Little Boy Getting on Bus

When your child is on the autism spectrum, the journey is full of twists and turns and bumps and many forks in the road demanding a decision you often times second guess. There are no easy answers and a myriad of questions — and no two roads are the same of course. One of the things we faced when my son was 5 was if we should keep him in the current therapy center he was at or begin him in kindergarten (with assistance) at our mainstream school. Of course our hopes were to have him begin school with his peers and neighborhood friends. But he was doing really well at his therapy center and making progress. And the truth was we didn’t feel he wasn’t quite ready for mainstream school yet. We decided it was best for him to stay put, continue his therapy, skip his kindergarten year and start with his class his first grade year. It was a good decision.

But I’ll tell you something that’s not in any of the manuals and resource books about autism — you as the parent may have moments of sadness that sneak up on you. There are sneaky little moments like seeing the kindergarten bus tooling around your neighborhood picking up freckle-faced grins for their first day of school with their teary-eye parents holding cameras and waving. That was my moment. I didn’t get that first-day-of-kindergarten moment with him. As that happy bus drove by my house, I realized I would never have that moment with him. And a well of emotion overtook me. I am not a big crier and yet here I was looking out the window watching the bus pull away and tears were rolling down my cheeks. Why?

I knew it was best for him to be where he was at. The social skills needed and the loose structure of kindergarten may have made him very unhappy. It could set him up to fail, and I didn’t want that. So in no way did I second guess the decision to keep him where he was at. But I was sad.

So why was I crying? Wasn’t my son where he should be? Why was I upset about him not going to a place that wouldn’t suit him well at all.

I suddenly realized this had nothing — Not. One. Thing – to do with my son and everything to do with me.

Me! I wanted that kindergarten moment. I was having a pity party for myself. Being sad about that “picture perfect kindergarten moment” was me grieving the loss of what I thought was supposed to be. But in that moment of realizing this was all about me and my ego-driven ideals, I found a sense of peace.

Yes, my life was different and so much more enriched because of the road I was on with him. I learned to find joy and delight in the smallest of moments. I celebrated little victories. I slowed down. I was intentional. I figured out what was really important. My son wasn’t sad to be missing out on that first day of kindergarten — he was thriving and happy where he was at! And that’s what was important. It wasn’t about me.

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One of the most frustrating misconceptions out there…

Has anyone ever heard it said that a child with autism is a product of bad parenting? This “bad parenting” topic became a somewhat viral discussion in 2012 when clinical psychologist Dr. Tony Humphreys linked autism to parenting. Although Humphreys would later clarify some of his findings, saying parents are “never to blame,” his research had many people talking about the overall effects of parents on children with autism.

Many of these issues arise when I talk to parents today. Most of them, especially when their child is just diagnosed, blame themselves in one way or another for their child’s diagnosis. It’s heartbreaking. During those conversations, I share that I’m not a scientist by any means, but I do have some knowledge from growing up on the spectrum. Though after years of therapy, most of my early challenges were not as difficult to me anymore.

It’s ridiculous to think “bad parenting” is a cause of autism. That should be the end of the conversation right there. But I do usually follow up these conversations after sharing about my personal experiences by saying the following:

“By being a champion to your child on the autism spectrum, you can make a difference in their lives.”

By showing your child unconditional love, learning more about autism and providing them with supports whenever possible, you can do wonderful things for your child. Advocate for them, and whenever someone says autism is “caused” by bad parenting, make sure to educate those around you about the harm of these misconceptions. And the next time that happens, you can use this quote from one of our leading autism advocates, Dr. Temple Grandin“Autism is a neurological disorder. It’s not caused by bad parenting.”

That’s a fact we should never forget.

A version of this blog originally appeared on

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When I found out a few years ago that I was on the autistic spectrum, it was a huge relief. It made so much of my life suddenly make sense. My “shoddy” school behavior and difficulty with monotonous jobs was all attributed to ADD. The social awkwardness I could never get over? Totally autism! Still, for the most part, the discovery was a novelty. I figured that I’d just go along with my life like I always had, and maybe being aware of my quirks and weirdnesses from a different angle would give me more power over them.

Well, I was a little right, but not quite enough. Actually, nowhere near enough. I mean, I was able to identify my quirks as relating to my neuro-atypical-ness, but it’s taken even more to figure out the difference between what made me “me” and what was an affectation that I’d developed for getting on in the world.

See, when you don’t know that you’re an autie and you feel separated and different from other people, you try to hide it, compensate for it. After all, why can’t you stay interested in regular subjects or sports? Why don’t you like the things everyone else likes? Why can’t you pay attention? What can’t you just suck it up and be like everyone else? What the hell is wrong with you?!

