Subscribe: Autism Bulletin
Added By: Feedage Forager Feedage Grade B rated
Language: English
autism spectrum  autism  child  children  health  information  parents  people autism  people  services  spectrum disorders  spectrum 
Rate this Feed
Rate this feedRate this feedRate this feedRate this feedRate this feed
Rate this feed 1 starRate this feed 2 starRate this feed 3 starRate this feed 4 starRate this feed 5 star

Comments (0)

Feed Details and Statistics Feed Statistics
Preview: Autism Bulletin

Autism Bulletin

News, insights and resources for parents of kids with autism spectrum disorders

Updated: 2017-06-21T22:22:14.293-04:00


Dan Marino's Forward Pass for Adults with Developmental Disabilities


The Dan Marino Foundation this week unveiled plans to create a vocational educational program for adults ages 18 to 28 with autism spectrum disorders, Asperger's syndrome, Down syndrome, cerebral palsy and other disabilities. The Palm Beach Post has a good explanation of the program, called the Dan Marino Foundation Vocational Campus, to be located in downtown Fort Lauderdale, Fla., and serve 60 students starting in the fall of 2013.This is a program worth watching. The foundation, started by former NFL quarterback Dan Marino 20 years ago after learning his 2-year-old son had autism, has a record of building programs and raising money to help people with developmental disabilities. This new program aims to teach students skills, in fields such as culinary arts and auto mechanics, so they can get jobs and live more independent lives.As many families dealing with autism and other disabilities can understand, such a program also addresses a fundamental question: what will our kids do after they finish school, after they turn 22? In Florida, only one in five people with developmental disabilities have a job, the Marino Foundation points out.The Marino project is not alone, as other nonprofit organizations, educational institutions and social service agencies work to build or expand programs to include people with disabilities in the work force and society in general. The Easter Seals, based in Chicago, has long worked to train and place people, and now counts people with autism as a key constituency. A program called Think College, based at the University of Massachusetts at Boston, offers educational programs and training classes. This article in The Chicago Sun-Times reports on a career development program run by the Turning Point Autism Foundation of Naperville, Ill. The Jewish Vocational Service of Metrowest, in New Jersey, recently opened a career center for people with autism. There is also a Danish software company made famous by Harvard Business Review as its technical director, the father of a child with autism, applied some insights he learned as a parent to hire people with autism to do quality control work. You may know of other programs, and I invite you to post a comment on this blog with more information.It can be daunting to think of our kids' future when they grow up and wonder what it holds for them. Programs like these are not the answer for everyone, but the Marino Foundation's information flier on its new vocational center is worth reading. It says, in part:There are over 341,000 students in Florida who have a disability77 percent will graduate or age out [of school] without a standard diploma79 percent will not qualify for further educational opportunities70 percent do not believe they will ever have the means to live independentlyOnly 8 percent of companies in the U.S. report hiring people with disabilities90 percent of individuals with autism are unemployedBut the most meaningful statistic of all is that there is a 100 percent chance the Dan Marino Foundation Vocational Campus will make a difference[...]

Insights for Parents of Disabled Kids from Nobel Laureate Kenzaburo Oe


Kenzaburo Oe is a Japanese writer made famous in 1994 for winning the Nobel Prize in literature for work that “with poetic force creates an imagined world, where life and myth condense to form a disconcerting picture of the human predicament today.”He is also known as something else: the father of a son with serious disabilities, including autism.That he could make such critically-acclaimed, universal art inspired by his life experience—a number of his works, like the novel A Personal Matter, confronts the issue of having a seriously disabled child—interests me. Reading his work, learning about his biography, I want to know: How does he fashion a life of meaning from these circumstances? Where does he find the stamina to carry on as a parent every day and to also delve so deeply into these experiences? Apart from his writings, what is his attitude to parenting, and to life? What can others learn from him?These are big questions for a blog post and you will find only the beginnings of answers here. But I ask these questions because I see committed parents of kids with autism and other special needs struggling with the demands of their devotion. It takes so much time, effort and resources to set up services. Parents need to monitor the quality of those services, track results, and make adjustments. They have to advocate with government agencies and other service providers to obtain more effective, different or additional services as circumstances change. It takes time to manage behavior plans and individualized education plans. And that’s in addition to going to work, paying the bills, managing a household, caring for others in the family. For many (depending on where they are in the autism journey), these considerations can limit thoughts parents may have about other aspects of life, such as participating in community activities and religious life. Or simply making time to have fun.And yet, given all this, it is natural for parents to ask themselves, time and again: Can’t we be doing more?The song of the water railI was curious to know more about Kenzaburo Oe and when I learned he was speaking at Tufts University on November 3, I went to see him. What I learned was both basic and inspiring. At 74, Oe is a writer, a political activist, as a husband and a father who remains on high alert for moments of meaning. He described his political activism to close nuclear power plants in Japan after the Fukushima disaster, for example.When it comes to his disabled son Hikari, the moments of meaning he experiences give him both joy and strength. He draws sustenance from his son, both from Hikari’s achievements and his individuality as he has learned to express it.Oe recounted how his son (Hikari means “light” in Japanese) did not speak until he was six years old. Hikari’s parents provided tapes of song birds, narrated by a radio actor. A bird would sing, and the actor would identify it. Tweet. “This is a sparrow.” Warble. “This is a nightingale.” And more. Hikari would listen to these tapes for hours. And his parents could tell by watching him that he was listening, but his reactions did not involve intelligible speech.One summer when Hikari was six, Oe and his family spent time at a country cottage. “I was walking with my son on my shoulder,” he said. “Always, he was silent. Then some bird, a water rail, made a sound.“My son, he says, ‘This is the water rail’ in the accent of the radio announcer.”Oe continued: “I couldn’t believe that I heard my son speak.” But it soon became clear that his son could name that bird’s song and others. They continued listening to the bird song tapes for one year, then began listening to classical music. Mozart, Chopin, Bach. “He was charmed by the music,” Oe said of his son. “He abandoned listening to the old [bird song] tapes.”Then when the radio played in their home, Hikari began to identify the composers. He would say, “It’s Bach,” or “It’s Mozart.” Over time, Hikari began to study piano, but his physi[...]

