Advocate for Autism Awareness All Year Long

Autism Puzzle Pieces

With the prevalence of autism spectrum disorders on the rise — the Centers for Disease and Prevention Autism and Developmental Disabilities Monitoring Network now estimates that 1 in 59 children have ASD — declaring only one month per year Autism Awareness Month seems insufficient. In 2019, we need to be aware that individuals with autism, their families, teachers and therapists are coping with the challenges associated with ASD on a daily basis.

As we near the end of April and the close of Autism Awareness Month 2019, Enabling Devices offers these recommendations to support the autism community throughout the year.

Learn about Autism
Educate yourself and others about autism — its symptoms, treatments, and diagnoses — by reading about ASD, checking out realistic depictions of people with autism on TV and in movies. Yet, keep in mind that all people with autism are different, just like the rest of us.

Appreciate Difference
Human beings have a tendency to gravitate to people, places and activities that are familiar. We may be uncomfortable and even fearful about those who seem unfamiliar. Go out of your way to meet and get to know people with autism. You’ll undoubtedly be impressed with their unique strengths and talents.

Empathize
Individuals with autism may behave differently than neurotypical people. Flapping, tantrums, and strong reactions to sensory stimuli may draw unwanted attention to families when they venture out of their homes with a child with autism. Dealing with the reactions of others in the form of staring, teasing, unkind comments or unsolicited advice, all add to the stress of caring for a child with autism. Advises the American College of Pediatricians: “Avoid being judgmental of a family dealing with these behaviors, and realize that they are not caused by a lack of appropriate parenting.”

Help out
No matter how you slice it, parenting is hard work. Parenting a child with autism is even harder. According to the ACPEDS, “Parents caring for an autistic child appreciate hands-on help. Offering to trade baby-sitting or watching their other children so they can take their child with autism to therapy are great ways to lend a hand.”

Accommodate Friends and Family
Not sure how best to accommodate friends and family members with autism? Ask! Before hosting a party of holiday event, check with guests to find out what gifts an autistic child might prefer, what she might like to eat, or what game or TV show he might enjoy. Sensitive inquiries will go a long way toward helping a guest with autism and his family members to feel more at ease.

Volunteer Your Time
Whether you volunteer for a local autism organization, support autism fundraising events or attend educational programs that promote autism awareness, you’ll be doing your part to help people with autism and their families in a variety of ways.

Donate to autism organizations
If you have the ability, make a financial contribution to a reputable autism organization. Your dollars can help to fund autism research or help nonprofits such as schools, job training or extracurricular programs that serve the autism community.

Encourage inclusion
Whether it’s in your child’s classroom, your workplace, your local theater or place of worship, advocating for inclusion goes a long way toward encouraging your community to embrace people with autism and their families.

 

People with Autism Make Valuable Contributions at Work

Two Men in Office Looking at a Computer

Statistics show that 85% of college graduates with autism spectrum disorder are unemployed. Compare those numbers to the current national unemployment rate of 4.5%, and it’s easy see why adults with autism and their advocates are deeply discouraged. Yet, the news isn’t all bad.

Though people with autism continue to experience high rates of unemployment and underemployment, employers are beginning to recognize that hiring people with autism isn’t only a moral imperative, it’s also good business. That’s why companies such as Dell Technologies, Microsoft, Freddie Mac, and Ford are developing programs to train and recruit job candidates with autism spectrum diagnoses.

Writing for Very Well Health, Lisa Jo Rudy notes, “There is an increasing need for workers with the skills, thought patterns, and work ethic that are common among people on the autism spectrum. Autistic adults are, in general, dependable, routinized, focused, detail-oriented, and passionate about their work.” In addition, writes Rudy: “Many have outstanding technical and/or math skills. And quite a few are able to find unique solutions to problems that have eluded their more conventional colleagues.”

Accounting firm Ernst and Young is just one of many large firms that has come to believe that having a neuro-diverse workforce positively impacts the company’s “bottom line.”

Meanwhile, executive director and head of Autism at Work at JP Morgan Chase, James Mahoney, told Fortune that “autistic employees achieve, on average, 48% to 140% more work than their typical colleagues, depending on the roles… They are highly focused and less distracted by social interactions.”

At Dell, people with autism can take part in a 12-week summer internship program that may lead to full-time employment. Originating at the company’s Hopkinton, Mass. headquarters, Dell recently expanded the internship program to a new site in Central Texas. According to Disability Scoop, Dell “plans to bring on roughly a dozen adults for two weeks of training at its Round Rock [Texas] headquarters. Four candidates will be selected for summer internships after the training.”

