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  • Home
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    • Common Myths >
      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
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  • Advice for Parents
    • Visual Supports
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    • A Mother's Story
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    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
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  • More
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  • Our Blog
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    • Smoothing Transitions
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    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring

Stimming's Many Forms

11/18/2014

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[In response to Diary of a Mom's post about Brooke shredding fabric as a stim]

Growing up Caley had some fuzzy blankets made out of yarn and she'd 'pick' at them and then rub the fuzz she'd pulled off on her lips. She was so attached to that blanket that when we were in a terrible car accident when I was about ten, de
spite the fact that I was crawling out of an upside down car in the dark, I made sure to pull her blanket out with me. It was a comfort to her being able to pick at it, and at that moment she really needed the comfort, even though it had some blood on it. From that, you can tell that all of us realized that having the blanket to pick at was very important to her, but we had NO idea that was stimming. Peeling paint is another stim that we missed - we just thought it was an odd fidget when she peeled paint off the doors. It never occurred to us that stimming was more than just hand flapping.

The point is that stimming comes in many different forms and having a non-harmful stim to turn to, like Caley's blanket or Brooke's cloth, can help be an alternative to and potentially reduce harmful stims, like pulling at hair or self injury. And, if you, too, know someone who likes to peel off the paint on the walls, Caley has an alternative non-harmful suggestion to offer. Peeling glue or wax off of things can produce the same sensation...so if your hands or a glass/plate/what have you has dried glue on it, that will provide an opportunity to stim without damaging the house.

-Creigh
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On Recognizing Anxiety Disorders

11/15/2014

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So, this past week I got an official diagnosis of generalized anxiety disorder (GAD). I’m gonna be honest, guys; though it was validating to hear it officially, I realized that I had GAD years ago. As a result, this isn’t going to be a post about self-discovery. Instead, this is a reminder, particularly for those of you who are caregivers of kids on the spectrum, to be aware of and look for anxiety disorders even in children. 

I’ll explain. Anxiety disorders are highly common in people on the spectrum, the second most commonly diagnosed disorder for people on the spectrum to also get diagnosed with. They also can, and for many people certainly do, begin in childhood. Anxiety disorders come in many different forms – generalized anxiety disorder, as Caley and I have; panic disorder, as Caley has and I had; social anxiety disorder; and phobias, as Caley and I have both struggled with. If you’re not familiar with these disorders, it can be really easy to miss the signs of them, especially in children. 

When Caley was growing up, dealing with both panic attacks and generalized anxiety, none of the members of our family had any clue what it was like for her. We knew she was anxious, sure, and got her medication for anxiety. But we didn’t know what it meant. We didn’t know how she felt, didn’t take her fears seriously because WE DIDN’T REALIZE. We didn’t know that her anxiety went beyond mere worry into actual disorders which fundamentally altered how she sees the world. This is a girl who has no difficulties with spoken communication, unless she’s under stress, and yet I never understood what she was going through until I developed my own anxiety disorders, despite her efforts to explain. For kids on the spectrum who DO have difficulty with spoken communication, then, it must be even harder to communicate what it’s like. And if you don’t know what you’re looking for, as my family found out the hard way, you have little chance of understanding what your child is trying to communicate. So here’s a crash course:

Generalized Anxiety Disorder

Constant, exaggerated worry. Unlike a phobia, there is no one stimulus which is associated with fear. Instead, regular worries are amped up. For example, if you haven’t heard from or seen your mother in a somewhat longer than average period, you might believe that something terrible has happened to her. If you notice it’s windier than normal, you might worry that there’s going to be a tornado. It’s constant ‘what if’ scenarios, but ones which feel absolutely real and are different for everyone. When GAD is milder, you can ‘push through’ the anxiety. When it’s bad, doing even basic every-day things can be too much. (As I discussed in an earlier post, On Anxiety and the Effort It Takes to Climb a Mountain and Make a Phone Call:http://www.autismspectrumexplained.com/our-blog/on-anxiety-and-the-effort-it-takes-to-climb-a-mountain-and-make-a-phone-call ) 

Learn more about GAD here: http://www.adaa.org/understanding-anxiety/generalized-anxiety-disorder-gad


Panic Disorder

Panic disorder is characterized, unsurprisingly, by panic attacks. These involve an intense feeling of fear and last for several minutes or even longer. Panic attacks are associated with very physical symptoms - fast heartbeat, trouble breathing, dizziness, chest/stomach pain, sweating, and more. People with panic disorder may also grow afraid of and avoid being in places where they’d previously experienced panic attacks. 