Useful Article to Explain Autism Diagnosis to Kids


The Interactive Autism Network has posted a clearly written article designed to help parents discuss an autism spectrum disorder diagnosis with their child. The article, ASD Diagnosis: What Do We Tell the Kids? uses sensitive language and explanations that outline how kids with autism have many different profiles. It has information for siblings, too.

These elements all make the article useful for families who are looking to understand how to communicate with their children—and also makes it potentially valuable as a tool to help explain what is going on in your family to others, from grandparents and extended family members to friends who may have trouble relating to what's going on in your house.

The article explains:

"Each individual with ASD is different. Some are diagnosed at 2 and others at 12. Some are spending their day in a protected special education environment, and others are out in typical elementary, middle, or high school classrooms with some level of assistance, or none at all. Some are intellectually disabled, and some have IQs in the normal or even gifted range. Regardless of intellect, emotional maturity generally lags behind that of typical peers. All of these factors, and more, will influence a parent’s decision about when to inform a child about the ASD diagnosis."
The article encourages parents to "assess what your child already knows and is ready to hear" and to explain the news at the right level, to be positive about a child's capabilities and, overall, to tailor the information to a child's own situation while explaining that autism is "a different kind of disability."

"People have a disability when something isn't working quite right, and they need extra help because of it. For example, a person who is blind may need a seeing-eye dog. People with ASD have a different kind of disability. They can see just fine, but they have trouble with other things. Sometimes they get 'stuck' on a behavior or topic, and they have a hard time understanding how other people think and feel—that's why sometimes it's hard to figure out what people want, or how to make friends. People with ASD need extra help with these things."

This article includes a list of references to research articles and additional resources including other articles from the National Autistic Society in the U.K., from the Autism Society of America, as well as links to resources for families, adults looking at what kinds of information to disclose to employers and others, the well known Sibshops support group for siblings of people with disabilities, and publishers who specialize in books about autism.

This is the kind of article, even if you are not ready to discuss anything, will help you lay the groundwork to study the issue so you can make informed decisions later. Take a look.

A Note About Autism Bulletin on Twitter


If you are reading news and information online, you undoubtedly have heard something about Twitter, the online information service where users share short messages of 140 characters each. You don't have to post your own messages on Twitter to find it useful, but you do need to sign up for a free account to follow what others say. I recommend it as a good way to keep up to date, because many media outlets, organizations and bloggers -- including this one -- are posting information on the service.

Autism Bulletin's Twitter feed is here: I post links several times a week to items in the news, information about events, information from advocates for people with autism and other disabilities and other information I find useful as a member of a growing global community of citizens who care deeply about people with autism spectrum disorders.

Some recent examples:
* There's a conference, Advancing Futures for Adults with Autism, including a July 15 briefing for members of Congress, happening in Washington D.C.

* Another conference is coming up, August 7 and 8 in Greenwich, Conn., for people who have siblings with disabilities. Find more information at the International Sibling Conference website.

* The Lovaas Institute has posted a partial list of iPhone, iPod Touch and iPad applications designed to engage young children with autism using the principles of Applied Behavior Analysis (ABA).

* The Autism Society of America, in advance of its conference this week, recently recognized six advocates for people with autism and their families. Read more about the 2010 Autism Champions.

If you follow Autism Bulletin on Twitter, the messaging service pushes these information microbulletins out to you automatically. I also have posted a box on the home page of Autism Bulletin which lists these messages, or "tweets" with the latest one on top of the list.

That's the information part of Twitter. What's interesting about what observers and participants in this web publishing world call social media, and what's interesting about Twitter in particular, is that there's a loose sense of community that builds among participants. If you sign up for the service, you can "retweet" or re-broadcast messages you find interesting; you can send messages to others on the service. Or you can observe what happens when you share information.

Notice, for example, the list of more than 2,000 "followers" of Autism Bulletin on Twitter (that's a tiny number compared to the more than 100 million users who have registered worldwide, according to Wikipedia). Even in this small community, you will find:

* Parents
* People who have an autism spectrum disorder diagnosis
* Educators who work with autistic kids, including some who are working to start new schools
* Advocates
* Doctors
* Siblings
* Grandparents

There are people from many countries who speak many languages. Some are veterans of the autism community, while others are newcomers to having this diagnosis in their lives. It's another reminder, among many, that you are not alone.

Health Care Reform and Autism Coverage: Some Holes, Notes Autism Speaks


Autism Speaks, a major advocacy group, has a helpful post explaining some details of the health care reform bill signed this week by President Obama. In essence, the group praises the direction of the health care policy embodied in the bill and cites some direct benefits for families who are seeking services for people with autism. But the article also notes there are holes in specific coverage options, and cites these holes as reasons to continue to seek reforms.

On the plus side: the new law will end the practice of insurance companies denying benefits based on pre-existing conditions, including autism spectrum disorders. But the law won't mean that insurers must provide behavioral services such as Applied Behavior Analysis. From the article:

Not all insurance plans will be required to cover behavioral health treatment. That’s because only certain types of health plans will be required, beginning in 2014, to cover the list of essential benefits, including behavioral health treatment. The types of plans included under this provision are: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange. Existing coverage, plans offered in the large group market outside exchanges, and self-insured plans (plans under which an employer assumes direct financial responsibility for the costs of enrollees’ medical claims, or sometimes referred to as “ERISA plans”) will not be required to provide the essential benefits package. This last exception is especially significant because 57% of workers who are currently covered by their employers’ health benefits are enrolled in a plan self-insured by the employer.
See the article by clicking here: Health Care Reform: What does it mean for the Autism community?

The White House has links to information about the health care law and a link that leads you to the text of the law known as H.R. 4872, Health Care and Education Affordability Reconciliation Act of 2010.

