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  • Home
  • Introduction to Autism
    • Characteristics
    • Common Myths >
      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
    • What to Avoid
  • Advice for Parents
    • Visual Supports
    • Autism Treatments
    • Explaining Autism to Kids
    • A Mother's Story
    • My Sibling Perspective
    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
    • Late Diagnosis
  • More
    • How to Assess Claims
    • What Causes Autism?
    • Additional Resources
    • Site Info & Feedback >
      • About the Website
      • ASE FAQ
      • Survey
      • Contact Us
      • Make a Submission
  • Our Blog
    • On Self-Advocacy
    • Trouble with Changes
    • Smoothing Transitions
    • Autism Speaks
    • Vaccines
    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring

small Acts of Kindness in the grocery store

7/30/2015

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The other day Caley and I were at the grocery store. She was extremely anxious, though she couldn't figure out why. All I could do, as I always do, was hug her. Tight hugs from loved ones help her regulate herself enough to navigate the world. They're particularly necessary at grocery stores, which are full of people and choices and loud noises.

This is made worse by the fact that those people are generally staring at Caley as I hug her. Seeing two adults hug and hold hands in public apparently is stare worthy. People come up with their own explanations of the reasons we're hugging. From the spitting and glaring, Caley's best guess has been that they think we're a lesbian couple. Which is a really sad indictment of the way couples who are lesbians are treated, by the way.

So we go from staring to glaring and the more people stare, the more anxious Caley gets and the more hugs she needs. The more hugs she needs the more people stare at us. It's a cycle that just gets worse and worse.

And then we go to the sandwich counter. Caley's nervous, but she's determined to order a sandwich before she leaves. I'm very proud of her, because I know how hard she's working, but how determined she is.

The lady behind the counter listens to Caley's order and starts making her sub. She looks at us, as I hug Caley and comfort her.
And then she says to Caley, "It's going to be okay. I don't know what's going on, but I can tell you're upset. But it's going to be okay. When I'm upset I think of my son and it makes me feel better."

Caley replies, "When I'm upset, I hug my sister and I feel better."
The lady said something else sweet that I can't remember, handed us our sub and we went on our way. As we left, Caley made sure to mention the lady's kind actions to the manager, so she got recognition.

I'm telling this story because I know the components - the grocery store difficulties, the staring - are oh so common for people on the spectrum. But this story shows the solution clearly. Kindness and compassion.

The important take away here is this. Small acts of kindness can make a world of difference. Instead of anxiety provoking stares or frightening glares, this woman reached out with compassion instead. And that transformed our whole grocery trip.
Small acts of kindness go a long way.

​-Creigh
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To The Woman Who Pitied Me for Having an Autistic Child: Happiness Comes in Many Forms

12/31/2014

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Picture
Image is of my mom, my sister and me splashing in a creek, undeniably happy. Our mother had waded in under the condition that we under no circumstances get her wet. Given that she was dealing with a seven year old and a four year old at the time, though...well, it was just too tempting. In the photo my sister and I are dancing with glee at having partially pulled our mother into the water. Mom? Well, she can't stop laughing. At the bottom of the photo I've written, "Happiness comes in all shapes and sizes." Because our life was certainly rather unorthodox. And yes, sometimes things were hard. But other times, like this one, they were really, really awesome. I'm not saying all parents of autistic children view their lives as happy ones, but ours certainly has been. Stick with me, the way the picture ties into the story is going to make sense in just a bit.

To the Woman Who Pitied Me for Having an Autistic Child,

First of all, I want to start this by thanking you. I’ll admit, every time I take a child who’s on the spectrum to the movie theater, I’m always a little nervous about how my fellow movie-goers will react. You know, I met a wise mother of an autistic child a couple of years ago who told me that autistic children had just as much of a right to go places in the world as other children did. I admired this mother, and I have sought to practice her words. That said, it’s still not always easy dealing with the judgment of others, and I’ll be honest, I’m always a bit nervous that some theater-goer will complain or take me to task for bringing a child on the spectrum to the theater. 

