Rep. Ellen Story honored as advocate for the autistic (Amherst, Mass.)
An autism services advocacy group honored state Rep. Ellen Story D-Amherst with its legislator of the year award last week, a citation that came one year after Story helped pass legislation that will require health insurance companies to provide insurance to individuals with autism. Read more.
Naperville autistic student fights to end ‘R word’ (Naperville, Ill.)
Jordan Schubert stands before a crowd of 300 swimmers who have been joined by their coaches and families for a Special Olympics swim meet at Neuqua Valley High School in Naperville. Read more.
Moms Talk: Autism Awareness Month (Corona Del Mar Patch)
Thank you for joining this week’s Moms Talk (the name notwithstanding, dads, grandparents, expecting parents and even people with no kids are welcome and encouraged to contribute). Every Thursday, check out a new Moms Talk discussion on Corona del Mar Patch. Help add to our conversation and leave a response in the comment section below this article. If you have a question that you’d like our Moms Council to answer, send us an e-mail. Read more.
Mom seeks custody of boys with autism ‘imprisoned’ by dad (Vancouver, Wash.)
The biological mother of two children with autism rescued from what police called a prison in their own home is seeking custody of the young boys. Read more.
Madison senior saluted at autism event (Madison, Ohio)
It’s a little tough for her to admit, but Jennifer Sturgis, a senior at Madison High School, was a little nervous Wednesday evening. If 14,000 people were all looking in your direction, you might be, too. Read more.
In honor of Autism Awareness month, the National Institutes of Health in conjunction with the Department of Health and Human Services held an hour-long lecture and live videocast with two seasoned autism researchers. The talk series was titled “Advances in Treatment Research” and addressed the current state of treatment research in autism including promising new areas and the barriers to getting to effective treatments faster.
Susan Swedo, M.D., a board-certified pediatrician and the Chief of the Pediatrics & Developmental Neuropsychiatry Branch at the National Institute of Mental Health (NIMH), spoke about empirically-supported treatment options in autism, including behavioral and medical treatments. She noted that methods of behavioral intervention have been the most studied. A recent review published in Pediatrics highlighted the positive effects demonstrated in randomized controlled trials of early intervention, including the UCLA Lovass model and the Early Start Denver model of early intervention.
For medical interventions aimed at addressing core symptoms of ASD, such as social and communication impairments, the challenge of evaluating treatments has been greater. Objectively measuring improvements in social and communication is challenging because these impairments differ widely across individuals with ASD. For example, for some the difficulty may be establishing eye contact whereas for others it might be learning how to carry on a conversation. Thus, defining what makes a treatment successful has been surprisingly elusive. For medical conditions where someone became acutely ill, a return to that individual’s former health status would be considered a success. However, autism spectrum disorders are developmental in nature, and difficulties in meeting milestones and acquiring new information about the world tend to compound. For these reasons, it is not clear what the “baseline” is or could be for each individual and that makes the definition of success less clear-cut. This is an even greater concern when considering the costs of treatment, including monetary and potential side effects. For an intervention with a high probability of unpleasant side effects, the likelihood of substantial gain in function must be greater than for an intervention with little risk of negative effects.
Secondly, there appears to be a surprisingly strong placebo effect in autism studies. For some individuals, the psychological effect of receiving “treatment”—even if it is not an active substance– is beneficial in some way. For this reason, small and uncontrolled trials of interventions can be misleading. Large, randomized, controlled trials are considered to be the gold standard method for evaluating effective treatments. Another challenge is that, given that ASD is not one condition but a group of different conditions, what will work for one person may not work for another. When individuals are studied in groups, such as in clinical trials, it might obscure the positive effects of a treatment for a small subgroup of people with ASD.
Dr. Swedo offered the historical example of secretin as a case-in-point. Secretin is a hormone that was claimed to be a successful treatment for autism in many “open label” (ie. uncontrolled) trials. The hormone was both very expensive and difficult to administer. When placebo-controlled trials were completed, it was clear that there weren’t beneficial effect of the drug, but valuable treatment time and dollars were spent on something ineffective in the interim.
Dr. Swedo collaborates with Autism Speaks’ Autism Treatment Network, a group of 17 hospitals offering a comprehensive model of medical care for children on the spectrum. The well-organized network of sites offers an excellent platform for studies of medical effectiveness where the children’s medical needs are well-attended and followed over time.
