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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

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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Caley's Driving!

12/29/2014

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It's been a long day, but before I went to bed, I wanted to share this with you guys (and pretty much the whole world, actually, I'm so bursting with pride). I am so INCREDIBLY proud of my sister right now. She confronted one of the most frightening things to her in the world today: driving. 

Caley's been so incredibly scared to drive, particularly without me helping her, and some people said she never would (which when it comes to autistic people or any people, to paraphrase Jess, 'you should never say never unless it's to say you never know'). And today she did. Not for the first time, but for the first time in many years without me by her side, and on major roads to boot. She's doing this at her own pace, on her own timeline, and she is pushing towards her goals and I could not be more proud of her for that. You've got this, chica!!!!



-Creigh
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On Teaching Autistic Children and Adults the Importance of Consent

12/27/2014

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I really, really wish I didn't feel like this post needed to be written. But it does. Because, though consent is important for all people to learn, it's even more important for people, children and adults alike, on the spectrum. No one seems to agree on the statistics - I've read everything from 2-4 times more likely to a sample in which 78% of the autistic people questioned were victims of sexual abuse. Whatever the number is, we can all agree that it is TOO HIGH.

That means that teaching consent and boundaries to people on the spectrum, male and female alike, is absolutely critical. Unfortunately, more often than not, what we teach is the exact opposite. As part of managing behaviors, we teach people on the spectrum conditioned compliance. We teach them hand over hand, we teach them that they are to unconditionally follow directions from authority figures, we teach them that they are to comply. And when it comes to preventing sexual abuse, that can be a very dangerous thing.

Naturally, there are times when compliance really is important and bodily autonomy is sacrificed for a greater good - like getting a shot at the doctor's office, for example. (Which, when Caley got one as a kid, required no less than three nurses and my mom to hold her down for. It was the only way they could find to get her the shot.) 

But there are other times when we really can teach bodily autonomy, can teach that no means no. Tickling, for one. When I tickle kids on the spectrum (or any kids, for that matter), the INSTANT that they say 'no!' or 'stop!', I stop. And, then, of course, they ask me to tickle them again. But they know that they can say no whenever, and I'm teaching them that that word has power. For children who do not speak I could still use this exercise, because remember, behavior is communication. Even if they can't say no, they can still push your hand away, make noises, sign, or otherwise communicate 'no' or 'all done'. 

That, of course, is only one example of teaching consent. There are many ways to teach it, and I'll link you to several articles that have done a great job of covering the issue. The point here was, however painful it is to think about, this really is an issue to be aware of, and one you can start teaching children young. Trigger warnings for all links.

Diary of a Mom's take on the issue: "When we prize compliance over communication, we train our children to be victims. How do we tell our children that it’s okay to say No while keeping tallies of “incidents of non-compliance”? ... How do we teach them to create and enforce their own boundaries when we don’t recognize them when they do?"
https://adiaryofamom.wordpress.com/2014/01/17/the-power-of-no-revisited/

An Autistic adult's perspective: "Children like yours -- children like I was -- are taught to be compliant. [...] They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me."
http://www.thinkingautismguide.com/2013/02/no-you-dont.html

Child Sexual Abuse Fact Sheet: "Let children know that they have the right to make decisions about their bodies. Empower them to say no when they do not want to be touched, even in non-sexual ways (e.g., politely refusing hugs) and to say no to touching others." (Advice on preventing abuse is on the last page.)
http://nctsn.org/nctsn_assets/pdfs/caring/ChildSexualAbuseFactSheet.pdf

Autism, Relationships, and Sexuality: For information specific to sexual abuse, skip to page 110. 
http://www.srcp.org/for_some_parents/developmental_disabilities/activities_to_use_with_your_child/autismDD.html


Sexual abuse is an unspoken issue for autistic people, but we can't help combat it unless we acknowledge it. Teaching people on the spectrum consent and bodily autonomy is one of the best ways we can do so.

