Category: Autism

On Oct. 25, while most parents of young children were absorbed with preparing Halloween costumes, and estimating how much candy to purchase for trick-or-treaters, the Lancet Medical Journal published the results of a groundbreaking study by researchers at University of Manchester, King’s College London and Newcastle University. The “Preschool Autism Communication Trial” (PACT) which was conducted over six years and included 152 families of children with severe autism, found that what some media outlets have dubbed “super parenting,” helps reduce symptoms of autism in the long-term.  The great news? Anyone can be a “super-parent”, with the right training. Parents who participated in the study watched videos of themselves interacting with their autistic children while communication experts provided coaching on how they could expand communication with their children, some of whom were non-verbal.

According to an article in the Guardian, “The families visited a clinic twice a week for six months, where parents were videoed with their children and a box of toys. Autistic children might not interact with their parents at all, but when eventually a child did offer a toy or made a noise that could be interpreted as a request, the incident was rerun on video and the parent encouraged to respond. If the child offered a toy, the parent reciprocated. If the child said a word, the parent repeated it and added something. The practice was repeated at home every day. The therapy continued with the parents for the next six months with less intensity. “

The researchers observed improvement after the first year of therapy, but the biggest gains were assessed when the children were evaluated six years later.

“At the start of the trial, 50 percent of those in the control group who did not get the therapy and 55 percent of those who did were assessed as severely autistic. The children in the intervention group, though, got better. The proportion assessed as severe in the control group was 63% by the end of six years, compared with 46% in the intervention group,” reported the Guardian.

While the study is heartening for parents, therapists and educators, some have objected to the term “super-parenting” and the implication that those parents, who don’t choose to engage in the practices now being recommended by researchers, are worsening their children’s symptoms.

“To suggest that we “autism parents” need to go above and beyond assumes that we don’t already do that on a daily basis and feels a bit of a kick in the teeth, when really, we could alldo with some parenting help to do the best for our children,” writes a Huffington Post contributor, and author of a blog called “It’s a Tink Thing.”

Yet, speech and language therapist, Dr. Catherine Aldred, a member of the PACT research team, denies that PACT enthusiasts are blaming parents and trying to induce guilt. In an interview with the BBC, Aldred says, “We’re taking the parent’s interaction with the child and taking it to a ‘super’ level, these children need more than ‘good enough’, they need something exceptional,” she said.

Study researchers stressed that PACT is not a cure for autism. Nevertheless, the findings are a positive step forward.

 

Experts agree—when diagnosed with a developmental disability such as autism, early intervention is crucial. Yet, the same experts don’t always agree on which interventions are most effective.  With some professionals favoring behavioral approaches such as Applied Behavior Analysis (ABA), Pivotal Response Training (PRT) and Verbal Behavioral Analysis (VBA), others believing in developmental models such as P.L.A.Y. PROJECT, SCERTS and DIR (Developmental, Individualized, Relationship-based model) Floortime, and still others recommending a combination of interventions, parents have their work cut out for them. It can be overwhelming to decide what therapies will best meet your child’s needs.

In this week’s blog post, we learn about the DIR Floortime approach and speak with Sima Gerber, Ph.D., CCC-SLP, a trained DIR Floortime practitioner, speech/language therapist and professor of of Speech-Language Pathology in the Department of Linguistics and Communication Disorders of Queens College, City University of New York. Gerber specializes in working with children on the autism spectrum and has been using the DIR Floortime model in her therapeutic work with children for the past 25 years. She has worked as a speech-language pathologist for 40 years.

E.D.: What is the history of DIR Floortime?

S.G.: The DIR Floortime model was conceived by the late Stanley Greenspan, a child psychiatrist and Dr. Serena Wieder, a child psychologist.  In the 1970s Dr. Greenspan was working on the Clinical Infant Development Program, an NIMH clinical research study research study and he asked Serena to join him in 1978. In those days, autism was [at least thought to be] relatively rare.

