autism

Productive collaboration

The Azrieli National Centre for Autism and Neurodevelopment Research team includes, left to right, Dr. Gal Meiri, Prof. Hava Golan, Prof. Ilan Dinstein, Mazal Malka and Prof. Idan Menashe. Dinstein and Menashe will be in Vancouver in May to meet with colleagues from the University of British Columbia. (photo from azrielifoundation.org)

When the International Society for Autism Research convenes in Seattle April 30 for its annual conference, researchers from all over the world will be flying in to learn about and share the latest research on this multifactorial disorder. Two of them, Idan Menashe and Ilan Dinstein, who head up the Azrieli National Centre for Autism and Neurodevelopment Research (ANCAN) at Ben-Gurion University, will be coming from Israel. When the conference wraps up, they will be in Vancouver to continue a three-year collaboration with autism researchers at the University of British Columbia and Simon Fraser University, and meet with various people, including community members.

Menashe and Dinstein were part of a group – that included Dr. Tim Oberlander from UBC’s School of Population and Public Health and Grace Iarocci, director of SFU’s Autism and Developmental Disabilities Laboratory – that published a paper in 2023 on whether oxytocin is associated with an increased risk of autism in offspring.

“Oxytocin is a neuropeptide hormone that plays a key role in social behaviour, stress regulation and mental health,” begins the paper’s abstract. “Synthetic oxytocin administration is a common obstetrical practice and, importantly, previous research has suggested that intrapartum exposure may increase the risk of neurodevelopmental disorders, such as autism spectrum disorder.”

The study supported the conclusion that “induction of labour through oxytocin administration does not increase the risk of autism spectrum disorder in the child.” However, Menashe and Dinstein’s own studies in Israel found an association between autism and the use of general anesthesia during caesarean sections.

“Having a C-section with general anesthetic increases the risk of diagnoses of autism in offspring by 60% compared to natural birth,” Menashe told the Independent. Because general anesthesia in C-section is infrequently used, that risk is low, but consistent, he added.

Menashe, Dinstein, Oberlander and Iarocci are excited to reunite in Vancouver in May because they all have access to population health data that allows them to compare their results. Such comparisons are especially valuable given that autism rates are increasing the world over.

Menashe said the rate of autism is 2% in Israel and Canada, and more than 3% in the United States. “We know a big portion of this increase is due to increased awareness among parents and caregivers, but we don’t know if that explains everything,” he said.

Autism is highly heterogeneous, he continued. “Every child is different and no two children present exactly the same autism symptoms. We believe the causes of autism are also very heterogeneous, and that’s what makes research so complicated, but also so interesting.”

Because of that heterogeneity, research requires collection of data from large populations. At the Azrieli National Foundation for Autism Research, Menashe and Dinstein work with nine clinical centres to collect data.

“A major advantage we have in Israel is our access to families’ medical records,” Menashe explained. “We ask families from those clinics to participate in genetic studies, through which we try to identify the genetic causes of autism.”

Menashe, Dinstein, Oberlander and Iarocci meet monthly by Zoom to discuss their findings. By collaborating, the four researchers can compare Israeli findings to those in British Columbia.

“The comparisons make our research more powerful,” Iarocci said. “They allow us to see what’s the same and what’s different cross-culturally.

“Our goal with autism is early identification, early diagnosis, and offering interventions that are effective,” she continued. “When we collaborate, we can compare very large data sets and, without those comparisons, you can’t really answer these questions meaningfully.”

“We’ve had a very productive collaboration so far, and what makes it especially important is the cross-jurisdictional research we can do,” Oberlander said. “There are few jurisdictions in the world that can do this effectively, but Israel and BC are two of them. It’s a wonderful collaboration, a great model, and we’re looking forward to seeing them in Vancouver in May.”

While here, Menashe and Dinstein will participate in an invite-only parlour meeting on May 4. Those interested in attending should contact David Berson, executive director, BGU Canada, British Columbia & Alberta, at [email protected].

Lauren Kramer, an award-winning writer and editor, lives in Richmond

Coping with loss, grief

The creative team of Bema Productions’ staging of Rite of Passage, with director Zelda Dean (centre). (photo from Bema Productions)

Victoria’s Bema Productions is staging Rite of Passage, a story of family, grief and coming of age by Los Angeles-based playwright Izzy Salant, at Congregation Emanu-El’s Black Box Theatre March 19-30.

The play centres on Harold, an autistic youth preparing for his bar mitzvah. His mother is suddenly absent and others are not sharing with him why she is not there. Harold’s father struggles with whether he should tell Harold the truth.

“The complex and incredibly human characters go through terribly hard times, yet handle it with grace and humour, even when things are in turmoil and the stakes are high,” Dean told the Independent.

At a young age, Jesse Wilson, who plays Harold, became involved in the local theatre scene that worked with the Victoria Society for Children with Autism. Noticing his passion for the arts, his mother encouraged and supported him in taking classes and performing.

Wilson appeared in Bema’s 2019 production of O My God, in which he played the autistic son of the lead character. He has also performed with a Victoria-based summer Shakespeare company.

“Because autism presents in such a diverse way, depending on the individual, I worked closely with Jesse, who is on the spectrum, to ensure that we portrayed the character in an honest way,” Dean said.

Salant, who will be in Victoria for opening night, said the play follows his family’s story. His mother died by suicide in 2007, and he had written extensively about the experience and his grief. But, he said, he had not explored his family’s grief as well.