Coming from that perspective, and given that today’s movie was a bit over (or perhaps under?) stimulating, leading to extra loud stimming, attempts to run out of the row and loudly playing pretend with popcorn (which, by the way, is super cool, but I doubt my fellow theater goers appreciated how awesome what they were hearing was), you can see why I might have been nervous that some tsk’ing person might come up to me afterwards and tell me I should have removed him from the theater.

But no such person came. Instead, you approached me after the movie as the child on the spectrum was telling me excitedly about the movie “Home”. You didn’t say much, simply tapped me lightly on the shoulder as you walked and as you passed me you whispered with tears in your voice, “Bless you.” It was literally only a second long interaction, but every bit of your voice was packed with utter sincerity. I had feared people approaching me with anger, but instead you came to me with compassion. And for that, I very much thank you. I truly wish there were more people like you in the world – people who viewed the world through a paradigm of love, rather than anger.

I’ll be honest – I was a bit speechless at first. There was so much I had to say, but either to keep our conversation hidden from the child in question or because you were busy with (presumably) your own family, by the time I turned around all I got was a glimpse of your face and then you were gone. Driven by the urge to say something, and at least acknowledge your kind intentions, I called at your back, “Thank you?” Yes, there was a question mark. And I suppose the question mark will have to contain everything that I had to leave unsaid at the time.

As you’ve read by now, I truly did mean the thank you. Your intentions were the best, and the world could always use more blessings. Yet, the question mark arrived from what the words and the tone of your voice and even your facial expression strongly and unmistakably conveyed: pity.

I appreciate your blessings, really I do. And I see where you’re coming from, having only witnessed the encounter on the surface. But allow me to explain what was really going on from my perspective.

In my view, I had just had an awesome time with two great kids I love dearly. I’m sure I looked a bit haggard – but that’s because I was fighting off a burgeoning migraine from the bright movie screen and loud speakers, not because of the kids. Sure, the child on the spectrum was a bit all over the place, and, yes, I did have to restrain him from running out of the aisle. But I loved watching the movie with him and his brother. Hearing his infectious belly laugh (I dare you to listen and not smile), watching him play pretend with pieces of popcorn of all things (which, as I said, is really cool – in case you didn’t know, playing pretend is something a lot of kids on the spectrum struggle with, and I will never tire of watching him do it), bouncing him on my legs and giving him bear hugs for sensory stimulation (which I thoroughly enjoyed doing), hearing him talk to the movie (which is something I actually worked hard to get him to do at home, not realizing that would generalize to the movie theater – hearing him ask those ‘wh-’ questions, though, I still have no regrets), it was all fantastic! 

So if your pity was for my migraine – thanks, I really needed it. But if it was for having an autistic child with me at the movies, as I suspect it was…then, no, I actually had a wonderful time. Happiness comes in all shapes and sizes, not to mention neurologies, and I have experienced few moments of happiness stronger than the time I spend with these two amazing children – our movie theater visits included.

Of course, after I thought this through, I realized that your blessings probably went far deeper than that. It was probably not about our movie theater experience at all, but the fact that I appeared to be a mother raising an autistic child. Here, I’m not in as good a position to speak from. You see, I’m not actually his mother. I was just caring for him and his brother for the day, while his papa rests and his mother is out of town. (The papa for whom the little one wanted to go to the grocery store and buy soup and Gatorade and flowers for to make him feel all better - yes, autistic children are more than capable of loving and caring for their parents, as this one utterly and completely does, and his parents more than return the sentiment.)

Still wanting to address this component of your good intentions, I turned to my own mother, who also raised an autistic child – my sister, Caley. And she backed my own instincts: at least in her view, there’s nothing to pity. Sure, things can be really, ridiculously hard at times. But they can also be really, ridiculously awesome, too. There seems to be this assumption that life with an autistic child cannot be a happy one - that it's a life worth pitying. But life with an autistic child is, well, life. There are ups and downs, like any other life, though they certainly seem to be a bit exaggerated at both ends. Though there are certainly more societal barriers to overcome, there is so much joy to be found in life that at least in my family’s experience the scale more than balances out. Your blessings are always appreciated. But your reasoning behind this particular one – well, that might have been based on inaccurate data. 