Dr. Greenspan thought the usual ways of describing development were not holistic enough. He wanted a model that brought together all aspects of a child’s biology and environment. In DIR you’re looking at where a child is in terms of her social and emotional development, regulation, cognitive, motor and communication skills.

Can you summarize DIR Floor-time?

DIR is a paradigm for describing a child’s developmental status. Floortime is a way of interacting with a child that facilitates development. DIR has nine functional emotional developmental levels, each of which is a capsule of what’s happening in the child’s development. While the levels are chronological, since this paradigm is used to describe children with developmental challenges, a child’s level could vary significantly from the chronological developmental stages of typically developing children.

Please provide a general idea of how Floortime works.

During Floor-time [preferably during play], the adult interacts with the child, following his lead. It doesn’t have to look like typical play. The adult tries to woo the child into a reciprocal, engaged interaction and to gradually move the child from the developmental stage where he’s at, to the next stage. For example, when I work on language using a developmental approach I start where the child is. If he’s 4 and just making sounds, I don’t try to teach him to speak like typically developing four-year-olds speak. I join in his sound making and see if we can expand on it.

If a child is rolling a car back and forth but not really interacting with his parent, the parent can get down on the child’s level and join in his delight about rolling the car.  The parent might get a car herself and try to bump it into the child’s car so he notices her.  She might bring a little ramp and then try to catch the child’s car or say, “Wowee look at that car go!”

[The parent can] play a little game with the child; perhaps playfully try to take the car away. Even if the child becomes upset that’s still progress since that’s an interaction that‘s interpersonal. Of course, don’t overdo it or the kid will get too frustrated.

The point is: When the child is doing something repetitive like rolling the car back and forth, don’t try to stop him from doing that. Instead, join him. Sometimes when I’m working with a child, I might have a more physical option such as a trampoline available. If he doesn’t go to the trampoline on his own, I might jump it or say some words that remind him of the chase game. “I’m going to get you …” I might put a stuffed animal on the trampoline and make the stuffed animal jump up and down. It’s all about what the child is doing.

How much time does a parent need to dedicate to DIR Floortime?

As many hours a day as possible, but it doesn’t only have to be during playtime. Let’s say it’s bath-time. Pay attention to what the child is doing.  If she’s obsessively popping bubbles, you pop bubbles too. Try to make a game of it.

Which children can benefit from DIR Floortime?

Any child can benefit from DIR Floortime. It’s a way of interacting with children that promotes healthy interpersonal development. It’s become associated with autism but its benefits are not necessarily limited to kids on the spectrum.

Can you describe a success story?

I’ve worked with 15-year-old Matthew for 10 years and I attribute his success to his mother. She was either a Floortime “natural” or just learned it very quickly. It was easy for her to get the principles and get “in the Floortime zone.”

Matthew did a lot of scripting.  He would recite lines from movies and TV programs. My suggestion to his mother was to join the script. So, if Matthew said a line from “Finding Nemo,” his mother would say,  “Finding Nemo?” So he would keep scripting. She would say, “Really?” “He did?”  Or she might take a line from the script and say it back to him. It’s very hard to listen to a kid who goes on and on talking about the same thing. Many parents would say, “No more talking about Nemo.”

But when you join kids who script, 99 percent of the time, they’ll look at you. They’re saying something meaningful to them and if you join them there’s a better chance they’ll interact. Matt’s mother did this with every interaction. And she was very laid back. If he was doing something inappropriate in my waiting room, she didn’t keep saying ‘Stop it Matt, “Come back here, Matt.” Instead, she waited and let things happen. That way, he wasn’t always being told he was doing something wrong.  She was also very tuned into his regulatory problems. By that, I mean she understood his bodily needs. For example, she knew he was often agitated and had trouble focusing during therapy. So, before his therapy session, she would do physical activities with him to help center his body. Now he’s a skateboarder. Matt’s mother had energy for everything he wanted to do. She took him to the skateboard park as frequently as possible, despite having two other children, one with special needs.

Where is Matthew now?