“I sat down with my father and aunt for around six hours in the fall of 2016 and, later that same year, I wrote the first draft of the play in a playwriting class as a sophomore at the University of Massachusetts Amherst,” Salant, a journalist and social media manager at Jewish News Syndicate, told the Independent.

Rite of Passage playwright Izzy Salant. (photo from jns.org/writers/izzy-salant)

At the time, the play was called From the Point of View of a Journalist. Several drafts later, it became Rite of Passage. After numerous workshops and rewrites, the work remains focused on the central premise of how to move forward amid grief.

In 2020, at the start of the pandemic, Salant and his writing partner, Ryan Dunn, posted Peace Talks on New Play Exchange, a digital library. Written in 2019, the play explored the Arab-Israeli conflict and how it extended to college campuses.

Shortly afterward, Dean reached out to them asking about rights. Bema performed the piece on Zoom and, later, live at the Victoria Fringe Festival in 2022.

“My working relationship with Zelda has been amazing and she’s served not only as an amazing confidant and director, but mentor,” Salant said. “So, when I told her about Rite of Passage, she was overjoyed. She watched a live reading of it via Zoom back in 2022 and told me she wanted to do the play, and, three years later, after many rewrites and discussions, here we are.”

The first full reading of Rite of Passage took place at the University of Massachusetts in 2018, and Salant produced it the same year. During the pandemic, he met Noah Greenstein, an actor and theatre producer from Boston, and sent him the script. Punctuate4, a company for which Greenstein associate produced, liked the script and organized different readings throughout the United States.

Regarding the Victoria production, Salant said, “I’ve been incredibly involved from a writing standpoint. I’ve had almost weekly calls with Zelda about what’s working, what may need to be tweaked, rewritten, etc. The script has gone through around three draft changes from the time Zelda told me she was going to perform it this season to the show that you’ll see live.

“I’m incredibly grateful to Zelda for putting on this production, as I am to Punctuate4 for all their work, in part because numerous other theatres in my career have told me they loved the play but don’t know if they could realistically stage it, somewhat because Harold is autistic.”

Besides Rite of Passage and Peace Talks, Salant has written Balagan, The Scenic View and Unrequited. He also has penned several short plays and one-act plays, including 2082, which follows two best friends on a road trip to New Mexico in the aftermath of a breakup. It premiered in 2023.

Currently, Salant is putting together a piece titled Catatonic, which his friends have called “Zionist Angels in America.” It’s a two-part play about the post-Oct. 7 world and Salant’s experience covering it as a journalist.

Salant is a member of the Dramatists Guild and the Alliance of Jewish Theatre. He is a graduate of the Kennedy Centre Playwriting Intensive and an Abby Freeman Artist in Residence at the Braid, a nonprofit Jewish literary organization in Santa Monica, Calif.

“I consider myself a Jewish artist through and through. Judaism is a core of my identity and I never want to shy away from expressing it,” Salant said.

Tickets for Rite of Passage can be purchased through the Bema Productions website at bemaproductions.com.

Sam Margolis has written for the Globe and Mail, the National Post, UPI and MSNBC.

Community milestones … Chodos, Louis Brier Home & Weinberg Residence, & Barclay

Amy Chodos, a Grade 4 student from Vancouver Talmud Torah, was chosen as the winner of ADI’s fourth annual Make the Change Challenge. (photo from ADI)

In its fourth year, ADI’s Make the Change Challenge STEM accessible design contest drew more than 254 entries from students across North America, but Vancouverite Amy Chodos secured the contest’s $1,000 grand prize by envisioning a simple application that can make the world a more accessible place for people struggling with ADHD and other neurodevelopmental disorders.

Run by ADI (adi-israel.org), Israel’s network of specialized rehabilitative care for those touched by and living with disability, to mark Jewish Disability Awareness, Acceptance and Inclusion Month (#JDAIM) in February, the contest promotes “selfless STEM” and encourages students to hack the modern world to help people with disabilities overcome the challenges that hinder their independence and inclusion.

Chodos, a fourth-grade student from Vancouver Talmud Torah, drew from her own challenges in the classroom to conceive of the Step-O-Maker, an app that uses artificial intelligence to record complex spoken instructions and then break them down into easy-to-follow checklists that can guide students through an entire process.

“As someone with ADHD, I find that starting tasks is often overwhelming, and I need help to understand where to begin. My mother teaches children with hearing loss, and I realized that an app like this could also help her students in the classroom,” explained Chodos. “I wanted to create something that could help a lot of people by making listening and understanding easier in class and making learning more fun and enjoyable.”

Instead of developing prototypes, contest entrants were asked to prepare compelling presentations that clearly explain how the original solutions they are envisioning would solve the persistent accessibility issues they choose to tackle. Chodos prepared a PowerPoint presentation that clearly explained her challenges and brought her inspired solution to life.

“Year after year, our ADI Bechinuch (ADI in Education) disability inclusion programming spotlights the inaccessibility of our world and our communal responsibility to make a change,” said Elie Klein, ADI’s director of development for the United States and Canada. “From November through February, students from our partner schools across North America become true agents of change while researching and developing original accessible design ideas in order to participate in our STEM contest, and the results are always awe-inspiring.

“We are so impressed by Amy’s poise and creativity, and the brilliant simplicity of her idea,” continued Klein. “But it’s clear to me that this exceptional young inventor always saw beyond the contest. At just 9 years old, Amy is on a mission; she genuinely wants to see this app developed so it can start to help people. This kind of leadership is what ADI Bechinuch is all about.”