Dr. Swedo’s talk ended by discussing some new data from her research group at NIMH showing that the sleep EEG patterns of children with autism are different in a surprising way. Young children with autism in her study spend much less time in rapid eye movement (REM) sleep and much greater time in slow wave sleep instead. This is an interesting finding because REM sleep has been hypothesized as important for consolidating memories made during waking hours. Dr. Swedo’s group is currently engaged in the beginning phases of a study using a low dose of Aricept, a drug indicated for dementia associated with Alzheimer’s disease that has the side effect of increasing REM sleep. Autism Speaks is currently funding a study that is examining the relationship between REM sleep and other aspects of sleep and memory in children with ASD. We look forward to hearing the results as they emerge.
Rebecca Landa, Ph.D., CCC-SLP, is an Associate Professor of Psychiatry and Johns Hopkins School of Medicine and Director of the Center for Autism and Related Disorders and of the REACH research program at the Kennedy Krieger Institute. Dr. Landa explores the early signs and interventions for autism during the infant-toddler period.
Dr. Landa views early intervention as “an investment of a lifetime”, because it is during this early time that children set expectations and learn what they are capable of, and the dynamic of the parent-child relationship is established. Her objective in all interventions is to “thwart the spiraling effects” of developmental disorders by improving functioning as quickly as possible.
“I like to think of intervention experience as nourishment for the brain”, says Dr. Landa. New experiences help young children learn how to functionally interact with the world. As young children, the sensory and motor abilities are primary and help set up more complex cognitive and social skills. A good example is in the ‘sticky mittens’ Dr. Amy Needham uses to help young infants learn to grasp. With the special mittens, the young infants had success at a motor skill that they could not previously perform, and this provided a scaffold for building other behaviors. Dr. Landa’s interventions are influenced by the perspective that the mind develops in a manner compelled by the physical abilities and actions of the body.
Dr. Landa also described a randomized controlled behavioral intervention for 16 month old children who have autism or were at high risk for developing autism. Some of the children were randomized into an intensive parent education class to help the parents have more effective interactions with their infants. Other children were enrolled in a full experimental treatment group, involving a classroom-based gathering of one year olds and their parents twice a week. In the experimental group parents learn to observe and implement strategies for engaging their children socially, with toys, and in adaptive routines that help parents generalize to the home through weekly home visits. The children in the experimental group made substantial improvements in their gaze behavior, spending more time engaged in the sort of joint attention interactions that precede more complex social interactions. Meeting these early milestones offer the scaffold for the development of later and more complex social and communicative behaviors.
In addition to their prepared talks, both investigators answered questions from the live audience. The videocast will be archived and available for viewing in the next few days.
There is still time to celebrate Autism Awareness Month and Light It Up Blue! Join in the festivities and head to The Home Depot to purchase your very own blue light bulbs and lanterns while they are still available!
Autism Speaks and The Home Depot® have partnered to shine a light on autism during Autism Awareness Month in April. The Home Depot is selling blue Coleman LED lanterns and blue light bulbs, offering people across the country the opportunity to raise autism awareness through Autism Speaks’ Light it Up Blue initiative. A portion of each sale will go to Autism Speaks to fund research, advocacy, family services, and awareness for families struggling with this disorder.
For more information about our partnership, visit here!
Autism’s Causes: How Close Are We to Solving the Puzzle? (PBS NewsHour)
The rise in the number of reported autism cases has caused a surge in research to find the causes. Robert MacNeil speaks with four leading researchers: Dr. Gerald Fischbach of the Simons Foundation, Dr. David Amaral of the MIND Institute, Dr. Martha Herbert of Harvard University and Dr. Craig Newschaffer of Drexel University. It’s part three of the Autism Now series of reports. Read more.
Autism Guru Fights for His Reputation and Theory (The New York Times)
As people streamed into Graceview Baptist Church in Tomball, Tex., early one Saturday morning in January, two armed guards stood prominently just inside the doorway of the sanctuary. Their eyes scanned the room and returned with some frequency to a man sitting near the aisle, whom they had been hired to protect. Read more.
LEGISLATIVE NOTEBOOK: N.D. Legislature approves autism pilot program (Bismarck, N.D.)
The North Dakota Legislature has approved an autism spectrum disorder pilot program. Read more.
Fitch Middle School joins effort to promote autism awareness (Groton, Conn.)
