My son was diagnosed with autism a few months ago, and it’s been my favorite topic of conversation ever since — sometimes I feel like it’s the only thing I talk about anymore.

I started asking myself why sharing information about this personal thing has become so important to me. It’s not like autism has been a life-long cause of mine; I only vaguely knew what it was until a few months ago, and didn’t know anyone who’d been affected by it.

Is it because I want to share my son’s autism publicly? Not really. He’s got some classic signs of it, but honestly, a small part of me hopes the diagnosis was wrong and in time we’ll see he’s just a slightly quirky kid with a speech delay.

Like every parent, I watched and waited for my kids to hit the milestones, looking for any sign of delays or abnormal development. When my son’s speech seemed delayed, and we noticed him flapping his hands now and again, my first thought was, God, please don’t let it be autism. I’m not proud of that, but it’s true.

You hear about it so much in the news lately, so it was the first thing to pop into my head. Autism scared me. Not because I had images of grown men talking about boxer shorts from K-Mart, like in the movie “Rain Man“; I knew autism was more than that. What scared me was how unknown it was to me at the time. You can’t see it. It affects everyone differently. There’s no cure or medicine for it. Even doctors trained in the field have trouble diagnosing it. Everyone’s arguing over the causes of it.

I realized today, though, why it’s so important for me to talk about autism and raise awareness. It’s so people I know who may be touched by this disorder, can be less scared of it and more accepting of a diagnosis because they’ll know someone who’s gone through it, too.

Thinking about autism in the abstract is very different than acknowledging it in your own life, and maybe like me, hard to accept the signs. They can know that, while we never wanted to see the signs and would have rather ignored them, we still acknowledged them and quickly sought treatment. Maybe they’ll be more willing to recognize autism if they see it in their kids. They’ll see that I’m happy and so is my son, and that he didn’t suddenly change because of a diagnosis.

Before the diagnosis, I had no role models for living with autism. I’d seen videos, talked to professionals, and read blogs, but that still didn’t make me less scared or accepting of it in our lives. When we hear someone say, “Oh! I know someone who…” they’re saying those words to bring the topic closer to home, to humanize it and make it real.

Since I didn’t know anyone who’d been through it, I hope by talking about it so much, I can bring autism closer to people I know, so they “know someone who” themselves.

This post originally appeared on “My Life, Introverted.”

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Shortly after having my son in June of 2014 and our surprise diagnosis of Down syndrome, I was feeling down and worried. I made the mistake of turning to the Internet for answers, and frankly, there is some scary stuff out there.

I was reading horrible thing after horrible thing about illness and heart conditions and delays. I was terrified. I was doubting my ability to be his mother and doubting my strength.

down syndrome the mighty

He was less than a week old and I couldn’t even fully enjoy the beautiful baby I had before me. I would hold him when I was alone and cry. I would cry for the fears. For the possibilities. For the unknown.

I should clarify, I never once didn’t love my son. There were just so many unknown factors that can partner up with a Down syndrome diagnosis and my post-pregnancy brain, raging with hormones, was having a rough time not dwelling on so many negatives.

One day while I was just holding Zak as he slept — I hardly ever put him down back then, as I was so afraid something horrible would suddenly happen (what I am not sure!) — I was just scrolling through my Facebook feed when I encountered a page called Healing Harper.

Unbeknownst to me, this was actually a local family. Harper, who has Down syndrome, was born a few months prior to Zak and was quite ill. She was in the hospital when I came across the page and I continued to learn more about her and her family.

down syndrome diagnosis the mighty

After seeing her strength and the strength of her family,  it dawned on me… Zak is healthy! We are not in the hospital. We are home. If they (Harper’s family) can handle all of that, why can’t we handle a little extra chromosome?

Not only did the Facebook page completely change my attitude toward the diagnosis, but it gave me the idea to start my own page for Zak as well.

After tossing around many names, I landed on calling it Eyes Wide Open,  because mine were. It was a turning point for me. I quickly became an advocate and Zak’s page now has over 3,000 followers. I refer to him as Extraordinary Zak… because he is!

