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February 10, 2024
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Parashat Mishpatim
A Celebration of Autistic Culture & Liberation
February 10, 2024 — 1 Adar I 5784
Temple Emanuel, Newton, MA
By Rabbi Shoshana Meira Friedman
Shabbat Shalom.
Thank you so much Rabbi Aliza, and thanks to the Inclusion Committee for inviting me.
This Shabbat, I’m going to share a personal story very different from the kinds of sermons I used to give when I worked in a congregation. I want to be clear it is my story. I recognize that in this room there are Autistic people and family members who have their own perspectives that may differ from mine. They are just as important and valid. We are a large and diverse community.
Three years ago, a neuropsychologist assessed our then 3-year-old son and called a few weeks later to tell us that was Autistic. I was so relieved. Our son was verbally precocious, made intense eye contact, and was very charismatic and social. He also loved being read a wall calendar or a Hebrew/English dictionary as a bedtime story, struggled with transitions and unpredictable meltdowns, and ran in circles around his preschool classroom here in Temple Emanuel, seeking sensory input he wasn’t getting. Bedtime could take 2 manic hours. Like our ancestors in this week’s parasha, my family was in an unknown wilderness, and we were ready to receive some Torah.
Except the Torah the doctor delivered to us didn’t seem right. He was recommending behavioral interventions focused on changing what our son outwardly did, with no interest in understanding the reasons behind our child’s struggles. As he spoke, my heart raced, and my body tensed. I thought about a white friend of mine in the process of adopting a Black girl. She had told me how she would be listening to the voices of Black adoptees of white parents – the people closest to her soon-to-be-daughter’s lived experience. I realized that while I completely trusted conventional doctors about vaccines and disease, I could not rely on their Torah to when it came to raising my Autistic son. I needed an Autistic Torah to guide my family’s journey through this neurodivergent land.
That night, shoulders tense after another day of meltdowns and difficult transitions, I opened my laptop to a parenting forum where someone recommended a Facebook group led by Autistic adults whose goal was educating caregivers of Autistic children. My heart lifted. Why hadn’t the doctor mentioned this?
For the next month, I curled around my laptop every evening like a glowing fire in the Sinai desert, listening to stories and perspectives that widened the narrow views of Autism I’d been fed by doctors and media.
I learned that the underlying different information processing that makes Autism distinctive leads not to a few narrow profiles, but to people who all have categories of difference and/or disability in a bunch of areas – social interaction, communication, repetition and routine, sensory processing, and cognitive processing. Contrary to stereotypes, these differences can be obvious to an outside observer, OR they can be internalized, camouflaged, and masked.
I learned that most pediatricians, therapists, and psychologists are not trained in anything but the stereotypical presentations of Autism, despite decades of research expanding our understanding of this complex neurotype. I learned that Autism is a dynamic disability – meaning that my son’s support needs would likely vary depending on the day, month, his accumulated stress, the environment. I learned that there is a global Autistic community that is de-pathologizing Autism, not that it isn’t hard to be Autistic, not that it doesn’t often co-occur with medical disorders, but that being Autistic isn’t something to try to fix. It’s a a valid though very challenging way of being human – a disability that comes in different levels of disability depending on the person, and that Autistics deserve accommodations and respect.
Most importantly, I learned that to be an ally to my Autistic son, my goal should be to gift him with a positive Autistic identity, and explore Autistic strategies that would help him regulate, communicate, meet his basic needs, and find delight in his life. I learned that to train him to act more neurotypically, especially at such a young age, would be training him to ignore the distress signals of his body, putting him at higher risk of abuse, depression, and addiction. I also learned that having a white Autistic child would allow me to make very different cost-benefit decisions about how to care for him, and that many parents of Black and brown Autistics do opt to train their children to mask their Autism from a young age – not because they are phobic of Autism, but because they are prioritizing their children’s safety in a country with horrific rates of brutality towards visibly disabled Black and brown bodies.
Applying the Torah I learned around that campfire of my laptop, we began to take our child to a neurodivergent-affirming Occupational Therapist who helped us interpret his meltdowns and opposition as communication about his legitimate sensory and nervous system needs. We began a daily “sensory diet” of tight hugs, popsicles, jumping, and rhythmic singing. We encouraged his passions – his special interests – and atypical modes of play. There were no sticker charts, rewards, or time-outs – only a shared determination to discover what regulated and delighted him as an Autistic person.
As we trusted his body, he trusted his body. By three-and-a-half, he could identify “I’m dysregulated.” By four, he could point to a picture of what would help him regulate, such as jumping, rest, or water. At five, when despite all the sensory accommodations we were offering he hit a stage of acute Autistic burnout, we realized he is PDA, a profile of Autism in which a person is born with an overactive threat response that impacts their ability to meet basic needs. After 5 years of not realizing he was PDA, the accumulated stress led him to a near-constant fight/flight/freeze mode in which he could not leave the house or meet basic needs.