While corporations such as JP Morgan Chase have in-house programs to recruit, train and support their employees, others partner with nonprofit organizations such as Integrate Autism Employment Advisors (formerly the Asperger Syndrome Training & Employment Partnership) to help them “identify, recruit and retain qualified professionals on the autism spectrum.”

Integrate provides employers with resources such as “An Employer’s Guide to Managing Professionals on the Autism Spectrum,” by Integrate founder Marcia Scheiner. At the same time, Integrate provides job coaching and networking opportunities for job-seekers with autism. Once placed in a job, Integrate staff provides support for the employee and employer for three months. “After we work with employers to develop management strategies to work with someone on the spectrum, most ultimately find that it didn’t require that much more management time,” Scheiner told Nicole Lyn Pesce at Market Watch. “In fact, they find that they become better managers of all of their employees by becoming clearer and more effective communicators.”

 

 

Sesame Workshop Introduces Julia’s Family

Sesame Street's Julia with her Family

It’s been four years since Sesame Street Workshop, the nonprofit media and educational organization behind the beloved children’s television show “Sesame Street,” premiered Julia, a 4-year-old Muppet with autism in its storybooks and on its website. Part of the organization’s Sesame Street and Autism: See Amazing in All Children initiative,  Sesame Street Workshop introduced TV audiences to Julia in 2017.

On April 1, 2019, in commemoration of Autism Awareness Month 2019, Sesame Street Workshop announced it will launch new videos and other materials that feature Julia’s family including her parents, brother and companion dog.

“We’re thrilled to expand Julia’s world with her parents, big brother and her adorable dog, Rose, in our new resources” said Sherrie Westin, President of Global Impact and Philanthropy, Sesame Workshop in a press release. “Children with autism often face unique challenges, as do their parents and siblings. But every family faces challenges of some sort, which is why we are focusing on what all families have in common. In a family, everyone has different roles, challenges and strengths, and everyone can learn from one another.”

Among the new materials now available are several new videos that celebrate Julia’s family life; the “Circle of Friends” storybook; the “Playground Pals” digital interactive; and assorted articles and activities for families and caregivers. The materials are designed to prevent bullying by encouraging kindness and empathy; and to teach coping strategies for children with and without disabilities. Online viewers will also be able to view a video about the creation of Julia’s Muppet family members.

On our blog, we at Enabling Devices have been following Julia for the past several years. Given the latest statistics on the prevalence of autism from the Centers for Disease Control and Prevention — 1 in 59 American children are affected by autism spectrum disorders — it is extremely gratifying to see children with autism and their families depicted on TV, in books and in online programming. Enabling Devices offers a variety of products including communicators and sensory tools to enrich the lives of people with autism. We also provide free advice and design services for those interested in creating sensory rooms for people with autism and others. Sensory rooms have many benefits to people with autism including increasing concentration and focus; providing mental and physical relaxation; decreasing aggressive behaviors; promoting cognitive development; and increasing coordination and gross motor skills. For more information and to see our informational video, visit enablingdevices.com/sensory-room/.

 

Social Robots May Hold Key to Improved Interpersonal Skills for Children with ASD

Human Hand touching Robot Hand

Though every person with autism is different, many people on the autism spectrum struggle with social skills. In recent years, the idea of using “social robots” to teach social skills to children with ASD has gained traction.

“Social robots are designed to interact with us,” writes Callum Brodie for Digital Empowers.com. “They are essentially mobile machines that exhibit social behaviours, such as recognizing, following and assisting their owners and even engaging in conversation.”

A new study by researchers at Yale University found that social robots are an effective treatment for children with communication challenges. The study, led by Brian Scassellati, a professor of computer science, found that children with ASD showed marked improvement in their social skills after working with robots 30 minutes a day over a 30 day period. What’s more, the children wanted their work with the robots to continue beyond the timeframe of the study.

According to Yale News, the robots in the study modeled eye contact and other social skills for the 12 children who participated. They also “guided the children … through storytelling and interactive games designed to promote social skills such as emotional understanding, taking turns, and seeing things from others’ perspectives.” Said Scassellati: “The children showed improved performance across the board… This was more than we had hoped; not only did the children and parents still enjoy working with the robot after a month, but the children were showing improvements that persisted even when the robots were not around.”

