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What I’ve Learned in 9 Years of First Days With My Son on the Autism Spectrum

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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.

Image via Thinkstock Images

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She Wanted to Be Good

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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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How My Autism Affects Sex, and How Sex Affects My Autism

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Let me start out by saying that for the longest time I didn’t really understand sex or anything attached to it, like flirting and being hit on. That’s not to say I’m completely unaware of how any of those work or why, or that I find it useless at all. Our country’s culture is steeped in and permeated with sex and sexuality. It’s easier for me to see the overall effects on people. I’m blind to it all when it comes to myself – when it’s blatantly obvious, I get it; when it’s subtle, I’m oblivious.

I was the girl in middle school who, upon everyone hitting puberty, didn’t get why all of my peers were pining over actors, musicians, and boybands, or even our fellow male classmates. I didn’t have that natural reaction. Sure, I liked a couple of boys I went to school with, but the drive, admiration, and lust that came with puberty flew right over me.

In my early 20s and college, that started to catch up, though I still felt very new and fresh to it, much like someone starting at a new school halfway through their education. They know the basic structure but are still trying to make sense of the new bearings and shifts in a similar yet alien environment. I constantly felt like I was behind everyone else my age, especially the women. I also was never one to deeply identify with my femininity. Like many others on the spectrum, I wax and wane with how much I connect with my gender. Sometimes it’s more natural, sometimes not. The same can be said for sexuality and its expression. I find that for many on the spectrum it’s more fluid in multiple ways.

Flirting: Unless I’m the one initiating, it feels awkward to me. Growing up, learning social cues and behavior from various support professionals and therapies never included dating and relationships in any capacity whatsoever. It’s something I learned as I went. If another person initiates flirting, depending on their style, technique, and tactics I either: freeze up and question their motives, think they’re just being nice, or it goes completely over my head and I don’t even recognize it happened. (If I had a dollar for every time I thought someone was simply being nice when in actuality they were trying to flirt with me… well, I’d at least be able to treat myself and a friend or two to dinner.)

Sex: Dating and having an intimate relationship means it’s inevitably going to come up. None of us as humans know what our preferences are in any regards until we explore and experience things. As we start, develop, and maintain relationships we learn those preferences, as well as how the mental, emotional, and physical beliefs and interactions of sex reflect back onto and influence us. We are all creatures who derive satisfaction from and continuously seek out anything that feels good to us. Individuals on the spectrum are not exempt. I crave intimacy because regardless of what I may have, it’s still a natural instinct. Like flirting, if I initiate sex I’m better able to control the sensory reactions that sometimes come up for me.

Participating in flirting and sex calls us to be present in those moments. With autism it means I’m constantly analyzing it. It’s automatic and subconscious. I actually have to tell myself somewhere in my brain to stop, loosen up the rigidity, and just feel and go with the flow.

Regardless of these variances, taking part in intimate and sexual experiences allows me to learn more about my comforts, identities, boundaries, and abilities. Depending where I am at on any given day in my mental, emotional, physical, energetic, and sensory capacities, experiences can be more of a challenge (whether knowing it could be beforehand or finding out as we go), yet there are just as many times, if not more, where I am able to gently push the autism comfort zone every time. By coaxing the boundary to lightly stretch, I not only allow myself to connect with, know, and understand myself better, but it creates an opportunity to do the same with my partner. Eventually this evolves to practicing deeper intimacy with family and friends, and creating a depth of relationship with others overall that previously has always been difficult for me to maintain or handle.

My autism affects sex in a multitude of ways, but far more, sex transforms my autism. As someone who continuously wants to learn exactly what they’re capable of in various ways, I fully and gratefully embrace the learning experiences it gives. Reaching out, feeling, and experiencing can be hard, but the multitude of treasures has been and continues to be far worth it.

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When People Didn’t Believe My Autism Diagnosis at the Age of 63

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My autism diagnosis is still fairly new. This doesn’t mean that I’m new at being autistic. It just means I now have a label and a framework for understanding why I move through life the way I do.

There have been lots of ups and downs over the past six months since my final meeting with the psychologist. The best moments involved learning why I’m different from others in ways that, in the past, left me feeling hurt and alone. Just knowing it’s not my fault has been a source of tremendous healing for me. I know that many people fear finding out they might be autistic. I’m only sorry it took me so long.

Some things have not gone so well. Telling friends and family is at the top of this list. Not the telling part. This has been pretty easy for me, perhaps too easy at times. What’s been surprisingly difficult has been convincing people it’s true when I’ve told them I’m autistic.

