Tag: autism

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.