Scassellati explained that in earlier studies, children who worked with robots made short-term improvements. However, after several days, most lost interest in the robots, and subsequently, their social skills regressed. Yet the robots in the Yale study, which were specially designed to engage the children, held their interests and they steadily improved. As Scassellati told Yale News, “The study represents a significant advance in the lab’s work with social robots….Future studies will aim to give the robots an even more prominent role.”

Scassellati pointed out that children with autism often feel more comfortable interacting with robots than they do with humans. “These are kids who have years of experience with the idea that social interaction is challenging and something they don’t understand,” he said. “When they interact with the robot, though, it triggers social responses but it doesn’t trigger a lot of the other baggage they’ve come to associate with social interaction.”

 

 

Improv Classes Help People with Autism

Boy with Autism in Improv Workshop

We’ve all heard the saying, “Laughter is the best medicine.” Maybe that explains why more and more clinicians are recommending improvisational comedy (improv) as a therapeutic modality for people with mental health disorders such as social anxiety, and more recently, for developmental disabilities like autism. In response, some theater and comedy schools now offer courses in improv for children and adults with anxiety, autism and other special needs.

One of the first venues to offer such courses is The Second City. Founded in Chicago in 1959, The Second City, a sketch comedy club and school that launched the careers of comedy legends like Tina Fey, Chris Farley, Bill Murray and Keegan-Michael Key, now has additional locations in Hollywood and Toronto. In partnership with trained mental health therapists, The Second City began offering classes for people with anxiety in 2011 and ASD in 2013. The classes have proven both popular and successful.

“The early research in this area has shown that improvisation has a discernible positive effect in improving communication and prosocial behaviors in individuals with autism,” says Kelly Leonard, Executive Director of Insight on The Second City’s website.

Though clinicians, improv teachers and parents of children with autism vouch for the value of improv as a treatment modality, research studies such as an NIH-funded study at SENSE Theater Research Program of Vanderbilt University are currently underway to prove its efficacy.

So, how does participation in improv help individuals with anxiety and ASD? Believers say that improv can help to decrease anxiety in a variety of ways. The Mighty contributor Samuel Dunsiger says improv has taught him to remain present and improve his focus. “A constant struggle for people with anxiety is staying in the moment,” says Dunsiger. “I mean, it’s hard to keep your focus when you’re constantly worrying about something.”

Improv also helps participants become comfortable with the unexpected, something that’s challenging for anxious people to manage. “When you struggle with anxiety, this [the unexpected] might be your worst nightmare,” Dunsiger admits. “But trust me: it teaches you to tolerate and even welcome uncertainty. Uncertainty keeps things interesting and improv teaches you to have fun with it,” he says.

Finally, it’s impossible to fail improv, says Dunsiger, because it’s virtually impossible to make a mistake. That makes improv class a judgment-free zone, which builds confidence and reduces anxiety.

Since social anxiety is extremely common in people with autism, many of the same things that make improv therapeutic for people with social anxiety — becoming more comfortable with the unexpected, feeling accepted by a group, and staying present — makes it a great outlet for people with autism. Typically, individuals with ASD have difficulty with communication and social skills. Improv helps people improve these skills by teaching them to read social cues such as facial expressions and body language.

In a recent article in the Chicago Tribune, Blythe Corbett, a pediatric neuropsychologist who heads up the SENSE Theater, told reporter Kate Thayer, “Improv teaches one to think more broadly about different situations. …A lot of our children with autism have very rigid, concrete patterns of thinking. So, the idea of engaging in improvisational exercises allows a child to think more expansively.”

In addition, says Corbett, theater, including improv, helps children and teens who have difficulty empathizing with others develop “the ability to look at the world from another person’s perspective.”

As neuropsychologist Kristin Krueger told the Tribune, “Further study of improv is needed, but if the benefits she’s seen are shown through more research, access could expand for those who might not be receiving adequate mental health treatment.”

Have a Sense-ational National Autism Awareness Month!

Autism Awareness

Across the nation, people with autism and the organizations that support them are gearing up for the month-long celebration of National Autism Awareness Month. Want to get involved?

There are a variety of actions you can take to spread the word about autism and to encourage neuro-typical Americans to be more accepting, inclusive and appreciative of the gifts people with autism bring into our world.