I still greatly appreciate your kind words, and do not wish to discourage you from greeting others with the same compassion that you showed me today. I know what most people’s impressions of what life is like having an autistic child are, and I know they’re pretty uniformly terrible. All I wanted to show you with this letter was, well, that things may not be what you might think.

Thank you again for your compassion.

Sincerely,

Creigh, AKA, the woman at the movie theater

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On Therapy, Friendships, Arcade Tickets, and Acts of Kindness

6/11/2014

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When Caley was in elementary school, like most children on the spectrum, she received physical and occupational therapy. (That is, until our insurance refused to cover the sessions. Frustration with insurance companies was something I learned very young...) As you'd expect, the therapy was great for her...but it was also great for me.

You see, as her sister, I was dragged along to all of Caley's therapy appointments. You'd think I would have hated it, but it was actually hands down one of the best and most enriching experiences of my childhood. You see, on top of being fun, it normalized disability. In the waiting room, I hung out with autistic kids, kids in wheelchairs and on crutches, and kids with countless other disabilities. I didn't think 'this is a disabled child who I'm playing with'. I just thought, great, a playmate! Disability wasn't weird. It just...was. 

While we were at therapy, Caley and I became good friends with a whole host of other children who were about our age and received therapy there for various disabilities - K*, V, C (V's twin sister), and A (another autistic girl Caley's age). K and I were best friends, since we were the same age and clicked, and Caley was best friends with V, who was the very definition of ebullience and joy. Therapy was a sanctuary of acceptance, and we had more friends there than either of us did in our classes at school.

One day, when I was in fifth grade and Caley was in second, one or both of our parents** came to school and checked us out early. Any kid would love that news, and to top it off, they took us out to eat at our favorite restaurant. It was too good to be true, and we both knew something was up. At the end of our meal*** they told us they had some bad news. V had suffered a particularly bad seizure and had died.

We were shocked and upset, to say the least. It was one of the first deaths either of us had experienced, and moreover, it was of someone our age who we'd been friends with and was generally an awesome person. Even remembering this now, so many years later, my heart still fills with sadness at her loss, and Caley was hit even harder by the loss of one of her best friends. 

After some time had elapsed since V's funeral, which we all attended, the therapists took me, Caley, and C out to Chuck E Cheese (an arcade). I only somewhat realized it at the time, but looking back I think it was their way of expressing support for V and C's parents and helping us kids feel better.**** Not to mention, they, too, were grieving. 

C and Caley and I had a blast playing, but one moment from that day sticks out at me. We were playing Skeeball and C, as expected of a child our age, wasn't doing so well. Suddenly, tickets started POURING out of what appeared to be her machine. She was overjoyed! It made me happy to see her so happy, knowing her recent loss. 

Suddenly an adult woman snatched the tickets away from C, with a possessive glare. The slots for the tickets to come out were located mere inches from each other, and understandably, C had gotten confused. I don't remember C's reaction to this (it was definitely at least disappointment), but I do remember mine. Even after the woman had reclaimed her tickets (and was still shooting C dirty looks), I couldn't help thinking to myself, why couldn't the woman just give C the tickets? It's a kid's arcade, not one for adults, the confusion was understandable, and that little thing had made C SO happy amidst what I knew to be a hard time for her. Was it really so much to ask? After all these years, those thoughts have stuck with me.

I give you all this back story to explain my reaction to something that happened present day. Today, I took the autistic child I care for and his big brother to a local arcade, very similar to Chuck E Cheese's. As I was desperately trying to watch both children in a sea of a serious recipe for sensory overload*****, which was definitely impacting the child on the spectrum, a man approached me. He had some tickets - would the child I care for want them?

