Archive
Transcript for “My Child Has Autism: How Do I Get Insurance?” Webchat
On Monday February 27th the Government Relations team hosted their first webchat, “My Child Has Autism: How Do I Get Insurance?” The webchat was hosted by Lorri Unumb, Esq., Vice President for State Government Affairs.
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The Happy Hannah Dance
This is a guest post by Teresa Foden, Assistant Editor of the IAN Project at Kennedy Krieger Institute.
Sometimes you look at a rescue dog and wonder why he was dropped off at the shelter. This was not the case for Bailey. He was a mess. Transported north more than 500 miles in hopes that someone at a dog-rescue event in Maryland might be fool enough to adopt him, he barked, he yelped, he yanked the leash…and this turned out to be Bailey on his best behavior. In line to be euthanized at an animal shelter down South, Bailey, a Catahoula leopard dog who flunked his tracking training, had danced when the staff delivered his food. It was described as a four-step sort of canter dance, really something you had to see to believe. It saved his life. But now it looked like he had “flunked” adoption, too, his antics keeping potential adoptees at bay (oh, I forgot to mention – he bayed, too). As volunteers for the rescue organization, we agreed to take Bailey home, temporarily, until another volunteer could retrieve him. Hopefully, it would be soon.
But one of our twin daughters, Hannah, found in Bailey her four-legged soul mate. Hannah had always been a little different from other children, but most people, well, adults mostly, found her endless monologues about dogs – their behavioral psychology, their strong loyalties, even their genetics – somewhat engaging and endearing. And when that didn’t work, she had this hopping sort of dance she couldn’t contain when she was happy. We called it the “Happy Hannah Dance.” But that all changed in middle school, when teachers lost patience for her idiosyncrasies and she became the brunt of teasing from her disdainful classmates. At 12, she was diagnosed with Asperger’s. Rather than giving her comfort that there was a name that explained her difficulties, that there were other people who saw the world through a similar lens, the official confirmation that she didn’t “fit in” was devastating for her. The Happy Hannah Dance was over.
In the following months and years, Bailey grew to be a central part of our family. When Hannah says, “Sit,” (sometimes) he sits. When Hannah says, “Lie down,” (sometimes) he lies down. When Hannah says, “I love you, Bailey,” he crawls into her lap on the floor and they seem to become one. During Bailey’s time with us, we have watched Hannah grow to trust not only Bailey, but herself. She and Bailey have been engaged in a metaphorical dance. Like many families, we have seen a relationship with an animal contribute to the emotional healing of someone with a disability. It’s hard to put into words, and we are left saying inadequate things like, “Those two, they saved each other.” Like others with similar experiences, we wonder if there is any possibility that what we see is real enough to be actually measured, scientifically tested in a research situation, and someday delivered to children. Is there a way to harness the bond that seems to arise naturally between many children and animals to treat something we don’t fully understand, something like autism?
Read IAN’s Dogs, Horses, and ASD: What Are Animal-Assisted Therapies? to find out more about the state of the research into animal-assisted therapies.
Learn about the Interactive Autism Network and how you can participate in autism research.
RoboTherapy
This post is by Autism Speaks’ staffer, Leanne Chukoskie, Ph.D., Asst. Director for Science Communication and Special Projects.
Imagine having your child’s favorite therapist available to you at any time you need. With her uncanny way of drawing out your child, together they practice speech, social interactions and some physical gross and fine motor control drills to improve his coordination skills. Now imagine that all this doesn’t cost millions and you don’t even need to build on to your house for the therapist’s new abode. All she needs is a dose of 110V every few days to keep going.
Such fantastic scenarios aren’t necessary the realm of science fiction any longer. Social robots are making appearances in classrooms and even serving as teacher’s aides. An article in this week’s New York Times makes the case for the unique advantages that these machines bring to the learning environment. For example, RUBI, a robot developed at UCSD, has been deployed in preschools where it has been teaching children Finnish words. RUBI modifies her interactions on the basis of the children’s approach and retreat behaviors as well as a real-time analysis of children’s facial expressions. Is this child looking frustrated or engaged and content? Using this interactive technology, RUBI and robots like her can individualize interactions to optimize the engagement with each child.
