noah playing with his grandma's hair

When a Man at the Convenience Store Told Me Not to Say My Grandson Is Autistic

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Today was one of the rare occasions I got to bring my grandson Noah to therapy. His mom is always the one to do it. I usually stay at home with him unless we go to the grocery store or some other little errand. He will sit in a basket and look at all the lights and colors just like all little kids his age. He loves the grocery store — and Lowes. He really likes Lowes. I don’t know why that’s his favorite, but he loves it. Maybe it’s the high ceilings or the tall shelves or maybe even the smell. It smells like outside, and he loves outside. Whatever the reason, he’s very quiet there. His body stays calm and his eyes are wide and bright. I could stay there all day and not hear a word from him. 

Because he’s so quiet and because he’s still so young, nobody really realizes or sees his differences yet. If they ask him his name, I answer. It usually goes something like this:

Random person: “Hey little man. What’s your name?”

Me: “His name is Noah.”

Random Person, still looking at Noah: “How old are you Noah?”

Me: “He’s almost 2!”

Then, they turn their attention back to me, assuming he’s just shy. This has worked pretty well so far. There has never been any need to explain to said random person that Noah is on the autism spectrum.

But today was different. And the response kind of surprised me. 

We were on our way to therapy when I had to make a stop at a small convenience store. I took Noah in with me, got what I needed, and went up to the register. 

He was hanging on my hip with his little hand playing with the hair on the back of my neck, twirling it between his little chubby fingers. I love it when he does that.

noah playing with his grandma's hair

While I checked out, a nice, older man behind the counter looked at Noah and said, “Hey little dude… what’s your name?”

Noah, of course, completely ignored him and looked over my shoulder to check out this store he had never been in before. I gave the man the obligatory response: “His name is Noah.”

This man obviously wanted to interact with Noah so he touched him on the leg and said, “Hi Noah.” 

Noah couldn’t have cared less. The man wouldn’t give up though. He kept tapping his little leg and saying his name, so I tried to get Noah to acknowledge him by saying, “Tell him hi, Noah.”

The man behind the counter looked at me curiously. It looked like he wanted answers. “Why won’t he talk?” he seemed to say. Of course, he didn’t actually say it, but his eyes were asking, “Why won’t he look at me?” Normally, I would have told myself it was all in my head and just politely left with a little chuckle as if to say, “Kids… you know how they are,” but this time, I stopped and thought about it. Maybe I could tell him.

I’d been thinking about the fact that the time would come, one day, to have some sort of explanation for his behavior. That time could be now. Not that this guy deserved an explanation, but he was nice enough. Plus, the store was empty except for me and him. 

I could consider this a practice run. 

So without really thinking about what to say or what words to use, I said, “He’s autistic. He doesn’t talk yet, but he’s getting there.” *Big happy grin.* 

The response this sentence received was a little unexpected.

His eyes softened, his eyebrows furrowed, his gaze dropped and he looked right at me and said, “Oh, don’t say that. My son didn’t talk till he was 3 years old. Noah is just taking his time. You’ll see.. ” with another little pat on Noah’s ankle. 

At this point, I could have politely left this little store and the nice gentleman inside. I’m sure he meant no harm. He thought he was helping. I could have just said “Oh, you’re right. I’m sure he’ll be just fine.” But I didn’t. Something rose up in me that was so unexpected, it surprised me. It wasn’t anger. It wasn’t aggravation. It was a sudden awareness that he didn’t know what autism was. He thought I was telling him my grandson was somehow broken. That he needed to be fixed. Like I thought he was subpar and I was calling him a name. Autistic. He didn’t understand. 

I decided to “inform” this man about autism. I made it my duty, right then and there in that tiny little convenience store. He needed to know the truth.

I told him it was more than just his speech — it was his eye contact and how he gets overwhelmed easily and how he doesn’t really acknowledge people he doesn’t know. I was spewing, in a very polite way, facts about autism that I had read about for the past year. 