I actually reached out to Harper’s mom and we have become friends on Facebook. We haven’t had the chance to meet in person yet since Harper is still in and out of the hospital. But some day we will.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

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Sophie Wright, 20, is an illustrator from Leeds, England, who lives with anxiety. She feels anxiety disorders are commonly misunderstood, so she decided to create a comic about it based on her own experience. Take a look:

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Created by Sophie Wright
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Created by Sophie Wright
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Created by Sophie Wright
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Created by Sophie Wright
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Created by Sophie Wright
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Created by Sophie Wright
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Created by Sophie Wright
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Created by Sophie Wright
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Created by Sophie Wright

Wright says on her Tumblr page that she hopes these comics will help people who live with anxiety as well as those who want to learn more about it.

Check out more of Wright’s work on her online portfolio and Tumblr page.

h/t xo Jane

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Aedan was our first child, the perfect, beautiful baby I had dreamed of. He was a “high needs” baby who struggled with oral motor issues and found sleep difficult, but he evolved quickly into an easy-going and inquisitive toddler.

By 2, he knew all of his letters and could count to 20. By 3, he was using words like “hypothesis” and telling everyone that he wanted to be a paleontologist when he grew up. By 4, Aedan was reading to his preschool classmates and correcting his teacher in circle time. He loved playing with adults and children alike, and if you had suggested to me that he would ever end up with an autism spectrum diagnosis, I would have laughed and called you delusional.

Just before his fifth birthday, Aedan began to develop anxiety and what seemed to be OCD-like symptoms. His hands were perpetually “sticky” and he washed them incessantly. He refused to buckle his own seatbelt (it was “sticky,” too), to walk on grass, to enter public restrooms (the sounds of toilets flushing and hand dryers were overwhelming) and to touch paint, shaving cream or Play-Doh. When things were “different” than the way he imagined them to be, he got upset or angry or panicked.

autism spectrum disorder the mighty

Our diagnostic process was frustrating to say the least. We were bounced from pediatrician to counselor to psychologist, none of whom seemed to be able to put their finger on what might be the core issue. One professional even suggested that I was projecting my own anxiety onto Aedan and that there was no real issue at all. Finally, a new pediatrician asked me, “Has anyone ever considered autism spectrum disorder?” I stopped in my tracks. I’m fairly certain my mouth dropped open.

I was certain my child did NOT have autism. Autism was the nonverbal child I used to babysit. Autism was my friend’s daughter who could not enter a store without a meltdown. Autism was the student in my class who gave me a huge hug every morning and sat by my desk to chat but could not bear to have a conversation with his peers. Autism was NOT my bright, bubbly, social little boy… or was it?

The next few months were a whirlwind of evaluations and doctor’s appointments. I began to see the little things I had glanced over for so long… Aedan not looking me in the eye was not just because he was occupied. His sensory anxieties were not just a phase. His resistance to things outside his own schema was not a preference… it was an inability to process.

We received Aedan’s diagnosis last March. By that point, the words “autism spectrum disorder” were not a surprise. I had prepared for them and in a way already accepted their meaning. The diagnosis was almost a relief. It meant we could begin to heal and find help. It meant our insurance would have to pay for occupational and speech therapy. It also meant that my whole world had changed.

A friend of mine whose daughter was diagnosed with ASD years before my son told me, “It doesn’t change who he is.” When I repeated this to our developmental pediatrician, she smiled and said, “Yes… but in some ways it does.” At the time I was confused and almost insulted. In some ways, I think I had viewed the diagnosis as the end of this difficult journey we had been on. I was soon to learn that it was really just the beginning. I left the office with a stack of referrals and recommendations.

In the weeks and months that followed, I learned to be an autism mommy. I learned that while my son is still the same bright, bubbly boy he has always been, sometimes I need to reframe the way I look at him. When I am frustrated that he is not listening, I need to remove distractions instead of demanding more attention. When he breaks down because the day is not going as planned, I need to offer tools and help him find a way to regulate himself. When he is turning somersaults on the couch, I cannot expect him to just sit still.  I need to offer an alternative that can provide similar input. When he does not understand sarcasm or metaphors, I have to find a way to patiently explain.

autism spectrum diagnosis the mighty

In so many little ways throughout the day, I have had to retrain my own brain to remember that Aedan’s interprets things a little differently.