You try to act like other people do, you try to blend in with their weird little social rituals. You try to understand why they do what they do from their perspective, ideally, but you can’t necessarily relate to why they do what they do. You do your best to mimic them and go through the motions, and you can pass as them for a little while, but it’s hard. Like, really hard.

Hard maybe isn’t the most accurate word, though. Maybe that’s part of it, but more accurately, it’s exhausting.

Birds and Fish

Imagine being a bird in a world of fishes. You’re on the shore, and you’re supposed to go to school (heh) with them, and you’re supposed to get on with them, but you’re still a bird. But, it’s what you’re supposed to do. So, you dive in, hold your breath, do your best to make friends. After a while, you can’t hold your breath anymore. You have to come up for air, to get back to your own element. Your fish friends and lovers sometimes get pissed off because you leave them suddenly. Some understand, or at least accept, that you literally cannot help it. You have to breathe, for f*ck’s sake.

Some auties learn to get through this by holding their breath for a really, really long time – unnaturally long, even – and then when they have to come up for air, it’s a huge explosion of flailing and gasping. Others work out ways to only spend a little time hanging out with the fishes and then hiding on the shore so that no one realizes they’re not in the water all the time.

Me, I kinda want some SCUBA gear, I think that would work best, but I also want to have permission to not be in the water all the time. SCUBA gear would make it so that I could be comfortable hanging out with my fish friends. I wouldn’t have to think about how the f*ck to breathe when I’m around them after more than a few minutes.

Another big problem is that the world is made for fishes, so a lot of the mapping and processes that we’re taught in school and for work only apply to fishes and to the life underwater. When you’re a bird, you can’t use the aquatic navigation methods to get around the sky. And because no one teaches bird-type things as a regular course of life; most of us are on our own trying to sort it out.

And that means that when we do finally find each other, we’re often just as confused as everyone else as to what it takes to get on in the world. And then it’s even more complicated because there’s more variation in birds than in fish, it seems, so what works for a sparrow isn’t going to work for an ostrich or a hawk. We have to take bigger and bigger perspectives of the world in order to make any kinds of real general statements about our condition.

So, that’s how it feels when we’re trying to get on in the world. It sucks a lot. We’re all in unmapped territories, trying to find our way. It’s difficult living with fish-things, but in general, we like fish. We like hanging out with them and making friends with them and sometimes even being lovers and getting married and having biish or fiirds or whatever they end up being. We want to try to get along with them.

We just can’t be the only ones making an effort.

The Glass Wall

There are lots of different types of birds/auties, and it really seems that no two are the same. There are general characteristics, of course, that get mixed and matched together into every one, but sometimes that’s just presentation. What works to help control the less desirable behaviors in one might not work in another. This makes ideas like therapy really touchy, especially when words like therapy come out as synonymous with “because there’s something wrong with you.” Our greatest commonality is that we are fully human, and we want to be treated as such.

For all that any general statement is hard to make about auties, there are some commonalities I’ve observed. I’m not saying this is true for every last person on the spectrum, but it does seem to be holding up a great deal to scrutiny. (Your input, gentle reader, is encouraged.)

Specifically, we auties are behind the Glass Wall. For some of us like my nonverbal son, that wall is super-thick and full of occlusions. He can’t communicate effectively or regularly from his inside world, and he can only sometimes make out what’s being told to him from the outside. He does have a brilliant and vivid world going on in there, clearly, but good luck finding out what it is past the wall.

And then there are those of us who have thinner walls, but we still have occlusions. That glass acts as a fun-house-mirror type lens. We tend to take things super-literally, for instance, because we can’t always “see” body language to indicate a joke or sarcasm. We miss critical cues that tell us whether or not someone is a threat. If we tend to underplay threats, one bad experience makes us doubt all future experiences that might look kind of like that one bad time. We have a hard time discerning the factors and variables of interactions because the world is written in fish-language, which will never be our native tongue, no matter how much we study it.

Some parts of the wall become telescopic lenses, and these are our fixations — our “one thing.” This One Thing can become the Most Important Thing. It could be how the towels are folded (one of my big ones) or how the pencils are aligned or putting all the little cars in a row or only eating the vowels out of the Alphabits cereal. It could be texture issues, touch issues, certain types of sounds, control of our bodies… any of these things become so much bigger than what neurotypical people experience. We’re not being “overly sensitive,” we’re seriously experiencing this Thing more than they are.

