Autism Intervention Archives - LittleStar ABA Therapy

“We are here for each other and for all our children living with autism” — Our final word for Autism Awareness Month

By Mary Rosswurm

I remember when my son was diagnosed in 1994 like it was yesterday. At the time, though, the prevalence rate was 1 in 10,000 births. Here we are, two decades later, and the diagnosis rate is 1 in 68. Autism has changed the face of childhood worldwide and, I guess, parenthood as well. Little did I know that we were on the front edge of an epidemic.

As I look back over the last 20 years, I can categorize my journey into seven distinct “stages of autism”:

Alarm – That came right after the diagnosis. I was in a panic. It was a crisis for our family.

Anguish – I remember feeling that my world, as I knew it, was over and that I would never feel happiness again. I wondered if I had done something to cause his autism. This was by far the worst of the stages for me. My mom really helped me through this.

Anger – Then I just was mad. Why did this happen to my beautiful little boy? What did we do to deserve this? I remember reading an article in Rolling Stone magazine and Courtney Love was talking about the drugs she did while she was pregnant. I didn’t even take Tylenol when I had a headache! This did not seem fair!

Action – This stage was about pulling myself up by my bootstraps and finding out all I could about autism and treatments. Unfortunately, there was no autism welcome wagon that was going to pull up into my driveway!

Acceptance – This crept in slowly, but I began to realize that autism was the hand that life had dealt me, and that I was going to have to make things happen for my son. It was up to me.

Advocacy – I learned that the squeaky wheel got the oil! I had to be on top of everything! Soon there were other autism parents like me – and I saw that when a lot of autism parents got together, things started to happen!

Admiration – I am truly amazed each day at what our kids with autism can do. I know that for many of them, getting up each day and facing a room full of people is so difficult, yet they do it day in and day out. I am blown away by what the parents of children with autism have done – they have moved mountains!

Right now, my moments of alarm, anguish and anger are few and far between, but they happen. If you are an autism parent and are struggling with alarm, anguish and/or anger, please reach out to somebody! You are not in this alone – we are here for each other and for all our children living with autism. It’s a journey, but thankfully, one that we are not on alone.

Mary Rosswurm is executive director of Little Star Center, Indiana’s first ABA facility.

Why I chose Applied Behavior Analysis Indiana

By Angela Vargas, M.S., BCBA

Like most other kids, I went through my list of what I wanted to be when I grew up: a lawyer (…too boring), a law and order SVU detective (…too scary), a wedding planner (…I probably wouldn’t be much good at that). This all changed when I learned that my younger cousin was diagnosed with autism. Initially, it didn’t affect me much. He lived in Colombia and my family had already moved to the United States by then. It was only a label. Then, my cousin’s family came to Wisconsin for a visit. Although he was only about 3 years old, I noticed slight differences in the way he interacted with others. “This must be the autism,” I thought.

As I got older, I heard my parents talking about the different hardships my cousin and his family faced in Colombia; limited resources and knowledge about autism being the two most prominent ones. My aunt and uncle tried to find a logical reason behind the diagnosis. Was it the Coke they gave him to drink when he was a baby? Whose side of the family did it come from? How was his birth different than that of his brother’s? All of these questions, left unanswered, only increased the familial tension. Finally, my aunt decided she would get her certificate in ABA at the University of North Texas so that she could be better informed about autism and hopefully guide my cousin’s treatment. Additionally, my cousin would make several trips to Florida to receive the needed therapy.

As it may come to no surprise, I ultimately decided that I wanted to pursue a career in the field of autism. After doing some research and talking to those in the field, I was given two recommendations: become a behavior analyst or a special education teacher. “Behavior analyst it is!” I thought, and I haven’t looked back since. Choosing to become a BCBA, while on a whim, was the best decision I have ever made. I have a profession, which I not only love, but one that constantly challenges me. Very few individuals can say that they are excited to get up and go to work every day; I am fortunate to be one of those who can. Each learner teaches me something different about life and resilience. Every milestone met, no matter how big or small, is groundbreaking. We all have a reason for pursuing a career in this field. Many of us have likely been affected by autism personally. Each and every time I work with a new learner, my cousin comes to mind. He may not have received the needed services. His family may not have been provided with the necessary support and information. He may not have had access to a service provider like LSC, something unheard of in Colombia. Luckily, I have the opportunity to be sure that his story is one never told by any of the families I work with. For this, I am eternally grateful.