1 in 68 children…

It’s hard for him to make conversation…

Social issues…

He’s really smart and knows his ABC’s…

Einstein was believed to be autistic…

By the end of my little lesson, there were a couple of customers behind me and a look of confusion on this nice man’s face. He just smiled at me and said, “Early steps came to my house once a week for a while, and now my son is fine. Maybe you could try that.”

Well… that was a failure. 

He didn’t get it at all! 

I left there feeling a little defeated, like I hadn’t done my job. I was supposed to be an advocate for Noah. I’m supposed to inform people about autism, right? 

Maybe not like that though. 

The thing is, I want people to get to know Noah. Not “the kid with autism.” It would be nice if everyone understood why he does the things he does, but I want them to know him beyond that too. 

I want them to know how he loves to snuggle with his G-Paw at night in his big chair. 

I want them to know taking him outside gets the biggest laughs from him. 

I want them to know how bubbles make him squeal with delight and how when he’s tired he runs around the living room in an endless loop, screaming with joy, just before he passes out from exhaustion. 

He’s such a happy little boy. 

I want the world to know him

How do I do that?

I don’t know. 

Not yet. 

But I’m working on it. 

In the meantime, I should probably stay away from that convenience store. 

A version of this post first appeared on G-Maw and Noah.

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Why I'm Coming Out of the Asperger's Closet

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My brother chose the night of my high school graduation to come out to our father, who had raised us after the divorce. I was the younger child, and the black sheep to my brother’s shining sun; the day had finally been about me. After the speeches (I’d given one), and the interminable procession, we’d been allowed to go out for Mexican, which counted as exotic fare in our small town as late as the summer of ’84, something my father usually wouldn’t tolerate — the food along with the people. We’d come home and were having one of our long “family talks” around the dining room table, the kind where my father ranted for hours, full of black Irish emotion and passionate philosophy, weaving the story of his life with ours, or his version of it.

We can tell each other anything, he said. We share our truths. I wasn’t sharing mine, not any of them. I was sitting quietly listening, enmeshed in the family dynamic that was built more on myth than fact. Into this fiction my brother intruded his truth, that he was gay, that he had always been gay, that he had been experimenting while away that year at college. He was ready to own it. I had known since we hit puberty, and I was glad, relieved, that he had decided to come out. Coming out is never easy. But his timing was terrible. My night of celebration turned into a trauma.

My father’s agony was real. One of his two adult best friends, my Uncle Dick, was a gay man who had been murdered in a hate crime years before — pulled from his car after his windshield had been hit with a brick and assaulted until he fell into a coma; he later died of his injuries. They had never spoken of Uncle Dick’s same-sex attraction, and, my father said, that had made their friendship possible. With this unwelcome truth out now between my father and his son, something unspeakable had been said. Something that wasn’t shared even between men like brothers, certainly not between father and son. He believed it doomed his son to death. It put an insurmountable barrier between them. On every level, it literally and without exaggeration terrified him.

Therefore, on the night of my high school graduation, my father somehow found the God he had rejected so that he could punish my brother with Him. In the years that came after, they continued to struggle. My brother argued that my father should accept him completely, and my father argued that he never would. He could love my brother, but not that part of him. He knew my brother, but could never know all of him. At their closest moment during those after years, my father even helped to move my brother and his lover into their new place out of state. But the uneasy truce wasn’t bound to last. During that move, they got into a terrible fight over something incidental, like who was unpacking slower or driving too fast to follow. My father raced home, afraid my brother was going to use the spare key to our childhood home to get into the house and kill him. He changed the locks. They haven’t spoken again, as far as I know.

My coming out has been different and much less traumatic than my brother’s, but it, too, carries a gift and a price. I’m not talking about coming out with an alternative sexuality, but with an alternative identity just the same: disclosing to people that I have autism.

If I were a gay man, people would be more inclined to believe me when I told them so. With Asperger’s, a common reaction is skepticism. The person I’m telling has a relative or a friend who is a classic autistic. I don’t fit that stereotype. I’m verbal and don’t sit on the floor rocking, although if I stand long enough I rotate, or swing my torso, from side to side — something we call stimming. Or, they think of the socially incapable uber-nerd who is male, but here I am, a woman. I seem to have social graces; seeming is believing. I can make eye contact — admittedly, too much. I can make small talk — but not often or for long. Or, they just flat out believe that Aspies are unicorns, invented out of some bizarre inclination toward wish fulfillment, maybe a desire to be special, to find a label for introversion or eccentricity that has a certain clinical ring to it, as if by making such a claim virgins will want to ride us and the forest of twilit dreams will be ours and ours alone to roam.

