In Our Society, Autism is Seen as Damaged

Ali Family Autism Truths #26 – April 26, 2016 Editor’s Note: For the last five days of April, I’m out of town and am getting creative with our Ali Family Autism Truths posts. Today’s and the next two day’s posts are actually brief interviews my friend Jamie Pacton did with Syrian autistic children and their families, who have been helped by A Global Voice for Autism. Jamie writes about autism for A Global Voice for Autism is a wonderful… Read more

The Truth is, It’s Very Hard, This Autism Living

Ali Family Autism Truths #25 – April 25, 2016 The goal is being as independent as possible. Not needing us, not needing support, as much as possible. The premise of this makes me smile because in the culture we were brought up in (Indian, Muslim), the focus was on achieving success and living a good life but always being close to one’s family. The family unit should always stay together and rely on each other. The respect for one’s elders… Read more

Life Cannot Be Locked Out

Ali Family Autism Truths #24 – April 24, 2016 Life cannot be locked out. Nor can safety or protection be locked in. The truth is, like it or not, when raising a child with autism, locks can be a large part of your world. Some autistic individuals have a tendency to bolt or run away, which means better and more locks on doors to the outside. (There was a terrible, frightening period when D did this, and in the span… Read more

A Hidden Message in Autism Code

Ali Family Autism Truths #23 – April 23, 2016 No lengthy post tonight. Just this photo. After a pretty good day, things headed downhill fast post-dinner for D. I went up to sit with him, knowing there probably wasn’t much I could do. Heck, I figured he’d just get more upset by having a body close by. But, I figured I could lurk in the corner of his bedroom. As I’ve written numerous times before, sometimes all I can do… Read more

Which Truths Can be Shared, and Which can Only be Lived?

Which truths are we charged with sharing, and which truths must remain more quiet for the sake of the greater picture or, more importantly, one’s privacy? I was chatting with a friend today – someone I’ve “met” through my autism writing, who also writes extensively on autism, on life with her autistic son, on neurodiversity and other disability topics. I was telling her how difficult it is to lay one’s life bare and share intimate truths, day after day for… Read more

The Truth of Perceptions and Outcomes

My mother-in-law and I sat around the kitchen table this morning – me with my laptop open doing some office work, her flipping through a catalogue. Our conversation meandered all over the place until I asked her: When did you and Abba (my father-in-law) really make that decision to settle here in the U.S. with us and make this your primary home base instead of your home in India? As we tripped down memory lane together, she wove a story… Read more

It’s Not “Just Autism”

Ali Family Autism Truths #20 – April 20, 2016 I pretty much don’t have to even write today’s Ali Family Autism Truths #20 (dude! Made it two-thirds of the way through!) – because my friend Nakia pretty much said it all today: I forgot yesterday’s autism fact because Zak went to bed on time in his own bed, so I was a little spooked. But here you go: most aspects of ‪#‎autism that neurotypical people focus on are the social aspects… Read more

Like Muslims, the Autism Community is Not a Monolith

Ali Family Autism Truths #19 – April 19, 2016 The morning started with a visit to yet another specialist today for D. The medical mysteries and questions keep a coming. Last year (2015) ended with a week-long hospital stay for D and some medical issues for which definitive answers still elude us. And this year is a continuation of the medical conundrums. There’s a contingency of the autism community for whom the mantra is: Autism is Medical. As in, if… Read more

On Block Formations and Autism Negativity

Ali Family Autism Truths #18 – April 18, 2016 More than twelve years ago, a series of evaluations and research had led us to a life changing moment: We sat in an office at Beth Israel Hospital in New York City, waiting for the head of the Behavior Developmental Pediatrics department to talk to us. She had done a series of evaluations on D and had consulted with his pediatrician and us. Soon, she ushered my husband, D and myself… Read more

D’s Declaration of Faith

Ali Family Autism Truths #17 – April 17, 2016 I harbor secret fantasies of chartering a private plane and taking D for Umrah – the lesser pilgrimage to Makkah done during non-Hajj times. My friend, Joohi Tahir, executive director of MUHSEN (Muslims Understanding and Helping Special Education Needs), wrote a post for me about two years ago about how she and her family performed the Umrah with their autistic daughter Mehreen. The story is simply beautiful: Every step of this… Read more

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