A Survey for Parents of Kids with Autism to Help Design Parenting Courses


At Lesley University in Cambridge, Mass., educators are planning a set of courses specifically designed to help parents of children with autism spectrum disorders. Elizabeth Stringer Keefe, the coordinator of the Severe Disabilities Graduation Special Education Program at Lesley, has posted a survey for parents to fill out online. It's anonymous, takes about 10 minutes to answer 10 questions, and the responses collected about the kinds of services children are receiving, and what concerns parents have, will guide the course designers.Click on this link to take the survey.I learned about this survey after writing to Elizabeth to ask about a day-long program on April 10, 2010, at the university, Realizing the Full Potential of Students with Asperger's Syndrome. The program is for special education administrators, teachers, occupational therapists, speech and language pathologists, psychologists, other educators as well as parents. The fee for the event is $65 and proceeds go to benefit the Asperger's Association of New England, an important advocacy and education group based in the Boston area.The program includes four speakers, including Ellen Korin, a special educator and author of Asperger's Syndrome An Owner's Manual; Stephen Shore, a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome, among other works; Karen Levine, a developmental psychologist and instructor at Harvard Medical School who co-founded the Boston Children's Hospital Autism program; and Ross Greene, associate clinical professor of psychiatry at Harvard Medical School and author of The Explosive Child.This Asperger's program is the third annual speakers event Lesley has organized. Here is what Elizabeth explained to me in an e-mail:Having been a classroom teacher, a consultant (I still consult to schools in the area of ASD) and now a university professor, I realize more than ever that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, unfortunately, and requires a specific skill set and understanding. So, calling for specialized training for those working with kids with ASD is one initiative of my program. In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, I made a second initiative of the program the commitment to provide low-cost professional development for anyone working with this population. And lastly, a third initiative of my program is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for both the teachers that leave my program and for other colleges and universities. So, the last 3 events I have hosted for the series are charity events for a non-profit, with 100% of proceeds going to support the organization (my time is donated as well). This year I also asked Ellen Korin, and Drs. Levine, Greene and Shore to donate their time and they graciously obliged.One consequence of the rising incident of autism spectrum disorders is an increase in the number of parent education opportunities. Finding the time to attend one of these events can be difficult—but it's essential to check out the opportunities near you, if only to understand what's going on. Especially in challenging seasons as the parent of someone with autism, it helps to see that these events are happening because it demonstrates that you are not alone, that there are people working to provide information, ideas, approaches to help.One last point about educational events: if it costs money to attend, make sure to check out the source who is providing the information, to see if it is reputable. Or, simply seek out an event that's free of charge to attend (for it's possib[...]

How the Bernard Madoff Ponzi Scheme Affects People with Autism: One Anecdote


When I was a reporter at a local daily newspaper, our staff spend great energy researching and writing about issues around the world—events like the first Gulf War, say, or budget battles in Washington—and figuring out how to explain those events and how they influenced people's lives where we lived and worked. Finding the right connections took a lot of looking around. It seems like nowadays that one doesn't need to go looking: the events come right to you.

Such is the case with one of Autism Bulletin's readers, a family who is losing a chunk of its respite help for an autistic child because of the infamous Bernard Madoff Ponzi scheme. Madoff, 70, pled guilty in court this week and was sent directly to prison to await sentencing for a scheme in which he bilked thousands of customers of more than $50 billion by promising healthy returns on fictitious investments. The assets that went in were real. But most of it appears gone, as government investigators and lawyers for the clients continue their hunt.

That much you may learned already through the media. The way this affects the family with an autistic child is a simple chain reaction of financial losses, a supply chain of scandal that takes away the respite services. It goes like this:

1.) Madoff's Ponzi scheme bilks investors.
2.) Among the many investors is the Carl and Ruth Shapiro Family Foundation, founded in 1961 as a philanthropic organization, which "supports Arts and Culture, Education, Health and Hospitals, Jewish Causes and Social Welfare programs in Greater Boston and Palm Beach County, Florida."
3.) The Shapiro Foundation announces it will suspend grants for 2009 as a result of its losses in the Madoff scheme.
4.) Among the grant recipients was a community center south of Boston, which provided the respite care. Without the grant money from the Shapiro Foundation, our Autism Bulletin reader reports, the respite program shuts down.

Autism Readings, Resources from Around the Web


I found these articles, resources and related items of interest for families of kids with autism spectrum disorders. I have found the web application Twitter to be a useful way to share interesting items online (at a higher frequency rate than I recently have been able to post articles on this blog). Below are links to the items, which you can also find at Below is a sampling from the past two weeks:Autism Society of America: copy of E-mail newsletter Autism Society of America: national conference, St. Charles, Ill., July 22-25 President Obama includes funding for autism in his FY 2010 budget proposal, via Autism Speaks - read more here Alabama Autism Task Force report, recommendations here. Agenda for Flutie Foundation for Autism conference April 7 in Norwood, Mass., read here. Easter Seals campaign: Urge Congress to support families living with autism today: read here. New from Newsweek: Autism: How Childhood Vaccines Became Villains Toronto Jewish community holds disability awareness and inclusion events. U.S. National Institute of Mental Health say stimulus spending to be guided by this strategic plan: read here. Autism Speaks calls for $200 million for National Institutes of Health autism funding from U.S. stimulus package RT @UKAF: The London Guardian recently featured the UK Autism Foundation. Nevada considers autism insurance bill, news item via Latest edition of Positively Autism newsletter with ABA-related articles. New Hampshire Walk for Autism has set up website for event Oct. 4, 2009 From, college programs for autistic students Wrightslaw newsletter on special ed funding in federal stimulus package Autism insurance coverage advocates in Kansas continue to press case in state legislature Autism programs take a hit, Boston Globe article on special ed budgets Mass. events calendar for families with special needs kids A journey of love and discovery as sibling of an autistic sister, from Portland Oregonian newspaper [...]