It is precisely this ability to optimize that makes robotics so useful for working with individuals with autism. Katharina Boser, Ph.D. the co-chair of Autism Speaks’ Interactive Technology for Autism Initiative (ITA) underscores the utility of programmed real-time interactions for autism. People are unpredictable. For an individual with autism, this aspect of behavior can make interactions with people less desirable than interactions with a robot that matches expectations frequently. With the phenomenal advances in computer technology, a robotic social partner can work on lags in, for example, gestural communication by keeping to a very predictable set of gestures, while adding a bit more variety with speech and intonation if the learner is ready. Other ITA research underscores the point that the social partner does not need to be human-like. Researchers noticed that some young children with autism really engaged with Crush, the sea turtle made famous in Finding Nemo. and have built a therapeutic strategy around this character.
In addition to the robots, other sorts of technology are offering therapy support for autism. By integrating eye-tracking into a game interface, Felicia Hurewitz, Ph.D. (Drexel University) has developed an environment for children that requires gaze interaction with the characters to reveal clues to advance in the game. Nilanjan Sarkar, Ph.D. (Vanderbilt University) is using feedback from an individual’s autonomic responses (such as heart rate, sweating) to find the right level of difficulty for a game—not too frustrating and not too easy. The computer interface and simulated human interactions are put to work in service of practicing social skills in a safe environment from SIMmersion, a technology company in Maryland. The ability to analyze, review and evaluate interactions is a great strength of this technology.
These great new tools will undoubtedly change the landscape of autism therapy, but they will never replace a human therapist. Our models of the behaviors being simulated in silico are human. We also need humans to serve as final arbiters of the therapy—did it really work? Are the data being collected valid in other settings? After all, the point of this training is to interact with other people. As of this writing, we still need humans for that!
In Their Own Words – The Rescue of My Son
This “In Their Own Words” essay was written by Evelyn Halka, who has a son with autism.
Jacob was born into our family four and a half years ago. He was a beautiful baby, big blue eyes, beautiful face, sweet little fingers and toes. Jake was also an easy baby to nurse who responded well by gaining weight on schedule. He was easy to amuse, he loved his musical toys, he loved the TV, he loved to watch the fan, and he loved the baby swing. We proudly marked the calendar with all of his development and accomplishments. We felt Jake was right on track; he rolled over, sat up, crawled, stood, walked right on schedule. He babbled, waved, and clapped and would say mama and dada.
Slowly like a season, things began to change. There are so many common explanations. Boys develop slower than girls, he had his big sister talking for him, and sometimes it takes longer for the second child. I was not worried at first, not until other skills started to slip away. I hadn’t seen him wave bye-bye as much, the clapping? Where had that gone? It was sneaky, it wasn’t a date you could put your finger on, but the sounds slowly started disappearing until there was nothing left. He was focused on objects; he played for hours with colorful toys in particular. Jake really was becoming less and less interested in us. I felt like I just became a way for Jake to get what he wanted. He would pull on me and my husband and bring us to the area of what he wanted. He started to have trouble sleeping; he would wake up crying often throughout the night and then be up at 3 or 4 a.m. for the day. Jake would no longer tolerate being restrained in any way, no high chair, no stroller, and no shopping carts. Jake started to do unsafe things, jumping off of anything he could, climbing and jumping. If he became upset he would bang his head against the highchair. He started to be very selective about what he would eat eliminating almost everything until we were down to about four foods. We would call him and he would not look at us. We could not get him dressed, bathed or teeth brushed without a fight, he could not be directed into any activity. The sounds were gone, the sleeping was gone, the waving, the clapping, pretty much all of the things that Jake was, were disappearing. Finally, Jake was gone too.
I called early intervention at the advice of my sister. After meeting with early intervention, an evaluation determined that Jake was delayed in all areas, and was a candidate to be evaluated by the Autism CATCH team in Chester County, Penn. Jacob was eligible for early intervention and received special instruction, occupational therapy, and speech in our home until he reached age three. He was evaluated by the CATCH Team and was diagnosed with autism spectrum disorder. It was recommended and approved that he attend the TOT preschool class provided by the ARC of Chester County.
Slowly the special instruction we received began to change my family’s life. My everyday battles were meet head-on with interest, respect, empathy and experience. My husband and I were willing participants in my son’s therapy and our son’s teacher truly become our teacher, and we learned to get to Jake with her help. A strong focus on picture exchange communication lead the lessons and slowly with helpful modification made by our instructor, Jacob began to communicate his wants to us. Slowly his frustrations began to become less. Through pictures, sequences and stories my son began to participate in his life, he finally found the words he needed. At this time we also began to receive wraparound services, and behavioral support in our home. The combination of the therapies began to fall into place. This was the beginning of his breakthrough.