Sometimes, when people do believe, even then they might express that it’s not a big deal. They’ve got friends who are geeky-nerdy-introverted-techy-socially-awkward-brainy people – maybe even on the shy side. I’m not shy, I tell them. I’m not reticent. I’m what they call “active but odd.” Hang around me long enough, or do away with one of the many interactive scripts I’ve learned to run, and prepare to be — well, it depends on your tastes and maybe my mood. Charmed. Stumped. Annoyed. Amused. Uncomfortable. There’s a range of reaction depending on our chemistry. And it’s not that I enjoy rejection or that I’m impervious to it, but I care much less about it than a socially normative person might. I’ve got rigidities. Obsessions and collections — a hoard in the skull. Sensitivities to stimuli. Imagine a cat with its back up, making that Halloween cat face of alarm. I’ve got one of those inside my nervous system, ready to jerk upright just behind my face at any given moment. It happened today in a meeting, when someone dropped something with a crash. I jump and grimace. Twitching, I have to concentrate to resettle. Literally, the surface of my skin stings all over — arms, legs, chest.

I’m different, and finally someone sees. One day, not long ago, a woman at my new job was teasing me. She’d found me sitting alone in a meeting room, waiting for the thing to begin. I always try to be on time, or a little before, and I do it even in a place where people have a culture of running a little late. They’ve told me they run late there. But it doesn’t matter to me. I have developed an internal standard that punctuality is polite, and therefore I do it regardless of others’ social expectations. So she is teasing me, saying that I must be so lonely, so very lonely, sitting there all alone in my aloneness. Party of one. Loner.

I’m reminded of that scene in the Steve Martin movie “The Lonely Guy” where he sits down in a restaurant to eat alone, feels self-conscious, and the universe fantastically manifests his self-consciousness as a spotlight shining down only on him. But I am not lonely. I don’t care that I am the only one in the room. I have plenty to think about, and I often bring something to read, anyway, just in case I run out of interesting thoughts. I tell her, to stop her from interrupting my thoughts and emoting at me in that too loud, cheerful-neighbor-over-the-fence voice, that I am not at all lonely, and I don’t get lonely, not in the way she means. I don’t generally long for other people. I only ever miss particular other people, and then only sometimes, not always. There was something in the way I asserted this that made her pause. She understood, I could tell, that there was something new in the room with her, something she wasn’t used to encountering in the daily course of her life.

Glimpses like that into another person’s awareness of my difference are validating. Not because I want to be different, but because I am different from most people. I can’t help but be keenly aware of this in my every interaction with strangers or people of limited acquaintance. It doesn’t make me an object of pity to myself. I am not a victim. I am not necessarily Aspie proud, either. It is what I am; it’s not something I’ve achieved. The moment when I move from self-awareness to advocacy is the moment when I sense someone has recognized my difference and rejected it. That someone might not realize he or she is rejecting autism.

I seem like something they recognize, except there’s something else about me that’s too remote, or blunt, or analytical, or serious, or intense. I’m staring at nothing with an unfocused gaze, or my interest in manifesting fake cheer has dwindled, as it does all too easily and often. They recognize a distasteful difference, without getting all the way to giving it a label. And if I gave that kind of person a label to explain it, would it render me more palatable to them? Or would they believe instead that there is some kind of medication to help me conform, or therapy that could fix me?

Not long ago, a woman to whom I’d revealed my autism made that very suggestion, that there must be some kind of therapy. Yes, Aspies sometimes benefit from social skills training or motor skills development or cognitive behavioral therapy for anxiety. Some of us take medication to help with anxiety or depression. But the fact is, whether others believe us, accept us, or reject us, as Lady Gaga would say, baby, we’re born this way. We’re freaks and geeks.

