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

My son Tommy has autism. He’s 14. I’ve noticed that he’s “different” from a lot of other kids his age, but there are also plenty of similarities as well.

1. Teenagers have a smell about them. Whether it’s body odor or too much cologne, some sort of scent is usually wafting from their bodies.

2. I don’t have to worry about my son sneaking out at night. He’s really big on rules. If I told him to be in by 10 p.m., he’ll be back by 10 p.m.

3. His moods can be all over the place like any teen. One minute he’ll be smiling. The next he’ll be glaring at me.

4. He won’t risk smoking. Or getting drunk. He cannot believe anyone would do these things. “Don’t they know their lungs will turn black? Why would anyone want to get drunk?” He’s just as appalled over drugs.

5. He spends hours on video games like many teenagers. When he emerges from his room, we sometimes start clapping. “You exist!” I’ll sometimes shout.

6. He might not be driving when he’s 16. He can panic when he gets overwhelmed, so he might need more time to cope with these feelings before he gets behind the wheel.

7. I’m not sure when he’ll have a girlfriend. He still struggles with understanding different emotions. I have faith there is a girl out there for him, though.

8. He’s not interested in sports. He never has been. He tried track in fifth grade and wasn’t a fan. He tries hard, but playing catch with him is tricky as he can have difficulty catching the ball or throwing it. He’ll try to be polite if someone in the family offers, but you can tell he’s not really enjoying himself. Football has always bored him.

boy wearing gray t-shirt and smiling
Amber’s son, Tommy.

9. He probably won’t be going to any school dances. There’s one coming up and I asked if he wanted to go. He was like, “No, thank you.”

10. He doesn’t walk around with earbuds in his ears all the time. He cannot stand things in his ears and he doesn’t care to listen to music at all hours of the day.

11. He eats like most teenagers. He never seems to be full. I once watched as he ate a footlong sub from Subway in five minutes. And he was still hungry. However, his diet isn’t like a lot of teenagers’: He doesn’t like soda. It’s too “spicy” for him. He doesn’t like chewy candy. He doesn’t like if you put cheese on his burger. He’d live on rolls if I allowed it.

12. He hates wearing shorts. He’s noticed that a lot of boys his age wear shorts, even if it’s freezing. He doesn’t comprehend this. If it’s below 72 degrees, he must be in a long-sleeved shirt. He also hates wearing flip-flops. Even if we’re going to the pool, he prefers to be in socks and shoes. When we go to the beach I can get him in flip-flops but only because he can’t stand the sand stuck in the socks.

Honestly, I’m happy he might not ever be like other teenagers. He is who he is.

He’s Tommy.

Follow this journey on Airing My Laundry.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

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