Third Annual ABA Autism Event February 6-8 in Jacksonville


The Association for Behavior Analysis International (ABAI) is holding its third annual autism conference on Feb. 6-8 in Jacksonville, Florida, with the theme, "Research to Practice: Making Real Changes in the Lives of People with Autism."Founded in 1974, ABA International is the professional organization for behavior analysts, a group that has seen demand for its members' services rise with the population of diagnosed children with autism spectrum disorders. (See the organization's website, including this page with information for parents.)Choices about what kinds of approaches to use for helping children with autism spectrum disorders abound, and information about alternative therapies, diets, treatments and medicines circulate around the web and among parent discussion forums. Applied behavior analysis—backed by research and evidence that when trained therapists with expert supervision deliver services, they help people gain important skills—has gained important support among autism experts, educators and the medical community. See more about ABA in the Autism Bulletin archives.As a parent, I have found it valuable to attend educational events; it's a way to connect with both professionals who are doing research about autism and meet up with other parents. It's a way to know you are not alone. I attended the ABA International conference when it was in Boston several years ago and came away impressed by the experience and knowledge of the presenters.This year's event will address topics such as adults with autism, ABA school programs for children, Florida's autism legislation and ways to implement successful treatments for autism. Below is a brief overview of the components of the conference.This year's conference, "Research to Practice: Making Real Changes in the Lives of People with Autism," will host 15 distinguished ABA experts presenting resources and information that teachers, therapists and parents can use to improve the lives of those living with an autism diagnosis. Presentations will focus on a variety of topics relating to three common themes important to the future of ASD treatment methods:· Treatment Developments - A summary of the latest progress in behavioral intervention methods and how applied behavior analysts are helping to integrate people those with ASD into the community.· Success Stories - Using science to guide autism treatment taking a look at the most recent and reliable case studies to help determine the future of those living with ASD.· In Their Own Words - Personal observations and recommendations from professionals and parent advocates who are most closely affected by ASD.See below for a rundown of speakers, provided by ABA International:ABA Autism Speakers Summary Publish at Scribd or explore others: Brochures & Catalogs autism aba [...]

Massachusetts Considers Autism Insurance Bill


The Massachusetts Legislature is taking up a bill that would require private healthcare policies cover autism services such as Applied Behavior Analysis, physical and occupational therapy, diagnostic and other services. You can see a copy of House Bill 67 below. Rep. Barbara A. L'Italien, a Democrat from Andover, and Senator Frederick Berry, a Democrat from Peabody, introduced the bill earlier this month.Advocates from, an initiative of the advocacy group Autism Speaks, have set up a website for this Massachusetts initiative. It's one of several efforts around the country to raise awareness of the issue of autism insurance, and to press for increased coverage.The autism insurance issue has been a key legislative effort for autism advocates for quite some time. As awareness about the prevalence of autism spectrum disorders has increased, so have calls for ways to help families who are thrust into finding ways to help their children, with early intervention services and special education programs. (Calls to help young adults and adults have not been as loud, but one can anticipate they will grow as the cohort grows and matures.)In state after state (see Autism Bulletin archives for articles on South Carolina, Texas, Pennsylvania and other states), the battle shapes up to be one where families and advocates point out the need for services and the health insurance industry argues the cost is too high. Massachusetts is among those states where we can expect to see that conflict play out this year.Below are two documents (e-mail readers will see links, and blog visitors should see an image of the documents embedded in this article). The first document is a copy of House Bill 67, which calls for insurance coverage for autism services. The second document is an Autism Speaks advocacy paper, prepared in 2007, outlining the reasons for supporting this type of legislation.MA HouseBill 0067_001 - As Introduced Jan 2009 Publish at Scribd or explore others: Government Business & Legal autism autismbulletin.blogs Below, find the Autism Speaks document that lays out an argument in favor of autism insurance coverage.Arguments for Private Insurance Coverage Publish at Scribd or explore others: Politics & Governmen Presentations & Slid autism autismbulletin.blogs [...]

Autism Insurance Legislation Updates


There's been a lot of activity around the country on the autism services and insurance legislation front. The chart and map below is an uploaded copy of a PDF assembled by Autism Speaks, a leading autism advocacy organization. It shows the status of insurance legislation as of December 17, 2008.If you are receiving this by e-mail, you can find the chart by clicking here. Green states—Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina and Texas—have passed laws that "require private insurance companies to cover autism services, including Applied Behavior Analysis (ABA)."Red states—Michigan, New Jersey and Virginia—are considering bills endorsed by Autism Speaks that reform autism insurance coverage.The map also shows other states—most, that is—which are in some fashion starting to work on an autism insurance bill.There have been some updates since Autism Speaks published this chart. These include:•Washington State, where advocates today issued a press release on pending legislation. From the release:Washington lawmakers are getting ready to consider two companions bills, HB1210 sponsored by State Representative Brendan Williams (D-22) and SB 5203 sponsored by State Senator Steve Hobbs (D-44), that will require health insurance plans to cover diagnosis and treatment for autism spectrum disorders, including services like Applied Behavior Analysis, for individuals up to age 21. The bills, referred to as "Shayan’s Law," follow the recommendations of the Caring for Washington Individuals with Autism Task Force in their Executive report to the Governor (December 2007). The report lists health insurance coverage of autism-related treatments within Washington State as its number one priority recommendation. The grassroots organization, “Washington Autism Advocacy”, made up of parent volunteers, has up to the minute information about the bills on its website bills were introduced in the legislature the second week of January. Once passed, they will require private insurance companies to pay for diagnosis and evidence-based treatment of Autism Spectrum Disorders, including Applied Behavior Analysis. In addition, they will remove unreasonable visit caps that have left thousands of families facing autism uninsured or under insured. Autism is a neurological condition that affects 1 out of 150 children. 51 State Representatives and 29 State Senators, who recognize the debilitating impact the autism epidemic is having on children, families and schools, have signed on as cosponsors of Shayan’s Law. •Wisconsin, where autism advocates report: "Wisconsin's new Legislative session has begun and in it is this introduction of a Bill for Autism Insurance dated January 8th, 2009. It has been read for the first time and was referred to the committee on Health, Health Insurance, Privacy, Property Tax Relief, and Revenue on the same date." According to an analysis by the Wisconsin Legislative Reference Bureau:This bill requires health insurance policies and self−insured governmental and school district health plans to cover the cost of treatment for an insured for autism, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified if the treatment is provided by a psychiatrist, a psychologist, a social worker who is certified or licensed to practice psychotherapy, a paraprofessional working under the supervision of any of those three types of providers, or a professional working under the supervision of an outpatient mental health clinic. The coverage requirement applies to both individual and group health insurance policies and plans, including defined network plans and cooperative sickness care associations; to health care plans o[...]