Just as with my brother’s experience in coming out, however, the most important reaction to difference is one’s own. It has taken me years to understand myself as someone with Asperger’s, to accept that Asperger’s is a form of autism, and even to acknowledge that it may put me at a disadvantage in certain contexts, despite my intelligence, ability, and confidence. And lately, I’ve been coming to a different place still.

These days, my autism is seeming less like private information, something I can only confess about my son in order to help him gain support services at school. We have a lot of positive talk in our home about what it means to be Aspie; we’ve come to admire the gifts, laugh at the quirks, and shrug at the deficits. So maybe there is some real value in coming out – not as much to the neurotypical world in the hope that we’ll eventually gain understanding and acceptance, although that’s something to try for, but so we can embrace one another and come to a greater understanding and acceptance of ourselves.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

 

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An Autistic Woman Addresses 9 Common Misconceptions About Autism

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autistic woman with rainbow hair “You don’t seem very autistic to me. My nephew is autistic, and he can’t get the bus. You go to work…”

Autism is a neurological condition. While autistic people often share a number of general characteristics, we are all individuals. Two autistic people can be vastly different from one another. Autism is not a determinant of character or a person’s path through life. It is a different neurology or a different way the brain is “wired” to non-autistic people’s.

 “Are you high-functioning?”

Labels of “high” or “low” functioning autism can be fraught and unhelpful. The functioning label is often seen as a life-long thing. However this can be inaccurate and misleading. An autistic person who works full-time might have a meltdown. So while they are working they might appear “high” functioning, but in the meltdown their level of functioning is different. So the functioning label fails to describe the frequent changes in ability to cope that can occur in an autistic person’s life. The functioning label can also become something of a self-fulfilling prophecy for autistic young people. A person described as “low” functioning may be given negative messaging and low expectations for their life. Their “high” functioning peers often have unrealistically high expectations put on them and their issues may be ignored because they come across as articulate. I try not to use functioning labels around autism at all.

 “Are all autistic people geniuses/computer nerds/like Sheldon Cooper in ‘The Big Bang Theory’?”  

Many autistic people respond well to technology. Some of us are certainly highly proficient at IT-related tasks. However autism covers the full range of cognitive and intellectual abilities, learning styles and interests. Some people on the autism spectrum are excellent at art and writing, some are good at math, and some are great at sports. We are all different.

To assume all of us are highly intelligent is often quite unhelpful. Intellect is not much of a measure of someone’s value, and for people on the autism spectrum who are not highly proficient with intellectual or technical tasks, assuming we are all computer geniuses can be exclusionary and can cause feelings of inadequacy.

“Autistic people don’t have relationships or sex.”

Many autistic people are sexual beings in the same way anyone else is a sexual being. They have relationships, marriages, casual sex and other sorts of sexual interactions. A lot of autistic people identify as being queer or gender diverse. While some autistic people identify as asexual, this is not the reality for everyone. Just because autistic people might not fit the stereotype of who should be having sex and relationships, doesn’t mean we don’t — or shouldn’t =- do it.

“Autistic people shouldn’t have children.”

As with many other disabilities, there is a lot of prejudice around autistic people raising children. On a personal level I will say my mum is diagnosed on the autism spectrum, like me, and she has always been the perfect parent for me. Moving past my own experience, there are a good many autistic parents in the world. An autistic parents may be able to understand their autistic child better on a deep level. Autistic parents have strengths and weaknesses, just like neurotypical parents. Autism certainly doesn’t preclude someone from parenting or from being a good parent.

“Nonverbal autistic people have an intellectual disability.”

While some autistic people who do not use speech/are nonverbal have a co-existing intellectual disability, this is not always the case. Many nonverbal autistic people are highly intelligent. Many use a communication device to express their thoughts. This TEDx Melbourne talk by Tim Chan, who is a nonverbal autistic man, will give you some idea of the issues around non-speech communication and autism.

“Autistic people can’t work.”