Aedan is now 7 years old. He is passionate, loving, kind and blindingly intelligent. He can tell you anything you’d like to know about just about any dinosaur or animal ever in existence and gets teary-eyed over the idea of trees being chopped down. He loves Elsa and made it his goal to meet every Disney princess at Disneyworld last year. He can follow any Lego instructions in existence and build his own breathtakingly imaginative creations as well.

He is the best big brother I have ever seen and loves his family and friends with an intensity that blows me away. His diagnosis does not define him… but it does shape who and what he is.

Most people who interact with Aedan on a casual basis have no idea that he is not a neuro-typical child. He tends to come off as a little energetic, or slightly immature, or a little “quirky,” but unless you happen to witness a meltdown, Aedan does not fit what the majority of the world views as “autism.” I want to change that.

Autism is not one thing. The autism spectrum has a million different looks, thousands of colors and shades. Aedan is a snowflake. A beautiful, intricate, amazing, AWESOME unique being.

There are millions of snowflakes like and unlike him around the world, each their own combination of strengths and challenges.

I love a snowflake. Do you?

This post originally appeared on “Finders Seekers.”

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The time has come to celebrate Autism Acceptance/Awareness Month in April by adding an “s” to “autism.”

Granted, the word “autisms” does not roll easily off the tongue. (Really, it just puckers at the end.) But I have big hopes for that extra “s.”

First off, it codifies into our language the current science. Namely, that there is no one cause of autism. There are causes. The science is far from set, but many recent studies find many potential causes — be they related to myriad genes, environmental triggers, or both.

Consider this quote from Dr. Stephen W. Scherer of The Hospital for Sick Children in Toronto explaining his team’s findings that even the autistic siblings they studied had different autism-related genes in most cases.

We believe a better term to use is ‘the autisms,’ or ‘the autism spectrum disorders’ (that is, plural),” he told Reuters Health for a January 28 article. “There are many different forms of autism.”

More importantly, that mighty “s” reflects the amazing diversity among people with autism. A popular slogan in autism communities is, “If you’ve met one person with autism, you’ve met one person with autism.”

The popular thinking is that people with autism fall somewhere on a linear continuum from “high-functioning” autistics or people with Asperger’s syndrome, who have pretty good speaking skills, high intelligence and poor social skills, to those with “low-functioning” autism, who are non-verbal, unable to relate to others and have lower intelligence.

But given the augmentative communication devices that enable them to express their high IQs and connect to others, people with autism are proving that linear thinking wrong. Autisms are not expressed in a line, but in constellations.

“Autisms are not expressed in a line, but in constellations. Here’s one of the stars.”

Maybe, if adding an “s” to autism gets us to accept a diversity of causes and expressions of autisms, we can move beyond the notion that one therapy or educational support can help all kinds of people with autism. Among the rifts in our communities are the conflicts between proponents of various types of therapies, each claiming that their way is THE way to help.

So, if we accept the heterogeneity of autisms, perhaps we can accept that each person with autism needs his or her own mix of services and supports, and we can ditch “one size fits all” approaches.

You may have noticed that I’ve pluralized “community” as well to describe people with autism, families, scientists, educators, caregivers, therapists and the like because we are not one community. In many ways, we are at war with ourselves. And we are waging more than one battle.

Some battles rage over causes (genes versus vaccines, the most inflamed of late), others over therapies, more still about diagnosis numbers (epidemic versus reclassification versus ever-changing diagnostic criteria).

One unifier in all these battles is anger — anger I believe to be born of the uncertainties of autisms. We don’t know the specific causes. We’re still at a trial and error phase in our approach to the therapies, medications and teaching methods that really help people with autisms. And gaining access and funding for the things that do help means maneuvering through the murk of insurance and government bureaucracies, a process that leaves even the most level-headed person infuriated and ready to rage.

Which brings me to my last and most important hope for adding an “s” to autism this April. I wish that if we could accept the notion of autisms, we could learn to respectfully disagree with each other and stop trying to prove each other wrong with the vitriol and zealotry I so often read in comments sections in blogs and articles online.

