On the Front Lines of Autism, Not Terrorism

On the Front Lines of Autism, Not Terrorism September 29, 2016
Image source: Author
D and I a couple of years ago. Image source: Author

Like millions of other Americans (and global citizens), my husband, daughter and I gathered together to watch the first of the 2016 presidential debates between Republican candidate Donald J. Trump and Democratic candidate Hillary R. Clinton. A mere ten minutes into it though, I was ready to check out.

Not because I was fed up or frustrated with the debate, but because it was approaching D’s bedtime. So I headed to his room to hang out with him until he was fully sleepy and ready to call it a night.

Soon enough, we completed his bedtime routine, and I slipped out of his room. I sat at the top of the stairs just hanging out and listening to him inside his room, talking to himself in the language that only he understands, until the room fell silent.

Another day done. All parties of the family accounted for.

I walked back into our bedroom, where my husband and daughter were following the debate closely, and heard Clinton addressing Trump’s attack on Muslims: “Donald has consistently insulted Muslims abroad, Muslims at home.” Yep, this is true. Trump is no friend to Muslims. But – and I’m not surprised by this – when she spoke positively of Muslims, it was because we seemed to have value in the fight against terrorism:

“They’re on the front lines. They can provide information to us that we might not get anywhere else. They need to have close, working cooperation with law enforcement in these communities – not to be alienated and pushed away as some of Donald’s rhetoric, unfortunately, has led to.”

So let me stop you right there. Am I on the front lines? Front lines of what? The war on terrorism? Hardly. Fact: I am a born-American and a Muslim who has lived here my whole life. Public school education, multiple jobs, journalist, editor, married, three children, PTA member, room mom, reluctant math tutor, bibliophile and autism advocate. I am committed to giving back to the communities in which I live.

But, as fellow blogger Hind Makki wrote in this post:

… to tie American Muslims to national security is to put conditions on our rights as citizens. … American Muslims are citizens like everyone else, but are the only group expected to police its own criminals. Clinton said that American Muslims are on the front lines of national defense because we know what is going on in our families and communities. That’s true. We do know what’s going on in our families and communities.

I’ve covered Muslims in America for 15 years as a journalist and editor, and so yes, I also know plenty about the issues facing our communities, the challenges, positives and narratives often missed by mainstream media. I can talk to you about all of that.

For example, there is an in-depth discussion still going on right now following aspiring journalist Noor Tagouri’s recent interview in Playboy among a myriad of Muslim women struggling with agency, image, owning our stories, beliefs, messaging, misogyny and mediums way beyond a piece of cloth that some of us wear on our heads. (Others in our community tell us to move on, but you’re not privy to the intelligent questions and troubling-but-necessary conversations happening.)

I’m on the front lines of that.

I’m also probably most on the front lines of disability and autism advocacy work – the red-tape and confusion that bogs down our ongoing attempts to obtain a Medicaid waiver for our 16-year-old son, who is profoundly affected by his autism. I’m as much on the front lines of that as I can be, given that I am not the one living with autism.

Talk to me about autism.

About IEPs, support services (or rather the lack thereof), the difficulty in training new staff, the struggle to find people to hire to help support my son. Languishing on Medicaid waiver waiting lists. More than two years of digging into research and trying different things to try and help D cope with his night time anxiety and meltdowns. Researching and trying any and all therapies that make sense for him.

Talk to me about doctor’s visits, traveling out of state to find appropriate medical care for him, about fighting desperately to help him (and our whole family) recover from a most miserable year where D was in throes of self-injury and the majority of help offered was in the form of psyche meds. Talk to me about finally figuring out an underlying medical condition he had, and how treating that put D on the road to a better life. (Not to diss psyche meds at all, but that’s another discussion)

Talk to me about holding a family together where each member has vastly different needs. Talk to me about destigmatizing the silence (and shame at times) still surrounding autism and other disabilities in our Muslim and cultural communities. About organizations that have grown in the past two years working so hard to bring light to the often left-behind disability community within the Muslim communities in the U.S.

Talk to me about inclusion done right. About learning to listen to the one living with autism or any other special needs, to amplify his voice instead of constantly speaking for him or over him. Talk to me about schools and teachers who go the distance. About others that are broken and half-assed in their jobs.

Talk to me about public officials, elected officials and others who speak about fixing and changing the system so that individuals with autism and other special needs and their families can receive proper support to live independently within their communities versus the reality on the ground of how few care givers and support services there really are and the abysmal pay they receive.

All this is to say that I’m fairly certain the vast majority of American Muslims are on the front lines of many things that have nothing to do with terrorism and extremism. Some do have that expertise and are tapped into those subjects. Most of us are not.

Talk to me about vulnerability. About love. About desperation. About sorrow. About fighting. About never giving up. Talk to me about family. About looking to my son to teach me and lead the way.

Yeah, I’m on the front lines of all that.

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