Angela Vargas is a program manager at Little Star Center.

Our son found a successful path at Little Star

By Julie Kilpatrick

When my precious little Henry was diagnosed on the autism spectrum just before his third birthday, I was somewhat relieved. Henry had been receiving speech therapy since he was 18 months old. He was making some strides, but still wasn’t where he needed to be at his age. Henry also seemed to be withdrawing from his peers in preschool and, being my first child, I figured he was just shy or would grow out of it.

My husband and I didn’t even want to entertain the idea of autism, but with the thoughtful counsel of his speech language pathologist and a few visits to various pediatric specialists, we received our diagnosis. While it was devastating at first, I finally felt an odd sense of relief because I could begin narrowing in on an action plan.

I found out about Little Star Center from a brochure at The Arc of Indiana. I also met some of the center’s therapists at the Answers for Autism walk in September 2011. That following week, I called Mary Rosswurm and scheduled an appointment. Our prayers were answered when we met with Mary and toured Little Star. There were lots of happy little ones running around, jumping, verbalizing and even flapping next to their caring therapists. While I didn’t relish the thought of enrolling my precious child in a different childcare setting, I knew immediately that Little Star was the best place for Henry and the staff was more than capable of helping him to excel.

Henry thrived at Little Star, achieving milestone after milestone. His team of therapists provided the support, programming and constant documentation and communication to get Henry where he is today. My husband and I quickly felt comfortable and were respected as part of “Team Henry.”

While Henry has graduated and moved on from Little Star, he often talks about his friends and therapists at the center. We feel very fortunate to have had access to such a wonderful and well-respected facility to help both our little boy and our family thrive. Our sense of relief is ever present as we continue to celebrate each milestone, both great and small, that may not have been possible without Little Star.

Julie Kilpatrick is a mom to three children, including Henry, 5, who transitioned from Little Star Center and now attends a preschool in Carmel.

An Article You May Have Missed: For Kids With Autism, Wings to Fly

The December 3, 2012 issue of People magazine features a Heroes Among Us article which includes Wendy Ross, a pediatrician in Philadelphia. Ross developed an air-travel program at Philadelphia International Airport with clinicians and airlines that allows children with autism the opportunity to practice everything related to air travel including check-in, security screening, and boarding a flight so as to reduce challenging behaviors. Parents are finding the program a huge help in making air travel a smoother experience. According to the article, United Airlines starts rolling out the program this month nationally through Ross’s Autism Inclusion Resources (AIR), the nonprofit organization dedicated to helping children with autism prepare for air travel.

Little Star Research and Training Director, Tim Courtney said, “Research indicates that children with autism are often very anxious, much more so then their same-aged peers. Treatments to help children with autism overcome their anxieties are gaining widespread acceptance due to their effectiveness. We’ve had great success at Little Star addressing anxieties related to the dentist, loud and obnoxious hand dryers, and haircuts. The article does not include particular information about the intervention being used to address fear of flying or other issues related to travel e.g. waiting in line, loud noisy environments, etc., but I would bet it is very similar to the desensitization approach we have implemented.”

The Hoosier Association for Behavior Analysis (HABA) 2012 Conference

Little Star (LSC) staff recently attended the fourth Hoosier Association for Behavior Analysis (HABA) Conference. HABA, the state chapter of the Association for Behavior Analysis International (ABAI), brought in Dr. David Celberti, executive director for The Association for Science and Autism Treatment (ASAT) to provide the keynote address: “Science: Don’t Treat Autism Without It (that applies to everyone).”

The presentation highlighted the role that behavior analysts can play in helping consumers and other providers choose and implement interventions, as well as evaluate outcomes.

Although there are hundreds of autism interventions, most lack any scientific support; yet, such approaches prevail in many public schools and receive widespread media coverage. Science and scientific methods should serve as the foundation upon which treatments should be chosen, implemented, and evaluated.

