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On Autism and Trust: The Saddest Happy Person

On Autism and Trust: The Saddest Happy Person

Last updated on: July 25, 2016 at 5:23 pm by Dilshad Ali

On Autism and Trust: The Saddest Happy Person 2016-07-25T17:23:38-04:00 Dilshad Ali

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D and his younger brother H at a local splash park. Image source: author

I’m either the happiest sad person in the world, or the saddest happiest person.

We have the whole day to ourselves, just me and D. So I ask him – what do you want to do? We can go swimming! We could go to Jumpology! We could go to the park. We could go get fries. Whatever you want.

He pauses for a minute, contemplating his choices, and then pulls me to our bed, which I’ve deliberately left unmade. We become a tangle of pillows and blankets, arms and legs in the ultimate cuddling/decompressing/chilling session. No demands, no work, nowhere to go to.

Just me and D, hanging out with pillows piled around us and between us, blankets engulfing him.

And he is happy. Oh, dear God, he is happy, digging his sharp chin into my arm, wrapping his whole left arm around my right one in a D version of a tight hug. He looks into my eyes, a rarity – the one “good one” seeing me, and the one obscured seeing me, too. And I see him. And, it’s ok. It’s all ok. Even when it’s not ok.

**********

It’s not a battle or a chess match. There are no winners or losers in this – D versus autism, or our whole family versus autism. There are no absolutes, no black and white, only alternately murky, soothing, beautiful, brooding, weighty shades of grey. But not always. There is brilliant color and brightness too.

But I’ve come to the realization that somewhere along this path, this journey, this all-encompassing, endearing, painful, overwhelming and consuming love for D and his younger siblings, that there is no happy without the sad, no sadness bereft of happiness.

As a dear friend brilliantly said it for me last week, as I was trying to describe to her this fundamental sadness I just cannot seem to conquer. A sadness that tinges and colors everything slightly. A sadness that doesn’t stop me from living, loving, parenting, working, being. A sadness that doesn’t stop me from enjoying and laughing. A sadness that doesn’t mean I pity or think any less of D.

But a sadness, nonetheless. My friend nodded in that way when you completely understand another being. Really, truly:

I know exactly what you mean. It’s what I’ve come to realize about myself. I’m either the happiest sad person in the world, or the saddest happiest person. And I’ll probably always will be.

**********

There is a definitive mustache on D now. A scraggly beard is coming in, sprouting out from beneath his sideburns and underneath his strong chin. The perpetual scars on the sides of face, emblems of his worry and anxiety as he uses his thumb to scratch and rub his skin raw, are harder to treat now that new hair growth is there.

He is growing, soon to be 16. A young man really, leaving his days of boyhood behind him. But the challenges and struggles he lives with are perpetually still there, waxing and waning depending on his health and a million other things known and unknown. And I wonder how this is all going to play out. What will his place in this world be? Will he ever be abused? Targeted? Taken advantage of?

All very real possibilities, despite the best parenting, protection and safety nets I can muster.

Will he find a path through adulthood where dignity, respect, peace, work and happiness are the hallmarks of his journey?

Amid the never ending news of gun shootings, police brutality and the often targeting of black citizens, I can’t stop thinking about Charles Kinsey, a behavior therapist at a group home in North Miami, who went out after his client, a young autistic man named Rinaldo. Rinaldo had wandered off, and Kinsey went to find him.

Once he did, the police found them too, ordering Kinsey and his distraught charge to lie down in the street. Rinaldo sat cross-legged in the middle of the street. Kinsey lay down next to him with his hands in the air. He called out, time and time again, saying who he was and who Rinaldo was, saying he had a toy truck in his hands.

Rinaldo called out too, obviously agitated, as Kinsey tried to advise him to keep quiet and calm,

Police shot Kinsey. A black man. And later, during the ensuing public uproar, they released a statement saying the officer was actually aiming for Rinaldo and shot Kinsey by mistake.

But how is that any better? Is that the real story? No scenario sits well here.

Writes journalist David Perry on Cnn.com:

Racism and ableism, which is individual and systemic discrimination against people based on their disability, intersect to make encounters like the one that took place Monday in North Miami very dangerous. Racial bias leads officers to have more contacts with people of color and to treat those contacts as more likely to be hostile. Ableism leads officers to approach people with disabilities as erratic and dangerous. It also leads them to perceive noncompliant behavior as a sign of threat, rather than a sign of disability.

For what it’s worth, I understand that the police have a difficult job on their hands to enforce the law and maintain everyone’s safety. I’ve been out with D and have had to help through some terrible meltdowns. I worry incessantly what will happen if in any of those situations, a police officer should approach us.

It only takes a second.

**********

Two years ago something horrible happened to D. And while he’s moved on, adjusting and living his new normal so well, I – to whom nothing happened — feel permanently altered. The grief is forever there in my heart, and a part of me has died as much as I keep on living, loving, laughing. Learning.

Susan Senator, author of Autism Adulthood (sitting on my nightstand), recently wrote a painful series of posts in which she revealed the recent discovery that her adult autistic son had been abused. How does one go on? How does one trust? How does one entrust a most precious loved one to the world after that:

His apparent fragile dependency is the part that kills me, but that also makes my heart burst open like a hot red poppy. That dependency is so dear, and so scary. That crystalline clarity of need and trust. His ability to trust — maybe now that I think of it, that’s his disability. That self-advocating we can do, but he can’t.

And yet. Arid hope blows dusty across my consciousness at those odd moments and I wonder. Maybe that ability to trust is also his strength, and will be his way through it.

It is in these painful stories – that of Charles Kinsey and Rinaldo and that of Susan, Nat and her family, that I’m just left a puddle on the floor. There is a long life to be lived for D, for me. For my other children, A and H.

I’ve accepted that sadness will likely always be a part of all this. It doesn’t mean I think my son or any autistic person to be any less or to be pitied. It is born of this unbearable business of trust and mistrust. It’s more about the fact that sometimes there are things that happen that are not ok. It will never be ok. But still we have to learn to be ok with it. We have to learn to move forward.

And if that makes me the saddest happiest person around, so be it.

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