Autism Bulletin Twitter Feed


I have created an Autism Bulletin Twitter feed to share more information with people interested in news and information about autism spectrum disorders.

Twitter is a service that allows users to post short messages (up to 140 characters long) on the web. It is an easy way to share news and information and website links with interested people. I receive a lot of information—more than I can post in the short essays here—and I hope this will be a means of sharing more information with you.

I have created a box on Autism Bulletin, at the top right, for you to see the latest Twitter posts, also known as "tweets." If you already have a Twitter account, you can receive these posts in your personal Twitter feed by following

Please let me know if you find this useful. And as always, keep the suggestions and articles coming. If you do share articles with me, it's very helpful if they come with a website link as well as text. Thank you for reading Autism Bulletin.

U.S. Version of "The Transporters" Video Series Designed for Autistic Children Arrives


The British autism researchers who recently made The Transporters, a series of animated videos to help young children aged 2 to 8 learn to recognize emotions and facial expressions, is unveiling a version of their DVD for the U.S. market.The DVD, which has a series of 15, five-minute episodes and contains quizzes for viewers to review facial expressions from each episode, costs $57.50 with a portion of the proceeds going to autism research groups and charities including Autism Speaks. The DVDs are available starting January 12, 2009 at The are quite a number of autism-related products aimed at families who are, of course, desperately interested in finding ways to help their kids make gains in communication skills, among other things. You won't find many product references or endorsements on Autism Bulletin because I don't want to recommend you spend precious dollars on anything.The Transporters is interesting because when it first came out, about a year ago, it was a project supported by the British government, working with the Autism Research Centre at the University of Cambridge's medical school. The UK government supported the development of this video series and made it available to thousands of families at no cost.I've asked the public relations company for The Transporters if they know of any plans to distribute this DVD to public libraries or other places where parents who can't afford the price may borrow the video.The other reason this project is interesting is because the champion of The Transporters is well-known autism researcher Simon Baron-Cohen. In developing this project, researchers are leaning on the popularity of cars and trains among young autistic children (does your little one like Thomas the Tank Engine?) while embedding within the front of vehicles people's real faces and expressions. The episodes cover emotions like happy and sad, excited and angry, as well as more nuanced feelings like sorry, proud, surprised, unfriendly, tired, grumpy and worried. The researchers assume that there will be repetition involved in playing the short videos, to reinforce the impressions and messages.In a press release accompanying the release of the U.S. version of the DVD, Baron-Cohen states:"Imagine you're the parent of a child with autism and your child doesn't look up at your face, doesn't respond when you call their name, doesn't interact in the normal way. It can be really heartbreaking. The Transporters addresses this challenge by helping children with autism look at faces and recognize feelings. We've found a way to reach children with autism by bringing the social world to them rather than expecting them to come to us."There are examples of the British version of The Transporters available on YouTube. You can see an example of The Transporters in this YouTube video clip, about five minutes long:Also see this four-minute video with researcher Simon Baron-Cohen, and a clip showing a child answering questions from the quiz on the video.Also see from Autism Bulletin archives:Videos from British Autism Researchers Teach Children to Recognize Emotions[...]

Support Group for Siblings of Disabled Now on Facebook


The Sibling Support Project, a Seattle-based non-profit group that works to help siblings of people with disabilities, has started an online group on Facebook, the huge social networking website. You need to join Facebook's free service to become a part of the group. Learn more about that by visiting the SibNet on Facebook page.

This is clearly more of a benefit to the adult siblings of people with disabilities. It's a valuable reminder for families of children with autism spectrum disorders that the needs of siblings continue on as kids grow up.

If you pay attention, there's a stream of media coverage that gets at the issue. National Public Radio broadcast a piece on January 1 about Marissa and her younger brother Andrew Skillings, who is 11 and has Asperger's, a form of autism. You can read, see photos and hear about their relationship by clicking on "Coping with an Autistic Brother" at Here's a quote from Marissa:

"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."

"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."

You can find more articles related to siblings on Autism Bulletin.

Autism Advocates Scheduled to Meet with Obama Transition Team


A small group of autism advocates are scheduled next week to discuss disability and health care policy with President-elect Barack Obama's transition team, according to one of the advocates invited to the event.

Ari Ne'eman, president of the non-profit organization Autistic Self Advocacy Network (ASAN), has communicated with other advocates for people with autism that he was invited to speak with members of Obama's team, and said he seeks input from others in the community. In an e-mail message distributed by The Autism Acceptance Project, Ne'eman, wrote:

Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I'd like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We've been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you.
The Autistic Self Advocacy Network is based in Washington, D.C., and was founded by Ne'eman, who explains in his website biography that he's a student at the University of Maryland-Baltimore County. Ne'eman, who has been diagnosed with Asperger's, runs this group along with others with autism spectrum disorders. The group's website notes: "ASAN's public policy initiatives involve advocating for greater support and understanding for adults and children on the autism spectrum."