The Autism Society recommends that friends, families and allies of people with autism connect with local organizations sponsoring special autism month events such as autism walks, runs, and other fundraisers, sensory-friendly events and online activities. The Autism Society also asks people affected by autism to share their experiences on the society’s Facebook page, and to wear or display the society’s Autism Awareness Puzzle Ribbon. Donations to the Autism Society, Autism Speaks or many other organizations that support research and programming for people with autism is a critical way to support Autism Awareness Month.

Another way is to become knowledgeable about the signs and symptoms of autism and to help educate others about these. The Centers for Disease Control and Prevention recommends that parents and medical professionals be aware of developmental milestones (such as smiling, sitting up, crawling, babbling) and seek help if they feel concerned that their child is not meeting milestones within normal limits. Time is of the essence here, because early diagnosis and intervention is crucial to having a favorable prognosis.  According to Autism Speaks, “Recent research confirms that appropriate screening can determine whether a child is at risk for autism as young as one year.” Once a child is diagnosed, parents, physicians and therapists can determine a treatment plan and therapy can begin.

“While every child develops differently,” according to Autism Speaks, “we also know that early treatment improves outcomes, often dramatically. Studies show, for example, that early intensive behavioral intervention improves learning, communication and social skills in young children with autism spectrum disorders.”

Many children with autism benefit from interventions such as speech/language, creative arts and occupational therapies. Sometimes treatment takes place in a sensory room or sensory space.

Enabling Devices offers a variety of products that therapists and special educators can use in their work with clients and students with ASD who experience sensory processing challenges. In a previous blogpost, Enabling Devices’ Product Development Specialist Karen O’Brien explains, “Sensory rooms are spaces where children and adults can explore their environments through visual, auditory and tactile experiences.” For example, sensory spaces might contain “swings, ball pits, LED light illuminators, bubble tubesgel pads, weighted vests, musical and tactile toys, sensory wall panels, aromatherapy fans and comfortable seating such as beanless bag chairs.”

Though setting up a sensory space may seem like an expensive and/or overwhelming task, it needn’t be. While some sensory spaces are large, and chock full of equipment, toys and other devices, others are created by dedicating an alcove or walk-in closet, and contain just a few carefully selected items. Our staff is happy to help you design a sensory space that accommodates your space, budget and desires. You can start planning your sensory space by completing our sensory design questionnaire. A staff member from Enabling Devices will contact you to provide advice within 48 hours.

For more information on sensory spaces, see these blogposts:

Start Making Sense: How to Create a Fabulous Sensory Room

Make the New Year Sense-ational!

Browse Sensory Products

Six Tips for Preventing Wandering in People with Autism

Boy walking up a stairs

As Autism Awareness Month 2017 comes to an end, we were heartened to learn of a new study which found that wandering, a common behavior among people with autism and other developmental disabilities, may be treatable with behavioral interventions.

The study, “Clinical Outcomes of Behavioral Treatments for Elopement in Individuals with Autism Spectrum Disorder and Other Developmental Disabilities,” provides hope in the face of the deeply disturbing conclusions of another more recent study, “Injury Mortality in Individuals with Autism,” that found children and teens with autism are 40 times as likely to die from injuries as those without ASDs. Additionally, and equally as shocking, the study found the average age of death for those with ASDs was only 36 years old as opposed to 72 in the non-autistic population. Clearly, it is imperative that we find effective ways of preventing senseless injuries and deaths that result from wandering. Here are some tips and resources that will help keep more people with autism safe.

1. Swimming lessons
According to Guohua Li, MD, DrPH, professor of epidemiology at Columbia University’s Mailman School of Public Health, and the senior author of the study on injury mortality, “Once a child is diagnosed with autism, usually between two years and three years of age, pediatricians and parents should immediately help enroll the child in swimming classes, before any behavioral therapy, speech therapy, or occupational therapy. Swimming ability for kids with autism is an imperative survival skill,” Dr Li said. In addition to their tendency for wandering, Li also noted that children and teens with autism often gravitate toward water. “With impaired communication and social skills, autistic kids tend to seek relief of their heightened anxiety from the serenity of water bodies. Unfortunately, this behavior too often leads to tragedies,” said Li.

2. Wander-proof your home or school
People who wander may require the use of locks and alarms on doors and windows to keep them from eloping or from getting into cabinets or drawers with products that could be dangerous to them. Outdoors keep individuals with autism away from unsupervised swimming pools or busy streets by installing alarms and fences with heavy duty locks.

The Autism Society says “door and window alarms can be a key investment” in keeping children with autism safe. The Society urges parents to consult with a professional who “can advise [them] of the legal and larger safety implications of the security measure [they] are considering.” For example, when installing locks, be sure to “have immediate access to any locked room in the event of fire or other emergency.”