The staff and students at Fitch Middle School are taking part in National Autism Awareness Month. Autism Speaks.org defines autism as a general term referring to a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). Read more.
KU program at the forefront of autism research movement (Kansan.com)
His light blue eyes remain fixated on the toy car in his hands as he sits quietly alone in one corner of the playroom. He gives little notice to the activity of the other children playing together a few feet away. By most accounts, the small, 3-year-old boy in the red shirt would appear to be like any other, albeit a little shy. The truth of the matter is more than what can be seen at first glance. Read more.
This is a guest post by Cheryl Kinsinger, a retired from the Global Marketing Talent Division of Caterpillar Inc. in Peoria, Illinois. She has two sons and has been married to her husband for 40 years. Cheryl is involved with the Crohn’s and Colitis Foundation of America (CCFA) and also volunteer for the Blood Services Division of the Red Cross.
Recently, I was happily surprised when my new state senator accepted an invitation that I made to him and his aide to come to my home for a meeting with my husband and myself. Subsequently, I invited a friend of mine from the disability advocacy community to also join us in order to have another parent present that could provide her viewpoints about the status of services within our state for persons such as her son and ours.
On the day of the meeting I knew that there would be no time for idle conversation as I knew that we could only meet for 30 minutes, and then the senator would have to leave for another event. And since I didn’t know what the outcome of our discussions on funding issues would be, I decided I could at least make this a teaching moment for my senator and his aide. As a Science Ambassador for Autism Speaks, I began our interactions by giving both gentlemen a folder with Autism Speaks materials taken from a stash I have in my basement while explaining that April is “Autism Awareness Month.” I also gave each of them an Autism Speaks puzzle pin to wear.
My friend and I then quickly went into advocacy mode: we don’t want any cuts to community services for the DD population; we want to have community residential options for people with disabilities; we want continued funding for day program providers; we want people within our state to be removed from “waiting lists” for services; and we want community providers to be paid in a timely manner. I also suggested the possibility of having small groups of parents and self-advocates testify in front of legislative appropriations committees in our state capitol in order to tell their personal stories.
As they were leaving, the senator’s aide promised to get back in touch with me, so we don’t yet know what the results of our meeting will be. But we tried to convey a message, and I was reminded of a poster I once saw in a public school classroom, “The only failure is the failure to try.”
This is a guest post by Lorri Unumb, the Senior Policy Advisor and Counsel with Autism Speaks. She teaches a class called “Autism and the Law” at George Washington University Law School and, along with her husband Dan, is the author of a newly-published book by the same name.
Today, as I sit at my kitchen table reading news accounts of the 25th state autism insurance bill being signed into law by the governor of West Virginia, I get emotional. Six years ago this summer, I sat down at this same kitchen table to write my own bill. The mother of a then-4-year-old son with autism, I was frustrated that health insurance wouldn’t pay for the treatments my son’s doctor recommended. I was tired of reading EOBs that deemed my son’s treatment “experimental.” Or “educational.” Or “non-restorative.” And mostly, I was tired of sitting in support groups with parents who, without coverage from their insurance, could not provide treatment to their children at all.
I wrote a very simple bill – one page of common sense — that said not much more than “health insurance must cover what a doctor prescribes to treat autism.” As a lawyer and law professor at the time, I could not think of any reason why health insurance should not cover our children’s health condition.
I sent my one-page bill to a couple of legislators in South Carolina and asked them to file it in the fall of 2005. The insurers came out swinging against it, as did the Chamber of Commerce and the National Federation of Independent Businesses. But I had assembled a strong group of committed South Carolina families – the “Ryan’s Law Grassroots Gang” – who had compelling stories to tell and were willing to share them.
For two years we fought and negotiated and persevered. We contacted legislators one by one and asked for 15 minutes to explain our situation. We had no lobbyist, no money, and no organizational backing. Our opponents had multiple lobbyists, deep pockets, and their own parking spaces at the state capitol.
In the end, the legislators in South Carolina did the right thing. They passed our little autism insurance bill – twice. They passed it first in the usual course of proceedings and a second time – unanimously – on the last day of the session – June 7, 2007 — after the governor of South Carolina vetoed it.
The law became known as Ryan’s Law, after my son.
In the minutes after Ryan’s Law passed, I stood in the lobby of the state house exchanging hugs, kisses, and tears with families, legislators, and staffers who had become friends in this journey. When the hugging was done, my two best autism pals and I went to a Mexican restaurant, toasted each other with margaritas, and drove home. The celebration was over, and we went back to our real lives.