Recognizing we were privileged to be able to do so with minimal financial strain, we pulled our panicking child from school, and I huddled around the laptop campfire again, this time to receive the specific Torah of PDA. We began Low Demand Parenting. We dropped limits on screentime. We turned his bedroom into a sensory gym. We got him on an effective medication. Our whole family embraced his special interest of Minecraft because we knew that special interests are key to Autistic healing and wellbeing. In essence, we refused to put the burden of change on our small child and his vulnerable nervous system. Instead, we focused on changing our parenting, our expectations, and his schooling.
And this Torah was truly a Tree of Life for us.
Ten months later, my son emerged from burnout. Only six years old, he is mastering skills that give him a fantastic shot at a healthy and fulfilling life, skills I honestly with more adults in the world knew: He’s learning how to respect and communicate his limits; how to learn, socialize, communicate, play, and self-regulate in ways that are native and healthy to his brain. He identifies as disabled, Autistic, and proud. Growing up with Autism so normalized in our home, he assumes many of his favorite YouTubers are Autistic the way my great-grandfather assumed that all brilliant people were Jews. I want to be clear, too, that he needs a huge amount of 1:1 support from me and my husband and will always be at high risk of another burnout, but his struggles and needs do not erase his pride in who and what he is.
Pride, acceptance, challenge, and disability can coexist.
This is liberation.
Now I want to share the other half of my story.
What I didn’t tell you just now is that when my son started Occupational Therapy, I loved every minute of it. As he played with his therapist, I rolled around on the gym mat, feeling the weight of my body press against the floor. I never wanted to leave when our time was up. At home, we bought fidget toys, more weighted blankets, a therapy swing. I used them more than he did.
I began to work on some memoir writing. I was filled with urgent questions. Why had I always felt fundamentally different from other humans? How could I master whole bodies of knowledge with ease but struggle to feed myself lunch? Where had my childhood belief come from that I had to save the world from environmental destruction… a belief so intense that it impacted my mental health for decades and every career choice I’d ever made?
Finally – and let me tell you, I am rather amused it took this long – I thought to ask myself if I might possibly be neurodivergent of some kind.
My research led me to a list of traits common in autistic women without accompanying cognitive disability. I read it with my mouth dropped open. There I was, on the screen: All-consuming passions. Feeling alien among humans. A fantasy of saving the world to make sense of my unexplained sense of difference. Huge empathy. Social anxiety. Digestive issues. Preference for teachers over peers. Attachment to objects. Synesthesia. The list was not a diagnostic tool, but I had 160 out of 180 traits. I confirmed my self-diagnosis through reading accounts from other late diagnosed Autistics, and even got a coveted clinical diagnosis at a center that specializes in assessing adult women.
By the time I learned I was Autistic at age 40, I had been an award-winning straight-A student, then educator, and then rabbi. I had excelled in every job I held and took great pride in my creative projects and my passion to make a difference in the world. I had also, throughout, struggled with people-pleasing, social exhaustion, panic attacks, burnout, an eating disorder, and debilitating empathy for any suffering animal or person. I had near-chronic jitters in my chest that I could not seem to calm. For twenty-two years I had sought help: psychiatry, Cognitive Behavioral Therapy, play-based therapy, trauma-informed therapy, couples therapy and Internal Family Systems. Along the way, I had collected diagnoses like stones in my pocket. Generalized Anxiety Disorder, Major Depressive Disorder, Panic Disorder, complex PTSD. In therapy sessions I was articulate and insightful, but it often felt like a performance, not to mention I was always jittery and exhausted after so much talking.
I never understood why my therapy wasn’t working better.
Now I knew.
Since I hadn’t known I was Autistic, I had kept exposing myself to the same level of social and sensory stimulation that was stressful, overwhelming, and ultimately panic inducing to my nervous system. It was like I was jogging on an inflamed ankle, talking to a therapist about it, then going out to jog again and wondering why the thing kept hurting. I had been receiving psychological interventions and diagnosis for what was, for me, fundamentally a nervous system disability. I had been wandering around the wilderness following the wrong Torah.
Over the past year, I have shed shame and confusion about myself like an old skin and grown a beautiful Autistic identity. The Autistic strategies I learned from other Autistics and my son’s Occupational Therapist have done more for my wellbeing in one year than 22 years of therapy ever did, combined: a positive Autistic identity and acceptance of my disability, connecting to Autistic community, organizing my life around my special interests, access to soothing sensory stimuation, lots of sleep and rest, accommodations for communicating and socializing, respect for routine, deep focus time, and respect for my nervous system’s limits without shame.
