autism

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.

Early detection is key

Left to right: Dr. Alon Friedman, Jayson Dzikowicz, Dr. Michael Ellis and Benedict Albensi. (photo by Rebeca Kuropatwa)

It has been known for years that there is a connection between brain injuries and diseases like Alzheimer’s, autisms and epilepsy, but early detection and possible prevention still elude us.

This was the message Ben-Gurion University’s Dr. Alon Friedman relayed at a recent brain-injury panel discussion, hosted by the Canadian Associates of Ben-Gurion University in Winnipeg. A professor in the medical faculty at Dalhousie University, Friedman was joined by Dr. Michael Ellis of the Pan Am Clinic Concussion Program; Dr. Benedict Albensi of the University of Manitoba and St. Boniface Hospital; and Jayson Dzikowicz of the Blue Bomber Alumni Association. The discussion was moderated by Charles Laflèche of St. Boniface Hospital Foundation.

Friedman opened with remarks on the work being done in the field of brain injuries at BGU and broke the discussion into two topics: traumatic brain injury and brain deterioration due to age.

“The money that we as a community spend on traumatic brain injury and on the outcome is tremendous,” said Friedman. “Sport injury is only one small part of it. Mostly, it’s road accidents and falls.

“We are getting into the 21st century and the average [life] expectancy in Western countries is around 80-to-90-years-old. Most of us will live at least until 90 or 100. The price is that we will all probably die with a brain disorder.”

According to Friedman, what is clear with all of the diseases is that we lose a lot of brain tissue before we see any symptoms. “The main problem is that we don’t understand how the diseases are generated. [Over] the last decade, we are trying to look differently at the brain.”

Researchers are now starting to look at the brain as a whole entity, including different cells that interact and communicate with one another all the time.

“While the brain gets the most blood to supply it with the elements it needs, blood does not enter into the brain tissue normally,” said Friedman. “The brain has its own environment protected by what researchers call ‘the blood-brain barrier.’ This separation allows the nerve cells in the brain to act in a very accurate and stable condition, regardless of what’s happening in the blood. A brain injury occurs when this barrier is broken.”

BGU learned more about this barrier by studying a group of football players in Be’er Sheva. “The reason we did it with football players is we knew it would attract the media much more than others, unfortunately,” said Friedman.

To help the audience grasp what football players face, Dzikowicz, who is a former player, shared his experiences with the panel. He has had approximately nine concussions. “Usually, one is more than enough to take people out of sports,” he said. “In business, if you’re faulting, it’s a long process to replace you. In sports, your replacement is standing 30 feet away…. You’re heavily motivated to stay on the field despite injury.

“When it became an issue with me … if you ever rub your eyes a lot and you see those circles … when I had those circles permanently, and when I got hit in the head and they’d be pulsing and flashing for weeks on end, that’s when I got the message that maybe I should stop playing.”

In the 1990s, when Dzikowicz played the game, his coaches’ main reaction was to say that he had “had his bell rung.” Dzikowicz went on to explain, “You got two plays off, you got some smelling salts and you got tapped on the butt and sent back on the field.”

Run by Ellis, the Pan Am Clinic Concussion Program treats children who have had concussions – the program focuses on kids with head injuries. “It’s a very unique partnership between Pan Am, the Children’s Hospital and our provincial government – multidisciplinary care for the children of Manitoba with mild, traumatic brain injuries,” he said. “Patients with more severe injuries go to the Children’s Hospital. We see 40-60 children a week.

“Fortunately, the vast majority of children who sustain a concussion will recover within two to three weeks, but we know that there’s a certain proportion, about 30-40%, who will have symptoms that will last longer.”

Some kids will have headaches or visual/reading abnormalities, issues with balance or develop mood disorders. The focus of the Pan Am program is to bring together experts from various fields to meet the needs of each individual patient.

While collaborative research on brain tumors and Alzheimer’s is being conducted, less is known about the connection between concussions and epilepsy. About the connection between brain trauma and epilepsy, however, Albensi said, “There’s certainly very good evidence that head trauma can lead to neurodegenerative disease…. The question is how many patients with TBI [traumatic brain injuries] develop epilepsy?”

At BGU, the focus is on using MRI to get better pictures of brain injuries and comparing them with images of normal brains. At Pan Am, researchers are developing an MRI brain stress test and looking at blood flow within the brain.

All the panelists agreed that treatment would be more effective with early detection. “Unfortunately, if someone has full-blown Alzheimer’s, the chances of reversing and changing the situation is almost impossible,” said Friedman. “The only chance … is early diagnosis.”

One of the biggest hurdles is getting those who are experiencing memory loss to see a doctor early enough and for the doctor to send them to a specialist without dismissing the memory loss as “normal.”

“There is a lack of awareness, because people don’t think that there’s something to do,” said Friedman. “Patients can go to early diagnosis in every large hospital today. There is general advice to be made and practice for detection, for treating.”

“I think that what we agree on is that there is some risk in families,” added Albensi. “It’s basically impossible to predict if a parent had Alzheimer’s whether his/her son or daughter will have it. Early diagnosis is more important.”