More than 40 Jewish schools across North America used the ADI Bechinuch programming this year, employing the in-class activities, virtual tours and STEM contest to encourage the next generation of Jewish leaders to see the world through the eyes of others.

On Feb. 25, ADI’s panel of experts, including members of ADI’s professional staff, innovation journalists and specialists in the field of accessible design, met with the contest’s top-five finalists and their parents and teachers via Zoom to discuss the entries in greater detail. Following an uplifting discussion, the proceedings concluded with Amy Chodos being chosen as the contest winner and presented with the $1,000 prize, a gift from the Avraham and Esther Klein Young Entrepreneurs Fund.

To learn more about ADI, visit adi-israel.org.

– Courtesy ADI

* * *

Louis Brier Home and Hospital and Weinberg Residence (LBHH&WR) has officially been recognized as a 2023 Nonprofit Employer of Choice (NEOC) Award Recipient for its commitment to providing an exceptional work life experience for its employees.

“I am so proud and grateful for us to have received this recognition award, now four years in a row, from 2020 to 2023. It’s incredible how much our work culture has improved over the last four years,” said Loren Tisdelle, director of human resources in a special announcement held during the organization’s monthly Louis Brier LIFE Day. “The ‘Louis Brier LIFE’ is felt as soon as you walk into the building. Every year, we offer new and exciting programs while improving upon our current engagement initiatives. Last year, we launched Take Our Kids to Work Day and a masquerade ball, which were enormous successes. Engagement, inclusion and appreciation continue to be hallmarks of our work life at LBHH&WR.

“This is our award. Each and every employee makes LHBB&WR what it is today,” said Tisdelle. “We all come to work to make a difference, we actively engage in work life and, as a community, we make working at LBHH&WR a second-to-none employment experience.”

The LBHH&WR leadership team and its board of directors recognize the contributions and impact of its employees towards achieving the organization’s mission and vision to become a centre of excellence. It is through their hard work and dedication that the organization continues to make a positive impact on residents and families while upholding the positive reputation LBHH&WR has as a home and an employer.

More information about the NEOC Awards can be found at neoc.ca.

* * *

On April 2, just as National Autism Acceptance Month begins, Rowman & Littlefield will release the paperback edition of the multi-award-winning parenting and travel guide Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse by Dawn M. Barclay.

Dawn M. Barclay at a book signing for Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse, which will come out in paperback April 2. (photo from travelingdifferent.com)

In 2023, the hardcover and e-book edition won the Lowell Thomas Gold Award (guidebook category) from the Society of American Travel Writers Foundation, garnered first prize in the Maxy Awards (inspirational/self-help category), was a finalist in the Best Indie Book Awards in both the travel and parenting categories, and won honourable mention in ASJA Arlene Awards for Books that Make a Difference. Traveling Different also received a starred review in August 2022 from Library Journal, who called the book “an essential read, not only for parents of autistic or otherwise neurodivergent children but for all families.”

In Traveling Different, Barclay presents travel strategies and anecdotes from a range of sources. The heart of the book outlines suggested itineraries for spectrum families as well as venues that cater to the unique special interests that are characteristic of individuals with invisible disabilities, culminating with a guide of travel agents who specialize in special needs travel and lists of organizations that advocate for special needs families. (For more on the book, see jewishindependent.ca/invest-the-time-to-prepare.)

“I’m thrilled the book will now be available in paperback, which makes it more affordable for all families,” said Barclay, who has appeared on close to 100 podcasts and interviews on video, radio and television since the book’s initial launch. Barclay prints updates on her Traveling Different website (travelingdifferent.com), as well as exclusive content on medium.com.

– Courtesy Rowman & Littlefield

Invest the time to prepare

One of the ways to prepare a child for a vacation is to start small. For example, take them to a local aquarium or other nearby attraction to get them used to the idea of touring. (photo from Dawn M. Barclay)

Planning a successful vacation when you have a child with ASD, ADHD, bipolar disorder and similar issues takes time, patience and practise but, in the end, you can build good memories that will last a lifetime. More great news: these tips can work for neurotypical families as well.

Here are the basics:

Understand the challenge. All children crave routine and predictability; it’s their comfort zone. Travel draws them out of their zone and into the realm of the unfamiliar, leaving even neurotypical children anxious and inflexible. Your goal is to help the child preview aspects of the vacation long before the vacation begins, in order to establish expectations of a new routine with elements now made familiar.

Start small. Introduce the concept of travel by reading children picture books featuring their favourite characters in travel situations. (Your local librarian can recommend some.) Role-play various travel scenarios, such as going through airport security or hotel check-in. Programs like Wings for Autism can provide a dress rehearsal before the main event. Watch videos on YouTube or those provided by the travel supplier that show each aspect of the vacation, including the hotel. Consider creating a social story about each aspect of the trip and review it with the child regularly. And try “mini experiences” like an overnight stay at a relative’s house before a hotel stay, or “tours” to local zoos, aquariums or even a flea market – now relabeled as a scavenger hunt.

Get buy-in. Another way to create predictability is to give the child some say in aspects of the trip. Discuss potential autism-friendly or autism-certified hotels, resorts, theme parks and other venues with a professional who has done the research for you, such as a certified autism travel professional. Then present a few parent-approved vacation options to the child and ask them to choose. You can do the same for daily activities as you prepare your itinerary (either written or in picture form). That gives you a new “routine” the child can anticipate, one where they have a personal stake in its success. Also allow the child to choose some of the clothing they’ll bring and let them help you pack. Make them active participants in their own holiday.