Just to make things a little more “fun,” the thicknesses of the walls change with many factors. Food sensitivities, hormonal cycles, extended forced social interaction, money problems, relationship issues, and pretty much any kind of stress you can imagine will thicken that wall. False ideas that we fixate on in anxious states start to color the world. Everything is a threat, everything is bad, everything is dangerous. Our fixations are bigger than anything else, so much that we don’t know they’re false in that moment. Any other time, sure, we’re logical people, but when we’re stressed out and melting down? Nah.

Some of us have meltdowns and literally table-flip. Some of us shut down into deep depressions. Some of us run away, some of us lock up behind an impenetrable wall of blank, but almost always, there’s a neurotypical person looking at us in confusion, trying to figure out what the big deal is.

What to Do, What to Do

It would be super if we could start building a world that was equally suitable for fish and birds. Some of the things that birds really need to feel comfortable would make the world a better place in general, and fish definitely seem to benefit.

For instance, because we are so literal minded, we often also have an intense sense of fairness and rightness. If we are taught that the Rule is This, but then people start behaving like That, and no one gets called out about it, this creates enormous anxiety. What’s even worse is when we are taught the Rule is This, and we act according to This to the best of our ability, but then we’re reprimanded for it.

Justice and fairness are big deals.

We like true things, we like things we can trust. We like transparency and for topics to be fully explored and explained. We like knowing all there is on a subject, digging in deep to something we love and finding out everything we can about it, and we like sharing that knowledge with others.

We have needs, just like neurotypical people, but what confounds us a lot is how often neurotypical people don’t seem to pay attention to their own needs. Our perspective makes our needs loud and impossible to ignore, but that doesn’t make them less than yours. Your alarms are quieter, I think.

Maybe if you fish could make room for us birds in the world, we birds could teach you fish how to take better care of yourselves. And given our love for you in general, we’d probably help take care of you, too.

It’s only fair.

Follow this journey on Normfac.

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That moment when your wonderful little boy lays his head, heavy with sorrow that is not his to carry, on your shoulder and breathes out such a sigh that you can hear the shattered pieces of his heart collide with your skin…

“Mommy, I think my brain is broken sometimes.”

Oh what I’d give to make him understand that it’s not he that is broken, but the world that cannot look past the word “autism.” What I’d give to show him how I see him, how his family and friends see him, how God sees him.

Meltdowns are no easy thing. Last night’s lasted almost two hours before he fell, exhausted, into a heap on the couch. Still sapped from that, he was subdued today and when we cuddled at bedtime, reflective. Having finally processed what happened, he came to the conclusion that he was broken… that the tsunami of emotion was the result of some defect inherent within him.Folks, this is what autism can look like.

It’s not just what you see in “Rain Man” or comedy sketches that exaggerate stereotypes. It’s the quiet, isolated deterioration of one’s self-worth as a child recognizes their neurological differences. It’s the internalized disgust masquerading as teen angst. It’s the displaced adult who has gone through life never being truly appreciated for their incredibly unique intellect and creative capacity.

There’s a reason those with autism are statistically more likely to attempt suicide than those without. People on the spectrum have a mortality rate almost two decades less than those without an autism diagnosis. As noted by the Karolinska Institute when they published in the “British Journal of Psychiatry,” the leading cause of premature death in autistic adults isn’t due to things like heart disease or cancer; it’s suicide.

This fact has largely been ignored in the fight for autism awareness and acceptance. As a community, we’ve made such strides in acceptance of children with autism, but those children grow into adults, and there tends to be a drastic shift in accepting autism in children vs. autism in adults.

One day, the beautiful little boy you see below will be an adult, and he will be an adult with autism. I wonder if the society that politely smiles as he stims at 7 will afford him the same compassion when he’s 25. I wonder if the folks who give me a gentle nod of understanding as he’s having a meltdown today will reach out as he experiences over-stimulation after a stressful work day at 32.

mom and son smiling

Given the statistics, I am not filled with confidence. However, autism and suicide do not have to be such heartbreaking bedfellows, and this statistic has inspired me to continue working towards better awareness and acceptance for those with autism.

So with September being Suicide Prevention Month, let’s commit to preventing the senseless, heartbreaking deaths of individuals with autism who are struggling to find acceptance, love and support beyond childhood. Reach out to those in your community, and share what you know in the hopes of breeding just a little more compassion and a little more understanding. Together, we can give my son and others like him a brighter, more accepting tomorrow.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

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Today my son Jackson enters middle school, and I am looking back on nine years of excitement and butterflies, hugs and goodbyes, smiles and waves. Both his, and mine.

I am feeling all of the feelings: excitement, joy and wonder, but also anxiety, worry and doubt. Today, my son will continue down his own journey toward independence. I am beyond proud of him for all he has accomplished. All that he has disproved and all the barriers he has crashed along the way.

