I remember the day that a vortex of words swirled around my head as the world shifted under my feet. I felt the hair on the back of my neck rise. I felt the tears I didn’t want to acknowledge held back. And all I could think was, “Keep asking questions. You have to have more questions.” Because when you stop asking questions and they walk you to the door and you step into the sunshine, your world will be a completely different place.

Looking back as one always does, we beat ourselves up and ask, “Should we have seen it?” Our beautiful baby, Caleb, was as new as our experience being parents. He was tiny, he was perfect, he was ours. And for his first year while we lived in Mexico, strangers cooed over him and snuggled him up every day. They loved that he was Mexican by birth and that his eyes were bright blue, but they always remarked, “El es muy serio.” I would take tons of pictures just to get one of him smiling, and usually I would have to tickle him to get that. We used words like observant, intense and concentrating to describe him. It just never occurred to us that those were terms less commonly used with babies.

boy sitting in mom's lap
Lowe and her son, Caleb.

Once we moved back, I remarked to the doctor I had worried about his hearing because he never reacted to us calling his name. That he was completely terrified of the vacuum. That he loved his board books so much that he ate them — all of them — down to the spine. When he was upset, it would take over an hour to calm him down.

As the year rolled on, we noticed more. Caleb’s speech and walking were delayed. He could repeat movie lines but not individual words. He would repeat anything you said to him but never pointed and asked for things. His favorite toy was a cooler. He would go into tremors at loud noises but did not seem to feel pain when he hurt himself. He would run into furniture over and over again. Sometimes he would seem to lock up, and you would have to shake him to get his attention. And we would look these things up and convince ourselves he didn’t have all the symptoms of autism spectrum disorder (ASD), so we should just wait and see.

When he was 28 months old, we finally had our epiphany (or it had us). We went to a family gathering where there were oodles of kids, and since we didn’t know other children his age, we thought he would love it. But when he walked into the melee of boisterous, laughing children, he just laid his face down on the floor. We thought he must be sleepy, so we put him in a bedroom to nap. When we went to check on him, he was standing in a corner tracing on the window. We tried to take him back to the kids’ room, and he just laid his face down again. So I watched. And I finally realized he was actively avoiding other kids, he never answered to his name, he didn’t make eye contact, he didn’t “see” other people and he was completely isolated.

We called a pediatrician. She didn’t believe us, but thankfully, she did send us on to the Child Development Services Agency (CDSA). There, a team of amazingly gentle and caring people diagnosed Caleb as having mild-moderate autism and sensory processing disorder.

I somehow knew and yet was stunned at the same time. Terms like proprioceptive, vestibular, auditory processing, IEPs, occupational therapy and echolalia swirled around in my head trying to catch hold. And I was terrified. Would he graduate? Would he drive a car? Hold a job? Live on his own? And the burning question I still hold most important: Would he fall in love and have someone fall in love with him?

As a mom, could I do enough, could I understand, could I reach him? The world — and all the expectations you held in it for your child — changes at that moment and there is nothing you can do about it.

And the thing that no one tells you about is how lonely it is. How separate you feel from society because of the way it reacts to him, to you, to us. The stares, the nervous twitters, the extremely rude comments. Onlookers who judged you because your child had a meltdown in public and started hitting himself in the face. The parents who pull their children closer like your child is contagious. The people who say things like, “He doesn’t look autistic,” “He will grow out of it” and “I could tell. I knew there was something…” And then they realize they were about to tell you your child was “wrong.”

And the literal mother of all concepts that ASD is caused by something I ate, I did, or worse, that I didn’t do enough of. The friendships that dried up and invitations that disappeared. Him trying to understand the world and me struggling to help seemed unfair enough without everyone else’s uninformed opinions, indifference or disregard.

So I learned to speak out. To be comfortable sharing Caleb’s diagnosis and story. To be open about who he is and how difficult moments can be. To never, ever, ever judge someone else because our paths as parents and as families are difficult enough. To be a good listener and strong supporter of other families on the spectrum. To be honest enough to seek support when I need it.

Our journey has taught me so much about myself and so much about Caleb. It has taught me how to truly see my child as he is. That to reach him and to teach him, I have to meet him where he is.

And to think back to that day, I remember clearly how it felt when I stepped out of the CDSA with his small hand in mine and took a deep, dizzying breath. How I sat at the wheel afraid to leave, turning the car on but not over, and then hearing that small voice belting out “Sesame Street” disco songs. I looked into my rearview mirror at my beautiful, smiling child who wasn’t a diagnosis. He was just our son. And now, we knew we had a path to reach him. I smiled wide at him and turned the car over.

There are many excellent sites and resources for learning about autism. Here are a few that were helpful for my family:

Autism Society

Centers for Disease Control and Prevention (CDC) Autism Spectrum Disorder Page

If you know a family with a diagnosis, I feel the best thing you can do is give them opportunities to hug, to listen, to laugh, to cry and, most importantly, to share. With current autism spectrum disorder rates as high as one in 68 children, according to the CDC, I believe we all need to know how to support families already out there.