-Creigh

[This seems like a good time to remind you all that I am not a professional, and this advice comes only from personal experience as a family member and someone who has cared for children on the spectrum.]
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On Parental Guilt

12/18/2014

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On the earlier post on Diary of a Mom, where Katie concluded that to 'cure' her sister would be to get rid of the person that she is, a mother commented about how ashamed that she felt that she had not realized this. She said that she had tried everything to cure her son of autism, and now she felt shame that she had ever tried to do so. I replied to her with the following, and then realized that the rest of you could probably use to hear it as well. So here it is:

Don't feel ashamed. We've all been where you are. But what matters most isn't where you've been, but where you're going. My sister and I have to argue with our own mother all the time, because she and our other relatives feel terrible for not having realized all along Caley's own thoughts about being Autistic. Now they read our blog and are pretty frequently ridden with guilt when we talk about Caley's true feelings and experiences, because, well, holding yourself to the standard of perfection is one of those things parents tend to do, never mind that they would have had to read minds in order to know what Caley's now expressing.

But here's what we tell our mom every single time. You didn't know. When Caley was diagnosed, everyone told you to grieve, to mourn for your lost child, to regret all that she could have been and would never be, and to fight autism for all you're worth. (A psychologist literally told her these things. And even though I hope psychologists aren't still saying that, that is the message we get from society about autism to this day.) You believed them. Because you didn't know, and you could not have known based off of the information that you had. Now you do know, and you're acting on that knowledge. And that, that's the important thing. Guilt paralyzes - knowledge empowers. 

This picture is the perfect example of this:
Picture
In the photo, Caley is plugging her ears and looking afraid, forcing a pained smile for the camera, while I pose happily for the camera. We were sitting under a bell tower and told the bell could go off at any moment. Caley was, of course, terrified of the sensory onslaught she was about to experience. Mom and I just thought she was over-reacting. After all, the bell wasn't really that loud...right? We didn't know. We didn't understand how she felt, how she experienced her world. Back then she was too young to really be able to explain it, and there weren't the Autistic advocates speaking out to educate others that there are today. Not to mention the fact that this photo was taken pre-diagnosis. 

These are the types of moments that parents look back on, saying, "How could I not have seen?" But short of being autism experts prior to diagnosis (which few parents are) or mind readers, there's no way to have known. Thinking about an incident like this in retrospect (which every parent of a child on the spectrum has) shouldn't be a cause for guilt, only cause for understanding going forward. And I will add, Caley doesn't blame our mom for not having known, nor do I. (Which is a good thing, too, because I didn't know, either.) She, too, understands.

I would like to add, my Momma's a danged awesome mom. And I'm sure you all are great parents, too. 

-Creigh
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Response to Magic Wand

12/17/2014

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In response to Diary of a Mom's post, "Magic Wand." If you haven't read it yet (or liked her page, for that matter), I recommend you do so before you proceed.

I didn't have Katie's wisdom when I was growing up. I loved Caley for who she was, yes, but I didn't realize that the idea of loving Caley for who she is and curing her of autism were fundamentally incompatible...that a "cured" Caley would 
no longer have the characteristics that made her Caley. 

I remember talking to my mom when I was younger, saying out loud that it was such a pity that Caley was autistic - after all, she was already really smart, and she'd be even smarter if she wasn't autistic, right? I viewed autism as something that exclusively kept Caley down instead of something that made Caley who she is, the good, the bad, and the in between. It took me a very long time to realize the truth of the matter, and I wish I had figured it out as soon as Katie did.

I love you, Caley. I will always support you as you grow and learn, just as all of us do, but I will also never try to make you be someone you're not. 

-Creigh
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My "Big" Sister

12/9/2014

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So, I've been talking to some new friends lately, and several times now the reaction when I refer to Caley as my little sister has been to say, "Oh, I thought she was your big sister!" Now, that's not an uncommon reaction - plenty of people think that Caley's older than me when they meet us. I'd always chalked it up to the fact that Caley is the taller of the two of us (much to my regret - she loves teasing me and calling me her 'little sister'). But these people have never met Caley before, never even seen pictures of her, so that can't be the confusion. Why then, I wondered, did they think I was Caley's little sister?

And so I asked them. And you know what they told me? They told me it's so clear that I look up to Caley when I talk about her that they simply thought she was the older sibling.

And that is so very, very true. I really do look up to Caley, and I'm thrilled to hear it shows through when I talk about her. And you know what else? She looks up to me, in turn. We're each other's role models. I admire her so very, very much. And, yes, she inspires me. Not in an inspiration porn kind of way, but in admiration of her sheer spirit. Caley is tough. She is a strong adult woman. She has accomplished a ridiculous amount, all while pushing through artificial barriers and societal low expectations. And she's still fighting.

