To Those Who Believe that People with Autism Have No Worth, I Have a Message for You

To Those Who Believe that People with Autism Have No Worth, I Have a Message for You August 20, 2013

We live in a pretty quiet neighborhood – it’s your classic big old-style Southern colonial Virginian houses, complete with magnolia trees out front. Kind of a weird fit for an American Muslim-Indian family with a headscarf-clad mom (me), old school Indian in-laws (who are newly minted American citizens!), husband and three kids, the eldest of whom certainly disrupts the serene scene at times.

It’s a neighborhood of kids and school busses, but not teeming with kids playing outside or in the streets. Friendly, yes. But not the kind of neighborhood where we’re always out in each other’s yards, where there’s a constant hum of activity and the sound of children being loud in their play.

So when we moved to our neighborhood three years back, I felt a little trepidation. On one hand, this was the house we were looking for – big, with a finished basement and room for my in-laws, our kids and, because we have to think and plan this way, room to house Lil D and a caregiver with us as he moves into his adult years.

Because, if you are a reader of this blog, you know that Lil D has severe autism and is nonverbal, and as hard as he and we are working to teach him independent living skills, we’re planning for a future where he will need assisted living help. We live with hope, but we plan with practicality and sobriety. 

On the other hand – we certainly stuck out. If my hijab and our general Muslim-ness wasn’t enough, we had autism to really make a statement. Would our neighbors accepting of Lil D? He can be a pretty loud kid, and when he is engaged in a meltdown, I’m sure the sounds echo beyond the thick walls of our home.

So we made it a point to introduce ourselves to our two next-door and one front neighbor when we moved in. This was our general spiel:

Hi. We’re the Ali family! So nice to meet you. Yes, we have three kids. Our eldest has autism and doesn’t speak. We want you to know about him because when our kids play outside, he can make loud noises. If he gets upset, he can also be very loud. He may wander, though we do a pretty good job of keeping tabs on him. So if you see him on the driveway or on the street and you don’t see us, please come let us know ASAP. We have a lot of therapists who come in and out of our house, so you’ll see cars parked out front all the time. If you’re having a party or are outdoors and Lil D is being too loud, please kindly let us know, and we’ll take care of it.

I am setting up a picture here, as you can tell. Laying down brick by brick what we have done to become part of our neighborhood and how we’ve tried to get everyone in the know with what’s going on with Lil D. Because this is what most autism families do – we know our autistic loved ones are going to stretch the boundaries of neighborly living. They may bolt. They may be loud. They may run into a neighbor’s house. They may break something or do something inappropriate in public or on a neighbor’s property.

But our kids also have worth. They have potential. They have the right to live on this earth, in our homes and in our neighborhoods as they are. So to the cowardly person who wrote that anonymous letter to his/her neighbor advising them to euthanize their autistic child because he is too loud, too weird, too abnormal – may God forgive you. Because I do not.

I don’t have insults to waste on you. Maybe you aren’t directly affected by autism. Maybe your cherub-like children are the perfect little angels. If so, goody for you. Maybe you think your world would be better if only normal people lived in it. In fact, you write in your anonymous hate-filled letter that the noise made by the autistic boy you have a problem with is:

“DREADFUL!!!!!!!!! It scares the hell out of my normal children!!!!! If you feel your idiot kid needs fresh air, take him out to the park you dope! … Crying babies, music and even barking dogs are normal sounds in a residential neighborhood!!!!! He is NOT!!!!!!!!!!!!!!!!!!!”

Let’s talk about this word normal, shall we? Because there are a helluva lot of people in this world with a helluva lot of differences – race, creed, religion, culture, disability, different-ability. Here are some facts for you: White is fast becoming the minority, Islam is the fastest-growing religion in the world and the rate of autism is increasing more than childhood cancer, diabetes and pediatric AIDS combined.

So here’s a news flash for you – by those statistics, I and my family are the new normal. You are not.

How do you like me now?

But let me put aside my highly well-deserved snark. Let’s get real. Today you want your neighbor’s child to be killed because he is disturbing the peace, because he is annoying, because as a square peg he doesn’t fit nicely into this round hole of a world. Tomorrow that kid will be someone in your family. It may be your future grandchild. Hell, your own child may — God forbid — one day become ill or have an accident and cease to be “normal” by your standards.

What then? Kill them all?

The stupidity and WTF-ness of your remarks boggle my mind.

And I’ll be honest, because I always try to be – I know personally it’s not easy to be around my kid. He sure makes it tough sometimes. He can be loud, inappropriate and a disturbance to others. He has touched people as he has walked by them, he has gone up to people in restaurants and taken fries off their plates and he goes with me into the women’s bathroom when we are out in public because he cannot go to the bathroom by himself. And, he has had loud, scary meltdowns in public.

We try our damndest to make good choices for him. We are teaching him to live in this world, in our society, the best we can. We are establishing relationships with local business owners, grocery store employees, staff at local restaurants and with others in our community so they can be part of our large teaching circle. We take our son out in the community because he is part of the community, and we will NOT isolate him to his house. When he is in a bad period, we don’t take him to certain places because we know it will create a bad disturbance that isn’t good for anyone.

So many autism families do these same things on a daily basis. Our children are growing into adults, and they will be a part of everyone’s world. So have some compassion and patience. Work with us. Cut us some slack. We are well aware of how things look, and we are walking a tightrope of creating a community of inclusion for our children while trying not to make things too difficult for those around us.

Maybe that letter was a hoax. Maybe in the next few days some news will come out revealing that it was a big sick joke of a letter. But here’s what is sad. There are people out there like the anonymous author of that letter. I’ve encountered them. Every autism family I know has encountered some version of that letter-writer.

And that, my friends, is unacceptable.

Because our kids with autism and other special needs have worth. Teens and adults with autism and other special needs have worth. My son has potential, worth and the same rights to a life worth living like everyone else. He has the right to play in his backyard, be out in the community and live his life to the fullest.

And if anyone tries to take that away from him – well then may God have mercy on you. Because my gloves are coming off.

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