Category: Autism

Perhaps you’ve heard the saying: “Seen one person with autism, seen one person with autism.” The adage speaks to the fact that all people on the autism spectrum are individuals with different capabilities, personalities, challenges and life trajectories.

A recent study published in the journal Nature Genetics offers new biologically based insights that explain some of the differences between individuals with autism spectrum disorders. The study included more than 5,000 children ages 4 to 18 with autism and examined them in terms of social interactions, repetitive behaviors, developmental milestones and genetic markers.

Conducted by scientists at Princeton University and the Simons Foundation Autism Research Initiative, the study breaks down the autism diagnosis into four subtypes, though scientists believe there may be additional ones.

For now, these are the subtypes that have been identified. They have been distinguished by their prevalence, profile, co-morbidities and genetic variants.

Subtype 1: Children with Social & Behavioral Challenges
Subtype 1 affects 37% of the autistic children in the study. These children present with core autism characteristics such as trouble with social interactions and repetitive behaviors. Many of these children also have other conditions such as ADHD, anxiety, depression or obsessive-compulsive disorder and they typically achieved developmental milestones on time. The children have genetic mutations that expressed themselves later in childhood which explains why they were diagnosed later than other children with autism.

 Subtype 2: Mixed ASD with Developmental Delay
This subtype affects 19% of children with autism in the study. These children experienced delays in developmental milestones but were less likely to be diagnosed with ADHD or anxiety disorders. Their genetic profiles featured a combination of rare, inherited mutations which suggest that their autism may stem from inherited biological origins.

Subtype 3: Moderate Challenges
Thirty-four percent of children in the study were designated with Subtype 3. These children experienced milder autistic traits, were less likely to have other psychiatric diagnoses and met developmental milestones on time. Their genetic load was unlikely to show rare or psychiatric mutations.

Subtype 4: Broadly Affected
Subtype 4 affected 10% of study participants. These children had the most severe and pervasive developmental delays, social and communication challenges, repetitive behaviors and psychiatric problems.  Their genetic profiles showed many rare and detrimental mutations that were often located in genes that impacted prenatal brain development.

Hopefully, the findings of the study will lead to better treatment and support for individuals with autism.

According to Psychology Today, people with autism “are seven times more likely to encounter police” than their neurotypical peers. In fact, “about 20% will be stopped and questioned, and 5% will be arrested by age 21.”

Even more shocking: A white paper by the Ruderman Foundation revealed that between one-third to one-half of people killed by police officers are disabled. Why so many? Because police officers may not recognize the signs of autism.

“What makes interactions with law enforcement so potentially dangerous for the autistic population is that some autistic behaviors look suspicious or even defiant,” says Psychology Today. Not answering questions, looking away, stimming, or echolalia (repeating words back) may draw attention and potentially trigger an officer trained to dominate and control a situation.”

This is particularly problematic when neurodiverse drivers are stopped by police. “The sensory storm of loud sirens, lights, and authoritative behavior can agitate autistic people and increase their dysregulation. Autistic people may also have difficulty understanding verbal directions and thus may not be able to execute instructions,” according to the magazine.

An initiative called “The Blue Envelope Program” aims to prevent dangerous interactions during traffic stops. First piloted in the State of Connecticut in 2020, the program has grown to include Arizona, New Jersey, New York, Maine, Massachusetts, California and—just last month—Mississippi.

The Blue Envelope Program is easy to implement. Neurodiverse drivers can request a blue envelope from their local law enforcement agency. Into the envelope, drivers place relevant documents including their license, registration and insurance card. They can also add information that identifies them as a person with autism and describes their triggers. Likewise, they can include information about their neurodiverse child or adult passenger.

In the event that they are stopped by police, showing the officer the blue envelope will alert them to the fact that the driver or passenger has autism. Armed with this knowledge, the officer is more likely to handle the interaction with sensitivity, and less likely to jump to conclusions about the driver or passenger’s behavior.