At the time, I had no idea that our effort in South Carolina would attract national attention and would lead to hundreds of emails from families who wanted to pass the same law in their states. In spite of the standing ovation from our House of Representatives at the moment of final passage, notwithstanding the legislators who shook my hand and thanked me for giving them the opportunity to support the “most important bill we’ve ever passed” – I had no appreciation for the significance of the occasion.
Ryan is now 10. In the years since Ryan’s Law passed, I have had the good fortune to help families across the country advocate for similar autism insurance bills. In 2008, I was invited to join Autism Speaks and, because of their tremendous support, have been able, along with the other dedicated members of the Government Relations team, to develop the expertise needed to take on opponents of autism insurance reform in almost every state across America.
Last year I flew approximately 150,000 miles as part of Autism Speaks’ effort to assist local autism advocates in their efforts. As I reflect on my travels and the 50+ times I have testified in support of autism insurance legislation, what stands out most are the phenomenal families who have stepped out of their comfort zones and engaged in the political process. What stands out are their stories:
- The mom who compared the journeys of her two young children – one who had cancer and could get the treatment his doctor recommended, and the other who had autism and could not.
- The dad who was forced into bankruptcy and lost his home because he wanted to provide his son needed therapy.
- The teenager with autism who had overcome his deficits enough to testify beautifully before a legislative committee and thank his parents for the sacrifices they made so that he could receive therapy.
- The parents who had two children with autism but had to choose which one would get therapy because, paying out-of-pocket, they could afford only one.
I cherish memories of the families who never believed their voice could make a difference but now have seen the law change because of their efforts. And I applaud the legislators who have championed our cause only because they knew it was the right thing to do.
At a time when many criticize our government and political system, I am encouraged by the success of our grassroots activism. To me, the autism insurance reform movement is a shining example of democracy at its finest.
Although we have now reached the halfway point, we have a long way to go. Indeed, we have more than “halfway” remaining, because, even in the 25 states that have passed autism insurance laws, many families are still not able to access coverage. Insurers put up roadblocks – roadblocks that will require significant enforcement efforts and legal action to overcome. Many families are insured by self-funded companies that are not subject to their state’s autism insurance laws. (We were one of those families by the way, and, as a result, Ryan was not covered by Ryan’s Law when it passed!)
Nevertheless, today I pause for a moment to celebrate with the many families I’ve been privileged to meet and with my Autism Speaks colleagues – both my 6 Government Relations colleagues and the many others who raise funds to make our work possible and raise awareness to make our work easier. As I reflect on 25 journeys in 25 states that now require insurance to cover diagnosis and treatment of autism, I am reminded of the line I wrote to the Ryan’s Law Grassroots Gang on the day the South Carolina bill became law: “Although I obviously wish my son Ryan were not struggling with autism, I am today very grateful and honored to be part of this autism community.”
Autism Speaks is proud to sponsor an upcoming New York Academy of Sciences Meeting entitled “Autism Spectrum Disorders: From Genes to Targets to Treatments.” Speakers will focus on emerging areas of research that are laying the foundation for development of novel therapeutics to treat autism spectrum disorders. The meeting will be held all day at the NYAS offices in NYC on April 29. For those that cannot attend in person, the organizer will be hosting a live interactive webinar. Information about the meeting, the speakers and the agenda can be found at www.nyas.org/autism. Whether participating in person or via webinar, you need to register to ensure space and receive a link for the webinar. There is a small fee for attendance.
In addition, following the meeting, our sponsorship will allow for the creation of a podcast which summarizes the day’s talks and interviews the speakers for their impression of the day’s discussions. This will be made free of charge and provided on the NYAS website. Please stay tuned for the link to that podcast.
Intense emotional experiences are difficult for people with autism/Asperger’s. This is very true when the emotional experience involves other people and is not related directly to the needs or desires of the person with autism/Asperger’s. In this episode, Max is unable to relate to the feelings Sarah is experiencing when Amber is in the hospital. Indeed, the disability in being able to connect with other people and to develop an understanding of how someone else might be feeling is difficult and at times even completely alienating. A patient of mine (and an avid “Star Trek” fan) once told me that “having autism/Asperger’s is like being a Vulcan living among Klingons.”