My joy and massive relief in my Autistic identity doesn’t erase my struggles, nor am I equating my struggles to those of more disabled Autistics. I am simply celebrating: I know who I am. I finally have the right user manual – the right Torah – for my particular brain and body. It is not an exaggeration to say that discovering I’m Autistic has been the single most healing thing to ever happen to me.
This is liberation.
In closing, this Inclusion Shabbat I want to say a word about the word inclusion.
In disability justice, the ancestors on whose shoulders I stand had to start with inclusion, because for centuries intellectually disabled people and people who couldn’t speak were quite literally thrown away from society in horrid institutions (or worse), excluded from basic needs like family, safety, education, autonomy, good food, hygiene and healthcare. Since that was our despicable starting point, the word inclusion is vitally important. All people are in the image of God. All people deserve dignity and to be included in society.
But once we understand this, inclusion can become problematic. It brings to mind some kind of normal that divergent or disabled people are being welcomed into. Come, let us include you in real, normal society.
I have some feelings about that.
See, I have the privilege of passing as non-Autistic. My whole life, I have been welcomed into neurotypical spaces. It’s a privilege I do not take for granted, believe me. But to tell you the truth, after 41 years of masking my Autism, I am little sick of it. Neurotypical spaces often exhaust and overwhelm me. I feel much safer in Autistic spaces these days – in my home, with other Autistic friends, in my online Autistic community. I want access to what I need to live well – I like the term accessibility a lot – but inclusion in what passes for normal isn’t really my goal. (Of course, I’m not saying it can’t be yours).
Similarly, before he burnt out, my child attended an “inclusion classroom” in public school. But it was actually a neurotypical classroom that had a few Autistic students in it. The school did not change the classroom, school day, or learning modalities to make it a healthy place for Autistic brains and bodies. Nor did they make any effort for inclusion to go both ways – to invite neurotypical children into Autistic modes of play, learning, and communicating. Instead, they spent most of their energy trying to get these young Autistic kids to conform to a neurotypical norms.
I’m not knocking the idea of inclusion classrooms – I support the broad concept. But inclusion of disabled people without social transformation around us just puts the burden of change right back on us. For Autistics, it can cause shame and very real damage. In my son’s case, “inclusion” in led directly to severe nervous system burnout by age 5. In my case, it took about three decades, but essentially the same thing happened.
What if our goal isn’t inclusion, but social transformation?
After all, we live in a society sick with speed and transient attention, a normative culture that is trampling all of our nervous systems, and not actually serving most of us well at all.
So, I’d like to try this on. I want to include you, regardless of your relationship to Autism – into the liberatory aspects of Autistic culture. I want to include you in the slower pace of life that most Autistic people need. I want to include you in having access to pleasurable sensory experiences, cozy places to rest, the courage to say no instead of accepting an invitation that would stress you out. I want to include you in respecting your body and brain’s unique needs and limits, and in finding community with other people who share your brain wiring.
I want to include you in the beautiful practice of consensual infodumping, where you ask for permission to share about your passions in a long, delicious monologue to a person you love. I want to include you in the soft textures, gentle lighting, silly singing, deep dive learning, bean bags throwing, therapy swinging, and long afternoon snuggling under weighted blankets that are the norm in my Autistic home.
I want to include you in throwing out the capitalist lie that says you are only worthy if you are productive.
I want to include you in the way my particular Autistic brain pays exquisite attention to natural beauty, feels the personhood of every plant and animal, dives deep into every passion that comes my way, and teaches it forward. I want to include you in the moment when my son and two other little Autistic boys were bouncing on our couch, shouting the same nonsense word over and over, their joyful eyes looking straight ahead and not at each other, and no one stepped in to “teach” them “social skills” to play some other way. I want to include you in moment I told my child that I’m Autistic too – how his smile lit up the room. How he threw his little arms around me, welcoming me home.
In this week’s parasha, Mishpatim, we receive our first long list of laws about how to treat each other as Israelites. As we receive all these details, I am reminded of the powerful Midrash on last week’s parasha. Rabbi Yochanan explains that when God’s voice came down from Sinai, it split into 70 different voices, reaching each individual Israelite according to their own koach, their own strength. I imagine that as the people saw the mountain all in smoke and lightening, they were inspired to light their own campfires. In the evenings after revelation, they gathered around those fires to reinterpret the Torah in such a way that it served the actual wellbeing of their brains and bodies, given each of their strengths and vulnerabilities. Let’s imagine our ancestors received not one interpretation of Torah we should all be included in even if it oppresses us, but rather multiple Torot that teach us how to live well, given who we truly are.
Here’s to liberation.
Shabbat Shalom.
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