You may have also noted that I called April Acceptance/Awareness Month, because some call it “Autism Awareness Month,” while others call it “Autism Acceptance Month.” Some are championing the idea of “Autism Respect Month,” which I like best of all because it champions the idea of treating people with autism with respect and dignity.

Of course, I’d prefer “Autisms Respect Month.” We need that extra “s” to remind ourselves that we need to respect the diversity among us and treat each other with dignity if we are to expect the same from the world at large.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

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At heart, I’m a glass-is-half-full type of girl, although admittedly, I’ve had phases when the glass was half empty – and sometimes even bone dry.

Still, I think my propensity to be positive is what has kept me mostly sane on this autism journey. I try to keep my essays about Barrett positive, because I loathe the thought of anyone feeling sorry for us. But sometimes, sometimes I can’t conjure up my inner Pollyanna.

I’ve been thinking about my Bear-Bear a lot lately. We recently had his annual IEP meeting, and it was good. As I mentioned last week, he’s also miraculously become a member of his school’s track team. I’m so freaking proud of this kid, so much so that I occasionally feel guilty about it. The accomplishments of my other three children rarely garner the crazy enthusiasm that Barrett’s do.

This past Saturday was Barrett’s autism anniversary. 12 years ago we received the diagnosis. 12 years – it’s unreal.  I can no longer claim it’s all just a dream. The diagnosis wasn’t a surprise, but that didn’t make it any less devastating, life-altering, or dream-crushing.

I consider the four years after the diagnosis as the dark ages. Keeping a positive outlook was difficult. With the exception of my daughter’s birth, I walked through my life with a very heavy heart. I was wounded and recovery didn’t feel likely. But recover I did. I’m not the same person I was pre-diagnosis, but I no longer consider myself broken.

autism diagnosis the mighty

I have new dreams for my son, ones that are more aligned to who he’s come to be. To coin a popular phrase, I’m hopefully optimistic about his future, because he constantly surprises me. 12 years ago, I believed that with intensive therapies, Barrett would “recover.” I didn’t worry about the future too much. I focused on the present.

By the time my son got to kindergarten, reality began to dawn for me. I accepted that he would have a life very different from the one I’d originally imagined. I grieved accordingly, and reconciled myself to our fate. That doesn’t mean I’ve given up on my son – far from it. I still have high expectations for him, but I made the choice not to dwell on what could have been.

Six years ago I never would have thought my son would play or participate in any sport that wasn’t supported by an organization like the Miracle League or the Special Olympics. And that was okay. I’m a proud and hyper cheerleader at the Special Olympics each year. So I’m thrilled (and honestly, scared to death) that I’m going to be able to cheer for Barrett when he runs his first track meet, on a team that is not specifically for special kids.

Why am I rambling on? Because my positivity failed me today. I don’t know if it’s because of all the autism awareness thinking I’ve been doing, or the looking back that I’ve indulged in because of the anniversary. My stumble down the rabbit hole surprised me. Lately, I’ve been thrilled about my Bear-Bear, but there it was: a melancholy-filled moment of weakness. A feeling of regret so strong, that it really did hurt my heart.

This morning, as I watched Barrett walk up our driveway to his bus, I experienced a pang of grief, almost like a foreboding, which is something I haven’t felt in a long time about Barrett. He was dressed in a “GQ”-like manner (because of course I picked out his clothes), and sporting a new haircut. He had his backpack on, and over his shoulder he carried a duffle bag filled with the running gear he would need for track practice after school.

Bear usually gallops to the bus, because he loves going to school. But this morning, he sort of sauntered. He was grasping the shoulder strap of his track bag, so it wouldn’t slip off his shoulder. A wave of nostalgia slowly washed over me and started to pull me back. In that moment, he appeared so cool and confident, and I had a flash of what might have been. Of who he may have been, if not for autism.

I hate self-pity. God, it’s a useless emotion and an obstacle to living a happy life. But man, sometimes, I just can’t avoid it.  But that doesn’t in any way alter the love, gratitude and pride I have for my son today. No way.

A longer version of this post originally appeared on “The Latchkey Mom.”

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