What priorities would you advocate? Here's the contact information for Ari Ne'eman via e-mail:

Also see:

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

Autism Society Urges Families to Voice Concerns to Obama's Transition Team


The Autism Society of America, a leading advocacy group for parents and families, is urging its members to post comments citing the need for autism support services and full funding for the Individuals with Disabilities Education Act on President-Elect Barack Obama's transition team website, Obama team has continued its use of web-based technologies honed during the election campaign, both to inform and engage voters and raise record amounts of money. During the transition between presidencies, Obama has used to speak directly to voters through video and other means—and engage citizens on ideas that are important to them. (Here's a New York Times article discussing this feature.) With the floor open for discussion on a range of issues, the Autism Society says now is the time to join the online meeting to discuss healthcare policy, which is titled, Health Care — Of the People, By the People.The Autism Society has posted a web page with suggestions for submitting comments. The substance of the Society's suggestions are below:Start off with a brief explanation why you are concerned and want things to change. I am the parent of a child with autism and I want my child to have happy and productive life just as any parent would want for their child. Provide some facts such as: Prevalence 1 in 150 U.S. children is diagnosed with autism. Boys are four times more likely than girls to have autism.1.5 million Americans have an autism spectrum disorder Diagnosis Less than a decade ago, the disease was diagnosed at age 3 or 4. Now it is routinely diagnosed at 2.Symptoms range from mild to severe. Many people with autism display rigid routines and repetitive behaviors. Cost Lifetime cost of caring for a child with autism: $3.5 million to $5 millionAnnual U.S. cost: $90 billion The explosion of autism spectrum disorders (ASD) and related disorders in the United States constitutes the largest health care crisis in our nation’s history. It has been estimated that 1 in 150 children will be diagnosed with ASD, with recent data suggesting that as many as 1 in 67 boys are now affected. Autism is the fastest growing disability in the country, now affecting an estimated 1.5 million individuals - more prevalent among our children than pediatric cancer, diabetes, and AIDS combined. There are approximately 24,000 new cases of autism diagnosed each year. Every 20 minutes another child is diagnosed with autism in the United States. The alarming increase in autism spectrum disorders must be considered a national health emergency that requires the allocation of significant resources, aggressive research toward effective treatments for those affected, and rigorous investigation into causation for the protection of future generations. Equally important is to ensure that individuals affected by autism receive help TODAY. Offer solutions, such as: Legislative Agenda Please support Expanding the Promise to Individuals with Autism Act. This bill would provide adults the services they need to lead a productive and meaningful life. The Autism Society of America works to ensure that adults living with autism have access to appropriate employment, housing, and services. ASA chapters have been instrumental in developing job training programs and creating independent living or residential services opportunities for adults with autism. This act will allow these programs to grow and serve more adults nationwide. Please support Full Funding of the Individuals with Disabilities Education Act. Federal funding is $10.5 billion short of full funding this year leaving thousands of children without services. Autism [...]

Kansas Advocates Say State to Consider Autism Insurance Bill


(image) Kansas lawmakers are getting ready to consider a bill that would require health insurance plans to cover diagnosis and treatment for autism spectrum disorders, including services like applied behavior analysis to cover citizens of the state until age 21. The proposal also calls for an exclusion for small businesses who would not have to offer such services through their health plans.

The proposal, referred to as "Kate's Law," follows the establishment of the Kansas Autism Task Force, a panel of citizens set up by the state in 2007 to look into the needs of people with autism.

The Kansas Coalition for Autism Legislation has lots of information about the proposal on its website and its special Kate's Law web page.

The bill itself has not been introduced officially in the legislature, but the outlines of it are slated to include the following, according to the Kansas Coalition for Autism Legislation:

• Health insurance policies must provide coverage for the diagnosis and treatment of autism spectrum disorders
• “Treatment” includes any therapy prescribed by the attending physician and includes applied behavior analysis, speech therapy and occupational therapy
• Coverage for applied behavior analysis shall be subject to a maximum benefit of $75,000 per year through age 21
• Small businesses, i.e. employers with 50 or fewer employees, may “opt out” of these provisions
• Health insurance companies cannot deny coverage on an individual solely because the individual is diagnosed with an autism spectrum disorder

The Kansas advocates for this bill, who are gearing up for a public education and awareness campaign, have posted a couple of YouTube videos explaining the medical, social and financial implications for a family that received an autism diagnosis. The first video is below, or if you reading this via e-mail subscription, you can find the 7-minute clip here.

(object) (embed)

Watching Obama's Stimulus Package and How States Receive Federal Aid


President-elect Barack Obama committed himself to helping state governments deal with economic problems and budget shortfalls in a meeting in Philadelphia on Dec. 2. Assuming the new Obama administration can win support after taking office in January and start implementing its plans, this is good news for many who care about services delivered at the state level.While this issue clearly goes beyond services for people with autism spectrum disorders, it will be important for advocates to watch how state-level budget discussions progress. Most state governments—41 out of 50 as of this week, The New York Times reported— are forecasting budget deficits this year.In Massachusetts, Gov. Deval Patrick told WBUR radio in Boston that Obama and governors shared a strong consensus that a new stimulus package will focus on "job creation, to build roads and bridges, restore rail systems, install green technology, refurbish public buildings." Patrick added that governors told Obama states need help with rising demand for services like Medicaid, food stamps and unemployment benefits, which are rising as state revenues fall.Update: WBUR posted the audio clip of the interview with Deval Patrick at my request. Here it is:Those points are clear: new federal money for roads, bridges, buildings, new environmentally-friendly fixtures and technologies. Help for people hurt by the recession.What's not clear so far is how operating budgets are faring at the state level, and at the level of cities and towns, where our kids go to school, for example, or other important services get delivered. Those are the decision-making processes that bear close scrutiny, and likely, some advocacy.If you have information about goings-on in your state, please feel encouraged to post a comment below this post.Below is a video of Obama's remarks at the governor's conference on Dec. 2 in Philadelphia, via Yahoo video.President-elect Obama and governors tackle the economy @ Yahoo! Video[...]

The Grandparent Autism Network of Orange County, California


One thing I have learned from experience and from networking with other parents of kids with autism spectrum disorders is that grandparents have the potential to be difference makers. Grandparents can serve as a sounding board for the myriad decisions we have to make about our children. They can provide both all kinds of support—emotional, respite, you name it (assuming they are in a position to help).

That's why it's so encouraging to report on the growth of the Grandparent Autism Network of Orange County, based in Tustin, California. Bonnie Gillman, founder and president of the Grandparent Autism Network, said she believes the group is the only nonprofit support group set up exclusively for grandparents in the United States. Its members include more than 500 grandparents in 34 cities in Orange County in southern California, and its website,, has people all over the world seeking information from it.