Think what you like, but I feel like the universe just redeemed itself.

-Creigh
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On Hugging and Behaviorism

6/4/2014

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Sometimes people can take behaviorism a bit too far. When I told someone* this past week that after time outs the child and I talk about what happened, say sorry, and hug, she had one question for me.

Isn't that hug a reinforcer? If you hug him, you're rewarding him for doing something wrong.*

This is just wrong on so many levels. Life is about more than just behavior; you have to take feelings into account, too. After all the frustration and anger contained in a time out - the screaming, the crying, the anger and sadness - it's important, or at least I think it is, to show that there are no hard feelings. To show that, yes, that was a bad decision which was accordingly dealt with, but you still love and care about the child.

Hug or no hug, that's not what bothered me about what she said. What bothered me was her priorities, or lack thereof. We have to make sure that in our rush to "fix" behavior, we don't discard other aspects of a child's well being as well.

-Creigh
Mother hugging child (who looks like he's been crying)
A hug can make anything feel better.
Note: I'm not a behavior therapist either, but since the hug happens after the apology, even if you were trying to come from the behaviorism point of view, it seems in my very unprofessional opinion that you'd be rewarding the child most directly for apologizing, or maybe for sitting there and finally completing the entire time out (I don't know what you guys do, but I'll reset a timer if the child leaves the time out spot and staying for the entire time out is something we're really working on). Again, in my unprofessional opinion, the hug would be a positive thing here.

This anecdote is not a reflection on actual behavior analysts, the person involved here is not trained as such.

*There was a lovely [sarcasm] subtext of "you terrible caregiver" here. Even though I'm not his parent, because of this experience my heart goes out to those who are parents. Because WOW I have really felt judged and I know that's the daily reality for so many of you autism parents out there.
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On Squirt Guns and the Kindness of Children

5/29/2014

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Today I was at the park with a child I care for, and on our way to the bathroom he spotted two children with squirt guns and said he wanted one. Seeing their (somewhat bewildered) looks, I told him they didn't want to give one of their guns to him, and we kept on walking. 

When we emerged, there were the two children again waiting for us. The oldest, who couldn't have been more than 10, spoke first. They had a third squirt gun, he said, and not only could the child I care for play with it, but he could keep it. And then the three of them proceeded to run around spraying each other with wild abandon. It was a great afternoon.

I took two morals from this run in. One, though it may be said that children can be cruel, we should never forget that they can also be very, very kind. Sometimes we all need to be reminded that there really are nice people, children and adults alike, in the world.

And two, I need to buy some squirt guns. Great sensory fun, exercise, and social interaction facilitation all in one little package! And if I ever see those children again, you can bet that we'll be returning the favor. 

-Creigh

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On Society, Gratitude, and an Awesome Stranger

5/24/2014

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When I was younger, or even two years ago, I never understood why my mother and other parents would be filled with such disproportionate amounts of gratitude for the tiniest acts of kindness others showed their autistic children. To be quite honest, I thought it was a bit offensive. After all, you wouldn't be grateful for someone treating a neurotypical child like a human being. Why be grateful the instant that child is autistic? To me, it implied the parents perceived their children were somehow defective or less worthy of good treatment.

In short, I was very, very wrong and owe those parents a giant apology. Because as a caregiver for a child on the spectrum, I have noticed myself developing that same overwhelming amount of gratitute for the kindness of others. Treat him well and I will be grateful. Play with him, and I will love you forever.

And now I get it. It's not about the child. It's about society. I see the child I care for as every bit as worthy of respect, kindness, and love as any other child. But I've learned, through caring for him, that other people don't always feel the same way. The lady at McDonald's who hunkered down and ignored him. The dad at the park who acted like he didn't want his child to play with the child I care for. The starers - not the ones with the compassionate eyes, but the ones whose eyes look at you in disgust and say, 'Why are you letting this child behave like that?' People seem to show their true colors more often, and WOW there are a lot more intolerant people in the world than I'd realized. It's disheartening.