Jake’s participation in the TOT program was a pivotal turning point in his story. Once Jake began the TOT program he was again becoming the son I once knew. He received OT, speech and special instruction in concentrated, individualized form in this classroom six hours per week. He absolutely blossomed and rose to the challenges he had in his life with this help. The program attacked problems and everyday battles, leaving us with the sense that we could lead a fulfilling life with my child and sanity intact. Going out into the community in various ways gave Jake so many skills. He is able to be examined by a doctor, a dentist, get a haircut, play at a playground, eat at a restaurant, shop in a store, and go to the library! I would never have imagined that we would ever enjoy any of these activities with our son. I feel like we were blessed to have Jacob in this program, and that he would not be where he is today without it. Jacob’s progress is remarkable, and been achieved because of this amazing program and the staff that provides it. I can not stress enough how instrumental it has been in my sons recovery.
Jacob is now four and a half and speaks in complete sentences. He attends a developmentally delayed class room and is doing very well. He will brush his teeth and sit at the table and even clean up his plate and his toys. Jacob sleeps through the night and now calls me “mommy,” my husband “daddy,” and his sister and dog by name. He is a pleasure to be around and I am grateful for all the amazing people who have blessed our lives and helped us along the way to get where we are.
Every child who is slipping away unto himself should have the chance that Jacob had; I hope that these services can be maintained and expanded to meet the demands of this epidemic. I am forever grateful for the RESCUE of my son, Jacob William Halka.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
How Becoming a Therapist Changed My Life
This is a guest post by Emily Mandel. Emily is a student at Brandeis University who is training in ABA therapy.
This summer I am interning at a center called Greenwich Education and Prep in Cos Cob, Connecticut, learning to be a therapist for children with autism using Applied Behavior Analysis (ABA) under the supervision of Dr. Mindy Rothstein and her colleagues. Initially, ABA was what I expected it to be: a therapy involving reinforcement of positive solicited behaviors. “Alex, look at me… Alex… Alex, what do you have to say? Say it to my face. Very good! You earn a point toward winning your candy.” However, until I began this training, I had not realized how multi-faceted and complicated ABA is. I had assumed it was the same method of therapy for every child, and that if it did not work it was not the right therapy for the child. What I’ve been observing, however, is quite contrary to my expectations.
Each child has a unique program designed to address the specific preferences, strengths, and areas of challenge. For example, if a child has trouble with eye contact and following directions, the instructor will reinforce eye contact and direction-following with prizes the student can earn after obtaining a certain number of “points.” In addition, the instructor prepares various activities to address each of the areas of difficulty, and monitors the progress made in each activity. For example, that same child with difficulty making eye contact and following directions is given a task like a puzzle and prompted to make eye contact each time a direction is given regarding the puzzle.
Over my summer so far, I’ve seen such changes in the children. I am pleased to see how far each child has progressed using ABA intervention techniques.. Most times forms of therapy– including ABA –benefit from the accompaniment of other forms of therapy. However, I’ve come to believe that ABA is fundamental; the ABA program targets each specific area of challenge for the child. I cannot wait to see how the children I am working with progress over the course of the rest of the summer, and how they will continue to progress throughout their lives.
I’ve made the decision to go through the certification process for Applied Behavior Analysis after I earn my Bachelor’s Degree in Psychology from Brandeis University. Greenwich Education and Prep has truly shown me the cognitive leaps and bounds children with autism can make. I hope to one day be able to change the lives of these children and their families through this fundamental method of therapy. I’ve seen what ABA can achieve, and I know that this is what I want to do with my life.
In Their Own Words – Great Strides
My son, Christopher Fitzmaurice, was diagnosed in 1988 at UCLA by one of the foremost authorities in the field in autism, Dr. BJ Freeman. We then had two confirming diagnoses. We got Chris all of the services that were provided over the years and on our own, paid for additional speech therapy (five days per week) and much more. As we moved throughout Chris’s life, I always kept in touch with Dr. Freeman and used her as a “resource” at different times so we knew what to do next.
Over the years, a boy who didn’t even speak intelligibly at 11 (he had been kept back twice to be “mainstreamed”) continued to improve at light speed. By the time he was 17, I flew back to California with him to see Dr. Freeman (who was still at UCLA) and she was “amazed” to see how well he was doing. Over the next two years he shocked everyone and they “raised’ him one grade. At 19, he was accepted to UNC Charlotte and graduated in four years with close to a 3.0 GPA in Sports Medicine. He did so well in fact that he was accepted for his Master’s Degree in Sports Medicine at UNC-C, which has amazed everyone who knew him.