It has been a bumpy road, with twists, turns and unforeseen obstacles, but he has emerged out of elementary school a smart, strong, funny boy with the world at his fingertips.

Jackson started preschool at 2 1/2 years old. At the time, we knew he was precocious and curious. We knew he had a great sense of humor. We knew he was a little hard to wrangle, but we didn’t really worry. When he started preschool, the school had a speech therapist do quick 10-minute evaluations on the children. She detected something. I called her and she said she wanted to see him ASAP. I was put off by her demeanor.

We called Early Intervention. They came out and evaluated him. They recommended speech and occupational therapy several times a week. My mind spun. My heart broke. But there was no time for that. It seemed like every moment without action being taken was time lost.

We brought in a private speech therapist to work with Jack at home. She mentioned the phrase “PDD” and told me to look it up. She left. I did.

PDD – Pervasive Development Disorder. Autism.

I was shocked initially, but every day since then, I have not wallowed or sunk. I have forged ahead getting my boy what he needed.

He went to a new preschool that was better equipped to teach him. It was a school that happened to be a good fit. It was 20 minutes away, where the kids knew each other. He did not have the luxury to go to school with his neighbors in his community.

We tried attending the district’s special needs preschool. It was not a good fit. Jackson was happier in his other school. We stuck with that for the next two years.

He went to speech and OT twice a week for two and a half years. His therapists became my comrades.

He started kindergarten in public elementary school. He, and I, barely knew anyone. He was fine. I worried. I had no idea what lay ahead.

I’ve learned more in the past six years that Jackson has been in public school than I think I have in most of my life. I’ve learned what it’s like to have to fight. To not be able to trust the people whose job it is supposed to be to help. I had no idea then that the system would seem deliberately made hard to navigate. That I would have to rely on friends who had experienced it with their own children to tell me how to travel down this road. That there are things no one tells you ahead of time. That there are things available, if you know where to look, who to ask and how to get them.

I’ve learned what it means to advocate for someone. To fight, and put yourself on the line for another person.

I’ve learned that I had more to talk about with my son’s teachers than I did with some of my friends. I’ve learned that teachers have the capability to do great things. That they can be great allies and advocates for their students. Some truly are heroes.

I’ve learned sometimes it’s better to refrain than speak when it comes to conversations about parenting. That worse than feeling excluded, is to feel pitied. Friends mean well but don’t always know what to say. And that’s OK. And some just don’t, can’t understand where we are coming from. And that is OK, too. They have their journey, and I have mine.

I’ve learned that empathy was a lost art and not something every child understands. Some children think inclusion means to tolerate. It does not. Some parents think that is enough as well. It is not. I’ve learned that we still have a ways to go in that department, but there is still time, and there is hope. And there is mostly kindness.

I’ve learned that my son liked to be with other children, and as long as they were in close proximity, he seemed happy.

I’ve learned that there is kindness out there, but you have to know where to look for it.

I’ve learned that my son is a beacon. He is hope, and he is kindness and he is love.

I’ve learned when your children are riddled with anxiety, and you are too, you must practice what you preach. You must also be mindful, count to 10, breathe, and take a moment.

I’ve wished I were a speech therapist, an occupational therapist, a psychologist and a social worker some days. I’ve wished I knew more to help my son.

I’ve learned the phrase, “Different, not less” and had to remind myself of it time and time again.

I’ve learned I am human but still hold myself to a high set of expectations. I still like to be in control, and I’ll never be content with myself. I wish I could change this. I do not want my children to feel this same pressure I put on myself every day, so I need to find the balance between pushing and challenging myself, and knowing it’s OK to make mistakes. That we learn from mistakes. And to not be ashamed of those mistakes.

I’ve learned that to move forward in this world, we can’t worry about what others think. Although we must accept and respect others’ opinions, we do not have to accept them as our own. But, to move forward means to make progress, and we must allow ourselves to grow, excel, strive and not become complacent.

I’ve learned that no matter how hard I advocate for my child, he will be his own best advocate. By putting himself out in the world and experiencing it. By allowing others to be influenced by him, and for him to allow them influence him, too (when appropriate, of course).

I’ve learned I am not alone, even though it feels like I am sometimes (OK, a lot of the time). I’ve learned that help is a phone call away, usually involving a bottle of wine and maybe some sushi.

I’ve learned to find perfection in imperfect moments.

I’ve learned that life doesn’t turn out like we think it will, and that it is way easier just to go with it rather than fight it, even though that is often hard to do.

I’ve learned to love. Unconditionally. To throw away expectations and rewrite your story.