Another thing I’d like to point out is that panic attacks can also occur during sleep. For about a year growing up, I would wake up absolutely TERRIFIED at 3 AM in the morning, almost on the dot. I was certain something terrible was happening, and I had all the physical symptoms of panic attacks. Not knowing what was happening, I would move into my mother’s room whenever they occurred, seeking comfort. It got to the point that I was going into her room almost nightly and I was afraid to go to sleep. It never occurred to either of us that they were panic attacks, because, like most people, we didn't know that you could have panic attacks in your sleep. This is definitely something to look out for in your own children as well, as panic disorder is highly treatable and had we known I’m sure my mother would have gotten me help.

Read more about the signs of panic disorder in children and adolescents (which are different than those in adults!) here: 
http://www2.massgeneral.org/schoolpsychiatry/info_panicdisorder.asp


Social Anxiety Disorder

Social anxiety disorder involves an intense fear of being judged by others. This fear is what sets it apart from the social difficulties inherent for people on the spectrum. Fear of criticism and humiliation, to the point for some of being afraid of speaking in public or being afraid of going to school, is the hallmark of this disorder. This is another disorder dominated by what if’s, ie. “What if I say something stupid?” or “What if they laugh at me?” There are physical symtoms associated with this, as well, such as sweating or shaking in the feared situation (and even beforehand). 

Read more about social anxiety disorder here:http://www.childmind.org/en/health/disorder-guide/social-anxiety-disorder


Phobias

This is the anxiety disorder that most people have the greatest familiarity with, perhaps because it’s so pinpointed. A phobia is an intense and disproportionate fear of one specific thing, and its subsequent avoidance. That can be an event (flying – as Caley and I have struggled with), a place (heights), an animal (snakes or spiders, for instance), or any number of other things. You can, of course, have multiple phobias. They can develop quickly, and be for things a person wasn’t previously afraid of. Even if the person is aware they aren’t logical, they can still have a phobia of a stimulus. So, for example, Caley and I weren’t afraid of flying until we had one really turbulent flight when she was in middle school. Afterwards…instant phobia. Caley was absolutely terrified for the next leg of the flight that we had to get on not even an hour later, and during our visit in she tried to be as nice as possible to everyone, as she knew she was going to be forced to fly again to go home and she was going to die. I, too, developed a fear of flying from this incident, though I know it isn't rational (and, because of my fear, probably know far more about just how safe planes are than most people do).

The interesting thing about phobias is that many people think they can be cured without the help of the therapist, by simply forcing the person to confront the feared stimulus over and over. Please, please don’t try this with someone else on your own. Get a therapist to help your child to overcome their fear – as an untrained person, you risk making the fear even greater by trying it on your own and exposing your child to terror for no gain. 

Read more about phobias here: http://www.childmind.org/en/health/disorder-guide/specific-phobias
 

BEHAVIOR IS COMMUNICATION

This a critical key to not only understanding people on the spectrum in general, but also detecting these anxiety disorders in them. If a person has trouble communicating by speech, a tantrum or melt-down may be their way of saying “I’m afraid of this!” It’s no less important to listen to their communication in that mode than any other.

Moving Forward
Picture

When I asked Caley to describe when she could first remember having disorder-level anxiety, she immediately said that it was when she was about four, which is about how old she is in this photo of the two of us pretending to be snakes. Four years later, when she was about eight, we recognized that she was struggling with anxiety and got her into treatment. My anxiety disorders didn't develop until later, my guess for the development of GAD would be about middle school for myself, and I didn't recognize it was a disorder until a few years ago...and even as recently as a few months ago I wasn't getting treatment. 


Our hope is that by sharing our experiences you all can better recognize the signs of anxiety disorders in yourselves and your own children. And if you missed them, don't feel bad. Like I said, unless you know what you're looking for, it's incredibly hard to tell. Caley and I have great, loving, and attentive parents, and they couldn't tell. Heck, it took me getting my bachelor's in psychology to figure it out for myself, and chances are you don't have that background. The important thing is what you do with the information now that you have it. 