Make it child-centric. Traveling with youngsters, be they neurotypical or neurodiverse, can never match the pace you set when traveling before they arrived. It’s no holiday for you if you’re lugging an exhausted child on your back through a theme park. Instead of trying to cram four or five stops into your itinerary each day, plan for one or two. Try to make some of those stops extra-special by feeding into the child’s unique interests. There are specialized museums around the country for lovers of trains, insects, dinosaurs, or whatever their passion. Then set aside the afternoon to decompress at the pool or in front of the television.

Weed out potentially upsetting stimuli. Many children on the autism spectrum have sensory issues. Try to anticipate potential overload and introduce some of the unique sensory experiences in advance. For example, if you live in warmer climes and you’re heading somewhere like Alaska, practise wearing heavier and layered clothing. Or, if your child hasn’t experienced a beach, buy some sand at a crafts store, lay out a tarp and let the child feel the sensation of walking on sand before leaving on your trip.

Pack a “go-to bag.” Pack a customized bag containing the child’s favourite toys, snacks, a change of clothes and a trash bag (for any soiled ones), anti-nausea medication, noise-canceling headphones, surprises in gift bags (think Silly Putty, pens, an Etch-a-Sketch), and a preloaded iPad with kid-friendly shows and games. Keep your bag accessible and dole out the surprises to provide distractions if overwhelm sets in or plans go awry.

Remember, kids are kids. Any child can grow bored, weary and have a meltdown. Parents who think ahead, prepare their child for the new experience and are equipped to alleviate any anxiety, will be able to smooth the way while traveling.

Dawn M. Barclay is an award-winning author who has spent a career working in various aspects of the travel industry. She started as an agent with her parents’ firms, Barclay Travel Ltd. and Barclay International Group Short-Term Apartment Rentals, and then branched out into travel trade reporting with senior or contributing editor positions at Travel Agent Magazine, Travel Life, Travel Market Report and, most recently, Insider Travel Report. Her new book is Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse (Rowman & Littlefield Publishers, 2022). Learn more at travelingdifferent.com.

Several JNF projects advance

JNF Pacific region executive director Michael Sachs, left, in a meeting at Aviv House for autistic adults in Israel. (photo from JNF-PR)

Three Israeli projects supported by the Pacific region of the Jewish National Fund of Canada are advancing well, according to Michael Sachs.

Sachs, executive director of JNF Pacific region, visited the initiatives July 7-18. He was joined on the Israel trip by local JNF supporters Lisa and Mike Averbach. The trio surveyed projects in Rishon LeZion, in Jerusalem and at Nir Galim, a moshav near Ashdod.

The project in Rishon LeZion, south of Tel Aviv, is a women’s shelter that has faced challenges in reaching completion. In collaboration with the Israeli group No2Violence, the facility was supported by two Negev dinners in 2016 – one in Vancouver, honouring Shirley Barnett, and one in Winnipeg, honouring Peter Leipsic.

The shelter is envisioned to welcome 10 to 12 families and provide victims of domestic violence with a safe environment where they can access therapy, secure income and new housing.

Emergency shelter for victims of domestic violence is gravely lacking in Israel, where it is estimated that 65% to 70% of women and children escaping domestic abuse cannot access alternative housing due to lack of availability.

“I wanted to go and see with my eyes, with my feet on the ground, how it’s progressing,” said Sachs of the project. “Finally, shovels have started going into the ground and the foundation has been laid. This project, it had been stalled for multiple reasons, COVID included, but I wanted to go and see the progress because we have a commitment that we make to our donors in our community to fulfil the project no matter what.”

photo - Mike Averbach, left, and Michael Sachs at the construction site of the Vancouver/Winnipeg-supported women’s shelter in Israel — Mike Averbach, left, and Michael Sachs at the construction site of the Vancouver/Winnipeg-supported women’s shelter in Israel. *(photo from JNF-PR)*

One of the things that impressed Sachs most about the shelter is that it is adjacent to a community centre.

“For women and children who are in crisis, the ability to have a community centre, a place to go, a place for their kids to go, is extremely important, on top of just the safe haven,” he said.

Last year’s Negev campaign in the Pacific region raised funds for ALUT, the Israeli Society for Autistic Children, to renovate Aviv House, or Beit Aviv, in Jerusalem. This “home for life” for autistic adults was established in 1992 and is home to about 14 residents who require assistance in aspects of everyday life.

The building, more than 50 years old, was not wheelchair accessible and had infrastructural challenges. “It needed a lot of work,” said Sachs. The project, championed by honorary project co-chairs Penny Sprackman and David Goldman, saw a new roof put on the building, new bathrooms and doorways, among other upgrades.

Autism has co-morbidities and one of the residents at Aviv House has what is described as the most complex case of epilepsy in the state of Israel.

“This individual had not been able to have a real, proper shower until the renovation,” said Sachs. The renovated facility allows an assistant to accompany the resident in the new shower. “That’s just one example of how it made a difference,” he said. “The effect that we are having on the life of these individuals is immense.”

The ALUT project was especially meaningful for Sachs, he said, because it was the first initiative that took place after he became regional executive director, in April 2021. The fact that it also raised autism awareness in Canada was a bonus, he added.

A third project that Sachs and the Averbachs visited was Beit Haedut, the Testimony House Museum, on Moshav Nir Galim. The museum, located in a community founded by survivors of the Holocaust, focuses on the lives survivors made in the state of Israel.

This project is the focus of the current Pacific region Negev campaign and will involve an especially meaningful Vancouver component. In an interactive space, Vancouverite Marie Doduck, a child survivor of the Holocaust, will present virtually to visitors about her life. She will be the only English-language presenter in the virtual space, meaning that every Anglo visitor to the museum will “meet” her and hear her testimony.