He just graduated from a special middle school for children with language and communication challenges. He’s very social, interested in having girlfriend. He plays drums. He’s interested in sex, drugs and rock and roll! He has a good sense of humor and is very appealing. I don’t think you would notice he had autism on first glance, but after a while you might see that he is different. He’d want to talk about skateboarding. And he has poor judgment, and no theory of mind. When he grows up, he won’t be able to live on his own. He’ll probably live in supervised setting but I think he will be able to have a job. He reads and writes. He’s happy.

What would you add?

Stan [Greenspan] and Serena started talking about this model a long time ago. Nowadays, these principals are getting a lot more attention from neuroscientists. Finally the science is catching up.

For more information and free resources on DIR Floortime and other interventions for developmental disabilities, visit Profectum.org and KidsAttune.org

As National Autism Awareness Month 2016 comes to a close, we’ve taken a look back at some of the best books on topics related to autism, published during the past year. These fascinating and inspiring reads, for adults, teens and children should keep you busy for many months to come.

For Adults:

“Neurotribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman

In this exhaustive and compassionately written history of autism, Silberman calls into question many of our assumptions about autism and the modern “autism epidemic.” “Neurotribes” takes the reader on a journey that begins at the infancy of autism research, through early treatments and theories about the condition’s etiology, to the work of psychiatrists, Leo Kanner and Hans Asperger, to modern-day battles within the autism community and the current movement to embrace neuro-diversity.  Don’t miss the foreword by the late Oliver Sachs.

“Switched On: A Memoir of Brain Change and Emotional Awakening” by John Elder Robison

This new memoir by a man with autism tells the true story of how engineer, John Elder Robison’s life changed after his participation in a 6-month brain therapy experiment with transcranial magnetic stimulation. TMS, a noninvasive technique currently approved for patients with medication-resistant depression, uses electric currents to activate and deactivate particular circuits in the brain. The treatments Robison received, targeted his frontal lobe, enabling him to experience empathy for the first time in his life. Robison’s revelations, the science informing TMS and what it teaches about the plasticity of the brain is nothing less than mind-blowing.

“Uniquely Human: A Different Way of Seeing Autism” by Barry Prizant, Ph.D.

As its title suggests, Prizant’s important new book moves toward a greater acceptance, understanding and appreciation of the differences between all human beings. Instead of approaching autism as a disease to be cured, with behaviors that need to be controlled or eliminated, Prizant stresses the importance of understanding the messages behind these behaviors, supporting the individual and his feelings, and appreciating the unique gifts he can share with the world.

“Autism Adulthood: Strategies and Insights for a Fulfilling Life” by Susan Senator

In recent years, there has been growing recognition of the lack of resources available for individuals with autism when they reach adulthood. In her fourth book, Senator, the mother of an adult son with autism, has assembled 30 interviews with autistic adults, their parents, caregivers, professionals and researchers. Each interview sheds light on the unique challenges faced by each family as their child with autism approaches adulthood and must contend with issues such as employment and independent living. The book includes Senator’s own insights and experiences, tips for planning for the future and information on available resources.

For Teens:

“Same But Different: Teen Life on the Autism Express” by Holly Robinson Peete and Ryan Elizabeth Peete and R.J. Peete

What’s life like when you’re a teen boy with autism? How about when you’re a teen girl with a twin brother who has autism? In this memoir-style novel, which alternates between the stories of Charlie, who has autism and Callie, his typically developing twin, we get both perspectives. Based on the real-life experiences of its teen authors, this book is honest, humorous and poignant.

“Parties, Dorms and Social Norms: A Crash Course in Safe Living for Young Adults on the Autism Spectrum” by Lisa Meeks and Tracy Roye Masterson

Making the transition from adolescence to adult life is challenging for all of us. But when you have autism, the journey can be that much more fraught. Covering topics from dating and sex, to drugs, alcohol and social media, this handbook is a lifesaver for young people on the autism spectrum.

“Sisterhood of the Spectrum: An Asperger’s Chick Guide To Life,” by Jennifer Cook O’Toole

Especially for teenage girls on the spectrum, this tell-all advice book, written by a young woman with Asperger Syndrome, has all sorts of helpful information on dating, friendship, bullying and body image. Included are illustrations and quotes from well-known women with ASD like Temple Grandin and Haley Moss.

