My Neighbor’s Kind Gesture Renewed My Faith in Autism Acceptance

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This originally appeared on Parents.com.

Autism acceptance took a hit last month when the news broke that two couples in Sunnyvale, CA, were suing their former neighbors because they claimed the neighbor’s 11-year-old son with ASD was a “public nuisance.” There’s been a lot of back-and-forth on this story in the media since then, but the prevailing conversation is one of fear, ignorance, and prejudice aimed at kids with autism and their families. Even some of the responses to my fellow blogger, Ellen Seidman’s, call for tolerance and doing no harm shocked me. What happened to a little bit of neighborly kindness and compassion? What happened to some empathy from the community? Was that too much to ask?

My heart ached as I considered the “public nuisance” story and wondered how my neighbors saw Liam, my 7-year-old, non-speaking son on the spectrum, and our family. We just moved into a large apartment complex this summer, and the new environment, with its accompanying sensory challenges, has caused my son a lot of stress. He’s not sleeping much, he’s frustrated and screaming often, and we’re struggling a bit as a family to adjust to it all.

But then something happened last Sunday that restored my faith in my neighbors and put my worries to rest.

My downstairs neighbor—an elderly woman whose door we pass every time we go to the car; who sees us in the laughing moments, the moments of whirling-screaming tantrum; who sees me as I flee to the gym at night; whom we wave to as often as possible, but whose name I didn’t know— called to me from her screen door as we passed on the way back from the park and store. Liam’s arm was linked through mine, and together we waited as our neighbor shuffled through her apartment. She returned a few minutes later with an enormous, exuberant bouquet of flowers.

For me. Because, in her words, “You’re such a good mother, and I see how much you’re doing to help your beautiful children.”

I took the flowers, tears rolling down my cheeks, thanked her, introduced us all, said goodbye, and went upstairs. When I ran into her again later, and tried to explain how utterly undone I was by her gesture, how grateful I was for her compassion, and how wonderful it was to gift us with a bit of unexpected beauty, she just smiled at me.

“We’re all a community here,” she said. “You can’t do this alone, and I’m happy to connect with another neighbor who’s a special education teacher. We are here to help if you need it.”

Needless to say, I was undone all over again, and my heart was full. This is how you can be a good neighbor to a child with autism and his or her family. See them as humans. Ask them if they need help. Offer them kindness. Listen to them. Try to understand their challenges. Accept them in spite of those challenges.

Believe me, your kindness will go a long way.

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.comFacebook (Jamie Pacton), and Twitter @jamiepacton.

Here’s Why I Hope

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This originally appeared on Parents.com

Hope may be “the thing with feathers,” as Emily Dickinson writes in one of my favorite poems, but I know it’s not always easy to feel optimistic when raising a child with special needs. As a mom to a non-speaking 7-year-old with autism whom I refuse to label as low/high functioning, I sometimes get comments from readers like, “She wouldn’t be so positive if she really knew the challenges of raising a child with autism…”

But I do get it. My son has a lot of behaviors that are dangerous, troubling, and downright scary. I don’t write about them in detail, because that doesn’t seem fair to him and because I’m trying to preserve some parts of our privacy.

It’s not that I’m trying to silence the suffering of other parents; it’s not that I haven’t bandaged my own wounds while sobbing; it’s not that I don’t lie awake some nights, my stomach twisted into knots of worry. It’s just that I want a narrative of hope to prevail in this conversation about autism.

Easier said than done on some days, I know—but here’s why I hope:

My son is young; his potential is limitless.

John Elder Robinson, writer, father, and Aspergian, wrote something on his Psychology Today blog recently that keeps coming back to me. It’s a good reminder of my son’s potential, and I return to it on days when hope needs a little boost: “Unfortunately the gift side [of autism] often does not show up till the teen years, and sometimes not till adulthood. That’s how it was for me and many other autistics I know. So parents who say their little kids “have no gifts” are in my opinion making a rather premature and dangerous judgment.”

Problem behaviors—biting, hitting, self-injury, screaming— are often expressions of frustration over lack of communication, and addressing that frustration makes life better for everyone.

These sorts of violent, troubling behaviors don’t come from nowhere. For my son and many kids like him, they reflect struggles to communicate. When I shifted my attitude towards trying to understand the root of my son’s frustration and addressing that, rather than just extinguishing the problem behavior, I saw great changes that made me hope. Fostering communication is the answer to so, so many of autism’s challenges.

Non-speaking children and adults with autism are finding their voices.

My spirits are always lifted when I see non-speaking kids, teens, and adults finding their voices using communication methods like RPM. Watching videos like these or reading blogs like “Emma’s Hope Book” remind me that these children’s struggle with silence is like my son’s, and in their triumph, I see echoes of his future success. And that makes me want to work all the harder to help him find his own voice.

