To the Doctor Who Unknowingly Said the Wrong Thing When Our Son Was Diagnosed With Autism

Dear Dr. Aaron*:

More than seven years ago we sat down in your office so you could tell us what we instinctively already knew. You confirmed that our son’s developmental delays and lack of meaningful social connections were caused by autism.

During our meeting, just days before Evan’s 2nd birthday, all we could think to ask you was what you thought he would be like when he grew up.

You immediately answered us by telling us about a boy you knew who went to a community college and had a girlfriend. (But, you added she won all their arguments.)

Seeing the multiple degrees hanging on your walls and all the scholarly books lining your bookshelves, we left your office at a prestigious hospital thinking the best we could hope for was community college and a girlfriend who is always right.

In retrospect, our question was not a fair one. You are not God. You do not have magical powers, and you do not have the ability to see into the future. A friend best described you when she compared doctors to meteorologists. You can take all your knowledge, she said, and give us your best guess. But, she said, every storm is different and every storm can take an unexpected path.

How often do you have to look across your desk at an anxious set of parents and tell them their child has autism? Based on the most recent statistics of 1 in 68, I’m guessing these conversations are quite frequent. I’m also guessing it doesn’t get any easier, no matter how many times you have to do it.

I would like to give you a suggestion on how to answer the question we asked so many years ago because this is what I needed to hear from you on October 29, 2007:

No one knows what the future will hold for any child. Yes, the journey would probably be easier and perhaps more predictable if you child did not have autism. Your job as a parent is to continue to love your child as I know you will and never ever lose hope. But, when you do, because it’s bound to happen on many occasions, don’t forget to find it again. It’s still out there and always will be. Just be realistic and focus on the journey and not the destination. Enjoy your child. Advocate for your child. Work hard for him. Push him to work hard for himself.  The sky is the limit. But also know that he may not reach the sky. He may barely get his feet off the ground and that’s OK too.

So please, Dr. Aaron, instead of telling your story of community college and a girlfriend, please consider telling parents what I needed to hear at the start of my journey. You have my permission to take my words verbatim. Claim them as your own or alter them as you see fit. Just spread the message of realistic hope.


Please, share this advice with your colleagues as well because every parent of a child with special needs has had an adverse experience with a doctor or other specialist along the way, particularly when that doctor or specialist does not know how to answer a parent’s question.

You have a tough job. I don’t envy you. When parents ask you these difficult questions, answering is a hard balancing act. We parents need hope because hope gives us a reason to push forward. But while hope can be so powerful, false hope is so devastating so please, be careful.

Thank you.

*This doctor’s real name has been changed.


People Standing in Line at a Bank

To the Woman Who Saw My Son With Autism Get Away From Me in the Bank

Two days after our nation was devastated by the 9/11 attacks, I was still on edge, distraught and trying to cope with all that had happened. My son, Alex, who has autism, was 4. September 11th was a day he wouldn’t come to understand for some time.

coal sitting in a chair We headed to the bank for our usual errand. Alex, like most children, can’t get enough of those ropes that guides us through the waiting line. That morning, I came in to find quite a line. I’d have chosen the drive-thru, but it was packed and I figured at least the line might move faster with so many open windows. The group that day was quiet — most people lost in their thoughts of what was going on in the world and on the news. My son, quick as a puppy on the loose, took off under one of those ropes and headed for the back office area where one could conduct loan business apart from the teller area. Before I could even excuse myself from the line, he turned off all the lights in the bank. There was a large wall plate with six or so switches, and he just swooshed them all off.

The bank plunged into darkness, and I demanded he come back to my side. A quick-thinking teller turned on the switches and marched my son over to me, lamenting that children have done that so many times. I could feel the stares. Some people mumbled quietly, making side glances and “tsk-tsking” the mother who couldn’t control her child.

Suddenly, an older woman behind me gently put her hand on my shoulder and spoke quietly to me.

“I don’t mean to bother you,” she said, “but I wanted you to know that I understand. Many years ago, I had a little boy like you have now. He’s grown now, but I went through so many times like you’re going through right now. I just wanted you to know it’s OK. Things will get better. They might get worse before they get better, but just give it time and keep doing what you’re doing.”

Then, just like that, she pulled her hand away. Hot tears fell down my cheeks, as I stood, grateful for the sunglasses I still wore. My son calmed down after a stern talking to, and the line moved. I cried when I got to the car, the relief of getting out of there and the kindness of that woman washing over me.

I never saw her again, but I never forgot what she said to me that day. It did get worse before it got better, but I wish I knew who she was. I’d like to tell her myself.

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. Check out our Submit a Story page for more about our submission guidelines.