For those of us who are “neurotypical,” we generally get a feeling of connectedness, satisfaction, and comfort when sharing in intensely emotional situations – especially those involving grief and/or death. For people with autism/Asperger’s, they just don’t get those same positive feelings that reinforce the interaction. In fact, a person with autism/Asperger’s will usually find encounters with others who are sharing feelings and comforting one another to be confusing and even frightening. The whole process simply makes little sense to them, and there is certainly nothing that is pleasant or reinforcing about the situation. Trying to get a person with autism/Asperger’s to understand and empathize is to reach the very core of their disability: social and emotional connectedness is the very thing that they are unable to do, or at least not able to do very well. Teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).
That being said, there are ways that people with autism/Asperger’s can learn to at least approximate feelings of empathy and compassion. With social stories and direct interventions in specific social situations, as Adam attempts to do with Max in this episode, people with autism/Asperger’s can at least “learn the rules” for how someone “should” act in an intensely emotional situation. When this goes well – when they get the rules correctly – they can feel a great deal of satisfaction with themselves for “getting it right.” As much as they don’t understand why people feel a certain feeling, they do often care if people respond to them in an odd or hostile way. When the important others get frustrated, disappointed or even angry with the person with autism/Asperger’s because they are not empathetic or “understanding” someone else’s point of view, it changes how that important other would generally interact with the person with autism/Asperger’s – and that’s confusing and scary.
When Frankie was very young, we began to intervene and attempt to teach the appropriate response to him when he was in a situation where he should clearly be expressing some empathy but “just didn’t get it.” This meant that we had to be vigilant about monitoring his interactions with others. It also meant we had to be ready to step in whenever there was a situation that provided a teaching moment. For many years, Frankie would not follow through independently on any of our “examples.” Eventually, he began to respond to situations in which he should show some empathy but in a very scripted way. Nonetheless, we would reinforce with praise and attention. As time has passed, Frankie has continued to respond in an almost appropriate way to situations where he should show empathy but he is clearly not directly impacted.
Like everything else with autism/Asperger’s, the key has been the intensity and persistence of the teaching. At this point, Frankie may even feel some semblance of empathy, but I know that he will never receive as much from these interactions as I do. I am grateful that at least at this point he, like Max, can feel good about himself and experience others feeling good about him as he struggles to connect socially in a world that often makes little sense to him.
Written by Roy Q. Sanders, M.D.
Visit our Topic of the Week, ‘How do you manage meltdowns?‘ to hear from the community.
Missing Oklahoma autistic boy’s body found in pond (Cushing, Okla.)
The body of a missing 4-year-old autistic child was found Tuesday afternoon in a duck pond a short distance from his home. Read more.
Movie Tells Story of Mother and Her Autistic Daughter (AOL)
Janet Grillo’s new movie is a coming-of-age story about a single mother and her autistic teenager daughter when they find themselves as a crossroads. Read more.
Asperger’s syndrome’s link to autism often baffles parents (The Beacon-News)
The main character in “Rain Man” who did not have direct eye contact, was monotone and who spoke unemotionally was a good example of someone with a syndrome that a parent may see in a child but cannot quite identify. Read more.
Autism’s Causes: How Close Are We to Solving the Puzzle? (PBS NewsHour)
As we’ve reported, autism now affects one American child in a 110. Last month, a committee convened by public health officials in Washington called it a national health emergency. The dramatic rise in official figures over the last decade has generated a surge of scientific research to find what is causing autism. Read more.
Emma June fights autism with Emmbassadors (Norcross, Ga.)
With the support of her family, Emma June Vail, 7, has made tremendous progress since she was diagnosed with autism at the age of 2. Read more.
In honor of Autism Awareness Month the students at Westbrook Elementary School in Bethesda, Maryland staged their own Westbrook Walks for Autism on Friday morning, April 15th. Principal Rebecca Jones and counselor Randi Vogel worked with Autism Speaks chapter volunteer Julie Reiley to educate and inspire the elementary school children to understand autism and to think a little bit differently about children with differences. Building on our Autism Speaks National Capital Area “Celebrating Differences” program, the teachers and students worked together to encourage empathy. In addition, the students raised $2,000 for Autism Speaks. “The walk route was lined with blue puzzle pieces cut out by a group of fourth graders,” Julie reported. “The school turned this into a real teaching moment, with announcements during the week and special lessons in class. They were amazing, and worked so hard on this.”