Other topics the LSC staff enjoyed included: Dr. Wayne Fuqua’s “When Evidence Based Interventions Fall Short of the Treatment Goal: A Checklist for Trouble Shooting Treatment Failures” and Dr. Ernest Vargas’ “Language: Lingual Behavior.”

HABA “facilitates humane, ethical and effective behavioral practices in academic, research, home, school, clinic, community, and other settings.” To this end, the organization promotes the basic science upon which the behavioral technology is grounded and supports the Behavior Analyst Certification Board as the appropriate credentialing body for practitioners of applied behavior analysis in the State of Indiana.

The Artistry of Gentry Groshell

Gentry Groshell, daughter of Amy Gudal Groshell—the founder of Little Star Center, is an amazing artist. Her paintings grace the walls of Little Star’s centers in Carmel and Lafayette, Indiana as well as the Groshell home and the Duval County Public Library in Florida. The demand for her work is such that her canvases and jewelry collection are available for purchase via the website, peaceofheartjewelry.com. Through her talent, Gentry has become an inspiration to other young people with autism and their families.

The story of Gentry’s journey in painting is chronicled in an excerpt in the article, “Healing Through the Arts,” in the September 2012 issue of Autism File Magazine. The piece discusses the Rainbow Artists project which was developed through a partnership with The HEAL Foundation: HEALing Every Autistic Life, the Museum of Contemporary Art (MOCA) in Jacksonville, FL, and the Cummer Museum of Art and Gardens. The art program was initially started by mothers of children with autism: Carol Lombardo, Cynthia Walburn, and Holly Green.

As noted in the article, “Art can play an important role in the lives of many children, teens, and adults diagnosed with Autism Spectrum Disorder (ASD). It can be therapeutic, and gives the individual with autism an avenue of creativity and self-expression. The activity of art can quell many of the stimulatory behaviors caused by the disorder and be a soothing and calming exercise for the participant. Since many young children with autism have deficiencies in their gross and fine motor skills and are averse to learning new things, teachers and parents should explore the options art offers as a therapeutic tool.”

Gentry has severe autism and is non-verbal and constantly in motion. When her mother noticed that Gentry calmed down when painting, she explored the MOCA program and discovered an outlet for her daughter’s energy and self-expression.

“Family and friends have all shared in the bittersweet journey with Gentry as we’ve navigated the storms of autism and mental illness,” said Amy Groshell. “I am happy that through her art, we have a venue to celebrate her life and all she has overcome. May she continue to inspire us all. God bless Gentry and all the other children, teens and adults trapped inside their minds. May we not pity them, but see their lives as a source of inspiration and beauty.”

Errorless Learning: When the Learner is Always Right…

Little Star Center (LSC) — created by a family of a child with autism — was the first in Indiana to employ Applied Behavior Analysis (ABA) treatment, which has long been considered the most effective intervention method for children with autism. ABA features several instructional approaches for consideration when developing a learner’s personal program. One of the ABA evidence-based procedures used by the Little Star clinical team is ‘errorless learning’ or ‘errorless teaching.’ Errorless learning is a strategy to ensure independence in the learner and foster success by systematically fading out assistance. Learners (or all people, actually) , at times, become frustrated or discouraged if they make a mistake and may hesitate to try a skill again. Or, the learner learns a skill incorrectly, which then needs to be corrected. Frequently making errors or being asked to do work that is too difficult may provoke problem behavior such as tantrums, aggression or self-injury.

Errorless learning is the technique of making sure the learner provides the right answer to a question every time, reducing or eliminating mistakes. A key element of errorless teaching is the therapist prompting the answer when the learner appears uncertain; increasing the likelihood the learner makes the correct response. Prompts are extra cues or hints to help the learner know what to do in a particular situation or time (including physical assistance, pointing, demonstrating, showing a picture, writing a checklist, or asking what the learner wants). In addition to prompts, errorless learning uses positive reinforcement to assure the skill is performed again.

The process at Little Star sometimes involves flashcards with pictures or words on them or pointing to something. The learner is asked to identify the appropriate item, by matching, selecting or naming it. If the learner hesitates in responding, the therapist prompts him/her as many times as needed for the learner to understand what is required. The therapist monitors how often the learner needs prompting and how often he/she responds unaided in order to determine when to decrease prompting.