It is true that some autistic people cannot work at all. Autistic people are certainly overrepresented in unemployment and welfare statistics. It is likely that a lot of the difficulties surrounding work for autistic people involve a lack of willingness on the part of employers to take them on rather than their lack of skill or willingness to work. A lot of autistic people do work and can be highly skilled employees. We often bring some great skills to the workplace, like honesty, enthusiasm, attention to detail and a work ethic. It would be great to see more employed autistic people. This is an area for ongoing attention.

“Autistic people are rude.”

Autistic people usually interpret the world differently to non-autistic people. We generally want to be liked and we want to be respectful of others. There is often a different culture of social communication between autistic and non-autistic people.

Misinterpretations between the different communication styles can occur and the autistic person may be viewed as rude or uncaring when this is not their intent. If more people understood the differences in communication between autistic and non-autistic people they would understand our apparent “rudeness” is often just a misunderstanding.

“An autistic child is a lost child — a tragedy.”

This is the most hurtful thing you can say to me as an autistic woman. I had a difficult childhood and early adulthood. My parents never said they regretted having me. They loved me, and I became a much happier and more fulfilled person as I grew older. It is not a tragedy to bring a human being into the world. Consider the messaging an autistic child will receive in his or her formative years. I understand parents of newly-diagnosed children can struggle considerably, but they need to be supported with appropriate services and professionals, not told their child is “a tragedy.”

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'But She's Too Social to Be Autistic'

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We have been blessed with two daughters on the autistic spectrum who have pretty opposite struggles when it comes to socialization.

For many years before Sno was diagnosed I was told she was “just shy” or “very serious.” She would often struggle in large groups, noisy crowds would scare her, and she has always taken a while to warm to new people. She’s definitely regarded as an introvert and isn’t really affectionate at all.. but when she is, oh  – it’s heart-meltingly gorgeous. Sno has always struggled with friendships, and I remember her at the age of 4, two years before she was diagnosed, coming home from kindergarten confused about why one of her peers wanted to hold her hand during a song they were singing. When I asked why she didn’t want to, she simply told me, “Well because I don’t know her. And if I don’t know her well, I don’t want her touching me.” Fair enough, kid, I thought back then.

Her sister Wilding on the other hand is a completely different kettle of fish. I was told before she was diagnosed with ASD that she couldn’t be autistic because she was “too social” to have autism. She loves people, and would regularly run up to strangers at the library and ask them to read her stories. She is super affectionate and adores cuddling. She makes friends easily and is loved and cherished by many simply for her embracing, warm character.

Two girls so opposite in personalities and yet they both are autistic. How is this possible? I’ll tell you how.

Being an introvert or an extrovert has nothing to do with being autistic.

It’s kinda like being right- or left-handed. While Sno has struggles with forming friendships (a lot about the how/when/why), Wilding’s struggles to understand appropriate social conduct and behavior and respect others’ personal space. In Sno’s eyes it seems there are so many grey areas of friendships, which she finds overwhelming and confusing with lots of rules to follow she doesn’t quite grasp; but Wilding doesn’t yet understand that you can’t just rock up to a stranger and sit in their lap because you think they look nice.

There are so many tasks in daily life that neurotypical people do without even thinking or putting in much of a concerted effort to achieve. Situations like understanding what to say to someone who may be feeling sad; how to comfort someone who isn’t feeling well, how to make a new friend, what to say to someone when they pay you a compliment. For some people, these tasks require a lot of effort and forethought, and this can be pretty daunting.

Teaching appropriate social conduct can be tricky and requires patience. With Sno it often helps to do “comic strip conversations” to break down social situations and enable her to see what others may be feeling. I have also found these books to be helpful for Sno because they help simplify stuff and give her tools she can add to her toolbox and use when she feels the need.

We work with Wilding on learning about emotions and facial expressions and thinking about how what we say might make someone else feel. “Daniel Tiger’s Neighborhood” is also fantastic because the episodes are essentially broken down social stories explaining different things ranging from eating, getting dressed, going out and feeling sad. Oh, and Daniel Tiger also has a terrific app which explores feelings, too. This book helped Wilding grasp the concept of personal space. And hula hoops provide a great clear visual of what personal space looks like. We use them a lot when we eat outside!