Sachs has heard the question before: Why a Holocaust education centre so close to Yad Vashem, the world’s foremost education, commemoration and research centre on the topic?

“My answer is, why not?” he replied. “Why not have more places teaching people about the Holocaust, the tragedy that happened? It’s our responsibility to make sure that more and more of these centres are supported and able to function and teach a population that is starting to forget. It’s not that because you have one, you can’t have the other.”

The quality of the museum is also significant, he said: “It is a Holocaust centre that, in my eyes, punches above its weight class.”

Being close to Ashdod, where many cruise ships arrive, and near the Negev Desert, the location is also easily accessible for visitors.

Sachs hand-delivered Doduck’s recorded testimony to the museum. He credited the Vancouver Holocaust Education Centre for its assistance in making the technically complex project possible.

Returning from his first trip to Israel as JNF Pacific region executive director, Sachs was rejuvenated.

“Most people come back from Israel and they’re drained,” he said. “I came back with a newfound energy because, when you see the fingerprint JNF Canada has on the state of Israel and you see the efforts, the progress, the impact that our local community – our tiny little local community – is having on the ground there and for the people in Israel, it’s awe-inspiring. It really is. You come out of it and you are more energized than ever to continue to make a difference.”

Lance Davis, chief executive officer of JNF Canada, commended the Pacific region in a statement to the Independent.

“On behalf of JNF Canada, I am so proud that we have advanced two key projects for our organization, the Vancouver/Winnipeg women’s shelter and the renovation of the Aviv House supporting autistic individuals,” said Davis. “Thanks to the generosity of donors from the Pacific region, we are able to help build the facilities that will transform the lives of vulnerable Israelis in a profound manner. Our JNF supporters can take great pride in the fact that together we are building the foundation for Israel’s future.”

Due to COVID, JNF has not held a Negev Dinner in Vancouver since 2019, opting instead to run campaigns without the traditional gala event. Sachs hopes 2023 will see a return to normalcy.

“God willing, we’ll all be able to be back together next year for a wonderful and beautiful Negev Dinner with a wonderful honouree,” he said.

Battling over-diagnosis

Dr. Shoshana Levin Fox’s An Autism Casebook for Parents and Practitioners: The Child Behind the Symptomswill hold you spellbound. Section I is titled “Children.” These first eight chapters are the stories of Jack, Sasha, Annie and others (all the children’s names used are pseudonyms) – children who came into the Feuerstein Institute after having been diagnosed as autistic. They exited with new hope, not only for themselves, but for their parents, who needed their own emotional propping up.

Levin Fox is a psychologist and play therapist who has worked with children for more than 30 years. In addition to lecturing and giving workshops in North America, Israel and Europe, she worked for 25 years in the Feuerstein Institute of Jerusalem, founded by the late Sorbonne-educated Prof. Reuven Feuerstein.

Levin Fox lived for nearly 20 years in Canada. She completed a master’s at Simon Fraser University and a doctorate in counseling psychology at the University of British Columbia. She worked for many years as a counselor in the Special Services to Children and Families program of the Association of Neighbourhood Houses of British Columbia. Levin Fox was awarded a Social Sciences and Humanities Research Council of Canada post-doctoral fellowship, which enabled her to do research and practical work in the field of autism at the Feuerstein Institute. Coincidentally, for many years, Hadassah-WIZO Canada were prime funders of the institute’s programs related to autism.

I recommend the book, not just for the moving stories of the children who were saved from what proved to be inaccurate assessments, and not only for the intriguing descriptions of the practices of the Feuerstein Institute, which Levin Fox combined with the DIRFloortime method. This book should be read for its critical message to parents who have received an autism diagnosis – or one of learning disabilities, ADHD, or other emotional, cognitive or developmental challenges – for their son or daughter: Believe in your child. Talk to your child. Keep looking till you find her the best and most appropriate help and hope. Don’t let the “experts” get you down, because a true expert will find the formula to lift you – and your child – up.

The idea of plasticity of the brain, writes Levin Fox, entered mainstream medicine several generations after Feuerstein had intuited and created materials and methods based on that reality. Levin Fox decries the fact that “the diagnosis of autism is used as a sacrosanct truism…. I have found that the term ‘autism,’ as it appears commonly in the field, in actuality is being used to describe children who suffer from a vast range of communication difficulties, from extreme shyness to psychotic conditions and just about everything in between.”

The children whose stories are recounted in this book all made significant progress. Levin Fox writes, “Not every child began to speak fluently, to learn at a normative level and to play happily with friends…. However, it can be safely and honestly stated that, inspired and mentored by the professor, my colleagues and I made a huge difference in the lives of hundreds of children originally thought to be autistic.” She sees them, as a team, as having saved many lives.

Feuerstein sought to find a child’s latent strengths, and what he called “islets of normalcy.” Levin Fox explains that “islets of normalcy” include, among other elements, eye contact, human relationships, symbolic play, curiosity, humour and more.” She emphasizes that helping parents understand their children’s challenges, and not to be fearful and depressed about them, is part of the battle.

In Part II, “Theoretical Groundings,” Levin Fox gives the intense and thorough theoretical background to the success stories, which are plentiful. Six more case studies are interwoven in the text to help bring the theory alive.

This section also describes the roots of Feuerstein’s methods. He began by working with orphan children who had been traumatized after the Second World War, decided there were flaws in the standard diagnostic tests and, rather than focusing on performance, he focused on the child’s ability to develop learning processes.

