Category: Listening

On Toothbrushing, Sensory Sensitivities, and Pain

10/30/2015

As those of you who are caregivers for those who have sensory sensitivities (as most anyone on the spectrum does) or who have these sensitivities yourself know, toothbrushing can be a sensory NIGHTMARE! I'll let Caley explain how it feels:

"PAIN!"

That's all she said when I asked her to describe it and I think that's plenty. And flossing, she says, is even worse!

When she was younger, our parents were in charge and made sure her oral hygiene was kept up by making her brush her teeth.

However, now that she's an adult who can make her own decisions, Caley has declared that the pain of toothbrushing is not worth the benefits (which should tell you just how painful it is) and that we should try to find something to do instead.

Here's everything we've tried so far, including what's worked and what hasn't, so that those of you with similar difficulties can learn from our experimentation.

Attempt #1: No Burn Mouthwash
Caley vetoed regular mouthwash right away, for sensory reasons, but agreed to try "no burn" mouthwash instead. Apparently that's false advertising on their part because she took one mouthful and immediately had to spit out and rinse.

As Caley says "It BURNED!!!!! It was lies!"

As that didn't work, we tried a mouthwash that didn't have any alcohol in it whatsoever: Biotene mouthwash. Caley approved of the lack of the burn, so this product gets the thumbs up from her!
That said, mouthwash alone is no substitute for an actual toothbrush. So we kept looking...

Attempt #2: Water pic
We thought this might be able to help with actual plaque removal, unlike the mouthwash. At the same time, unlike toothbrushing the water didn't have painful bristles, which was a point in its favor.

Unfortunately, despite looking like a good product for sensory avoiders this didn't work out. Not only was the water pressure not enough to really get rid of all the plaque, but the machine itself was LOUD, which set off sensory sensitivities in a different way!

Points for effort, but this one ended up being a waste of money for her needs.

Attempt #3: Stimudent
These are little wooden picks that you use to get plaque off your teeth. These, unfortunately, didn't work out either, also for sensory reasons, as well as practical reasons.

Sensory wise, they made Caley's gums bleed. The taste of blood really bothers her, so that was already enough to make her not want to use them. On top of that, it takes a forever, in Caley's words, to fully clean your teeth with these. Practically, therefore, these didn't pan out either.

Attempt #4: Trident gum
This one met with approval! Trident gum helps (slightly) to mechanically dislodge food in the mouth, and an ingredient in it, xylitol, helps make the mouth a less pleasant environment for harmful bacteria. That's actually the same ingredient as they use in baby toothpaste!

Again, like mouthwash, definitely not a replacement, but certainly helpful as part of a bigger oral hygiene plan.

Attempt #5: Oral swabs
These are basically little sponges attached to popsicle sticks. You can get them plain or, as we did, treated. Ours has dentrifice on it, which acts to scrub plaque away by abrasion, as toothpaste does.

They're easy to use, you just brush them around your mouth like a toothbrush. They're meant for people with disorders or health problems that make toothbrushing impossible - which certainly applied!

Caley tried them and deemed them a success! Not only did the sponge not cause pain, but it was also pretty much flavorless (despite saying they were mint flavored) - another point in favor for a sensory avoider!

We had a winner!

Conclusion:
Now, am I saying these solutions are as good as flossing and brushing? No, not by any means. However, they mean Caley doesn't have to be in pain anymore, and using all three of them together (Biotene mouthwash, trident gum, and the oral swabs) makes a halfway decent oral care program.

It was definitely worth it to respect Caley's needs and find something new instead of trying to force her to do something that wasn't working for her. Caley and I are sharing this story to help those of you with similar needs find something that works for you, too!

Let us know in the comments about any other sensory friendly oral hygiene products you know of, or if you've run into similar toothbrushing issues yourself!

-Creigh

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On Speaking Up for Others

1/8/2015

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I really liked this post on Invisible Strings about the difference for speaking for someone and speaking up for them - he had a great way of putting it. As an ally to the autistic community, this is pretty similar to what I strive to do. I ask myself, am I putting words in others' mouths? Or am I amplifying their voices? Or, as M put it, are you speaking for others, or speaking up for them? That's something we ALL need to consider, autistic or not.