In the best case scenario, police officers receive education about neurodiversity, and training in how best to handle interactions with neurodiverse individuals. Fortunately, police departments are increasingly offering such training. With higher and higher numbers of people being diagnosed with autism—latest CDC statistics indicate that one in 36 children are on the autism spectrum—this trend could not come soon enough.

In recent years, a wellspring of shows about people with disabilities have attracted a great deal of interest. These include shows like “Love on the Spectrum,” “Born This Way,” “Little People, Big World,” and “Push Girls.”

A new travel show created by Visit Myrtle Beach and The WorkShop Content Studios, and geared toward people with autism and their families, promises to guide perspective travelers as they plan autism-friendly vacations.

“Traveling the Spectrum,” which premiered Dec. 12 on Peacock, is a six-episode documentary series that chronicles the experiences of three families with autistic members on vacation in Myrtle Beach, South Carolina, “the birthplace of the autism-friendly travel initiative,” according to the Autism Travel Club.

In the show, the Gielink, Hall and Tilk families, travel to autism and sensory-friendly attractions including the area’s Intracoastal Waterway, Ripley’s Aquarium Pelicans Ballpark, Broadway at the Beach, the Sky Wheel and Savannah’s Playground.

Myrtle Beach Chamber of Commerce Chief Marketing Officer Stuart Butler told Disability Scoop that the show’s intention is to help autism families feel more comfortable vacationing.

He said, “‘Traveling the Spectrum’ has the potential to change the world by helping families on the autism spectrum feel more comfortable exploring new destinations. By following along on their vacations and hearing their personal stories, we see the unique challenges each family faces and how our community steps up to provide a welcoming, inclusive experience.”

Given the results of a survey by the International Board of Credentialing and Continuing Education Standards’ website Autism Travel, this kind of reassurance to families is badly needed. The survey found that “87% of parents of children with autism said they don’t currently take family vacations and 93% said they’d be more likely to travel if autism-certified options were available.”

In addition to the TV show, the Myrtle Beach Chamber of Commerce partnered with author and illustrator Lynda Farrington Wilson to create “Splish, Splash, Squawk! Finding Joy in a Sensory Friendly Vacation,” a children’s book that provides tips for autism families planning a trip to a beach resort.

While Myrtle Beach destinations are featured in “Traveling the Spectrum,” Autism Travel provides information on autism-friendly destinations all over the world.

For more information on “Traveling the Spectrum,” visit travelingthespectrumshow.com.

To visit Autism Travel, click here.

 

It’s still Autism Awareness month, so this week we’re featuring a recently opened NYC-based café that offers employment opportunities to individuals on the autism spectrum.

Café Joyeux, which began in France, recently opened its first New York location on Manhattan’s East Side.  The café/restaurant chain was founded by Yann Bucaille-Lanzerac, a French entrepreneur.

In 2012, Captain Bucaille-Lanzerac, an avid sailor, bought a fully accessible catamaran and started offering sailing excursions for people with autism spectrum disorder and intellectual disabilities. On one such trip, a passenger named Theo asked the captain to give him a job on the ship but Bucaille-Lanzerac had no job to offer. The request opened his eyes to the obstacles that many individuals with developmental and intellectual disabilities face when trying to break into the job market. It inspired Bucaille-Lanzerac to start Café Joyeux, a “not-for-profit organization dedicated to promoting the inclusion of people with disabilities, starting in our own cafes but also beyond the walls of our own company.” The character in the company’s logo is designed to look like Theo.

The first Café Joyeux location opened in 2017 in Rennes, France. Two years later the organization’s “flagship” store opened on the Champs- Élysées in Paris with French President Emanuel Macron in attendance.

According to the organization’s website, all of Café Joyeux’s profits are reinvested to support its mission.  Currently, there are 21 stores. Most are in France but the chain has also opened locations in Belgium, and in Lisbon and Cascais in Portugal. This year, eight more locations (including the Manhattan store) are scheduled to open in the United States.

So far, the organization employs 183 crew members with developmental and intellectual disabilities and 115 managers and catering professionals who train and work alongside them.