“Current studies on brain plasticity … scientifically substantiates what [Feuerstein] proposed two generations ago – that brain cells are modifiable and respond to the stimuli of the environment,” writes Levin Fox.

One of my favourite stories is in Chapter 15, where Levin Fox talks about Ben, whom she first met when he was 5 years old. The end of the chapter, with the sub-heading, “Ben’s Epilogue,” describes a chance meeting between Levin Fox and Ben’s parents, many years later, at an airport. “Dr. Shoshana!” they called out, and his mother pulled out her cellphone. “The happy faces of Ben and his wife, holding their newborn son, smiled back at me,” writes Levin Fox. “For Ben, the paradigm-shift had indeed been life-saving.”

I found other words to describe the journeys and miracles of the children portrayed in this book: life-affirming.

And hope.

Toby Klein Greenwald is an award-winning journalist, educational theatre director, teacher and the editor-in-chief of wholefamily.com. A longer version of this article appears at jewishlink.news/features/47241-the-child-behind-the-diagnosis and elsewhere online.

JNF supports ALUT

(screenshot)

For this year’s Negev campaign, JNF Pacific Region has partnered with ALUT, the Israeli Society for Autistic Children, to renovate Aviv House, one of the first lifetime living facilities established by ALUT. ALUT has built and operates 18 “Homes for Life” in Israel, residences for individuals with autism who require supported living, that allow the residents to become integrated into the community to the greatest degree possible and provide for lifetime care in a family-type setting.

Aviv House (Beit Aviv) was established in 1992 in Jerusalem and the 14 residents have been living there since its inception. Their ages currently range from 35 to 49, and they all require assistance in almost all aspects of everyday life.

The physical house, now well over half-a-century old, is showing its age and has reached the point of risk. For example, the walls are crumbling and the sewage lines are regularly clogged; the building is not wheelchair accessible.

For more information and to watch a video from the campaign’s honorary co-chairs, Penny Sprackman and David Goldman, visit facebook.com/jnfvancouver. You can also contact the JNF office at 604-257-5155 or [email protected].

On autism and being Jewish

My Jewish identity is something I have always grappled with. Attending Jewish day school, I felt not only like the outcast of my entire class, but of the entire school, and it took an enormous toll on my mental health.

My peers would always pose the question, “Why are you so weird?” or “Why are you so different?” and, at the time, I didn’t have the answers for them. When I bravely confronted them as adults, they wrote it off as “we were just kids” instead of sincerely apologizing.

As an adult, I still suffer from the effects that these words and actions had on my young, developing brain, though I realize that expecting those apologies is unrealistic. The ironic part of it all is that many of these people have gone into professions where they actively work with children. I sincerely hope that they have learned from their past and consider imparting the kindness and acceptance that I didn’t receive from them to the impressionable youth they are teaching.

Getting my autism diagnosis in 2018 was the catalyst for me to understand myself and make sense of my traumatic past and commit to creating the change I wished I had experienced when I was younger. I still hearken back to my youth, though – where, every single day, I was reminded of the biblical teachings that were supposed to impart good values. I didn’t experience that and that’s why I oftentimes grapple with my Jewish identity.

I identify as being a Jewish atheist, ethnically Jewish or a humanistic Jew. These terms prove challenging when I am attempting to express myself to other people and explain how being part of a minority group echoes a lot of the same sentiments and barriers that being openly autistic has had for me.

As part of the activism and outreach I have engaged in, I continually see harmful images being used. I also regularly experience how dismissive people – not just within the Jewish community, but everyone – are when I tell them these images remind me of the important work that still needs to be done.

For example, Autism Speaks is a nonprofit organization that describes itself as being “dedicated to promoting solutions across the spectrum and along a life span for needs of people with autism spectrum disorder and their families.” It has, in collaboration with Google, a genome database called MSSNG. While their stated aim is to “speed the development of more effective and personalized interventions for autism and its associated health conditions,” there are many ethical issues with the collection of genetic material. And that a group like Autism Speaks (not to mention Google) is collecting these data concerns me, especially, because Autism Speaks has at least one video that personifies autism as an evil force – and only recently has the group stopped using the term “cure.” The change in language notwithstanding, their goal remains the same, and that is to eradicate autism. While this may seem laudable to some people, to me, the only way to reach that goal is to ensure that autistic people are not born. Autism should not be considered a disease, but rather as a neurotype.

A blue puzzle piece, with a little pink at the bottom, is part of the Autism Speaks logo. It is mostly blue because it was initially thought that only boys could be autistic, but a lot of women and gender-diverse individuals like myself are autistic. Colour aside, the puzzle piece symbolizes that something is broken or needs fixing, or that something is missing. I consider this narrative harmful, which is why I speak out against it.

I also find myself trying to correct those who attempt to dictate what is a “proper” way to communicate. To choose a communication style for someone else, when you don’t have the lived experience of being neurodiverse – and being frequently berated for the way you speak to others – is not acceptable. Unless you have experienced the hardships that come along with communication, then you should take the opportunity to learn before you speak. Knowing that not all disabilities are visible is an important thing to consider.