Albensi explained, “What we study in my laboratory as far as the inflammatory response are transcription factors, which are specialized proteins involved long term in the inflammatory process. And, it’s getting the brain to turn off this inflammatory process, in my view, that is key to reducing the risk for these neurodegenerative disorders.”

“The brain can change itself any time in our life,” said Friedman. “The fact that we can learn means the brain can change, at any age. In any condition basically after a trauma, whether emotional or physical, I don’t think it’s that important, but it’s possible.

“Inside a person, stress is a very important factor against brain plasticity. If we are motivated to change our brain, we can find ways to do it and help ourselves.”

Rebeca Kuropatwa is a Winnipeg freelance writer.

Raising a network of voices

Ari Ne’eman was diagnosed with Asperger’s syndrome at the age of 12. He did not have an easy childhood, being forced to leave his Solomon Schechter day school and, later, being expelled from Camp Ramah.

He is now head of the Autistic Self-advocacy Network (ASAN), and serves as one of President Barack Obama’s appointees on the National Council on Disability. Earlier this year, he received the Ruderman Family Foundation’s $100,000 Morton E. Ruderman Award, which “recognizes an individual who has made an extraordinary contribution to the inclusion of people with disabilities in the Jewish world and the greater public, and is based on past achievements and the potential for future contributions to the field.”

photo - Ari Ne’eman — Ari Ne’eman *(photo from rudermanfoundation.org)*

In 2006, Ne’eman co-founded ASAN. “Too often in conversations about autism policy or public discussion, researchers and family members are given precedence over autistic voices,” he told the Independent about the need for the organization. “This is due to a tendency not to recognize that a self-advocate perspective is distinct and different from those of family members, providers or researchers.”

The goal of ASAN is to ensure that those on the autism spectrum are represented in the public discourse and have their own collective voice. “People with disabilities are often perceived as incapable of representing themselves or as being unreliable in being the narrators of our own experience,” he said. “Really, both of those perceptions are very inaccurate and unfortunate.

“Unfortunately, society has certain perceptions about people with disabilities – in particular of autistic people and people with developmental disabilities. This often leads them to seek out the voices of our family members or service providers rather than hearing our own voices.”

According to Ne’eman, many people believe autism is a recent epidemic or a tragedy and, as a result, focus on advocacy related to research around causation and cure. ASAN believes the focus should be on services, supports and rights protection throughout their lifespan.

“Many families have been exploited by groups that seek to sell pseudoscientific cures predicated on the idea that autism is somehow connected to vaccination, which has been very thoroughly discredited,” he said. “From our point of view, there’s a need to really debunk those myths and communicate more accurate information to families.”

Ne’eman said that different autism diagnoses can be given to the same person by different doctors, and that these can also differ depending on when in their life a person is diagnosed. “This is partly because, even though there’s tremendous diversity on the autism spectrum, there aren’t clear dividing lines when it comes to different diagnoses,” he said. “We have this idea that there’s this thing called

‘Asperger’s’ and this separate thing called ‘autism.’ But, in fact, there is no clear dividing line between the two. What we have is a single, very diverse autism spectrum.”

ASAN includes people across the spectrum. For example, they have members who need augmentative communication technology to communicate (cannot speak). “We also have members and leaders, like myself, who do [speak],” said Ne’eman. “We have some who can talk in some contexts, but not in others. Some members have intellectual disabilities or various forms of cognitive or behavioral challenges.”

The network has invested largely in leadership development, and is active in lobbying state governments to change the funding of disability services to a more inclusive model. “We are in the process of expanding our work with respect to bringing people to a more integrated form of service provision, and supporting people out of institutions and group homes,” said Ne’eman.

ASAN advocates for students with disabilities, whose treatment varies greatly between districts and schools.

“As a matter of federal law, students with disabilities have the right to receive a free and appropriate education in a least restrictive environment,” said Ne’eman. “There’s a real need for a stronger emphasis on supporting students with disabilities in the general education classroom.

“In adulthood, people with disabilities also have a right to receive services in the most integrated setting under the Americans with Disabilities Act,” he continued. “In the U.S. today, there are 13 states that have eliminated institutionalization for people with developmental disabilities. I’ve seen significant positive outcomes as a result. When you get down to it, people aren’t more disabled in New Jersey, which has a lot of institutions, than they are in Oregon, which has no institutions.”

ASAN also promotes equal wages for people with disabilities. “Right now, approximately 200,000 people with disabilities in the U.S. are paid less than minimum wage under the Fair Labor Standards Act,” said Ne’eman. “If you look at the provision that allows for subminimum wage, it dates back to the 1930s, when there was one set of assumptions about people with disabilities. Today, 25 years after the Americans with Disabilities Act, we have different assumptions.”

Ne’man said that the Ruderman Award “was particularly an honor because of the importance of the foundation’s work in the Jewish community.”

He said, “Growing up, like many Jews with disabilities, I experienced challenges in being accepted in Jewish communal life. Many people with disabilities have to leave Jewish day school and other Jewish communal settings because of an unwillingness to provide accommodations.”

Ne’eman put a significant amount from the award toward a new disability rights-related project that he is not yet prepared to discuss, noting, “Hopefully in the coming year it will become visible.”

Rebeca Kuropatwa is a Winnipeg freelance writer.