For Children:

“Janine” by Maryann Cocca-Leffler

The “Janine” series is all about helping children with disabilities focus on their strengths and talents while helping typically developing children to develop tolerance and appreciation for difference. With adorable illustrations and a loveable heroine who’s based on the author’s daughter, “Janine” is bound to inspire child and adult readers alike.

“All My Stripes: A Story for Children With Autism,” by Shaina Rudolph

Zane the Zebra worries that he doesn’t fit in because of his “autism stripe.” But Zane’s mother loves him just the way he is. Mama Zebra helps her son to realize that his differences only serve to make him more loveable.

Rainbow of Friendship by Joni Klein-Higger

Another storybook that celebrates difference, “Rainbow of Friendship” tells the story of a little girl who lives in a town that is completely red. When she visits Rainbow Row City, where there are all different colors, she discovers the beauty of diversity. Illustrated by Eileen Goldenberg.

“Exceptionally Good Friends: Building Relationships with Autism,” by Melissa K. Burkhardt

Winner of the Autism Society’s 2015 Dr. Temple Grandin Award for Outstanding Literary Work of the Year,  this illustrated storybook is two- books-in-one. Sharing the perspectives of a neuro-typical preschooler and her friend and classmate with autism, “Exceptionally Good Friends” gives readers a window into the world of a little boy with autism and celebrates a special friendship. The book also includes resources about autism for parents, teachers and therapists.

 

Who doesn’t love Sesame Street? Last year, the groundbreaking children’s television program gave us another reason to love it when digital Sesame Workshop introduced its first character with autism, an adorable orange Muppet named Julia. Now, just in time for National Autism Awareness Month 2016,Sesame Workshop announced, in a press release, that it has unveiled the second phase of its Emmy-nominated autism initiative, Sesame Street and Autism: See Amazing in All Children.

Phase Two will include the release of 12 new videos featuring children with autism and Muppet, Abby Cadabby, plus a new animation featuring Julia.

“The new content is part of a suite of free resources for families, teachers, providers, and caregivers available on the Sesame Street website and as an app for iOS and Android,” the press release said.

In case you missed it, Julia arrived on Sesame Street in Oct. 2015, as part of a new initiative created to address the misconceptions and stigma around autism spectrum disorders, which according to CDC estimates, affects one in 68 children in the U.S.

“The lack of understanding around the condition contributes to discrimination, verbal abuse, even physical violence,” according to Sesame Workshop’s website. “A recent study reveals that children with autism are five times more likely to be bullied than their peers—treatment no child should endure. While the differences between people with autism and their peers may seem significant, children share something far more important: unique qualities and talents that make the world an interesting place.”

In a way, it’s a no brainer that Julia should come to live on Sesame Street, a place that has embraced diversity for the past 47 years. In fact, some people are wondering why it took so long for an autistic character to appear on Sesame Street.

As it turns out, the folks at Sesame Workshop spent three years researching and consulting with experts in the autism field, to be sure that their portrayal of Julia was realistic. That’s a tall order since, as anyone familiar with autism spectrum disorder knows, autism presents differently in every person who has it. Julia, described by Sesame Workshop’s Dr. Jeanette Betancourt, in an interview with ABC News, as having a “moderate degree of autism,” flaps her arms when excited, has trouble making direct eye contact, is bothered by certain noises, and takes longer than her peers to process information. She plays “a little differently” than her pals as well. For example, while Elmo likes to use blocks to build towers and then knocks them down, Julia likes to set up her blocks in a row. While Elmo likes to play games with toy cars and trucks, Julia likes to watch the wheels of her toy vehicles spin around and around. But it’s all good. That’s the message of the Sesame Street and Autism initiative, as well as the message of “The Amazing Song,” music video, a Phase Two addition to the initiative’s website.

“We all want to laugh and we all want to play, we’re all amazing in our own way.”