I hope this post helped you understand a bit more about anxiety disorders. If you have any questions, leave them in the comments! And remember, I’m not a professional, so if you suspect an anxiety disorder in yourself or your children, please get professional help. All of these disorders are treatable, and the impact of treating them on the quality of a person’s life is immeasurable. 

- Creigh
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Caley

11/9/2014

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When many people look at Caley, often what they see is what she can’t do. They see autism and labels and difference and her many areas of struggle and automatically classify her as incompetent and lesser, seeing only perceived areas of deficit instead of her as a whole. 'They' are also very, very wrong. So today I want to share with you the person who I see when I look at Caley. 

The first thing that pops out when you meet Caley is love. Absolute and unconditional love. She loves deeply, and she shows that love with the bear hugs she is renowned for. Caley has cycled through many types of hugs throughout her life – most memorably, the tackle hugs of her childhood – but these, her bear hugs, have been the most consistent. When people see her approaching with one, they immediately shout “Go easy on me!” But the hugs, though tight, are never painful. They’re her way of showing her love for others, and that’s the best gesture of them all. Even virtually she shows her love – as with all those she knows, I often check my phone and look down to find a text that says simply “random hugs!”

The other feature of Caley’s that I associate most strongly with her is her passion for helping others. This is the girl who goes out and feeds the homeless most every week that she can manage it. They sense her love for them, as for everyone, and the fact that she, too, is often underestimated by society, and this enables her to get closer than most. She tells me about the friends she makes there – the man who she’s started an informal book club with, the woman who just can’t find a job, the little one she plays with who, though a toddler, is already a ladies’ man and will “fall” into the lap of all the girls. Her passion for helping doesn’t just express itself in volunteering. Caley is the girl who frets about her friends who are sick, is always available with a phone call to any friends she knows are struggling, calls me to ask how best she can help a friend going through a hard time. 

Behind that passion for others and love for the world lies a fierce belief in justice. Whenever I hear someone expressing racist/sexist/ableist/homophobic/etc thoughts I immediately tell her she can leave the room. This is a gesture of benefit to both the person expressing those thoughts and, more importantly, to Caley. From experience, I know she’s unlikely to change their minds, and likely to emerge deeply hurt by their words. Moreover, no matter her relationship with the person, I know she’ll plow straight through it in an effort to get at those offending words. Caley sees wrongness in the world and is immediately drawn to fix it, no matter the obstacles in her way. The rest of us see the world in shades of grey – Caley sees grey, too, but when it comes to injustice she sees things as black and white. And personally, I think she’s got it more right than we do. There are very few things in the world that Caley truly hates – injustice is one of them.

And to those people who say that love and helping others and beliefs in justice won’t get you a job – well, I say to you that she’s a person, not a walking resume. I also say to you: presume competence. Because Caley has achieved a whole heck of a lot more than anyone ever thought possible, and the biggest barriers in her way haven’t been her disabilities, but the low expectations of others. Caley is graduating college this year, with a major in Public Health and a minor in Homeland Security and Natural Disasters. She fought tooth and nail for this degree, pushed through dysgraphia to write essays, lived away from home for the first time despite the lack of a safety net, fought anxiety to go to class, battled to make her ‘spoons’ get her through class, and disproved the disdaining views of others yet again. Caley is the toughest, strongest person I know, not by virtue of disability – this is not intended to be ‘inspiration porn’ – but by virtue of how she has battled the low expectations of others and a society often hostile to neurodiverse people at every turn. 

Though it breaks my heart to say this, she’s fought against these expectations since pre-K, and I know that as she moves out into the world on her own, she will have to continue to fight. But she has battled through this far and I know she can continue to do so. That, to me, speaks more about her than any resume ever could. Caley’s going to try to go into AmeriCorps after she graduates this year, an opportunity that combines all of her passions into one, and though it won’t be easy, I know she’s up for the challenge.

None of this is to say that Caley does not struggle or that she’s perfect. She’s human, and she does have a disability which is a huge barrier for her to overcome in our society. And, yes, Caley does require help and support. But she is far, FAR more than her weaknesses. She is passionate. She is strong. She is competent. And THAT is what you should see when you look at her. 

[Image is a picture of Caley at about age two in a toy car holding the keys she used to carry with her everywhere. Driving is another one of those things that people have said she'll never be able to do. Caley's determined to learn, though, and I know this is yet another area in which she will blow society's low expectations away.]

-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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