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
April 21, 2016 By Dilshad Ali
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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”
April 20, 2016 By Dilshad Ali
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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
April 19, 2016 By Dilshad Ali
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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
April 18, 2016 By Dilshad Ali
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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
April 17, 2016 By Dilshad Ali
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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
I Has High Expectations
April 16, 2016 By Dilshad Ali
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I woke this morning and soon after read a blog post written by a friend, whom I have never met in person, but I consider her a friend. In a conversation she had with her autistic, nonverbal (but definitely not non communicative daughter) daughter via spelling on a letter board, her daughter said to her, “I HAS HIGH EXPECTATIONS.” The conversation came following a difficult situation they had come through, and her daughter was expressing her frustration with herself because,… Read more
In Autism Land, Who Tells D’s Story?
April 15, 2016 By Dilshad Ali
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Ali Family Autism Truths #15 – April 15, 2016 One of the dangers in chronicling D’s and our family’s autism journey is taking a story that is supposed to be about him and turning it into a story about us. Or me. I know that has happened one too many times over the years. Some of it is inevitable, given that instead of D writing or sharing his stories due to the profoundness of his autism, I’ve taken on that… Read more
A Lunchtime School Cafeteria Story
April 14, 2016 By Dilshad Ali
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Ali Family Autism Truths #14 – April 14, 2016 Hey H, I said to my youngest this morning as the kids got ready for school, I’m going to see you later today at school! What for? He asked me. Did you forget? I’m on lunchroom duty today! Guess that means I have to finish all my lunch today, he quipped back at me. I love lunchroom duty days. Every class is assigned a week to provide parent volunteers in the… Read more
Not Living in the Past – Living for the Future
April 13, 2016 By Dilshad Ali
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Ali Family Autism Truths #13 – April 13, 2016 When you’re picking up your kid from school and it’s taking a very long time for the teachers to bring him out. You think the worst. Because, experience. #autism I posted that on Facebook while I sat in the car today nervously watching the minutes tick away, waiting for D to come out. It was taking a long time for his teachers to walk him to the car, and that was… Read more
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