But every so often, you run into someone who's the opposite. A person who sees the child on the spectrum as someone worthy of care and respect. Because having those sad moments, the moments where you see the darker side of how people treat those who don't fit it, makes the good people stand out even more. 

Two days ago, I had the fortune to meet one of those people. And I was just drowning in gratitude. The child I care for had been attempting to play with her boys (which is pretty cool in of itself), but they weren't playing with him. What did she do? She got a game started, with her and the child I care for on one team, and her boys on the other. She patiently coached him through the game, made one of her boys lend him a toy gun so he could play, too. It was a lot of effort for her, and she ran around with them (again, coaching the child every step of the way) for a good twenty minutes, and then helped the child climb up the ropes course. 

It was amazing and wonderful, and she didn't have to do any of it...but she did. And she wasn't just playing to play, or for the sake of her children. She did this because you could honestly tell she cared and it mattered to her that the child I care for had fun and a great experience. By the time we had to leave, the child I care for had been able to participate in a game with children his age way more complex than he'd normally be able to do, the mother was all hugs and love (as she'd been through the whole experience), and her boys were begging me not to take him home.

And that overflowing amount of gratitude I mentioned? Two days later I still feel it. And I am eternally grateful. My only regret is I wish there were more such people in the world; we could truly use them. The society I'm working for is one where these moments aren't out of the ordinary, where people understand autism and treat people on the spectrum the way they deserve to be treated. 

But in the meanwhile, I am very, very grateful.

-Creigh
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Say Something

4/22/2014

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Originally posted: April 18, 2014

When a person on the spectrum communicates something to you, whether it be through speaking, writing, or picture exchange, please listen to them and please reply. Because words don't come naturally to many autistic people, and the words they have gifted you with are valuable. Show them that you see their value by answering back, no matter their age and no matter how grammatically incorrect that sentence may have been. Because that "How are you?" or "Hello!" may seem simple to you, but for an autistic person who struggles with verbal communication (which not all do, by the way), it's a whole lot more than that.


-Creigh
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It's the Littlest Things that Count

4/22/2014

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Originally posted: April 10, 2014

I was just reading through some of my old posts to get inspiration when I ran across my post about competence again and I was hit with the power of the moment as though it had just happened seconds ago. Here's the recap for those of you who might not have read it - there was a stranger who told me how awesome he thought an autistic girl was. Come to find out, the girl he'd been talking about was Caley. The contrast between his words and the negative outcome everyone had been predicting for Caley was just so huge and so powerful that I hugged him, a complete stranger, out of nowhere. (Here's the full post)

That moment touched me in a way completely disproportionate with the size of the gesture. He was being nice, sure, but he didn't even realize she was my sister, much less set out to do something as huge for me as he accidentally did.

But maybe that's one of the morals we can take from this story - the importance of small gestures. Because I'm not the only one who has found great power in gestures that would seem insignificant to others. My mother was telling me how one man's kindness to her and Caley in the grocery store when Caley was having a meltdown as a little girl stays with her to this day. 


Another mother told me how much it meant to her when years ago her autistic son ate chicken nuggets off of another diner's plate and instead of yelling, the man reacted with compassion. Other stories of similarly touched mothers, like this mother thanking a man for what to others would seem to be merely playing with her autistic daughter, have even gone viral. None of these people knew the indellible impact their actions would leave. But those of us affected do.

And I know that this isn't an autism acceptance or understanding or awareness post like I've been writing this month. But autistic people aren't the only ones who need help - sometimes the people who love them do, too. And we need to realize that even the tiniest gesture of support - a kind word or a moment of time - can mean everything to a person, be it a caregiver or an autistic person themselves, who is battling against the crushing weight of the societal stigma of autism.

So the next time you see someone on the spectrum or their caregiver, particularly if they're struggling, take care to be extra compassionate and kind. Who knows? Your small gesture may leave them a beautiful memory that lasts a lifetime.

-Creigh

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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

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    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

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