3. Safety resources
In an effort to prevent tragedies caused by wandering, the National Autism Awareness Association created the digital, downloadable Big Red Safety Toolkits. Available free of charge to parents, teachers and first responders, the kits include resources such as caregiver checklists, stop sign prompts, samples of physician’s and IEP letters and recommended social stories to help children and teens learn about the dangers of wandering. There is also information about affordable safety tools, a family wandering emergency plan and first responder alert forms.

4. Tracking devices
Devices such as the AngelSense, a GPS and voice-monitoring system especially designed for people with special needs allows caregivers to keep track of their child’s whereabouts and to receive alerts when the child deviates from his schedule or leaves the premises. If a caregiver determines the child has eloped, the device provides (among other things) location updates every 10 seconds, enables caregivers to hear background noise at the child’s location, and helps to determine the location of the missing child and how far it is from the caregiver’s location.

5. Educate children and others
According to Stages of Learning, many children with autism lack knowledge of what to do in the event that they become lost. If your child or a child you care for has the cognitive and comprehension skills to understand safety precautions, teach her some strategies. Children can be taught to speak with an adult such as a police officer or store-owner; tools such as books, educational videos and social stories can be helpful in teaching children about the dangers of traffic and water.

Also be sure that first responders and all school personnel are aware of a child’s tendency to wander. Along with school administrators, come up with a plan to prevent wandering. One remedy is for the child to have a full-time aide; another is to install locks, fences, etc.

6. Make sure children carry identification
A 2012 study found that “Approximately 35 percent of children who wander are rarely able to communicate their name, home address or phone number.” Try ordering an Alert Me band or visit National Autism Association’s Big Red Safety Shop for a variety of identification options.

What’s New in Autism Research?

Autism Awareness Month Notice with Puzzle Symbol

According to the most recent data available from the U.S. Centers for Disease Control and Prevention, “One in 68 school-age kids across the country are estimated to have autism.” Such alarming statistics demand answers and researchers are busy studying the developmental disorder and its significant ramifications, not only for the people who have autism and their families, but for our society as well. In commemoration of National Autism Awareness Month, we’ve scoured the internet, to uncover the latest research findings on topics related to autism spectrum disorders.  Here’s what we found.

1. Brain scans can help predict development of autism in siblings

In February 2017, scientists at the University of Minnesota published findings of a 12-year-long study in the journal Nature, that could result in earlier detection of autism in children who have a genetic predisposition to developing the disorder. Basing their research on science from the 1990s that found children with autism had larger brain volume than children without autism, scientists took brain scans of more than 100 siblings of children with autism, at 6, 12 and 24 months of age. The researchers discovered that some siblings who later developed autism, experienced a rapid expansion of brain surface between the ages of 6-12 months. Using a computer program built for the study, scientists compared the brain scans of the siblings to the scans of children in a separate study group and could predict with 80 percent accuracy, which children would go on to develop autism. That’s a major development since early detection and intervention can make a huge difference when it comes to treatment efficacy.

2.  Parents of children with autism need to nurture their relationship

A study published in the Journal of Autism and Developmental Disabilities last month found that parents of children with autism spend (21 minutes per day) less time together than parents of typically developing children. Parents of children with autism should try to close that gap, recommended study lead author Sigan Harley of University of Wisconsin-Madison in an interview with Disability Scoop. “Just like any child, a child with ASD affects, and is affected by, the entire family …Developing therapies or strategies that help parents thrive and keep their relationships strong is critical for the long-term success of children.” In other words:  Don’t skip date night!

3.  Links between autism and gut microbes have treatment implications

A study by researchers at Northern Arizona University, Arizona State University, Ohio State University and University of Minnesota lent support to previously reported links between autism and gut microbes. According to Northern Arizona University News, “Eighteen participants with autism who ranged in age from 7 to 16 underwent a 10-week treatment program that involved antibiotics, a bowel cleanse and daily fecal microbial transplants. The results, which were recently published in the journal Microbiome, were encouraging,” said the publication. “While the long-term impact is unknown, researchers observed an 80 percent improvement of gastrointestinal symptoms associated with autism spectrum disorders, with a 20-25 percent improvement in autism-related behaviors, including improved social skills and better sleeping habits.”

