Buddhist Catholic Contemplative Evangelical General Christian Hindu Jewish Latter-day Saint Muslim New Visions Progressive Christian

Beliefs

Topics

Columnists

Resource Library

Research Tools

Video

Podcasts

Thought Readers

Faith In Media Tracker

Newsletters

Ad-Free & Subscriber Log-In Subscription Support

Follow Patheos

Muslimah Next Door

Home
Muslim
Ali Family Autism Truths #18 – Sometimes the Truth Hurts

Ali Family Autism Truths #18 – Sometimes the Truth Hurts

Last updated on: April 18, 2015 at 10:13 pm by Dilshad Ali

Ali Family Autism Truths #18 – Sometimes the Truth Hurts 2015-04-18T22:13:13-04:00 Dilshad Ali

LOGO Patheos Explore the world's faith through different perspectives on religion and spirituality! Patheos has the views of the prevalent religions and spiritualities of the world.

My hand on D’s head in a rare moment of quiet cuddling.

April 18, 2015 – Autism Awareness Month, Autism Truths #18

We are winding down our Saturday, me sitting on my bed banging this post out, and D chilling and winding down on the chaise lounge in my room, twirling his beads on an especially long piece of plastic. I’ll be asking him to relinquish his beads soon, as the final lapse toward sleepy time will be hard to come by if he keeps stimulating himself with the beads.

Between two soccer games for A and H, starting early this morning, an impromptu basketball game played with our neighbor’s children and their dad and a last minute cook-out on our deck, it’s been a busy-yet-lazy Saturday, full of ups and downs along the way. I travel from one end of the spectrum to the other with D, proud of him doing one thing this morning, worrying about him this afternoon.

Catching up on the happenings on social media shows me much of the same in Autism Land — the highest of the highs to the lowest of the lows. One friend of mine, who has a brother with autism, put up two updates today about difficulties and heartbreaks she and her brother faced while trying to do a few things out and about Washington, D.C.:

While I was paying for parking, *Mobeen stopped to hear a man play the saxophone. I turned for a second to press “get receipt” – then I heard the man yell “NO” and Mobeen screaming from fear.
Mobeen was holding the mans flag that was in the bucket, and the man pulled it away. Mobeen is at fault – No doubt!!
So i apologized and explained the situation. I also explained how he loves flags and he just wanted to touch it, not take it. I wouldn’t have allowed it.
Mans response: “I know disability -but He needs to learn not to touch the flag” “I could’ve been a crazy man”

I said: “but you’re not, so you should’ve been more understanding and tolerant”

Man: “are you trying to teach me? You need to teach him and control him. He shouldn’t be here if you can’t control him”

I held my tears, luckily I was wearing sunglasses. I looked at Mobeen and talked to him, since I could get more sense into him than the man. But as I was talking to Mobeen, two strangers went to the performer to comfort him and said,
– “Don’t bother with them, you are doing a great job”
– “They don’t understand how to respect the flag, they need to go back to their country”

Has the flag become more important than what it represents?
Freedom, liberty, equality, respect, justice…..
Will Mobeen be treated this way for who he is and how he is?

Patriotism is not about respecting the flag per se, it’s about respecting the individuals who the flag is for. The flag represents every American, regardless of race or religion. To disrespect an American with a disability – is a disrespect to the flag itself.

Then I read updates from friends where I live, who attended the first annual Central VA Autism Conference today in my hometown. At the end of the day, four young men with autism shared their stories. Three are sons of friends of mine. And, in a world where it seems like all to often others are speaking for those with autism, it was so uplifting and important for these young gentlemen to speak for themselves.

If D could speak for himself, do for himself, take care of himself, decide for himself, live for himself, determine for himself — this would be the greatest accomplishment, the greatest blessing, the greatest thing I could ever hope to see in my life. I share a lot of positive stories about D, because I feel it’s important to put forth the positive and try to create some level of understanding in the world’s community about how each step forward, each achievement, each thing learned is not to be taken for granted. About how we all need to learn to live together, support each other and lift each other up in the best ways possible.

But I share what is tough and heartbreaking, too. Because that is also the truth. And you need to know the whole truth.

What happened to Mobeen has happened to D. More times than I wish to remember. A particularly horrible incident in Georgetown Harbor in Washington, D.C. comes to mind, when a crowd gathered around us to gawk, whisper and stare while D had a bad meltdown and tried to bang his head against the concrete. I attempted to block him while instructing my youngest son and my niece to sit on a bench away from the commotion. I could hear some of them whisper — why did she bring him here? Can’t she control him?

And, as many times as I’ve attended conferences or lectures or spoken with families who have worked hard to help their children reach these inspiring levels of independence and lives lived as part of their community, I still worry incessantly that D will not have that kind of a life.

D is profoundly autistic. Profoundly. Eleven years after he was diagnosed, it still hurts to say those words out loud or type them out here. We in the autism community can argue and disdain labels all we want. We can tell each other that there is no timeline on progress, that individuals with autism learn at their own pace. We can work to instill pride in those who have autism and are aware that they are autistic. That is important. But, I know how D’s autism manifests for him — profoundly.

And so the truth is, even on the most even and benign and mundane of days, when D is just doing his own thing, it’s never even or benign or mundane. And it hurts.

*name changed to protect privacy of a child

Autism Interlude

#autismtruths

Ali Family Autism Truths

Previous Post

April 17, 2015

Ali Family Autism Truths #17 - Brotherly Love

Next Post

April 19, 2015 Ali Family Autism Truths #19 - The Unattainable Truth

Browse Our Archives

Select a Category A Global Voice for Autism Autism Awareness Month 2016 Autism Awareness Month 2017 Autism Interlude Hajj and Eid ul Adha Jenin Autism Project Ramadan Three Questions Uncategorized WISE Global Conference

Select a Month November 2018 October 2018 August 2018 June 2018 May 2018 April 2018 March 2018 February 2018 January 2018 December 2017 November 2017 October 2017 September 2017 August 2017 July 2017 June 2017 May 2017 April 2017 March 2017 February 2017 January 2017 December 2016 November 2016 October 2016 September 2016 August 2016 July 2016 June 2016 May 2016 April 2016 March 2016 February 2016 January 2016 December 2015 November 2015 October 2015 September 2015 August 2015 July 2015 June 2015 May 2015 April 2015 March 2015 February 2015 January 2015 December 2014 November 2014 October 2014 September 2014 August 2014 July 2014 June 2014 May 2014 April 2014 March 2014 February 2014 January 2014 December 2013 November 2013 October 2013 September 2013 August 2013 July 2013 June 2013 May 2013 April 2013 March 2013 February 2013 January 2013 December 2012 November 2012 October 2012 September 2012 August 2012 July 2012 June 2012 May 2012 April 2012 March 2012 February 2012 January 2012 December 2011 November 2011 October 2011 September 2011

TAKE THE

Religious Wisdom Quiz

Who said, "The Lord is my shepherd, I shall not want"?

Select your answer to see how you score.

David Moses Paul Solomon