Here is a list of pilot projects, which Gillman notes welcomes the participation of all adults, whether they are grandparents or not, and which her California group hopes can be replicated by others in other locations:

The Special Needs Acceptance Book Project will increase awareness and peer support for children with special needs to prevent bullying. This book and accompanying Teachers' Guides for K-6 grade classrooms and Christian and Jewish settings will be introduced to elementary schools, youth groups, churches, synagogues and libraries in the 34 cities of Orange County. Interactive educational and character building activities help children to understand more than 20 different developmental disabilities. The project teaches that everyone is special and everyone deserves to be understood and accepted.

A Job Opportunities Committee will assist job vendors contracted by the Regional Center of Orange County to identify prospective employers for people with special needs. There are several ways volunteers can help to develop a broad range of new work opportunities. The Orange County group plans to share information about this initiative at a statewide meeting in February 2009.

Two informational videos designed to broaden awareness: "The Impact of Autism on Intergenerational Relationships" and "Autism Research: Fact and Fiction."

We have seen a growth in awareness in the United States in the past few years about the need for autism awareness and support of people with autism spectrum disorders. The establishment of an organization like the Grandparent Autism Network is a reminder to parents who may feel they are stuck in the midst of IEP negotiations, or coping with daily living challenges and trying to help their children, that we are not alone.

More Autism Resources for the Presidential Election for Voters


The Autism Society of America today publicized a presidential election resources page, with statements by Republican John McCain and Democrat Barack Obama. Find the page here, with the candidates' full statements:Statements on autism by the presidential candidates.Excerpts below.From McCain's statement: As you know, autism is a "spectrum disorder" that affects individuals differently and to varying degrees. Because of this, there is no single approach to resolving the many challenges of individuals with autism and their families. That is why I have supported a range of activities to improve the diagnosis, treatment, education, and lifespan needs of individuals with autism. The first issue is to ensure that children with autism are diagnosed early -- when the condition is most treatable. All research indicates that children who receive comprehensive therapies can have dramatically improved outcomes. Federal efforts must support research to improve early diagnosis, intervention and treatment. I cosponsored and worked to enact the Combating Autism Act of 2006, which is helping to increase public awareness and screening of autism spectrum disorder, promotes the use of evidence-based interventions and created autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. ... We must also strengthen our educational system, so that our schools can meet the needs of children with autism. Well-trained special education teachers are essential to the health of the public school system and speak volumes to our ability to ensure basic civil rights. I have often stated that our nation’s children deserve an equal opportunity to succeed. This opportunity should not stop short of children with autism, or any other developmental disability. From Obama's statement: As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. I believe that we can do more to help Americans with ASD and their families understand and live with these conditions. That's why I am committed to increasing federal funding for autism research and treatment to $1 billion annually by the end of my first term in office. I also believe that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind. I also support the adoption of a comprehensive plan designed to provide lifelong supports and resources to Americans with ASD and other disabilities. This plan would ensure that their needs are met by: • Reclaiming America's global leadership on disability issues by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities; • Providing Americans with disabilities with the educational opportunities they need to succeed. • Ending discrimination and promoting equal opportunity • Increasing the employment rate of workers with disabilities, and • Supporting independent, community-based living for Americans with disabilities. More importantly, as you have all gathered here today to discuss, access to health care is a pressing need – one that we can no longer afford to ignore. As President, I will make high quality, portable health care plans affordable to all Americans, including the self-employed and small businesses. Links to the candidates' websites:Obama's homepage, and the campaign's disabilities page and a statement about autism.The McCain campaign's website includes lots of information about the candidate's policy issues, inclu[...]

Why This Parent of a Special Needs Child Is Voting for Barack Obama


There have been a number of essays and editorials about the presidential race, considering in depth the positions of Republican John McCain and Democrat Barack Obama, which I would recommend: The New Yorker and The Los Angeles Times are two that endorse Obama which clearly lay out the case—in general, for a change in direction for the United States, and specifically for Obama's leadership.I cite those examples for two reasons: First, I don't decide whom to support based on one issue, whether it be autism or something else. And second, this blog post is going to hit just a few highlights. Still, when it comes to this blog's readers—mostly parents and family members of people with autism spectrum disorders—there are several reasons to add Autism Bulletin's voice to those supporting Barack Obama for president, and Joseph Biden for vice president:1.) The Role of Government in Our LivesNo one I have met in this journey as a parent of a special needs child plans to use government services more than anyone else. We became parents, and then we learned that we had a special needs child. It happened, and most of us have learned that no matter how hard we try, we need help. It's not our fault we need help, but we do.The government can help, in many ways: through the work of educators teaching our children new skills, in early intervention programs, in school settings and at home; through supporting healthcare programs that augment those school- and home-based services; for autistic adults who require support to live in our communities. We're in tough economic times, certainly, and it is difficult to imagine a great expansion of social services in the coming years. But listening to Obama and McCain during the campaign, the conventions and the debates, it is clear to me that a Democratic administration would be better for our kids and our families.I say this having heard the pledge by Sarah Palin, the Republican vice presidential nominee, to be an advocate for special needs children in the White House. But I have trouble reconciling that pledge with a historic position by the Republican Party to want to eradicate the Department of Education. I have trouble seeing how a Republican administration would support government research dollars going to help people with autism, when John McCain promises to cut spending across the board. (I also recall stories like that of Mike Bernoski, a parent who was thrown out of Republican Joe Barton's Congressional office when Bernoski sought to discuss the Combating Autism Act.)And, more importantly, it's clear that Obama has both education and social services at or near the top of his agenda. When he has to make tough choices, he has indicated that he will prioritize education and healthcare goals. He is a better choice.2.) The Healthcare System in AmericaAdvocates for people with autism spectrum disorders have done heroic work in recent years around the country, state by state, to win more health insurance coverage for our families. There's more work to be done.John McCain's healthcare proposal seeks to apply free market principles to the nation's healthcare system. It would allow people to shop for health insurance across state lines, which leaves in doubt state governments' requirements to cover citizens according to state laws. At the least, it would appear to undercut the role of states and appears to threaten the gains the advocates for our families have won.In a market-based model, there are always winners and losers. The question then come[...]