So, today, as I pile in the car the boy and the girl who’ve brought me all of this knowledge, I reflect back on these nine years of first days. I load up the backpacks and lunch boxes and I send my boy off to the next phase of his journey. His life may be more difficult, but I believe will learn freedom and independence, and to advocate for himself. I will be forced through the procedures and rules that exist to take a step back and let him figure it out for himself. I hope he will be OK. I hope he will be happy. I hope he will understand why he has to do it on his own, learn for himself now. I hope he knows that although I may not be able to help him all the time, I am still here for him, and I always will be.

His future’s so bright, he’s gotta wear shades.

Follow this journey on My Special Boy.

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That rule-following little girl, she really wanted to be good.

She wanted to be able to eat all the food on her plate, even though the textures made her gag. She wanted not to shudder and press her ears to each shoulder in turn, every time you scraped your plate and it made that sound that sets off her reflex hallucinations and makes everything taste of bile.

She wasn’t trying to be difficult when she was given the patterned-metal knife and fork that made her cringe and cower. She wasn’t trying to put off eating. She tried to be good when she wasn’t allowed to change them, her knuckles white from pressing her fingers as hard as she could into the pattern, so that she couldn’t feel it anymore. Anything better than that overload of sensory information, like nails on chalkboard.

She learned to offer to set the table so that she could have the smooth ones. She learned that was being good. But sometimes teasing led to swapping the bad ones for the smooth ones. They didn’t know. They didn’t know it was real pain. There was no one to appeal to.

She didn’t want to disappoint you. She didn’t want to fall apart because we were running late and she couldn’t make that make sense.

She didn’t want to have to refuse to hug that person, but it hurt and she didn’t want that either.

She didn’t want to melt down so completely that she had no control at all. She didn’t like it either. It scared her and always got her in trouble.

She didn’t want to be wriggling because the seams in her socks were like iron bars pressing into her toes.

She didn’t want to panic when she lost her stim toy. She didn’t want to need it. She knew it was babyish and shameful.

She didn’t want you thinking she was prickly and sullen all the time. She wasn’t trying to be those things, she just couldn’t project her feelings right.

When you told everyone she was lazy and didn’t revise for her exams, she couldn’t explain why she found revision so hard. She didn’t know what executive function was.

When her back hurt, that was because she couldn’t keep on top of which books she’d need on which day, so she took everything always. Added to her hypermobility, it all hurt. She wasn’t after attention. She wanted to stop hurting.

When she freaked out, but should have grown out of it by then, that was her brain being unable to process the constant sensory and social bombardment.

When she overreacted to new things, that was her natural reaction. That will always be her reaction, but she’s found ways of dealing with it. Of hiding it and preparing for it.

She really wanted to be good. She really did. She knows she’s not who you would have chosen. She couldn’t be that person.

She didn’t understand why other people found being good so easy. They must all have the same problems as her. She was just naughtier, blunter, louder, grumpier, worse in so very many ways. She must be lazy and unlikeable, she must be, because all the evidence was there.

Almost all of it.

I watch that girl from a distance. There’s no one to blame. It’s not anyone’s fault that she is in pain and cannot see who she is. It’s not the fault of those around her that they don’t question for a moment that perhaps she functions differently to them. They don’t know what to look for.

To a degree we all assume everyone else thinks like us; the difference is that most people are right.

Being understood, in body language and motive, is vital to understanding who you are and how you fit into the world.

I wish I could tell that little girl that it’s all real, that the pain and exhaustion she feels, other people aren’t struggling with, that she’s not alone.

But that girl is long gone. She’s already been through stage after stage of getting it wrong. And worse, when she learns how to simulate doing it right (as imperfect as that will be) she will go on exhausting herself and berating herself for years to come.

The story doesn’t have a happy ending, because the story hasn’t ended. But now there is happiness. Lots of it, intermingled with regrets and if-onlys, but it’s there and I intend to keep it.

There is great value in knowing who you are. But there is a stigma to autism which makes people reluctant to apply that label, reluctant to give that value and understanding. All because some people don’t understand what it means.

Awareness is the first step. Acceptance is the second. The third is normalizing. Now there’s an ambiguous word, normalizing.

By that I mean we get to a stage where being neurodiverse is not a notable thing. It’s not interesting or fascinating, because everyone knows what it is and has a neurodiverse friend. Where we are all “out and proud” at work and at home. Where adjustments are routine. Where those who have sensory issues, but no diagnosis, are also able to access more comfortable environments.

No us and them, just us. Everyone. Now wouldn’t that be a happy ending?

Follow this journey on Autism and Expectations.

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