That’s not true. You can’t be.

Oh, my neighbor has an autistic son and you’re not at all like him.

Who told you that? Did you self-diagnose?

I never would have guessed.

I get this. Most people don’t understand autism affects people in a broad range of ways or what passes for social awkwardness or shyness might be something else entirely. Mention autism to them and they think of a child or adult dealing with very significant challenges. They don’t expect to see it in the people around them, and as a result, they don’t see it at all.

It’s no surprise they also don’t understand how hard we work to fit in, to find and keep jobs, to make friends, to navigate all the little tasks that make up a “normal” day, to not feel depressed or rejected when these things are difficult, exhausting or simply impossible.

I learned early on what it means to be different. Kids don’t invite you to play. Bullies single you out. Your one friend at lunchtime is the book you brought from home. Parents and adults withhold approval and, at times, love when you don’t measure up to their expectations or embarrass them.  

I did my best to avoid others physically and emotionally when I was growing up. Stayed home when possible. Ran away when it hurt. Was silent and invisible.

By the time I got to college, I was quiet, solitary and depressed, constantly at risk of a meltdown. Everything was a challenge for me. I just couldn’t think or be like the people around me.

My work life after college was more of the same. Very high-performance skills, very poor interpersonal ones. Every day felt like I was teetering on the edge of a cliff as I fought to mask over my differences with long work hours and determined over achievement.

I never felt I could show my real self to anyone. Instead, I faked normal every waking hour with everyone I knew. It became so habitual that the real me quite literally ended up hiding in plain sight. Small wonder it was so hard for others to believe I’m autistic. They had no idea who I really was.

So here I am, 63 years old, trying to introduce myself to friends and family for the first time. I’ve been forward about sharing my diagnosis when I thought it was the key to having a close, honest relationship with someone.

Since my trying to explain anything verbally is a one-way ticket to an endless, disconnected monologue, I’ve written a few follow-up emails to friends who didn’t accept or believe. This actually gave me the chance to focus on how I’m different, on what it means from a practical standpoint and then to put it into words. It may have taken a couple of back and forth emails, but almost everyone has ended up saying thanks for sharing this, I get it now.

Out of all the people I’ve told, only one has made a point of refusing to believe. It’s a bridge he won’t cross and, on a very basic level, feels too much to me like the rejection I experienced as a child. Friendship, like love, should be built on acceptance, not on expectations.

My relationships with other friends and family are works in progress. Yes, they now get it and may be on the lookout for some of the ways in which my being autistic expresses itself. I’m also much more open about being me around them, even when my proverbial kettle is on the boil and I just can’t resist rocking up and down on the balls of my feet. It’s taken me a while, but I finally understand that the only way to truly feel accepted is to know that people are seeing the real me.

C.S. Lewis wrote that the gates of hell are locked on the inside. This was true my whole life before I was diagnosed. It’s not true anymore.

Follow this journey on Lost Words.

Lead photo source: Thinkstock Images

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Chris Bonnello Asks 150 Kids With Autism What They Love Most About Life for New Book

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What do you love most about life? That’s the question Chris Bonnello asked 150 kids on the autism spectrum for his debut book “What We Love Most About Life.”

Bonnello, a former educator who runs the “Autistic Not Weird” community and is on the autism spectrum, compiled the book to help young people with autism feel less alone. “I know from personal experience that autism and Asperger’s can feel extremely isolating,” Bonnello told The Mighty. “It can be a great comfort for young people to learn that they actually aren’t alone in the world – to see the real faces of other children and teenagers who share their life experiences.” The book was designed by Nancy J. Price, whose 15-year-old son also has autism.

Cadence's page of the book.

“What We Love Most About Life” shows the diversity and strength of the autism community, featuring responses from young people all over the spectrum. “Autistic people differ from each other for exactly the same reason that non-autistic people do,” Bonnello said. “We’re individuals, and we get to have our own personalities too. If you want to understand an autistic person, then learning about autism in general is a good start. However, it will never be a valid substitute for learning about the actual person.”

For his book, Bonnello reached out to the “Autistic Not Weird” community and asked parents to ask their children and teens what they love most about life; 150 young people from 20 different countries participated. The responses range from poignant to hilarious, Bonnello said. Of the replies he received, Bonnello said one of his favorites comes from Freddie, an 11-year-old boy. Freddie told Bonnello, “I know I should do the right thing and say family, but I want to be honest and say daydreaming!” “I could have high-fived him for that,” Bonnello said.