When I Realized ‘Delay’ May Actually Mean ‘Never’ for Us

I can’t remember the instant I first heard the phrase developmental delays.

But I can remember the feeling. Relief. Compared to all the wicked things that appeared during my anxiety-driven, late-night Google binges, this was one I could accept with grace. Developmental delay I could tackle. And full throttle was the only speed at which I would accomplish this.


My precious firstborn son, Greyson, was 22 months old. Each day I could see in his eyes that he was drifting further and further away from me. I was doing everything I could to reach my arms out as far as possible to catch him — but my fingers could only stretch so far.

I would sing to him as I rocked him to sleep.

You are my sunshine. My only sunshine. You make me happy. Your name is Grey. You’ll never know, how much I love you. Please don’t take my sunshine away.

That last sentence almost always brought tears so fast they leapt from my eyes. You see, they weren’t simply song lyrics; they were a desperate plea. Born from fear and pain and anger and confusion. That’s what it felt like — someone was stealing my Greyson’s sunshine, and I was the worst mother in the world because I had no idea how to stop it.

Delay: noun 1. A period of time in which something is delayed or postponed. 

A delay can be fixed. A delay implies, we may be late, but we will eventually get there. So we dove right in, eager to catch up. Twice weekly Early Intervention preschool, twice weekly speech therapy, 30 hours of at home Applied Behavior Analysis (ABA) and play dates with typical kids.


We found a doctor who prescribed daily B-12 injections, probiotics, fish oil, digestive enzymes, hormone creams and a long list of herbs and enzymes, vitamins and pills I couldn’t even pronounce. I felt like a chemist, and I hoped I was pouring the perfect concoction that would have the power to bring Greyson’s sunshine back.

Months went by, and the gap between what Greyson was doing in comparison to his peers grew exponentially bigger, as did the sick feeling in my gut. I could barely stand to watch kids his own age play at the park because it reminded me what he wasn’t doing. It reminded me that I was failing him. I needed to do more; I just had no idea what more even looked like.

For a year, we chased that delay, Monday through Friday. Sometimes from 8:30 a.m. until 5 p.m. We chased it through times I wished we were actually at the park. Times when kids his own age were napping. But no matter how fast we ran, that delay — it always ran faster. And one day, soon after Greyson turned 3 and was diagnosed with autism, it hit me. Our delay may never go away.

When it comes to developmental delay, “delay” can also mean never. My son may never speak. He may never call me “Mom” or be able to tie his own shoes. He may never give me a hug all on his own. He may never attend a regular school, and I may never ever be a regular mom. The kind of mom I thought I had signed up to be. And the pain of all of that hurt so bad that sometimes I wanted to die. The sadness burrowed deep in my bones and consumed me. My sunshine was gone.

And it took time. And a patience I was forced to adopt. I stopped setting the finish line so far out of reach and instead set it for the end of each and every day. We stopped relentlessly racing and instead took our time and enjoyed the adventure. The whole of life isn’t a sprint; it’s a life-long cross country glide. And when I actually slowed down, I realized the scenery was profoundly beautiful. I realized Greyson is exactly the boy he is supposed to be, and I am exactly the mom I was meant to be. I realized how lucky I was to be living this sometimes painful story.

My son showed me how beautiful our imperfect life really is.

We started to take things a day or two at a time because the future felt too scary and unclear. I decided we would no longer wait to be happy. We wouldn’t wait until Greyson started talking or was mainstreamed at school or got a job — he was only 3 years old, and the future can still hold absolutely everything.

Greyson is now 5. He still doesn’t really talk, and he won’t be mainstreaming in a typical classroom anytime soon. And as far as I know, he doesn’t have any job interviews lined up. And you know what? I don’t really care. He and his brother bring me a joy I never knew was possible.

I look back at our beginning with respect, sadness and joy. I wish someone had told me that “delay” could also mean “never” but that we would still be OK. But who knows, maybe I wouldn’t have listened. Some things are best when we live them and figure them out all on our own. And now I realize — Greyson’s sunshine was never gone. I just had to be willing to look beyond some clouds.


This post originally appeared on Life With Greyson + Parker.

When a Person I'd Never Heard of Gave My Son an Award

10933758_10153028358283841_6093409176430350505_n Sometimes, when I hear people speaking disparagingly about the disabled, I want to show them a picture of my son, Pete, and say, “This is what autism looks like.”  Because there’s nothing piteous or sad about my Pete. He’s about the best person I know, and I feel lucky to be his mom.