Café Joyeux stores are notable for their beautiful appearances and layouts. They were designed by well-known French interior designer Sarah Poniatowski, who took care to ensure that the stores’ design elements and layouts are pleasant for both customers and employees.

Café Joyeux also takes pride in offering high quality food made onsite and of course, their own line of coffee. Interested in checking out the NYC store? You can find it at 599 Lexington Avenue, on East 52nd St. between Lexington and 3rd Avenue.

Photo credit: Café Joyeux

April is Autism Acceptance Month! So, in today’s blogpost, we’re featuring a young entrepreneur with autism who recently founded two businesses designed to encourage inclusion and provide employment opportunities for people with disabilities.

With the help of devoted family members, Aaliyah Alicia Thompson opened Aaliyah’s Beauty Bar in Jonesboro, Georgia, in 2022. Thought to be the first salon in the country started by a person with autism, Aaliyah’s offers nail, makeup and hair styling services “for ALL women no matter their shape, size, skin color or capabilities.”

Just eight months after launching her beauty bar, Thompson, who was diagnosed with autism at age 5, founded the Aaliyah School of Nails in Jonesboro. The school is specifically meant to provide training to aspiring nail professionals with autism.

“I am thrilled to be launching my nail school and to continue my journey as an entrepreneur,” said Thompson in a news release. “As someone with autism, I know firsthand the challenges of finding opportunities in the workforce. But I also know that individuals with autism have unique talents and abilities that can be harnessed to achieve great things. I hope that my nail school will serve as a model for inclusive entrepreneurship and inspire others to pursue their dreams, no matter their background or challenges.”

According to the news release, the Aaliyah School of Nails will train students in nail care and design services as well as business management skills. Upon graduation, students will be certified nail techs with the skills needed to start their own nail salons, or to work in a nail salon owned by someone else.

Thompson’s groundbreaking work is being recognized within and outside of the beauty industry. Recently, she became an ambassador for McDonald’s Black & Positively Golden Change Leaders program and in 2023, Thompson was awarded $10,000 at the Afro Tech conference in Texas. Last Christmas, she donated half of her award money to 10 single parents raising children with autism. As someone living with autism who was raised by a single mother, Thompson has a keen awareness of the needs of families in challenging situations, especially during the holiday season. As she told Atlanta-based news station 11 Live, “My mom was a single parent, and there was a struggle. She worked so hard”, said Thompson. “I’ve seen a lot of people struggle nowadays because it’s a lot of work to build yourself up.”

Added Thompson, ““Follow your passions. You are smart. It doesn’t matter what people think.”

Anyone who has ever moved from one home or community to another can attest to how stressful that transition can be. In fact, multiple experts have confirmed that moving is the third most stressful event many people experience during their lifetimes.

It should come as no surprise then, that moving is particularly stressful for people with autism, many of whom rely on consistency and structure to feel safe and secure.

Fortunately, there are strategies that can relieve much of the stress of moving. MyMove.com has put together these suggestions for making your move as stress free as possible.

1. Give advanced notice
And we mean a lot of it. Make sure that your child is aware of plans to move as soon as the details are final. This will allow your child more time to process the idea of relocating and to ask any questions and discuss any concerns they may have. MyMove.com recommends creating a calendar that provides visual representation of important dates related to the move.

2. Talk about the move
Let your child know why the move is necessary and focus on what the move will mean for their daily life. This is a good opportunity to tell your child about anything that may excite them about the move. For example, we’ll have room for an adaptive swing-set and a sensory room or the new house has a fenced-in yard so you can finally have the dog you’ve been wanting. Be prepared to tell your child everything you know about their new school, caregiver or day program. MyMove.com suggests creating a social story about the move to help decrease your child’s anxiety. Find an example of a social story on MyMove.com’s website.