A version of this post first appeared on The Snap Mom.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


There’s only one way to get it off my chest, so I’m writing it in a blog.

You upset me today. You made me cry. You made me feel awful, and that isn’t OK.

I don’t know if upsetting me or being hurtful was your intention, but that was the result.

I arrived to pick my daughter up from the regional Girl Guides Thinking Day and happened to stand next to you. I had my 5-year-old son with me. He was in a mood and completely hyperactive. At one point, he stood calmly next to me, holding my hand and listening to the speeches.

Jenna Cooksley

You smiled at him and said, “Hello.”

My son doesn’t know you. So he did what he does when he’s uncomfortable — he hid behind me and refused to look at you or respond.

“Wow, that’s rude,” you said to me. “Won’t even say hi to me.”

I smiled at you because when someone insults my son in ignorance, that’s all I can respond with.

A few minutes later, he’d calmed down enough to say, “Mum, can I go to the playground and play please?” I replied in the affirmative, and he ran off happily to play.

“Ah, so he can speak when he wants to go play,” you joked.

After a few years of speech therapy he’ll talk, but he won’t talk to people he doesn’t know,” I replied.

You responded with, “Well, it’s probably a good thing he doesn’t talk to strangers.”

I wish I’d said something more. But I didn’t. I stood and proceeded to watch my daughter interact with the other guides.

There was so much I wish I’d said to you.

I wish I’d told you how he barely spoke more than a few words until he was 3. About how he would then only speak in one-word answers, never saying more than he absolutely had to. He’d rather point than speak.

I wish I’d told you about how far he’s come since he was diagnosed with autism when he was barely 2 years old. That he’s had years of speech therapy to get him to learn how to respond when people talk to him and how this “phase” of not talking to people he doesn’t know is stressful for him — and for me. Some people shrug and accept that not all kids like to talk to people they don’t know, while others give the impression that it’s either bad parenting or a rude child. Neither is true in the case of my son.

I wish I could have told you how much your words hurt. How I went for a walk away from the group and cried because you made me feel like I should have made my son speak to you.

How I worry that he won’t be able to ask for help if he gets lost because he may not speak to anyone.

How I worry that if he’s bullied or hurt at school, he’ll shut down and not be able to talk to anyone.

How he might become isolated and alone because he shuts down and won’t talk.

How many other parents judge the fact that he won’t talk to them, and how some people perceive it as rudeness rather than a shutdown.

I don’t make excuses for my children’s behavior. Autism doesn’t mean they can’t be rude. But I’m not going to make my child speak to someone if he isn’t comfortable doing so. His body and his words are his. They are his to share or not to share. I won’t ever make my children hug people that they don’t want to. It’s their body, and they make their own choices about who to share personal space with.

I wish I’d been able to tell you about all the challenges my son has overcome. He goes to a mainstream school and doesn’t need an aide. He is clever and knows the alphabet, while most of the other kids are still learning it. He’s bright, vivacious and loves to chat with people — once he knows them and is comfortable with him.

I wish I could have told you all of this.

But I just smiled at you and pretended your ignorance and hurtful offhand comments didn’t hurt me to the core.

I wish you’d understood.


The Mother of Two Amazing Children

Follow this journey on Adventures of the Now.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Izzy Joy, 28, is a graphic artist with autism, and she recently self-published the book “Strange Things,” a collection of digital illustrations she hopes will show others what her life on the spectrum is like.

Joy is based in Wellington, New Zealand, and last year she graduated with a degree in graphic design from Massey University. Joy chatted with the local news outlet Wairarapa Times-Age about her book, which she describes as a “visual diary” of her observations and her fascination with the natural world.

“I wanted to give some idea of what it’s like living with autism,” Joy said. “It’s why I have a lot of detail in my drawings — it’s an almost obsessive compulsive thing, and something I find really meditative.”

sea treasures Posted by Izzy Joy on Monday, September 28, 2015
some lines Posted by Izzy Joy on Tuesday, September 29, 2015


Joy cites her major influences as botanical illustrator Sydney Parkinson, Beatrix Potter and her father, who is a scientist. She told the Wairarapa Times-Age that she turned to art after struggling to express herself, and many of her experiences are reflected in “Strange Things,” like her attention to detail and fascination with certain subjects. Many of Joy’s illustrations are black and white and focus on human anatomy, crustacean shells, hands and fungi.

“Temple Grandin once said to focus on your portfolio and let it speak for you, so you don’t have to focus on trying to fit in,” she added. “This book speaks for me.”

shiny new book Posted by Izzy Joy on Monday, October 26, 2015
  For more of Joy’s drawings, visit her website and Facebook page.

When Temple Grandin spoke at the SXSWedu Conference & Festival opening keynote presentation in Austin, Texas, on Monday, the famed author and autism advocate made a number of points about reforms our education system needs to make to benefit children of all abilities.

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“We want to help students be everything that they can be,” she began. Grandin explained how she’s a visual learner, and it was only after being exposed to different areas of study that she was able to discover what she was truly passionate about.