As I was reading through the comments I found a comment where an obviously loving mother spoke of how she had to speak for, on behalf of, and in place of her autistic son who does not speak. There are a couple of ways to take that, but just in case it was in the less positive way, I went ahead and offered some thoughts. I think you all may find them helpful as well. Here's what I said:

"I really hope that in your comment, you meant that you use his communication (behavior is communication, you don't have to speak to 'say' "No, I don't like that!" even if it's in the form of screams - even self-inurious behavior is communication), your instincts as the person (other than him) who knows him, and the words of autistic people as your guide. I think that's what M means, and certainly what I mean, when we say you shouldn't speak for others. That you shouldn't try to claim that, in this case, your child's experience is the same as everyone else's, and applying this further, nor should you speak in place of someone - which is what you would be doing if you spoke and said he wanted something that he was clearly communicating through behavior that he did not want, or ignored the words of autistic advocates.

Basically, you want to amplify what you think your child's actual wants and needs are, amplify what you think he would be communicating if he could, rather than speaking for yourself and saying that's what he would want. I hope this makes sense - here are some examples of what I mean.

Example of a parent who speaks for their child:
http://neurowonderful.tumblr.com/.../a-long-sad-story

Example of a parent who amplifies their child (her daughter is communicating by writing now, but you can look back further in the archives if you want an example of a time she wasn't):
http://emmashopebook.com/

You have a very difficult job, indeed. Parents in your position have to struggle to think of what their child's wants or needs might be, even if they might be different from their own instincts. I can't imagine how hard that must be. But you shouldn't have to do this completely on your own. Whenever I have questions about what an autistic child who can't communicate their needs to me would want, I turn to WrongPlanet, an online discussion forum for autistic people, and I ask them their opinions. There are people all over the spectrum there with all kinds of diverse experiences, and I use their input, combined with what I personally know of the child, to come to my best guess conclusion of what I think they would want. I'd really recommend checking out the website, it's extremely helpful.http://wrongplanet.net/

You sound like you love your son very much and I wish you both the best of luck."

I hope this was helpful for you ASE readers as well. I really do use WrongPlanet a lot as a place to ask questions - they have a parents page where you can ask for others' insights and it's really helpful. If you're shy and worried about posting, they archive their old posts so you can simply search through the website and see if someone has asked your question before.

-Creigh

As always, remember I'm not a professional, I'm just a family member writing from personal experience.

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The Paths to Understanding

10/16/2014

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A woman I was talking to last night asked me how I know about autism. I honestly didn't know how to answer her. In the professional context we were in, it was clear she was expecting me to cite trainings. I have been to none. A second likely option in the context would have been to cite my classwork. While I have taken classes that have mentioned autism in passing, believe you me, next to none of my autism understanding comes from them.

I examined my options. I could tell her that I know about autism because of my sister being Autistic. But that would be wholeheartedly untrue - autism understanding isn't the kind of thing you pick up by osmosis, and pre-website making I knew next to nothing about autism despite having a sister on the spectrum. I could also say I know about autism from caring for kids on the spectrum. But being a caregiver teaches you how being autistic affects that one child, not all autistic people.

One by one I went through and discarded each possibility, and finally, hours later (after I'd mumbled something about not having professional training), I found my answer.

I know about autism because I listen to autistic people.

That's it. There are no special requirements for this understanding - you don't have to be born into a certain family or pay for certain classes to earn it. That understanding is there for the taking for anyone who wants it. And, yet, it is utterly rare.

One of the many barriers that keeps people from this knowledge is not knowing where to find it. But you don't have to know an autistic adult in person to learn - there are so many collections of their writings and meeting places online. Check out Autistikids, a website which brings together the descriptions of people all over the spectrum of what it's like to be autistic. Or go through WrongPlanet, the discussion forum for people on the spectrum and read as they describe their lives and what's important to them, and ask questions when you want to learn more.

There are so many paths to this understanding, and they're all free for the taking. For those of you new to this journey, please join me on one of these paths. You have nothing to lose and there is so very much to be gained.

-Creigh

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People, Not Puzzles

9/5/2014

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Caley hates the puzzle piece autism logo. Me, I don't think I dislike the puzzle idea itself, but I do strongly dislike pretty much everything it's being used to connote. And it REALLY bothers me that, though many autistic people have reported that they find it hurtful, organizations continue to use it.

And it's not always an issue of using the logo without knowing how hurtful it is. A lot of autism organizations are aware of that people have reported it hurtful, and yet they still use that logo, and that bothers me most of all. Caley once went to a large autism organization seeking aid, only to find that their informational table was plastered with puzzle pieces. She said that as an Autistic person, she found the puzzle piece logo to be hurtful. She said, "I'm a person, not a puzzle." And they replied, "Oh, we know a lot of autistic people find it hurtful, but we have to use it."