Within the autistic community, I have also had challenges when speaking my mind. For instance, I was accused of silencing the voices of Jewish people of colour when I expressed the opinion that being Jewish does not necessarily equate to being part of white privilege, a concept that is heavily debated in our community. I don’t profess to have all the answers, I am constantly learning and adapting to all the information that I am exposed to. But, to give an example of what I’m grappling with, I recently responded to an apology put forth by a prominent autistic activist, Lydia X.Y. Brown, who writes the Autistic Hoya Facebook page. They apologized for including “white Ashkenazi Jews” in a publication that was to centre on “racialized autism.” They specifically said, “We published a few people who are white Ashkenazi Jews and not Jews of colour or otherwise people of colour at all.”

I often wonder, as a Jew, where my place is, what I should be identifying as. For me, a big part of it is that I have faced antisemitism in my life and people have told me they can tell I am Jewish by my physical appearance. So, when someone makes a comment like Brown did – singling Jews out and making it seem like we are less than, while trying to simultaneously positively amplify the diversity of autistic people, it is hurtful.

My response to the post was a suggestion as to how the apology could have been worded more respectfully: “We included ethnic groups that some folks did not feel were appropriate for our publication. Moving forward, we will be more perceptive to the suggestions of others and pivot to be more inclusive and considerate to those we have overlooked.” This would have been more appropriate, rather than focusing on an ethnic group that already faces enough discrimination. I believe that singling out a marginalized group, no matter what the perceived colour of one’s skin, is inherently wrong.

In another situation, because of the controversy surrounding Judaism and whiteness, I felt I had to sever ties with an organization and some individuals who, instead of accepting my voice and agreeing to disagree with me, pointed out the hardships I had created due to my own personal struggles and attempt to grapple with my identity.

Being autistic is hard. Being Jewish is hard. Being both is even more difficult, and trying to navigate this world while being both is honestly not something I’d wish on my worst enemy. But, what I can do is use my voice and do as much good as possible with the cards I have been dealt.

I have been the recipient of two arts grants through the B.C. Arts Council and I actively create art, run an Etsy store (retrophiliac.etsy.com), have a website (navigatingjourney.com) and am all over social media. I strive to create a very open dialogue and provide a lot of free emotional labour, trying to have the conversation about being autistic. Parents of autistic children and those who purport to be our advocates need to support autistic adults, instead of co-opting our voices and acting like they know better. As far as autism is concerned, acceptance is more important than awareness, because the acceptance narrative is not one over which autistic people have control.

Margaux Wosk is a small business owner, content creator and artist living in the Greater Vancouver area. April was Autism Acceptance Month.

Complexities of autism

Israeli neuroscientist Dr. Ilan Dinstein was in Vancouver last month to talk about autism research. (photo by Adele Lewin)

Neuroscientist Dr. Ilan Dinstein was in Vancouver last month to share research and expand knowledge on best practices internationally. An associate professor of psychology and cognitive and brain sciences at Ben-Gurion University of the Negev (BGU), Dinstein is the director of the new National Autism Research Centre (NAC) in Israel.

David Berson, executive director of the Canadian Associates of BGU for British Columbia and Alberta, told the Independent: “CABGU was delighted to be a part of hosting Dr Ilan Dinstein in Metro Vancouver. This visit was spearheaded by Dr. Grace Iarocci, Dr. Elina Birmingham and Dr. Sam Doesburg from SFU [Simon Fraser University] and Dr. Tim Oberlander from B.C. Children’s Hospital.

“Ilan Dinstein is a true reflection of the pioneering spirit that is unique to the Negev region of Israel, where, over the past five years, clinicians from Soroka University Medical Centre and researchers from Ben-Gurion University of the Negev have organically come together to collaborate for the betterment of all of the residents with ASD [autism spectrum disorder] in the region.”

Dinstein spoke with the Independent about the new centre and the purpose of his visit to Canada.

“We started the centre five years ago, to try to understand different causes of autism,” he said. “Autism is not one disorder. There are different sub-types of autism, with different possible roots and risk factors. Some of those factors are biological or genetic; others might be environmental. For example, a premature birth might be a risk factor in the child developing autism. Or the age of the parents – a child of older parents might have a higher risk of autism diagnosis than if the same parents were younger. We at the centre are trying to discover how the combination of genetic and environmental issues affects autism development.”

According to Dinstein, one of the reasons for the creation of the centre was the way science is funded in Israel. “The funding usually comes for one specific question,” he explained, “but autism is a complex, systematic disorder and it needs many facets of study, measurement and research; it needs collaboration and sharing of information. At the centre, we are able to combine different fields of study with the clinical applications, as we work together with the Soroka medical centre.”

The scientists of the NAC study autistic patients from different multidisciplinary angles: neuroscience and cellular biology, language pathology and motor tracking, even facial features.

“The truly unique thing is that we do all our studies inside the hospital,” Dinstein said. “Parents come in with their children, usually when the children are about 3 years old and the parents and the children’s teachers notice the kids’ uncommon behavioural patterns. The diagnosis of autism usually takes four visits. During those visits, we work in collaboration with the doctors, measuring various characteristics of the child’s development to arrive at the right diagnosis.

“We also started a database of all our patients, so we have a centralized well of knowledge about how various biological, cultural and social factors might contribute to autism development.”

Of course, not all of the parents agree to have their child added to the database, but Dinstein said that their recruitment rate is about 80%.

After the diagnosis, the scientists participate in determining a personalized treatment program, based on their research. “Such a program might include teaching the children useful behavioural habits, helping them with language acquisition or providing occupational therapy,” explained Dinstein. “Some autistic kids are very agitated and certain motions, like spinning, might calm them down. Sometimes, autistic children need to learn basic skills: how to dress themselves or brush their teeth.”

Pharmaceuticals can also help children cope with autism, but Dinstein said that only about 10% of patients use medications.