3. Enlist your child’s help with packing
Packing can be one of the most stressful parts of moving for adults and children alike. But there are ways to make the process less stressful. If your child is capable, give them a job such as assembling or labeling boxes. Give your child as much control as possible about what to keep and what to give away. Allow your child to choose new bedding with their favorite character or theme, and within limits, let them have their say about paint colors and decorations. MyMove.com recommends saving your child’s room for last when it comes to packing up the house. This will minimize confusion and anxiety. If all else fails, bubble wrap is always good for some fun!

4. Prepare your child for their new surroundings
If you’re moving to a community close to your current home, help your child get to know his new neighborhood by planning excursions around the region. If possible, take your child to visit their new home and walk around the neighborhood stopping at places your child is likely to enjoy. Is there a great ice cream parlor nearby? A movie theater showing their favorite film? A wonderful playground? Knowing these attractions are close to their new home will make the transition easier for your child. If you’re moving far away, assemble photographs of the new house and neighborhood and show them to your child frequently. This will help to prepare them for the move and feel more comfortable about what to expect.

5. Visit your child’s new school
If possible, visit your child’s new school before the move. If not, do your best to visit school before the new school year starts. Try to arrange a meeting with your child’s new teacher and help your child become acclimated to a new school building.

For more helpful moving suggestions, visit mymove.com.

At Enabling Devices, we’re always excited to learn about quality programs that serve the disability community. So, we were thrilled to discover a groundbreaking program called Music for Autism.

Established in the United Kingdom in 2002, Music for Autism was a labor of love for John Lubbock and Christine Cairns, musicians and parents of a son with autism. The program began with some fundraising concerts and the couple’s production of a CD of Scottish folksongs called “Songs for Alexander,” which was dedicated to Lubbock and Cairn’s son Alexander. With the money they raised, Cairns and Lubbock were able to realize their dream of providing free interactive concerts for individuals with autism and their families.

As explained on the nonprofit’s website, “The concerts are held in halls that appeal to people with autism; there is always open space for the audience to react to the music through spontaneous dance and movement. Featuring members of the Orchestra of St. John’s, founded and conducted by Maestro John Lubbock, the unique concerts expose individuals with autism to high quality classical music in an environment designed to make them feel comfortable.”

But Lubbock and Cairn’s work didn’t end there. Music for Autism has also funded schools, music education programs, equipment, transportation, school supplies and sensory rooms for children with autism.

In 2007, Robert Accordino brought Music for Autism to the United States where the organization offers “autism friendly” concerts at locations including the 92^nd Street Y, the Mount Sinai Adolescent Health Center, the Brooklyn Heights Public Library and the JCC of Staten Island in New York City. In 2011, a $170,000 endowment from philanthropist Linda Rogers Emory enabled Music for Autism to provide concerts throughout New York State.

Elsewhere in the U.S., Music for Autism offers concerts at the Westview School in Houston, Texas, the Help Group in Los Angeles and The Ivymount School in Washington D.C.

In 2013, the U.S. Music for Autism program formed a partnership with the Baltimore Symphony and provided autism friendly concerts in Massachusetts.  The same year, Music for Autism in the U.S. added bilingual (Spanish and English) concerts to its repertoire.

Music for Autism concerts are performed by top musicians from all genres, including Grammy-nominated classical musicians, Pulitzer Prize winners and Tony Award-winners including Aurista Chamber Music, Cody Williams, the Brentano String Quartet, Doo Wop Project, Micky Katz, Rose Hemingway, Quattro, Thayne Jasperson and many others.

According to the National Library of Medicine of the National Institutes of Health, “Music has been identified as a strength in people with Autism Spectrum Disorder; however, there is currently no neuroscientific evidence supporting its benefits. Given its universal appeal, intrinsic reward value and ability to modify brain and behavior, music may be a potential therapeutic aid in autism.”

In other words, Music for Autism’s concerts and programming can be life changing for individuals with autism and their families.

For more information about Music for Autism visit musicforautism.org.

According to the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring (ADDM) Network, an estimated 1 in every 44 children are diagnosed with an autism spectrum disorder (ASD) by age 8.