Grandin urged educators to find their students’ strengths and interests, rather than focusing on labels and what they cannot do, proposing that students be given access to as many subjects as possible in school.

“We’ve got to start working more on building up the kids’ strengths,” she stated. “Kids are getting labels, “mild autism,” “Asperger’s,” “dyslexia,” “learning problems,” this and that. Whatever you want to put on them, often have uneven skills. Good at one thing, bad at something else. We need to get a lot more emphasis on building up the things they’re good at  — the things they can turn into a career.”

Grandin also explained that getting in the habit of labeling early on may cause conflicts later, noting the gap between “field people” and “academics” in a number of professions.

Grandin is best known for developing a more humane system for cows being led to slaughter, which is used in facilities housing half the cattle in the United States. She currently works as a professor of Animal Science at Colorado State University.

Watch her full keynote speech above.

h/t Ed Surge

Please don’t assume parenting a kid with autism is the hardest part of my life. He’s not, but other people can be. I can’t imagine a child who does what I ask without asking for a reason and offering a five-point argument in return. I can’t imagine watching my child eat salad. Or anything green. I have no desire to change my son, or those parts of my husband and myself that are reflected in him.

If you have a kid who is any way out of the “ordinary,” then you will likely be handed advice from other people. These people may mean well, but I think they’re jerks.

There are people with a list of what it means to have autism, and what it means to parent a child with autism. This list is generally negative. I know it is; I’ve heard it many times: Violent. Aggressive. Lacking empathy. Needs discipline. Can’t let them get away with anything. Only way they’ll learn.

These people are often strangers, but sometimes they’re our friends and our family, and they whisper to our fear that we are bad parents. Bad parents parenting bad kids, and doing it badly.

And when we hear that list, what do we do?

Sometimes we walk away. We grab our beloved children and we hightail it the hell out of there. We rant. We scream. We hold our children close and whisper, “You are loved.” But how do you shake off the condemnation of others in something that is so close to your heart, especially if your kid totally did push the toddler down the slide?

I have my own list detailing the courage of my 5-year-old son — the way he takes a deep breath, bottom lip thrust out and eyes wide as he walks, haltingly, knowing it’s going to hurt, but not knowing how much and in what particular way — as he moves his body and senses into a new space. This is f*cking bravery. A list detailing his acts of empathy and compassion to those who don’t or choose not to see it: his focus, determination and his delight at making his little sister laugh. This boy who loves so fiercely and quickly and whose heart can be broken so easily.

When I’ve pointed out this list to others, what I’ve found is that my list is not often wanted. Or it’s ignored with a sweep of a hand, an “Of course he does good things, but he does bad things too, right? Bad things?”

Worse still is when I give the list and instead of feeling empowered, I feel dirty. I shouldn’t need my list. It panders to the idea that his existence requires a balance — as long as my list is bigger than theirs, he is valuable. I should not have to defend my child’s existence by weighing up lists. No one should. Then there’s my son.

little boy wearing a green crocodile costume
Kitty’s son wearing a crocodile costume.

He listens.

He hears.

He understands.

Is he balancing his worth based on lists? Does he feel like only bits of him are worthwhile? Loveable?

Maybe it’s not other people that are the hardest part. Perhaps it’s the attention I pay them, the parts of them I let into my relationship with my child. I don’t know how to navigate this, to teach my kid that all of him is worthwhile when he’s in a world that presents challenges for him. I can control the world he and I build together.

The world we build will be gentle, and it will explain (repeatedly, probably, and with visuals) and slowly, we will add more people — people who love him and people who understand. These are the people I will listen to, the people who will speak to my heart and the people who, I hope, will eventually become the world for everyone else like him, too.

A version of this post first appeared on Playing With Fireworks.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

short video recently released by Autism Speaks takes an intimate look at the relationship between two brothers, and one’s experience in an adult assisted care facility.

Author Eli Gottlieb, best known for his book “Best Boy,” became the guardian of his older brother Josh, now 60, when their parents passed away. Josh, who’s on the autism spectrum, has a “profound anxiety disorder, perseverates constantly”  and requires direct care staff.

Aging with autism: A brother’s storyA look inside the relationship between two adult brothers, one on the autism spectrum, who grew up at a time when very little was know about autism…

Posted by Autism Speaks on Saturday, March 5, 2016


While Josh and his family are content with the care he’s receiving, Eli points out a number of problems with the system designed to help adults with intellectual and developmental disabilities.

“The world of the adult individual with autism is sorely underrepresented, both at the policy level, federally and state, and most of all, in general,” Eli, who’s written on this topic in the New York Times, says in the video above. “It’s just not talked about. My brother is lucky. He’s in a beautiful place with a great fit and he’s happy.”

Eli cites turnover as an issue, which he believes is a direct result low salaries of direct care staff. He also notes that the waiting lists are a problem, along with the shift of family funding from federal to state once people with special needs are over the age of 21.

What’s your take on the video above? Let us know in the comments below.

h/t Autism Daddy

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