Autism acceptance is growing.

Although there seems like a lot of negativity surrounding autism, acceptance is growing. As people learn more about neurodiversity, listen to people on the spectrum, and communities do more to support kids and adults with autism, I feel hope for my son’s future.

Hoping feels better than despairing, and I choose joy as often as I can.

“Hope takes practice,” as my friend Lyn Jones, says. Like all exercise, however, it gets easier the more you do it.

We don’t know the future.

Kids with autism surprise their parents, peers, and professionals all the time. My son’s doing things at age 7 that seemed impossible four years ago when he got his diagnosis. When I worry to too much about my son’s future, I revisit the stories and writings of kids with autism whose futures are brighter than anyone anticipated, like Ido Kedar’s Ido in Autismland, or Tito Mukhopadhyay’s poetry.

And sometimes, when all that fails me, I recite the first stanza of Emily Dickinson’s poem, like a mantra, until the storm has passed.

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

Never stop hoping, my friends. Never. Stop. Hoping. There is always light beyond the darkness.

 

Stop Labeling Autistic Kids as “High” or “Low” Functioning

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This originally appeared on Parents.com

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I have a bone to pick with the terms “high functioning” and “low functioning” for kids on the spectrum.

“Functioning” means working, operating, or having a purpose. And sure, it’s easy to see how a machine could be labeled as working or not, but when it comes to a child with autism, like my dear son Liam, a non-speaking 7-year-old on the spectrum, what do we mean? Many adults spend years trying to find their purpose, so is it fair to claim we know the purpose of a child with autism and therefore we’re able to assess if he or she is functioning or not?

I don’t think so. It seems to me that a child’s purpose in this world is evolving, and it’s something they each grow into with time. But when we designate a child’s functioning level as high or low, we’re assuming that his or her purpose or ability to move through the world is already set in stone. This mindset is dangerous, and it causes more harm than good. Here’s why:

The criteria that surround these labels do not describe a person.

My son’s official diagnosis is “severe” autism, and I’ve heard him described as “low functioning” by many professionals. But this is simply not an accurate description. Even when I look up the criteria for such a label, I don’t see Liam. He’s very aware of the world around him, he’s able to learn, he wants to engage socially, and his challenging behaviors don’t exist in a vacuum, but rather they reflect his struggles with communication.

The labels don’t speak to the specific challenges of each child, and these specifics are what we should focus on.

Just saying “low” or “high” functioning relies on generic descriptions of traits—it doesn’t look at the specific challenges each child faces. I think it’s more helpful to say, “This is what my child’s good at, this is what he/she needs help with.”

These labels can undermine the hard work that many people on the spectrum put in each day.

If a child is labeled high functioning, their challenges are often dismissed. While not all kids on the spectrum flap their arms, spin, or stim, many of them struggle with anxiety, socialization, and expressing themselves. We should acknowledge these struggles as well, and seek to a help a child work through them.

“Low” and “high” functioning labels determine autism services—and they can be manipulated accordingly.

Recently, two of my friends’ children received autism diagnoses. One of the children is verbal, and he got placed somewhere in the middle of the spectrum, although he still needs quite a lot of therapy. His label doesn’t reflect his challenges, but it does mean that his parents don’t qualify for government-funded services like the Autism Waiver, a program which covers therapy for kids on the spectrum only if they are “autistic enough.”

Another friend, whose son is a happy, non-speaking 3-year-old, was told by his therapists to exaggerate his challenges in order to make sure he qualified for all the services he could receive. This sort of random assignment of labels means that a lot of kids fall through the cracks and don’t end up getting the help they need.

The labels “low” and “high” functioning reinforce the (false) notion that having a child with autism is awful, which just perpetuates the fear and despair surrounding the disorder.

Too often I’ve seen parents and autism advocacy groups demonize having a low-functioning child with autism. These groups paint a grim picture of what life with this child is like, and there seems to be a tacit belief that if you have a child who’s high functioning, you dodged a bullet somehow. My son has many challenges, yes, and I know his life is hard sometimes as he struggles to communicate, but I adore him. I love helping him grow and learn, and his different neurology makes him unique, not a cause for fear and despair.

These labels presume there’s a normal that our kids with autism have to get to and that being indistinguishable from their peers is the goal of their lives.

I don’t think that helping our children blend in or just seem normal is our purpose (or function, if you will) as parents. Thinking of our children in specifics, as humans, and helping them be one their own best selves should be.

My son’s functioning just fine, and he’s developing at his own pace. He’s human functioning. He’s Liam functioning. Or how about he’s just human? He’s just Liam? That sounds like the perfect label to me.

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