While no one is sure why autism has become so prevalent, the significant increase in ASD diagnoses means that these days, more of us are caring for children with special needs. To provide good care and encourage healthy development, caregivers must understand the basics of autism and have the skills necessary to support children with ASD in their daily lives.

Lucia Murillo, Autism Speaks’ assistant director of education research, reports that many parents and caregivers, especially in underserved communities around the world, don’t have ongoing access to professionals with autism expertise who can provide them with information and tools to support children with autism.

“Many of these parents went to great lengths and expense to get their children evaluated,” says Murillo. “But a diagnosis of autism didn’t necessarily lead to services or even information about the condition. For instance, on a trip to Albania, I heard from parents, teachers and healthcare professionals about how they didn’t know what to do to help a child diagnosed with autism. ‘We don’t have the skills. We don’t have support,’ they told me. We’ve heard these concerns in many parts of the world.”

That’s why the World Health Organization (WHO) collaborated with nonprofit Autism Speaks to develop the Caregivers Skills Training Program for parents and caregivers of children with developmental delays and developmental disabilities including autism. So far, the in-person program, first piloted in 2019, has been offered to caregivers in 30 countries.

On April 2, 2022, World Autism Awareness Day, the WHO released an online version of the Caregiver Skills Training Program. According to the WHO, the program “teaches parents and other caregivers day-to-day skills that help boost the well-being and development of children with autism and other developmental disabilities.”

The release of the online training program will enable thousands of families to access the curriculum, which “includes pre-recorded information sessions on topics such as using everyday routines as opportunities for children to learn, engaging with children through play and problem-solving. Sessions to help caregivers improve their own well-being are another important feature of the course,” says the WHO.

That part is critical since “parents of autistic children report that they experience more depression, anxiety, and stress-related health problems than other parents. Parental stress has also been associated with marital distress, less effective parenting, and dropping out of treatment,” according to Learn Behavioral.

Caregivers can engage in online training on their own timetables and course materials are geared toward learners without previous education in autism and developmental disabilities.

Says Dr. Chiara Servili, an expert in the mental health and brain health of children and adolescents at the WHO: “During the pilot phase, the Caregiver Skills Training Program equipped families in a wide range of community settings with the knowledge and skills to better understand and engage with their children with developmental delays or disabilities. The launch of the e-version means that many more thousands of families will now be able to benefit from it.”

To get more information about the online version of the Caregiver Skills Training Program click here.

The Museum of the Moving Image in Queens, New York, kicked off Autism Acceptance Month with its first annual Marvels of Media Awards celebration.

Developed by the museum’s education department, the program—which launched March 31 and concludes April 30—includes an awards ceremony, a festival with workshops, film screenings and artist talks, and an exhibition highlighting the work of media artists on the autism spectrum.

Preparation for the celebration started back in October 2021, when the museum put out an open call for nominations of media makers on the spectrum. They received a whopping 3,071 nominations from nominators in 117 countries!

After careful consideration by judges—including industry leaders such as president of the Jim Henson Foundation Cheryl Henson; Academy Award–winning producer Brian Grazer; and Journalist Paula Zahn—media works award winners were chosen in 12 categories: Animated Short, Collaborative Innovation, Digital Art, Documentary, Experimental Film, Mockumentary, Narrative Feature, Narrative Short, Series, Video Game, Student Animated Short, and Student Video Game.

Curated by Sara Guerrero-Mostafa, Miranda Lee, and Tiffany Joy Butler, the multimedia exhibition includes 17 works including short films and video games that can be viewed and played on screens in the gallery. Additionally, objects and documents related to media making are on display. The media makers whose work is exhibited come from all cultural and artistic backgrounds.

Workshops conducted as part of the festival included an access rider workshop led by artist-filmmaker April Lin for artists with disabilities ages 16 and up. Access riders are documents that disabled artists can use to communicate their accessibility needs to fellow artists, organizations, or employers.