At the NAC, the scientists don’t treat patients, but rather study and make recommendations, develop new technologies and new methods of dealing with the disorder. Working together with clinical professionals, they hope to contribute to a higher rate of success in treatment.

One of the most important aspects of Dinstein’s and his colleagues’ work is an annual follow-up on the patients in the database. Families are required to come back once a year after the initial diagnosis, so the service providers can see their progress, determine what worked and what didn’t, and adjust their recommendations accordingly.

“We are still in the process of enlarging this project,” said Dinstein. “We want to open other locations in Israel, make our database to cover the entire state of Israel.”

The centre’s autism research, in particular its database of patients with autism, inspired interest locally, from scientists and clinicians to families and service providers. The invitation for Dinstein to visit Vancouver came from a range of people.

“Your researchers want to create a similar database to ours, Canada-wide,” said Dinstein about his presentation at the Children’s Hospital. “I met with scientists from UBC [University of British Columbia] and SFU, even some from Victoria. I also met medical professionals, parents, some service providers and stakeholders. I see these meetings as the beginning of a close relationship between autism research in Israel and in Canada. There are similarities there, but there are differences, too. Both countries have different ethnic maps, cultural traditions and genetic variations. We all want to know how such diversity affects autism.”

Olga Livshin is a Vancouver freelance writer. She can be reached at [email protected].

Learning to live with autism

Owen Suskind is the subject of the documentary Life, Animated. (photo from A&E Indiefilms)

Children’s films – especially the animated variety – always make sure to highlight the moral of the story. But very few children embraced those lessons as deeply and thoughtfully as Owen Suskind.

Now in his mid-20s, Owen had a normal East Coast childhood until he suddenly stopped speaking when he was 3. His parents, Ron and Cornelia, tried every strategy and tactic to treat Owen’s autism, but he remained uncommunicative and seemingly unreachable.

Ron Suskind, the bestselling author of such nonfiction books as The Price of Loyalty: George W. Bush, the White House and the Education of Paul O’Neill, relates in the beautifully crafted and irresistibly touching documentary Life, Animated that he was stunned one day to hear Owen repeat a snippet of dialogue while watching a Disney animated movie.

It took a few years, however, to figure out that Owen was using the characters, behavioral cues and ethical directives of Disney films to make sense of and deal with his own experiences. Benefiting from the dedicated attention of his mother and various tutors, Owen regained the ability to speak, interact with other people and thrive.

Adapted from Suskind’s 2014 book, Life, Animated: A Story of Sidekicks, Heroes and Autism, the documentary will see four screenings at Vancity Theatre Aug. 5-11 (viff.org). It isn’t a stretch to predict that it will be a strong contender for the year-end shortlist for the Academy Award for documentary feature.

Unexpectedly, when Ron, Cornelia and Roger Ross Williams – the first African-American director to win an Oscar, for the documentary short Music by Prudence – sat down for an interview on a Sunday morning in early May, before they presented Life, Animated at the San Francisco International Film Festival, the conversation centred on Owen’s bar mitzvah.

“When he was about 11,” Cornelia recalled, “his therapist gave me a book, which no one’s ever heard of, called God and the Autism Connection. It talks about how so many, many of these kids operate on a different emotional plane.”

“He always had been spiritual,” Ron added. “In some ways, he preserved sort of a notion of God being there within reach that kids have but, even as he grew in sophistication, he didn’t give that up. He always had this way in which he was not encumbered by the usual doubts or hesitations that become the common currency of most people’s lives as they grow.”

Ron and Cornelia (who is Catholic and did not convert) belonged to a Reconstructionist synagogue in Bethesda, Md. Owen’s bar mitzvah tutor was Miriam Eisenstadt, whose mother was the first woman to be bat mitzvahed in the United States and whose grandfather was the founder of Reconstructionism, Mordecai Kaplan.

“The question was how would we get him up to the bimah and have him do what’s needed,” Ron said. “First, we had a problem where we didn’t know what movies to go to, because he really didn’t have much of a taste for The Prince of Egypt. It just didn’t work for him.”

So, Ron switched from one Exodus story to another, pointing Owen to An American Tale: Fievel Goes West. “Basically, it’s Eastern European Jews as mice,” Ron said.

At the same time, Owen embraced the part of his parashah that discussed the commandments a person should follow.

“He’s very rule-oriented,” Cornelia explained. “He’s better now but he used to be very black and white, and rules are very important.”

On the bimah, Owen honed in on one rule in particular: never put a block in front of a blind person.

“He talked about that in his speech, the notion of special, and he broadened it,” Ron said. “He had the designation of ‘he’s a special kid.’ He said, ‘But I think God wants us to see everyone as special.’”

Williams said Life, Animated included a poignant flashback scene from Owen’s bar mitzvah until it was removed from one of the last cuts. Indeed, the director goes so far back with the Suskinds that he arranged for the editing of Owen’s bar mitzvah video. Consequently, it’s ironic and moving to see that the most savvy film buff in Life, Animated is Owen, who discerns and delineates the positive themes of Disney films to other autistic children and young adults.

At the same time that it recounts Owen’s childhood journey, the documentary follows his current path to living independently in a residential community with support.

“You can almost feel his desire – I think it’s deep in all of us – to arrive at a place of faith, of constancy, of a sense of a universe that is coherent, and a place of love and possibility,” Ron said. “He was searching for that on his own. He was often using the best of Disney to help support that architecture, which actually is a pretty good pick, if you think about it.”

Michael Fox is a writer and film critic living in San Francisco.