Being “shy” or “outgoing” are not the defining factors of autism. People on the spectrum can be both. If only people were aware of just how wrong these myths surrounding being autistic were.

We see you, girls. Or I do, anyway. And I think you’re pretty incredible.

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The ‘Kit’ We Created to Help Children With Autism Cultivate Friendships

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When it comes to parenting a child on the autism spectrum, I always wished that there was a book with all the answers — a roadmap to help my son grow and thrive. But each child with autism is unique, so there are no “one size fits all” solutions to make sure I am meeting his needs.

I may not know what to do at any given time, but I must trust I have the strength within me to figure it out and, sometimes, fight for his services and support team.

And if the right “thing” doesn’t exist? I must find the courage to create the solutions myself because if I don’t do it, who will? I must step way beyond my comfort zone and take action.

Thankfully, all of us have the opportunity to connect with resourceful moms and dads, siblings and grandparents who have also dove right in.

I have tremendous respect for one such mom: Lisa Smith of “Quirks and Chaos.” She has been cultivating and building friendships for her son, Tate, for years. For many children on the autism spectrum like Tate, developing friendships can be a challenge. Through education, coaching and teamwork, Lisa has created a community of teachers, parents, therapists and peers who eagerly participate to help Tate thrive.

Tate’s peers consider him a valued member of their class and treat him as an equal. It was so successful that People magazine got wind of the “Lunch Buddy Program” and featured Tate and his friends.

Lisa blogged about how she did it. Too important to be buried in the blogosphere, she and I collaborated to create “The Friendship Kit,” a compilation of her blog posts along with the class story, flyers, permission slips and disclosures she used.

Personally, my son is out of school now, but this kit is something I wish I had when he was younger. Both Lisa and I hope it will help other parents by giving them inspiration and a framework to help create their own “building friendships” program for their children.

And when do you talk to your child’s class about starting a buddy program? One of the best ways to introduce autism to your child’s classroom peers is through the Bluebee TeeVee Autism Information Station. It’s a friendly, fun and approachable way to engage children in a discussion about your child. “The Friendship Game” episode is a perfect fit for introducing a buddy program.

Lisa Smith is a parent we can all model ourselves after. She proactively works to build a strong support team and welcoming community for her son. What’s important to note is that Lisa is an introvert at heart, but she’ll do whatever she has to do to keep her children safe and happy.

Let Lisa be a reminder that we can be resourceful! We can come up with creative solutions! We all have the power within to make whatever needs to happen for our children, happen.

• Get the Friendship Kit

• Access Episodes of Bluebee TeeVee and the Parent/Teacher Episode Guides

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Carly Fleischmann, Nonverbal Woman With Autism, Writes Country Song Titled 'Glamour Girl'

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Carly Fleischmann is a “Glamour Girl.”

That’s the name of the talk show host and author’s debut country song. Fleischmann most recently made headlines in April as the first nonverbal person on the autism spectrum to host a talk show. The pilot episode of her show, “Speechless With Carly Fleischmann” was viewed over three million times and featured an interview with Channing Tatum.

After her meteoric success, Fleischmann’s back, this time pursuing an entirely different passion – country music.

“The true secret to life is that we all have challenges,” Fleischmann’s communication device says, reading her lyrics at the start of the “Glamour Girl” music video. “No matter how big or small our challenges really are, they are always mountains to us. But if we don’t strive to reach our potential and release the glamour girl inside of us, we’ll never be able to see the view from the top of the mountain.”

“Everyone in the world has his or her own personal challenges,” Fleischmann wrote in the Facebook post debuting the video. In overcoming her challenges, Fleischmann wrote and helped produce a song, asking her friends Kaitlin Kozell and Lil Jaxe to help with the vocals.

In her Facebook post, Fleischmann describes the challenges she and her friends have faced. Kozell, who provides the main vocals for the song, is an up-and-coming country artist managing self-esteem challenges from being bullied. Rapper Lil Jaxe has a speech impediment.

“It doesn’t matter what your challenges are as long as you’re ready to try to overcome them,” Fleischmann wrote. And that’s what “Glamour Girl” represents.

You can watch the music video below.

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