4. Brain mapping offers important data on boys with autism

A 2016 study published in JAMA Psychiatry provides hope for boys with autism and their families by using functional magnetic resonance imaging technology to “map and track the function of brain circuits affected by autism spectrum disorder in boys,” according to a press release from the George Washington University. “This is significant because biomarkers give us a ‘why’ for understanding autism in boys that we haven’t had before,” said Kevin Pelphrey, a co-author of the study. “We can now use functional biomarkers to identify what treatments will be effective for individual cases and measure progress.” In next steps, Pelphrey and his team will conduct a larger study of individuals with autism and other neurological disorders to determine whether brain scans show differences between the brains of boys with autistic spectrum disorders and boys with other neurological disorders. The study will also evaluate the technique’s efficacy in tracking treatment progress.

5. Children with autism at far greater risk of death from injuries

A brand-new study published last month in the American Journal of Public Health found that individuals with autism diagnoses were three times more likely to die from injuries than individuals who do not have the diagnosis. The numbers among children with autism are even more catastrophic. The study found that children with autism are 40 times more likely to die from injuries than children without autism. Eighty percent of these premature deaths are caused by asphyxiation, suffocation or most commonly—drowning. The bottom line? These needless deaths are preventable. Interviewed by CNN about the study, Autism Speaks’ Michael Rosanoff, directed parents to the organization’s website for tips on water safety for children with autism, especially those who tend to wander.

New in the Neighborhood!

Julia Sesame Street

April is Autism month, and the beloved public television show, Sesame Street, will celebrate the occasion with the TV debut of a brand-new character named Julia!

Though Julia, an adorable four-year-old Muppet with autism was first introduced in 2015, as part of nonprofit educational organization, Sesame Workshop’s online autism initiative, her prior appearances were limited to Sesame Street’s website, e-books, app and videos. On April 10, viewers of Sesame Street will meet Julia— the first new character to join the furry Muppet clan in ten years—for the first time.

According to a press release, Julia’s debut evidences the start of a “rich new phase of the [autism] initiative,” known as Sesame Street and Autism: See the Amazing in All Children … and signals “a strong, continuing commitment to the autism community.” Julia’s role has expanded because her creators realize that she can have reach more people and have a greater impact if the show’s viewers get to know her.

Described on the website as “sweet,” “curious,” playful and a talented singer and artist, Julia also exhibits symptoms that may be familiar to those who interact with people on the autism spectrum. For example, sometimes Julia has trouble paying attention, and sometimes she repeats words.

In an online video that introduces Julia, when she is unresponsive to (character) Abby Cadabby’s offer to play, Elmo explains that Julia “sometimes does things differently because Julia has autism.” He encourages Abby to try asking again “slowly and with fewer words,” a technique that results in success. The three Muppets then proceed to play happily together.

Julia will be voiced by puppeteer Stacey Gordon, the mother of a son on the autism spectrum.

In an interview with National Public Radio, Gordon told media correspondent David Folkenflik she regretted that Sesame Street didn’t have an autistic character when her son was younger and a viewer of the television show.

“Bringing Julia to life as a Sesame Street Muppet is the centerpiece of all of our new materials to support families of children with autism,” said Sherrie Westin, EVP of Global Impact and Philanthropy, Sesame Workshop in a press release. “The response from the autism community to See Amazing in all Children has been extraordinary, and we are committed to continuing our efforts to promote understanding and acceptance of autism, as part of our mission of helping all children grow smarter, stronger, and kinder.”

Statistics show that one in 68 American children is diagnosed with an autism spectrum disorder. Therefore, the experts at Sesame Workshop determined there was a need to provide a variety of resources to raise awareness, increase tolerance and inclusion for children with autism and their families.

“We heard a call to use our expertise and characters to build a bridge between the autism and neuro-typical communities,” said Dr. Jeanette Betancourt, SVP of U.S. Social Impact for Sesame Workshop.

Currently, researchers at Georgetown University are studying the efficacy of Sesame Workshop’s autism resources on families with autistic children. According to Folkenflik, “preliminary findings suggest the material helps families with autistic children feel more comfortable incorporating them in broader community activities, and that families whose children do not have autism are more accepting of those kids who do.”

Research Points to Proven Therapy for Young Children with Autism

Image of therapist and child

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.

 

DIR Floortime: What’s it all about? Q & A with Sima Gerber, Ph.D.

Photo of mother and son

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

Enabling Devices’ Book Shelf

Book shelves image

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:

Book cover for "NeuroTribes"“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

Book cover for "Switched On"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.