Events surrounding the exhibit are screenings of shorts by filmmakers at ReelAbilities, an organization “dedicated to promoting awareness and appreciation of the lives, stories and artistic expression of people with disabilities,” on April 9; media artist Carrie Hawks will present an artist talk followed by a hands-on animation workshop for media artists ages 16 and up on April 16; and on April 23, the museum will screen the Marvels of Media Awards winning entries.

In a press release, the museum’s executive director Carl Goodman said that the Marvels of Media Awards illustrates the museum’s continued “commitment to supporting the creative endeavors and pursuits of neurodiverse media-makers of all ages and backgrounds, and to help forge pathways within the media and entertainment industries through which these makers can have a substantive impact on our culture.”

Bradley Hennessey is one of the contest finalists. Hennessey’s submission, “An Aspie Life” is a videogame that teaches players what it’s like to live with autism.

“I believe Marvels of Media is an important venture into an amazing group of creators,” he said. “Throughout all media, there are many on the spectrum who work day and night to develop art. The autistic spectrum covers a wide range of individuals, each unique in who they are and how they interact with the world. When this is applied to a creative endeavor, the end result is a representation of who they are. Through this, I hope visitors will gain a better understanding of what it means to be on the spectrum and their perspective on life.”

For more information about the Marvels of Media Awards and the Museum of the Moving Image, click here.

If you have young children, you may be familiar with “Xavier Riddle and the Secret Museum,” an animated television show on PBS. The show chronicles the adventures of three children — Xavier, Yadina and Brad — who travel back in time to meet historical figures.

In celebration of Autism Awareness Month, the series recently aired a special episode in which the three young protagonists meet a new boy named Ben who has autism. Uncertain about how to relate to Ben, the trio travel back to 1953 and meet Temple Grandin, a renowned animal scientist and autism activist.

In the episode titled “I Am Temple Grandin,” Grandin teaches her visitors that “sometimes people think and do things differently.”

Grandin, who was a consultant for the episode, was pleased with the portrayal. “It was wonderful. Absolutely wonderful,” Grandin told the Beaumont Enterprise recently via Zoom. “I think things like this show are really good on educating elementary school kids about differences and inclusion.” The episode is available to stream on the PBS KIDS YouTube channel and will be rerun on April 30, May 1 and May 2 on PBS Kids.

“Xavier Riddle and the Secret Museum’s” Autism Awareness Month episode is just one example of the public television network’s Autism Awareness programming. “Daniel Tiger’s Neighborhood,” a spinoff of the iconic “Mr. Roger’s Neighborhood,” also recently introduced a young character with autism. Max, who is voiced by a teenager on the autism spectrum, will be a recurring character on the show. Like many people on the spectrum, Max is “sensitive to loud sounds, flashing lights and uncomfortable fabrics. He likes numbers, buses, bugs and his big sister Amira, but sometimes it takes him longer to get comfortable with new people and situations,” writes Shaun Heasley for Disability Scoop. Watch the episode here.

“Hero Elementary,” which launched on PBS Kids in June 2020, already included a recurring character with autism. However, it was only in time for Autism Awareness Month that the series made its character AJ Gadgets’s diagnosis explicit in a special episode called “AJ’s Extra Superpower.”

AJ  just “happens to be on the autism spectrum,” writes Frank Campagna, a consultant for the show who is also the father of a child with autism. “My role was to ensure that autism was being portrayed accurately, and that their character with autism, AJ, was a good representation of a high-functioning child on the spectrum.” Campagna believes the show succeeded. “AJ flaps his hands when he’s anxious, wears noise canceling headphones when needed, and he doesn’t like it when his clothes get wet. AJ has his quirks, but his friends accept him for who he is. Most of my feedback to the producers focused on how the other characters reacted when AJ had his moments. I wanted AJ’s friends to be supportive, but to never come across as patronizing.” Watch the AJ’s Extra Superpower episode here.

PBS has long been a champion for diverse and inclusive programming. In 2015, the network introduced its “Sesame Street and Autism: See Amazing in All Children” initiative. During the COVID-19 pandemic, Sesame Workshop has been offering special programming for children with autism to help them to adjust the many changes and disruptions caused by COVID-19.