An hour ago, Caley texted me telling me she'd applied for graduation for this upcoming semester.

My sister is graduating college. And few people realize how much she FOUGHT tooth and nail for this degree, and she's about to get it. I am so very, very proud of her. Yeah, I do look up to her. And I always will.

I love you, 'big sister'.

-Creigh

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How Far We've Come

12/2/2014

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Last week, I got a catalogue in the mail. I must have been automatically signed up for it when I attended a conference recently because it was a catalogue of therapy materials, mainly for children with sensory sensitivities. They were some great materials – I flipped through page after page of weighted vests, chewelry, boxes full of toys for stimming and a million different tools for bouncing. They even had suggestions to combine the materials make sensory ‘habitats’ for children to use, to have a safe place to go and get the sensory stimulation and/or reprieve that they needed. All of the suggestions were great, and I found myself wishing that there were materials for adults – Caley has been wanting a weighted blanket or vest for a long time now. 

But then I got to remembering what we’d had for Caley when she was growing up. Chewelry? Caley had a makeshift plastic necklace that my mom had hung a piece of flexible plastic tubing she’d cut off and strung on it. Weighted blankets? My mother hand sewed a blanket that she inserted weights in that she’d bought from the store. Even much of her home-therapy materials pre-diagnosis were made by hand. I still remember helping Momma fill up giant tube socks with beans to serve some therapy function that, as an elementary schooler myself, I didn’t fully understand. There was no easy-access catalogue like the one I just got mailed, at least not a mainstream one that Momma knew about. All we had was us and whatever the therapists happened to give us.

Moreover, when Caley was diagnosed back in 2002, we didn’t have Internet at home. There was no Amazon to go and purchase these things. There were no online discussion forums (at least none we had access to) where she could go and chat with other parents of autistic children, much less autistic people themselves. She couldn’t just go and Google “autism” and learn from what came up. Books and VHS tapes, that’s what she had. (And that is far more than previous generations can claim.)

Momma told me that when Caley was diagnosed she went to the book store and bought up all kinds of books on autism. I remember seeing them in our house, pages flagged and marked where Momma had read something important. And there really was no good way to look up second opinions about what the experts who wrote these books had to say – it was simply, whatever they said went. She also borrowed some VHS tapes about autism and ADHD from the therapists. I remember sitting there watching them with her, feeling like it was my duty as a sister to learn something, but more than that, feeling it was my duty as a daughter to support my mother in her quest for knowledge. I may not have understood everything that was going on, but I knew that this was important to her, and I think I even understood a little bit that it was a hard time for her. I also remember being very, very bored (I was an elementary schooler, after all).

Sometimes, I think we get caught up in how much has yet to be done in our society for autistic people and their families, overwhelmed by the daunting task of it all, that we don’t realize how very far we’ve already come. Back when Caley was diagnosed we’d already come a long way – at least there were books that we could turn to, and it was no longer considered accurate to blame the parents for their child’s autism (although not all professionals had gotten the memo yet, as my mom discovered). 

And now, now we’ve come even further. If you want to know about autism, there are a plethora of free websites you can turn to. Want to go buy some therapy materials? Just go check Amazon. Not sure about the effectiveness of an intervention that friend of a friend told you about? Try Google Scholar. And if your child is having a meltdown in the grocery store, as my sister often did growing up, you can explain to the employees that your child is autistic and have a reasonable chance of them having an idea of what you’re saying, rather than thinking you’re telling them about your child’s artistic inclinations. What’s more, you can read the writings of autistic adults who have forged the path for the current autistic children of the world. And each time you gear up for that IEP meeting where you have to battle for your child, you benefit from the many parents who have fought those same battles before you. (Though it certainly doesn’t feel like it at the time.)

Though there are new challenges, we have come so very, very far in such a short time. So whenever you’re feeling hopeless, like the task of autism understanding is just too large for you to burden, look back on that. You’ll see that the trend is shooting ever higher and, if you’re like me, that will give you a whole lot of hope for the future.

Thank you to my Momma, and to my sister, and to all the other mothers and fathers and children now-adults who have fought their way to make the society we live in today that much more friendly to autistic people. I know it’s been hard, so hard. But your efforts continue to pay dividends.

-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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