A photo showing Asher's section of the book.

In addition to helping kids and teens on the spectrum feel less alone, Bonnello hopes the book will dispel some of the negative stereotypes surrounding autism. “There are lots of automatic negative assumptions about autism. And obviously we don’t want our struggles ignored, but it gets harmful when people define you by your weaknesses rather than your strengths. It leads people to think that autism is 99 percent suffering, which is a damaging stereotype. This book is intended to show people that, regardless of their challenges and difficulties, people on the autism spectrum are brilliantly and beautifully capable of seeing the awesomeness of this world.”

“What We Love Most About Life” is currently raising funds on Kickstarter to pay for printing and other remaining costs. The book will be printed in the U.K. and North America to keep costs low internationally. Those interested in purchasing a copy can do so through the book’s Kickstarter campaign for £10 (about $13 USD).

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When a Woman in a Walmart Parking Lot Came Over to Us During My Son's Meltdown

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What I learned from a stranger one summer’s day in a Walmart parking lot still sticks with me six years later.

I had on occasion witnessed parents with children having meltdowns out in public and thought I’m glad that’s not me. I would try not to look and give them some privacy to help their child. I would move on with my shopping, happy my three children were behaving, or at least not throwing a “tantrum.”

Then I had my fourth child. With all the love and joy he brought me, also came challenges. By the age of 2 he had been diagnosed with sensory processing disorder and autism spectrum disorder. I became the parent of the child having meltdowns.

When my son was 4 years old, I had to take him with me to Walmart one day. I knew I was pushing my luck. We had just come from the dentist, which for any 4-year-old kid can be difficult but for a child on the spectrum, it is a lot of sensory processing to have to deal with. My son had done OK. We had made it through the dentist appointment. Just one more stop at Walmart, then we would be home.

Things did not go as planned. My son started to have a meltdown in the checkout line.  Normally if this happened I would have made a quick exit from the store and gone back another time. But I couldn’t do that today. My husband was picking up my daughter from camp six hours away. She had broken her foot badly, was in a non-weight bearing cast with crutches, and the cast was not waterproof. The one thing my daughter really wanted to do the minute she got home was shower, and it was my job to get the supplies. I needed to get her a chair that could fit in our shower and plastic and tape to cover the cast.

I endured the looks of disapproving people as I slowly inched up in line as my son was on the floor between me and the shopping cart screaming at the top of his lungs. I made it through the checkout and was able to pick up my son and get out the door. The screaming and flailing continued as I tried to walk to my car. His shoe came off at some point, and I left it in the middle of the road. I just had to get him in his car seat.

My son had Herculean strength during this meltdown. His little body was arching and twisting, and as hard as I tried to calm him and just get him buckled in the car seat, I couldn’t do it. He was screaming, and I was struggling, minivan door wide open for all to see.

That’s when I saw this women coming towards me from across the parking lot. I was sure she was going to tell me she had called the police or at least tell me what a horrible mom I was. But instead she simply asked if she could help me. As I felt the tears well up in my eyes I said yes.

It took the two of us five minutes to get my son buckled in the car seat. As we were struggling together she asked so politely if my son was on the spectrum. I replied yes. She told me how she too has two boys on the spectrum. She had been in another checkout line but had witnessed the meltdown in the store. She told me a man behind her in line had said, “What that kid needs is a good spanking.” She told me it made her so mad that she turned and told the man, “ You have no right to judge them. That boy could have issues you don’t know about.”

I was thinking to myself, wow not only is this women helping me, but she is defending me! She continued on to say that she told her husband, who was waiting in their car with her two boys, that she was going to come over and help me because she could just tell my son was on the spectrum and that I was going to need help.

After we had secured my son in his car seat, she helped put my items in the back of my car as I went to retrieve my son’s shoe. She ran back to her car and came back to my car with her name and phone number. She told me to call her if I ever wanted to get together with her sons. I thanked her profusely, and we went our separate ways.

She became “Melissa-Walmart” in my address book. We met a few weeks later at a playground and laughed as I told her I’d still be in the Walmart parking lot if she hadn’t come over to help me. Her kindness that summer day has stayed with me.

I learned that for all the hurtful looks and comments I would get over the years, there were also people out there who understood the challenges we faced. For the times I saw other parents with a child melting down and I just looked the other way, I could do better. I too could ask if they needed help. Empathy and compassion can go a long way for everyone because you just never know what someone is going through till you have walked in their shoes — especially the shoes that end up in the middle of the road.

Image via Thinkstock.

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