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My Autistic Journey

In the spring of 2021, I made a difficult decision. I began publicly identifying myself as Autistic.

I debated for years how I wanted to be known. A simple Google search immediately labeled me as Autistic but I didn’t consent to this - my mother had. My mother wanted the best for me. She taught me about advocating for myself and she worked with Jewish disability organizations to raise awareness about inclusion within the Jewish community. This included writing blogs and articles. But in 2021,  still was unsure if being Autistic was something to be proud of. And, then it shifted. I discovered the online Autism community where ‘actually Autistic’ shared their stories and experiences. They uniquely spoke to me. This is your story, they said. You must decide how to share your story and your struggles. You can’t leave it to neurotypical people to determine how to live your life – you must decide that for yourself. I was already about to take a big step. High school was on the horizon. And so I decided that this was going to be a fresh start. I was going to take my mother’s lessons of self-advocacy and independence and take them to the next level.

But I recognized that I couldn’t do this alone. For all of my frustration with my mother, she had a point. I wasn’t going to get anywhere if neurotypical people didn’t understand my challenges. Certainly, organizations like MATAN had immense value and power – they could train educators on how to educate Autistics, create guides for creating inclusive environments, and be a platform for sharing important information and messages. So I partnered with them, and later on Jewish Disability Inclusion News and better utilized my website. 

I grew more pragmatic. Autistics must work on overcoming their challenges and sticking up for themselves, just like anyone else. I don’t deserve to be handed inclusion on a silver platter. At the same time, professionals and parents have important responsibilities in terms of support, education, and guidance. It will come in a variety of forms and levels of support depending on the support needs of the Autistic but in the end, they still play a valuable role. And even the neurotypical who doesn’t think they have an important role to play: they do, and it’s the most important of all – to build a tolerant and accepting society willing to accommodate, challenge, and empower our Autistic friends. As my friend Judith Talesnick put it best, this was a holy partnership. I found my mission and my goal. I speak to kids on how to include others. 

Throughout it all, I have wrestled with my Autistic identity. I decided that being Autistic was not something to be ashamed about. Despite the misconceptions, I was proud of who I am. And in 2022, in front of my entire high school, I shared my story. I also decided to demask (see Unmasking Autism on my website). It is a long, ongoing, and complicated process, but through it all I have been all the stronger for it. I am very open with what I need. I recognize when I need a break. I am proactive about identifying and preventing sensory triggers. I work hard to build social relationships and I am constantly educating myself about social cues and skills that I will need to thrive in a neurotypical world. My mother, my brother, my friends, and my colleagues (especially at MATAN) have all been with me on this journey, and they continue to grow too. I started with lofty ideals. I recognize that is unrealistic and likely unhelpful. I have come to recognize the importance of pragmatic, smart, and just inclusion. 

I still have a lot ahead of me. As I head into a second summer at my job as a counselor at Ramah Nyack, I expect that the residential life will come with unique and exciting challenges and opportunities. I am also entering my senior year of high school. This journey in my life is coming to a close. But the new doors of opportunity that lay ahead are exciting. How will I make use of my time in college? What new social connections will I forge? I renew a covenant I made with myself in 2021, that I renew every April 2nd – be genuine, work for an inclusive community, and fulfill the promise I made to god, to be kind and to help others. I won’t be speaking to a group on April 2nd. Nor will I be writing a blog. I will be working on myself. I will be traveling with my school to visit colleges in the Boston area. I will continue to work on finishing this chapter: forging friendships and making memories and I will also lay the seeds for my step – my adult Autistic journey awaits.

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1 comentário

Jamila M. Hall
Jamila M. Hall
02 de abr.

Thank you for sharing Rafi! Great post!

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