a central role in this success. A special thanks goes out to the entire Autism Speaks Field team for its incredible responsiveness and for rallying the troops from Maine to Florida, Texas to Minnesota and from Washington to the Tijuana border. Our grassroots efforts have never been better! And our thanks must also go to our partner organizations in this effort, the Autism Society of America, the Association of University Centers on Disabilities, the Consortium for Citizens with Disabilities, Easter Seals, the American Academy of Pediatrics, and the National Association of Councils on Developmental Disabilities.

The final enactment of CARA will be of enormous benefit to the autism research community that is making advancements on an almost daily basis. Because of CARA,  the research enterprise will be able to continue to grow, without interruption, to find the answers our community so desperately needs and deserves.

On behalf of the 3 million Americans who wake up every day with the challenges of autism, the professionals who work daily to care for them, the scientists who are dedicating their careers to finding the answers and all of those who are committing their lives to improve the futures for those living with autism, thank you!  Today is a better day because of what WE ACCOMPLISHED TOGETHER.

A Parent’s Worry Explored in NBC’s ‘Parenthood’

September 28, 2011 24 comments

Here is the ‘Experts Speak‘ commentary of NBC‘s ‘Parenthood‘ episode ‘Step Right Up.’

The Bravermans are having a baby! How exciting! From the look on Adam’s face in the final episode last spring, it was a real shock to both Adam and Kristina at first. Now they, as well as the whole Braverman family, are delirious with joy that Kristina will be having a baby – and soon! But underneath, there is tension and, like many families in similar situations, real fear as well.

Kristina and Adam know the statistics for having a second child with an autism spectrum disorder. The latest research study (Ozonoff, Young, et al., 2011) released just this August in the journal Pediatrics reveals that the chance of having a second child with an autism spectrum disorder is 19% (previous rates were stated between 3% – 10%). Since four out of five individuals with autism will be boys, is it any wonder that Adam and Kristina are hoping for a girl?

Learning that they are having a baby girl lessens the tension but probably will not totally eliminate it. The research in heritability of autism in families is difficult to ignore, and Kristina and Adam face what other families face when they already have a child with autism spectrum disorder. Some families that have a diagnosed child with ASD will choose not to have a second child at all – in research, that’s called the “stop factor.” To put it plainly, they stop having children.

And that is sad. Because each child – whether they have autism or not, and whether they are the first, second, third or more child with an ASD – should be a joy to behold. For families that have a child with autism, the family gets an extra package – a child that has a very unique way of looking at and reacting to the world. Individuals with ASD offer so much to our world – to parents and professionals alike. Too often, the world only sees the “downside” to autism: the lack of verbal language, the inappropriate behaviors, the social isolation. Professionals (like myself) hold days-long workshops on ASD, outlining the characteristics, teaching strategies and methods to reshape inappropriate behaviors, and how to ameliorate the symptoms of autism. But shouldn’t we be holding days-long workshops on what those with autism bring to our society? The joy of seeing progress, the huge rote memory, the insatiable curiosity, and the pure innocence that catches us unaware and makes us all humble?

Yes, it is a present fear that a family will have a second or third or fourth child with autism (and there are some families in this nation that have more than four children with ASD), and pediatricians and family physicians should be referring the family for genetic testing and counseling, so that the parents can make informed decisions for themselves and for their family. Although there is no definitive genetic marker for autism at this time, current studies are getting closer to capturing its elusive causes. Someday, there will be answers. Families who have a child with ASD (regardless of how many) should be referred for genetic testing, since other, underlying conditions can be identified (which may explain behavior and medical difficulties mimicking autistic behaviors) such as Fragile X, metabolic disorders, Rett’s Disorder, etc. In fact, genetic testing is a procedure that families may want to repeat every 10 years or so, since breakthroughs can happen (and are happening) at any time and in any number of disabilities and conditions.

Should Adam and Kristina be fearful? Not really; the baby is coming regardless of whether she has autism or not. A bit worried? Yes, probably, and totally understandably. But this is a strong family, and the love of their children is deep; they will love this little girl whether she has an autism spectrum disorder or not.

And she couldn’t be born into a better family.

Written by Sheila Wagner, M.Ed.


The High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible.  The study revealed a markedly higher risk among younger siblings than had been previously reported.

You can find more information about these findings here:

New findings on risk of autism in siblings – What do they mean for parents?

Increased Risk of Autism in Siblings LIVE Chat Transcript 

Increased Risk of Autism in Siblings News Coverage 

‘Medical Home’ Important for Autism Treatment and Family Support

September 28, 2011 7 comments

Having one comprehensive “medical home” is crucial for families of children with special medical needs. That’s the conclusion of a new report in the journal Pediatrics. It’s also the philosophy at the heart of Autism Speaks Autism Treatment Network, says ATN medical director Dan Coury, MD. Read more on our science news page

Categories: Uncategorized

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