Culture and Society

Where’s Aidan? My favorite question on Autism Awareness Day

 

 

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“Where’s Aidan?” It’s a question that gets asked out loud or in my head hundreds of times every day in my house. Aidan is my nine year old, highly energetic, happy, beautiful son. He’s also my minimally verbal, constant flight risk, moderate to severely autistic son. And not knowing where he is for too long usually doesn’t end well. Seven years into this journey, my family looks very different than I would have expected when we started this whole thing.

According to data from 2012, the CDC tells us that one out of every 68 children born today is diagnosed with autism spectrum disorder. More boys than girls— fourand a half more to be exact. One out of every 41 children born in New Jersey, where Aidan was born, are diagnosed. Those are concerning numbers for prospective parents, even more for those who have kids and are starting to get that dark, alone feeling that their kids are different. Dark and alone are important words when it comes to Autism-it’s where we all start, and some of us stay.

Most of the energy around the autism discussion is around finding “the cause” or “the cure”. And that’s good energy because if we can spare people the outcomes of autism, we should. My boy is not perfect in every way. I’ve been up since 3AM, because that’s when he got up. You can’t get someone back to bed when they don’t understand time or are episodically detached from the fact that they are going to get in trouble if they don’t.  And you can’t go back to sleep because he’s smart enough to go get dressed and take a walk, to Mexico if you let him.  I love him unconditionally, but I would fix him in a second if I could.  So finding causes or cures are important. Except that it’s probably not a cause, or a cure.

If you spend enough time around the autism community you start to realize that it’s not one problem. There’s all kinds, with all kinds of causes, and all kinds of treatments.  So the angry vaccine debates and the frustrated food additive advocates can rage on.  That energy will ultimately lead to something good.  But it’s actually not why I’m writing this, sitting on my son’s floor, now just before 5AM, as he rewinds the same part of The Land Before Time over and over again to watch it, giggling with delight. I’m writing it because it’s Autism Awareness Day.  And I’d like to offer a call to action, not for a cause, not for the kids.  I’m offering a selfish call for help to the selfless— the parents of autistic children.

Seven years ago this fall, I was deployed to Iraq when my wife sent me an email telling me to call her.  I had been gone three months. She usually didn’t do that so I knew something was wrong. I got to the nearest phone and when she picked up I could tell she’d been crying. She told me she had taken Aidan in for an assessment, and the doctor told her, with cold certainty that he was autistic. The lights went out in the building I was in with the word still hanging in the air. Our generator died. Talk about timing.

I ran to another part of the camp where I knew I could find a phone. We talked for a bit, she gave me the details, about how he had stopped talking shortly after I left about how she knew something was wrong before but I wouldn’t listen. I hung up and hurried out of the building as quickly as I could.  I had to get back to where the lights were out quickly before I lost it. When I did, the flood gates opened. As I walked back to our side of the camp, I mourned the life that I just lost and the future we’d planned. I wrapped myself in dark thoughts as a trudged back along the banks of the Euphrates, where men had carried dark, lonely thoughts for millennia.

A mentor of mine once told me that the richest parts of our life are the walks back to the path we were on when something knocks us off it. And he was right because the walk back for me and my family has been a rich one. But it’s also been a long one with lot’s of tail winds. My wife and I have a strong relationship, but the diagnosis and my response to it almost drove our marriage off a cliff. When autism families are open and honest, most will tell you some version of the same thing. We have three graduate degrees between us and an income that allows us to live in a gated community. We can close the resource gap for things like house cleaning laundry, yard work and specialized childcare through money.  We have a great school system in our neighborhood and a strong church with a special needs community walking distance from our house.  And here’s the message I want you walk away with.  We have just about every advantage you could think of as a family with an autistic child. And we barely get by.

I have no idea how in the world a family with any less resources than us has any chance at all. Yet somehow, they find a way, sometimes. But sometimes they don’t.

So here’s my call to action. Someone somewhere in your life is struggling with some function of this journey. I promise you. If you don’t know anyone, then you’re not paying attention. So that’s my first ask. Pay attention and keep an eye out for someone somewhere who may be in need. Here’s my second ask. Help them.

What does help look like? It’s not much. Ask them how they’re doing. And listen. If you want to get your families together, offer to do at their place, it’s easier. And show up on time to things. We have windows for recreation that open and close on their own. Teach your kids how to engage with theirs so that one day they might be able to help care for them and give them a break once in a while. Remember, we’re likely going to be parenting for 50 or 60 years and leaving our kids to someone else after we die. That mountain is best climbed with others.

If you’re a grandparent or an aunt or an uncle, don’t tell them that they’re over reacting and that things will just be fine. They might be—but probably not. They’re not looking for a life’s lesson or hard love. They’re about to get a lifetime of both. And the things parents and siblings of autistic parents say in the minutes hours and days after a diagnosis can be either a great source of strength, or pain for years to come. If you’re a husband and your wife is telling you something is wrong and she wants to get your child tested, listen to her.  And support her. I didn’t and the fact that I left her to do it alone is a regret I’m not putting down any time soon. The great thing about helping autism parents is it really looks a lot like being supportive, and available and loving. And that’s not hard.

What better day to start than Autism Awareness Day…or Saturday…as we call it in our house.

7 replies »

  1. I totally get your point that it’s not just one thing. I have a girl with Aspergers. And not only is it very unlike what you would normally think of as autism, Aspergers in girls is also very different than Aspergers in boys. Things that might be helpful for other kids on the spectrum are not of any use for her. (But she’s not a flight risk. It’s more of a struggle to get her to leave the house, sometimes.)

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  2. Can you please consider running for office sometime soon? We need smart, strong, and clearly sensitive and clued up people like yourself steering the ship. di

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  3. “… the richest parts of our life are the walks back to the path we were on when something knocks us off it.” What a gift from your mentor. Lovely, and loving, post Sean. Thanks!

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  4. It was great to hear you talk about Autism. I have an autistic daughter and at times it has been a harrowing Story but I love her so much she has had to fight her way all her life . She is called Hazel and is now 32 and has aspects of Asperger’s as part of her Autism. I am so proud of her in her fight . She is now living with me and we were returning from London and the National Autistic Society were collecting for Stand Up for Autism and Hazel who was with me just told the Collector that she was autistic and poured a load of coins into the collectors box. I wouldn’t change her for anything in the World. She is to me a perfect Human Being.

    Best wishes Laurence

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  5. Sean – I read your blog with great interesting and am a strong believer in everything you say. Seven years ago I created a camp for adults with developmental disabilities – including autism and down syndrome. I did this because I observed that when someone with a developmental disability ages out of their school system, almost most every social and life skill opportunity disappears. We currently have camps in NC and GA – each session is 5 days and four nights and we do all the traditional camp activities. In addition to the benefits to the campers, their caregivers receive a well deserved respite. And our volunteers come home different people. Check out this short video 100 word video – https://youtu.be/E3GfkPwP57M

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