If the learner makes an error during the process of learning something new, the therapist does not make negative comments, nor provide reinforcement or reward. In these cases, the therapist withholds reinforcement and presents the instruction again providing an immediate full prompt of the correct answer or presents a new instruction.

As the learner performs the targeted skill independently, the therapist reduces prompting. Once the learner has mastered the skill, it is revisited periodically for maintenance purposes and the process begins again with a new skill.

10.24.2012 Little Star Center, 317.249.2242

Sensory Integration Therapy Effectiveness Remains Questionable

Sensory integration therapy (SIT) has been commonly used in the treatment of individuals with autism since the 1970s. The primary theory behind SIT is that some children with intellectual/developmental disabilities commonly have sensory needs (related to the five senses of sight, sound, taste, touch, and smell) that are not adequately met. The goal of this method – which includes the brushing of skin, swinging and/or wearing a weighted vest — is to improve attention, reasoning and perception and decrease disruptive or repetitive behaviors. However, because this form of therapy remains largely untested, the success rate cannot be validated and the effectiveness of SIT remains questionable.

“Parents want to provide the best and most useful treatment for their children. They mean well when they specifically request this method because it is popular” said Bruce Golde, Little Star Center Occupational Therapist. “Some 80% of occupational therapists working with children today still use sensory integration as a basis for treatment. Sensory integration proponents believe it helps a child learn and develop normally, purporting to influence behaviors, improve learning and help with motor development. However, after more than forty years in practice, sensory integration still has very few studies that include a control group, making it difficult to determine if improvement a child may realize could be due to other factors such as natural maturation. Over the past eight years, more objective analysis has found other treatment inventions to be more effective than sensory integration.”

The 2012 Research in Autism Spectrum Disorders journal features an article on a research project on this topic which reviews and analyzes 25 studies on sensory integration therapy: Sensory Integration Therapy for Autism Spectrum Disorders: A Systematic Review by Russell Lang, Mark O’Reilly, Olive Healy, Mandy Rispoli, Helena Lydon, William Streusand, Tonya Davis, Soyeon Kang, Jeff Sigafoos, Giulio Lancioni, Robert Didden, and Sanne Giesbers. Because many of these 25 studies were flawed, the reviewers determined that the evidence does not support the use of SIT as a treatment for children with autism spectrum disorders (ASD).

In addition, a recent article in the June 2012 issue of ADVANCE for Occupational Therapy Practitioners, titled “AAP Against SPD Diagnosis,” describes a new policy released by the American Academy of Pediatrics (AAP) recommending that pediatricians no longer diagnose sensory processing disorder (SPD) for children with sensory issues. This decision is based on the lack of research on SPD as a condition unique from other developmental disabilities and the limited and inconclusive research on the effectiveness of sensory integration therapy on children with autism spectrum disorder. (The AAP Policy Statement “Sensory Integration Therapies for Children with Developmental and Behavioral Disorders” appears in the June issue of Pediatrics, an official peer-reviewed journal of the American Academy of Pediatrics that serves authors and readers of the general medical profession as well as pediatricians.)

“The truth of the matter is…we simply don’t know what is going on in the brain of a child with autism,” said Golde. “We don’t know why a particular child has a preference for repeated touch. Certainly, a child may enjoy the sensory integration activity, but beyond that, the therapy doesn’t result in significant behavioral changes. Other forms of proven therapy are a better use of the child’s time. Parents should explore and discuss treatment options before making a decision.”

Mary Rosswurm, Executive Director of Little Star Center and the parent of a young adult with autism, says “Bottom line, there is a difference between enjoyment and benefit.”

Little Star Center highly recommends parents visit the Association for Science in Autism Treatment (ASAT) website as a reference for unbiased and reliable information not only on sensory integration therapy but other intervention methods they may be considering. ASAT is a not-for-profit organization established in 1998 to disseminate accurate, scientifically-sound information about autism and its treatment and combat inaccurate or unsubstantiated information.