In some ways, Pete’s just like other teenagers. He likes hip hop music and sequestering himself in his bedroom. He likes to dress a certain way and likes hanging out with his friends. In some other ways, Pete is wonderfully unique. One of the most amazing things about Pete is the way he cares about other people. Pete likes to compile information about a person when he meets them and likes them. He’ll remember their birthday, their parents’ and siblings’ names, what kind of music they like. Pete will remember this forever. When we walk across the campus of his middle school together, kids always shout out, “Pete, when’s my birthday?” to which he will gleefully reply with the correct date.

Pete’s had to work hard with his speech therapist on friendship, though, because he’s struggled. He had to be taught how to keep a conversation going and how to ask questions and not dominate the conversation. He had to learn to bring up topics that a friend might be interested in and not just talk about presidents or hip hop. Pete made such great progress in this area that his speech therapist awarded him “Student of the Quarter” when he was a seventh-grader. Pete was proud and so was I.

I was astonished when he came home with another Student of the Quarter Award this year. This is what it said:

Pete has exhibited good citizenship and school work habits.  He is always in a good mood and respectful to students and staff.

It was signed by a person named Frank. I asked Pete who Frank was, because he’s not Pete’s special education teacher, mainstream teacher, adaptive PE teacher or speech therapist. Pete told me that Frank is the school’s janitor. He then proceeded to tell me Frank’s birthday, parents’ names, number of siblings (and all their birthdays) and details about Frank’s children.

Pete didn’t see why being nominated by Frank moved me so much. And that’s because Pete does not judge anyone. Pete values every human the same way, as long as the person is kind to him. Pete doesn’t know that most eighth-graders don’t want to hang around chatting with the janitor.

Being Pete’s mom has opened me up and pushed me out of my comfort zone over and over. He’s taught me things I don’t think I ever would have learned without him. I think so far, the most important lessons I’ve learned from Pete are how to be more accepting and how to see the best in people.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Yes, I’m Nonverbal. But That Doesn’t Mean I’m Unintelligent.

Screen Shot 2015-01-30 at 9.26.24 AM All people communicate, but not everyone talks.

Some people talk a little but not conversationally. Some people say words and phrases out loud that don’t match what they really want to say.

Sometimes I use talking words, but I’m still very much nonverbal. Saying words out loud is not always possible or accurate for me. My pronunciation of words isn’t totally clear, and I say words in a different order than most people would. I can more fully express myself using a letter board or Proloquo2Go.

Many times I say nonsensical things like, “Larry boy!” or “Go back to green house!” and I repeat it many times for no reason. I hear myself and think, Boy, I sound ridiculous; and I wish I could stop, but I have no control.

When people ask me things, I know exactly what I want to say, but there is an ever-present blockade between my brain and my mouth. It is extremely frustrating, as you can imagine.

Especially damning are the assumptions that my intelligence is low because of my thwarted attempts to respond the way others expect — with verbal words. I can remember a time when a person said to Mom that I have a very low IQ of 40, and I wanted to scream, “No!” But I couldn’t. It was horrible not to be able to defend myself.

I sincerely, altruistically, hope and pray that more autism pros like teachers and doctors will realize that autism causes major issues with getting the body to cooperate with the brain to respond. But ability to comprehend is unaffected. This will make way for more appropriate help for people with autism.

This post originally appeared on Red Roses for Autism.

Dear Disneyland Staff Member Who Saw Past My Meltdown

My mom and I walked into guest services; I was visibly upset after a misunderstanding with a cast member. I sat there crying, in meltdown mode, as my mom began to explain the situation. You and your staff understood. You welcomed us to stay there as long as I needed to, which was a kind gesture.

But what happened next was the most magical of all.

After asking my mom, you came over to me, and I agreed to listen to your idea. You began to tell me how busy princess Rapunzel was. (She’s one of my favorites and was one of the two princesses I hadn’t met yet.) It was near the end of the evening’s Halloween party. I was overstimulated but determined to persevere and enjoy it after all we’d been through to get tickets to the sold-out event.

Rapunzel was busy, but I wanted to see her. I didn’t know what you had planned. You asked me if I’d like Rapunzel to write me a letter — you’d call her and ask her to do it, you said, and I could pick it up at the end of the evening. I agreed. Off mom and I went, and later, on our way out, we walked into guest services, and sure enough, an envelope with a signed picture of Rapunzel and Flynn Rider was in it. I was ecstatic! I’m sure you probably pulled it out of a file and signed it yourself, but for the purpose of this, I’m choosing to focus on the magic… because it’s Disney, after all.

If you ever read this, thank you, from the bottom of my heart

Thank you for not making assumptions about me.

Thank you for not assuming I was acting like a brat.

Thank you for not judging me or making me feel bad.

I don’t remember your name, but thank you.

Thank you for looking past my meltdown and seeing a young lady who was truly overloaded and frustrated and who believed in every ounce of magic Disney had to offer.


The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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