107. On Not Gathering and Conferring

“On Not Gathering and Conferring”

I was looking over the schedule for this year’s Autism New Jersey conference which, as some of you know, I write about here. There are some great talks on the agenda this time, as there always are, but….

Autism Duniya will not be in the building. Yep, I will not be attending. 😦

Every year the conference clashes with one Hindu festival or another. This year it’s Navratri. I sit there in the talks, enjoying and absorbing, but also frustrated that I’m not doing festive things with the family. So I decided that it’s time for me to step back and honor the side of me that really wants to do that stuff.

Being a lifelong member of the Indian diaspora, I’ve watched my people make lots of compromises to religious and cultural observances because we live in countries that don’t give us the relevant days off. Most of the time we compromise without thinking twice about it. We shorten pujas. We wake up ugly early on work days. We push things to the weekends. Here in the US, the fall weekends become so busy for observant Hindus, and that’s on top of school and extra curriculars.

For an autism family like mine, though, there is an added layer of complication. We are rarely a true part of the larger celebrations in our community, so we have to work hard to make things meaningful at home. That means if I am away, even the token marking of the festival at home won’t happen.

I am keenly aware that autism groups don’t factor our holidays in because why would they. Either we don’t show up in large enough numbers to count, or the few who do (special ed professionals—so few of them compared to how many autistic South Asian kids live in New Jersey alone!—and parents) are the ones who are willing to make autism events a higher priority, which I can definitely understand. Not everyone is religious. And in a way, the autism life is our higher calling, isn’t it?

But some part of me wishes that we WOULD show up. There are so many autism events that don’t interest me, to be brutally honest. Culturally, I will never make the leap to enjoying a baseball or golf fundraiser. But if it was cricket or soccer, I could muster up some hecks. And if it was a garba or Bollywood fundraiser, no need to ask me twice, I would be there with my whole darn family.

Not saying at all that everything has to be specifically tailored to desi interests in order to get us out there. But something is missing in the whole line of thinking that “hey, we mean our autism group to be inclusive, so show up and we’ll include you.” It’s not so simple. And I will just say it—I’ve shown up more than once, felt like a complete outsider, and never gone back. Sometimes it’s the messaging. And sometimes it’s the beneath the surface cultural needs that are unacknowledged and never fulfilled, so we retreat.

Just having autistic kids in common isn’t always enough to bring us to the table. And too often, that is the burden of assimilation placed on us as immigrants who may lack a wider support system but still have to deal with autism. Then there is the inadvertent isolation from our own community, though that’s a topic for another day.

I am bummed to be missing out on the conference this year, but now that the decision is made, I feel myself looking forward to the fall festivals. Our desi LGBT group* is organizing queer garba this year, but all are welcome. And our religious school** is planning a sensory friendly one. I’m proud to be part of such forward thinking initiatives, and I invite my friends in the area to come out and join us. Just as we want to be included in your world, we hope you will show up for us and demonstrate in a tangible way that our efforts mean something to you too. I’m holding both hands out to you. Will you grab back?

Radha.

*Desi Rainbow Parents and Allies

**Sanatan Vidyalay, a part of the SKN Foundation

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