Rooting for Melanie Roach, Olympic Weightlifter, Autism Advocate, Mom


If you see Melanie Roach in one of those made-for-TV profiles of Olympic athletes in the next couple of weeks, believe her when she says that it's a world-class victory for her to have made it to Beijing at all.Roach, 33, is on the United States women's weightlifting team that is due to compete when the summer Olympic games start this week with the finals scheduled to be held on Friday, August 8. As reported in The New York Times and NPR, Roach has battled for the past three years—after having three kids, including one with autism spectrum disorder—to return from back surgery to train, compete and finally, make the Olympic team.Roach told NPR that having a son with autism has taught her to focus on the moment, and the things that are possible, rather than the long term and what is not possible. From the story:Roach's Olympic quest has been both complicated and enriched by her son Drew, who is autistic. Not long after Drew was diagnosed three years ago, Roach went into a near depression. A devout Mormon, she prayed her son would get better. When he didn't, she went to her bishop in tears. He told her to stop focusing on what Drew couldn't do. It was, she says, a turning point. She began to truly embrace who Drew was — living in the moment with him and not dwelling on the past or the future. "I really feel like that concept of enjoying the now and not worrying about the future is what my coach has been trying to teach me for 14 years — and that is what has made me such a different athlete 10 years later, and that is what has made me strong enough mentally to make this Olympic team."If you have about seven minutes, check out this video The New York Times did earlier this year profiling Roach, visiting with her and her family and watching her train. She is matter of fact about her 5-year-old son Drew having autism (and her husband Dan being a state representative in Washington, and owning a gymnastics business). She says Drew is challenging, and you can see some of that in the video.Roach voices what many parents of kids with autism spectrum disorder feel:"It's difficult to let go of the expectations you have for your child. You have to kind of come to the realization that the things you thought he might become, or the experiences you think are normal for your children, sometimes don't happen for a child with autism," she says, adding that for her, "It was about letting go, and finally embracing who he was and to not think too much about the future and just enjoy who he is now.""People look at me funny when I say that weightlifting is the easiest part of my day, but it's true."She also adds: "I would trade every minute in international competition for a cure for autism."(Photo from[...]

Great Teachers of Kids with Autism Deserve More Than Gratitude


How do you say goodbye and thank you to a teacher who has made an important, positive, lasting impact on your child's life? On the lives of your whole family?

This is an important issue for families who have children with autism spectrum disorders because special education services are an essential component of enabling a person with autism to learn and develop skills—in the classroom, at home, and in the community—that will form the building blocks of a better life.

And parents I've met rightly focus on not just the person doing the teaching—let's stipulate you have to be a kind, patient person to want to be a teacher of kids with special needs—but also on the person's qualifications, training and experience. (Good supervision also makes for superior teachers, but that's a topic for another post.)

The point here is: When you find a great teacher, you know it. You not only experience your child learning new things, you get to see data that tracks such learning. You not only see a child who enjoys seeing the teacher, but you as a parent get to learn new things about how to support and enhance your child's development. You get to ask questions, make suggestions. If you read someplace that it takes a village to raise a child, it can feel like it takes a town to raise a child with autism; and the teacher is a leading citizen in that town. A great teacher is a gift, something you can't quantify in terms of value. You know you have a great teacher because you dread having to say goodbye.

So how do you say thanks, how do you show your gratitude to someone whose work has been a gift? Here are some thoughts below. You are encouraged to add your own.

1. Don't wait until the end of the school year (or teaching cycle) to say thank you.
Offer positive reinforcement early and often. Learn what kind of praise resonates most with a teacher. It could be a written note, a donation to charity in her honor, a letter of commendation to her school, her supervisor.

2. Be a good partner.
Because teaching kids with autism requires a commitment by parents to complement what is going on at school, listen to the teacher's good advice, work with her on behavior plans to develop them and carry them out. Demonstrate you are not only an expert on your child's needs, what motivates her to do well, but that you also are a good listener, interested to learn more from skilled educators.

3. Look for ways to support educational institutions for kids with autism, which are training more great teachers.
If your great teacher is affiliated with an educational institution or school district, there could be a way to volunteer to help them, or become a contributor.

4. Ask other parents for their thoughts.
Other parents you meet along the way to figuring out how to make a difference for your child with autism can help you answer many questions. How do they show their appreciation for great teachers?

Also see:

Autism Specialist Market Heating Up; How Do You Thank Your Autistic Child's Teachers?

Autism Legislation Advocates to Meet in September


A group of autism advocates from around the nation are planning their third annual meeting in September in Kansas City to discuss strategies for influencing public policy and state laws to help people with autism. The meeting dates are September 26 and 27, and the location is to be announced.

The group includes parents and other advocates working on such issues as health insurance coverage for autism services. Those attending this meeting in past years have led successful efforts in South Carolina and Texas to pass state laws requiring health insurers to cover autism-related services for children.

Lorri Unumb, a law school professor and advocate from South Carolina who organized the first two advocacy meetings and was a leader in the legislation effort in her state last year, said in an e-mail to fellow advocates: "I started organizing these “summits” a couple of years ago as a forum for parents and professionals who are interested in autism legislation and policy to get together and share ideas." The agenda, she said, includes sharing information, strategies and arguments to help broaden coverage for people with autism.

The meeting would be valuable for advocates and parents who are working in their states to pass such legislation and raise awareness. For more information about the event, send an e-mail to Lorri Unumb at lunumb AT sc DOT rr DOT com.

Reprise: Why Families with Autism Need to Celebrate Mothers Often


Last year for Mother's Day, I posted this piece on Autism Bulletin: Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions. Click on the link to read the piece.

In short, parents, and especially moms, work long and hard to help their kids. It's important to take time off, away from this demanding life, so you can rest, recharge and get back to it. Respite helps you help your children.

Some respondents to this piece explained, understandably, that getting time away from the family can be difficult to arrange. An unscientific survey on this blog showed that most parents took no time off at all.

When was the last time you took a break, for at least an hour? And what did you do? Walks count. So do coffee shop meetings.

Please feel encouraged to share your thoughts.