Caley was SO upset to hear that this organization that purportedly stood for autistic people used a logo that they themselves KNEW many autistic people found hurtful that she had to walk away. That day, and to this day, she did not get the help that she needed from the organization, because they had hurt her.

Yes, I realize you can't change your logo just because one person doesn't like it, but this isn't one person, this is scores upon scores of people who actively find it hurtful. And yet, it's still used. And that fact? That fact really, REALLY upsets me.

So if you're trying to help autistic people, please, PLEASE use another symbol. The infinity spectrum is the commonly accepted alternative, if you're looking for one. But don't use, or if you can avoid it, even share anything with a puzzle piece. I can tell you Caley cringes every time she sees one, turning an attempt to help into something very hurtful, and you know what? She's not alone. So if you're looking to help autistic people, use a different symbol. And when an autistic person tells you something is hurtful, please, PLEASE listen.

-Creigh

Further Reading:
Judy Endow's Post Goodnight Autism Puzzle Pieces
http://ollibean.com/2014/04/04/goodnight-autism-puzzle-pieces/

A beautiful picture of Autistic advocates protesting...well, a lot of things, but puzzle piece logos among them
http://2.bp.blogspot.com/_VyorhzF_el4/S89bae-bUKI/AAAAAAAAAH4/Y2hzkNFMpj0/s1600/group1.jpg

I'm a Person, Not a Puzzle (shows the alternative the autistic community has offered to the puzzle piece, the infinity spectrum)
http://chaoticidealism.livejournal.com/32509.html

Also, those of you who also liked his page may note that this post heavily drew from a comment I left on Invisible Strings's post about his own feelings on the puzzle piece logo. Awesome page, if you haven't liked it yet, I highly recommend doing so!

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On Black and White Categories and Self Determination

8/6/2014

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I should be studying for finals right now (I have one tomorrow morning), but instead an incident keeps sticking in the back of my mind, and given that it's been a month since it occured and it's still staying with me, it may be worth writing about.

I was paying my bill at a restaurant, wearing an autism understanding t-shirt as I frequently do, when the cashier said, "I love your shirt! My brother's autistic." Well, I thought it was the coolest thing to find another sibling so randomly and I told her so. And then our conversation hit a rough patch:

Her: "So is your sister high or low functioning, then?"
Me: "Well, actually, she doesn't like to use functioning labels. She and a lot of autistic people say they oversimplify."
Her: "So she's high functioning then."

The rest of the conversation was great, but that little sticking point has stayed with me. We as a general population LOVE to put people into either-or categories. You're either male or you're female. You're black or you're white. You're an introvert or you're an extrovert. You're high functioning or you're low functioning.

The problem is, the world doesn't actually work like that. And by forcing people to try to fit into our contrived categories when they're clearly telling us they don't fit, we are doing them a serious disservice. So when I tell you that Caley doesn't like functioning labels, that's not a fact point to use to justify putting her into one. It's a right to self-determination, and a stance against a practice that she and so many other autistic people have spoken out against.

It's time for us to listen.

-Creigh

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Self-Advocacy is Only Half of It – On the Importance of Listening

7/17/2014

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So I may have had a minor freak out on my sister in the parking lot of a restaurant the day before my dentist appointment when she reminded me about it. I told her that I had tried to say I didn’t want to go to the dentist, that I hated them, and that I really didn’t want to go because it HURT. Plus, truthfully, I was a little bit scared. She told me that I could advocate for myself at the appointment and that if I didn’t want to, I didn’t have to go. So I went.

Now, my fear and hatred of dentist appointments and all things to do with teeth have several roots (no pun intended). For one thing, I once had baby teeth that needed to be pulled, and I remember the dentist putting his knee on my chest to pull it out. It hurt a lot and I kept on spitting blood, but no one seemed to think there was anything wrong with that. Seriously, he should have figured out that by the time he had to put a knee on my chest that maybe we should reschedule an appointment and come back later when the root had dissolved more.

My other issue came from my orthodontist. For one, they never really thought that my cheeks being torn up by the orthodontia to the point that flesh in my cheeks was hanging and bleeding. I had had my tongue drilled through once as well (by accident while they changing out some of the orthodontia). Seriously, I was eight or twelve at the time, they should have expected my tongue to move.

But the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.

Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.

While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. [Creigh’s addition: And, really, in what world is bullying to be taken seriously, but someone telling you they're in serious pain is not?!]