At age 24, we just flew out again to see Dr. Freeman and she was absolutely “blown away.” Tears all the way around. The improvement since she saw him at 17 was “ten-fold.” But what she said, I feel, is really important for young parents today whose child was just diagnosed.
“Michael, a ‘number’ of the kids that were diagnosed back in the 80’s with autism are doing very well today. Working, some going to college, some in graduate school like Chris.”
She further said that some kids were so good on the computer, for instance, that companies actually were looking for adults with special skills.
I remember we didn’t have much hope back when Chris was diagnosed in the late 80’s. Yet here’s one of the foremost authorities on the subject of autism who says many years later, that she has “seen with her own eyes” great strides by children with autism.
Young parents need to know this.
This “In Their Own Words” essay is written by Michael Fitzmaurice of Charlotte, N.C.
If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
5|25: Celebrating Five Years of Autism Science Day 22: Combined Therapies Hold Promise for More Effective Treatments
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 22nd item, Combined Therapies Hold Promise for More Effective Treatments, is from Autism Speaks’ Top 10 Autism Research Events of 2009..
Just over three years ago the FDA’s landmark approval of risperidone for the treatment of ASD represented a significant breakthrough for the autism community. Since then other large-scale autism studies have sought FDA approval for drugs that target core or associated symptoms for autism, but unfortunately few of these trials have proven successful. In 2009, taking a cue from other disorders such as ADHD where a combined effect of both medication and behavioral therapies has proven fruitful, researchers published the first successful combined randomized controlled trial for ASD. The paper in the Journal of the American Academy of Child and Adolescent Psychiatry demonstrated that combined pharmacological and behavioral treatments was more effective than pharmacological treatment alone for reducing challenging behaviors.
Risperidone is approved for reducing aggression and irritability in children and adolescents with autism. However, its use still presents a number of challenges to clinicians. Like other atypical anti-psychotics it can have adverse side effects including weight gain, potentially leading to increased risk for obesity, and GI symptoms such as diarrhea and constipation, which can already be problematic for children with ASD. Clinicians must therefore balance the benefit of treating the problem behaviors with the potential for creating new health challenges for the child. On the other hand, behavioral therapies have been shown to be one of the most reliably effective treatments for improving problem behaviors with limited side effects. Combination therapies create a synergistic therapeutic environment in which medication allows a child to get more from behavioral therapies and, at the same time, the benefits of behavioral therapy may mean lower doses of medication are required.
A new multi-site study by the Research Units on Pediatric Psychopharmacology Autism Network, the same group that conducted the pivotal studies leading to the approval of risperidone, investigated whether combining risperidone treatments with a simultaneous behavioral intervention would be more effective than medication alone. Their 24-week study of 124 children ages 4-13, compared a treatment regime of risperidone alone with a combined treatment regimen of risperidone and a parent training program that followed the principles of applied behavioral analysis. While both the combined and medication-only treatments reduced the severity of non-compliant behaviors, the combined therapy resulted in a significantly greater reduction while using lower doses of risperidone. The combined therapy was also better at reducing other challenging behaviors, such as irritability and hyperactivity.
This study provides hope for a wider range of available treatments and greater flexibility for clinicians who should be encouraged to use combined approaches in cases where medications or behavioral interventions are not effective on their own. Confirming the effectiveness of coordinated treatments that take full advantage of the benefits of both pharmaceutical and behavioral approaches also demonstrates the continued need to support research establishing the most effective treatments in all realms. Finally, the vast majority of clinical trials conducted to date have only addressed how an individual treatment compares to a placebo. Very few studies have been conducted that make head-to-head comparisons of two or more treatments as was done here, so the success of this trial will also serve to highlight the utility of “comparative effectiveness trials” for determining the best treatments for ASD.
Did you know?: Autism Speaks’ funded Interactive Autism Network (IAN) is a web-based family registry and social network that brings together thousands of families with autism research and provides a forum for families to report information about their experiences. In a recent study on over 5000 children in IAN, 35% of parents reported that their children were taking at least one psychotropic medicine and the use of these drugs increased with age. The incidence of a comorbid condition such as seizures, ADHD or anxiety increased the likelihood of medication use. The IAN authors also reported on correlations between insurance access and use of multiple medications, noting that those children using public insurance plans (such as Medicaid) tended to be on more medications, possibly due to an inability to get coverage for behavioral therapies.