Dear Mary, July 13, 2012

Dear Mary is a bimonthly column whereby readers may submit questions to [email protected] and receive answers related to autism. Mary Rosswurm is executive director of Little Star Center and also the mother of a son who has been diagnosed with autism. She understands…

Dear Mary,

My son’s doctor recommended ABA therapy for him. He is four years old and doesn’t like loud places, lights on or other kids. I would like a home program for him.

Jeana, Indianapolis

Hi Jeana,

The reasons you described (dislike of loud places, lights or other children) strongly suggest why your son needs a center-based program and not a home-based program. A robust center-based program offers access to other children, a variety of staff, the speech therapist, occupational therapist, outings, group activities and multiple layers of supervisors. Since your son is four, the goal is to get him prepared for kindergarten, and it will be essential that he can tolerate noise, lights and other people. Addressing these concerns require clinical expertise and closely monitored programming.

While I know that as a mom you want to make your child comfortable — and he may be more comfortable at home with one familiar person working with him each day — that is not real life. He needs to be able to be around new people, in novel situations. Let’s face it – the world is bright, loud and full of kids. As he gets older, he will become more and more isolated if we don’t begin to get him used to these things.

For example, two years ago I was terrified of the iPhone – I had my old flip phone and I didn’t want to learn about this new kind of phone. It seemed very complicated to me and I didn’t see why I needed access to my email or the Internet constantly. I really resisted it until finally my supervisor insisted that I get one. Period, end of story.

So, at first I HATED it. I dropped calls all the time and couldn’t figure out how to turn the stupid thing off while I was on a plane that was heading for take off. I couldn’t work the tiny key pad (that wasn’t even real keys) and every time I tried to hit the “M” key, I would hit the “backspace” instead. I hated it and I was miserable. BUT…the more I used it, the better I got and I learned new things about it everyday. My co-workers would gently encourage me to try new features like the GPS or face-time.

Now two years later, I can’t imagine how I lived without it. I am comfortable with it. It simply was a new skill that I needed to learn, which is exactly what these obstacles are for your son – things he needs to learn to tolerate. It will take time, he may be upset at first, but he will get comfortable and be able to be around these things that he finds annoying right now. Don’t lose sight of the big picture – where do you want him to be when he is 8, 12, 15 and 30? Not home alone, but out with people in different places.

I would encourage you to look at a center-based program for your son and stretch his comfort zone!

Mary,

Executive Director, Little Star Center

Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance

Michele Trivedi, Little Star Board member and volunteer health insurance advocate, is an active member of the autism community, volunteers with the Autism Society of Indiana (ASI), the Indiana Resource Center for Autism (IRCA,) and Autism Speaks to promote health insurance coverage for autism across the country. Michele shares her thoughts about the recent landmark federal decision on autism therapy insurance coverage:

“We are very fortunate in Indiana, that through the advocacy of parents, IRCA, ASI and the Autism Research Centre (ARC), our state legislature recognized more than a decade ago that autism is a treatable neurological condition. It also acknowledged that Applied Behavior Analysis (ABA) is a medical treatment for autism, when our Indiana Health Insurance Mandate was passed in 2000.

The recent decision by the federal government, noted in the Autism Speaks article, though not binding, will help all people with autism who do not currently have the benefit of health insurance coverage for autism by making it much more difficult for health insurance companies to claim that ABA is an “educational” program and not a medical treatment. This will help families in Employee Retirement Income Security Act (ERISA) health plans (federally regulated health plans) to advocate for autism coverage.

Little Star Center has always been at the forefront in the efforts to advocate for insurance coverage for ABA therapy and will continue to assist in efforts to ensure that all children have access to quality ABA services and quality ABA health insurance coverage. We look forward to continuing to work with organizations like ASI, IRCA, the ARC and Autism Speaks.”

Michele serves on the Health Benefits Mandate Task Force for Indiana (appointed by Governor Daniels) and was appointed in 2002 by the Commissioner of the Indiana Department of Insurance to represent the autism community on health insurance issues for the development of Bulletin 136, which mandates insurance coverage for autism spectrum disorders. She earned a Masters of Science degree in Health Services Administration from Xavier University.

She donates her time to assist fellow Hoosiers with insurance-related issues. Her daughter, Ellie, was the “test case” for the enforcement of the Indiana Autism Mandate.