What I Wish I’d Know when My Son Got an Autism Diagnosis

This full post is on Parents.com:

15 Things I Wish I’d Known When My Son Got an Autism Diagnosis

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Autism surprised me five years ago, and it continues to surprise me today. Over the years, I’ve written this sentence so many times: “On my 32nd birthday, my son got an autism diagnosis…”

And although I still remember almost everything about that morning, today, on the five-year anniversary of my son’s diagnosis and my 37th birthday, I wish I could go back in time and tell myself these things:

You’re not “going to a funeral.”

As I wrote five years ago, when we walked into the doctor’s office to get my son’s diagnosis, I said to my husband, “I feel like I’m going to a funeral.” I realize now how melodramatic and wrong-headed that statement was—my son wasn’t dying, and the grief I felt would have been mitigated had I known more about neurodiversity or had I met the wonderful autistic adults I know now.

Don’t forget to hope.

In the early days after my son’s diagnosis, I despaired. There were so many people telling me my son was broken, I lost my way. Eventually, hope replaced fear, but I wish I could tell myself that my child moving along a different developmental trajectory is not a reason to lose hope.

Things will be harder than you expect, and there will be more joy than you can imagine.

The last five years have had some very rough spots, but they’ve also been filled with more joy than I ever expected. I’d like to tell my younger self that yes, there will be hard days, but you will be constantly surrounded by laughter, snuggles, and joy from both your children.

Autism means a different neurology, not a broken one.

Why didn’t someone tell me this sooner? Autistic adults and other writers are certainly trying to share the message that our kids are different, not damaged. They don’t need a cure, they need support. Knowing this on diagnosis day would have changed so much for me.

Your boy will laugh, love, connect, and grow—all in his own time.

The first prognosis seemed so grim: severe autism, probably will never communicate or show affection. Likewise checklists showing his “developmental age” were just dreary. I want to tell my younger self—don’t believe these! Believe in your child. Nurture his potential, follow his interests. If he loves something—like stimming or spinning or watching Elmo—let him enjoy it. He will be a happier child if you do.

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He will communicate.

When my son stopped talking, I thought that meant he would never communicate. I was so very wrong about this, as his use of RPM and other communication methods have shown us he’s got a lot going on in his mind that he wants to tell us.

More here: http://www.parents.com/health/special-needs-now/15-things-i-wish-id-known-when-my-son-got-an-autism-diagnosis/


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.