So, yet again, four days ago I had to attempt advocacy about my mouth…with my mouth (joke intended). I told the dental assistant about how I had a sensory disorder and that brushing my teeth and especially flossing really hurt, and that she wasn’t to floss me. She kept arguing that it wasn’t sensory, it must actually be me grinding my teeth, like she knew my body more than I did. But finally she conceded and said she wouldn’t floss me, and was kind enough to give me numbing gel while she did her work.

Unfortunately, she then decided that it was okay to floss me. I don’t know why I didn’t speak up about that. Sometimes self-advocacy just feels like wasted energy. Because after you advocate for the first time and they won’t listen, you know they won’t follow your wishes at all. I’d hoped that would have ended when I became an adult, but it didn’t.

I went off, disappointed. Yes, my teeth were clean, but my wishes weren’t respected. And the numbing gel hadn’t changed the fact that I could feel every scrape against my teeth, taste the blood in my mouth, and hear the high pitched whirring of the tools.

At the end, I dared to ask her, hey, look, do you know of a toothpaste that doesn’t hurt? And she decided I was allergic to an ingredient in toothpaste. At that point, I felt too cowed to be able to correct her. So I didn’t get the information that I needed.

Afterwards, I shared the information with my sister, and Creigh shared with me that the receptionist had asked her if she would sign my HIPAA waiver for me, or if I was competent enough to do so myself. I’m freaking twenty years old. I’m an adult. Yes, I’m competent.

Unfortunately, this sort of issue has followed me around in all sorts of areas. Including medical, where not advocating for yourself can be an incredibly big issue. Multiple of my doctors have not listened when I told them I did not feel comfortable taking certain medications. And I felt cowed into accepting the prescription. Even though I tried to argue, they wouldn’t even listen. They just bulldozed over me.

So, like the girl in the orthodontist’s office so many years ago, I had to take matters into my own hands. I simply didn’t take them. Or I’d try taking the medications and then stop taking them by myself. Which led to dangerous withdrawal effects more than once. Because I didn’t feel like I could tell them I wanted to stop and have them listen to me.

All of this could have been avoided if I was listened to. Self-advocacy is only half the story. You have to have someone to listen to your words. Otherwise you just stop advocating. Because what’s the point?

So do us Autistics a favor and please listen to us when we try to advocate for ourselves? Because it’s really hard and because we’re going to have to be doing it for the rest of our lives.

-Caley

[Note: Post dictated by Caley and typed by Creigh, but these are all Caley's words. Image is of an array of dental tools on a tray.]

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On Meltdowns, Tantrums, and the Importance of Listening

5/14/2014

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Originally posted May 8th

I have always struggled to tell the difference between melt-downs and tantrums. I am VERY sympathetic about melt-downs, which look similar to tantrums but come from a place of the autistic person's pain and are uncontrollable, as opposed to a tantrum. But when a child has both tantrums AND melt-downs, how do you know what is what? I try using the situational cues to help me. Was there a sudden change, are there sensory hot points in the environment, is the child seeking out something or trying to get away from it? I try REALLY hard to identify melt-downs and I treat them very differently from tantrums.

But sometimes I fail. It's not often, but sometimes I do think a meltdown is a tantrum and only realize in retrospect. I cannot tell you how much I beat myself up over it, but I think you can imagine.

The last time I made this mistake, the child advocated for himself, which is the only thing that saved me from putting him in what surely would have been a full melt down situation.

He put himself in time out. His request, not mine. Up to that point, I'd thought that he was having a tantrum. But after he requested a time out (begged, even) I knew that something was off, because he HATES time outs. So, going on a feeling (even though it should have been obvious, given he was wearing my sunglasses and had his hands clamped over his ears and in retrospect I cannot BELIEVE I missed this), I complied. I let him have a time out, set the timer on my phone as I always do to show him how long his time out was going to be. I told him when the timer went off we would go in the room, because lying on the floor was not an option.

And he calmed. After that timer went off, he was much calmer, stood up (which I hadn't been able to get him to do before), almost made it in the waiting room...and then fell to the floor again, screaming. But once again, his advocacy showed me the way. There were three chairs set outside the waiting area, which he'd told me he wanted to sit in instead (and I'd about to agree to, before I was cut off by the screaming). I took him there instead, and lo and behold, he was calm.

Later I saw what the problem was. I was trying to take him into a waiting room, which is normally devoid of people, but on this particular day was full of a throng of very loud, very chaotic people. By putting himself in a time out outside and telling me he wanted to sit in the chairs, he avoided the room. In those long minutes, he did an amazing job advocating for himself, and thank goodness I listened to him.

I guess the point here is to listen. Pay attention to what someone on the spectrum is communicating, whether it's through words or behavior (because behavior is communication). They are their own best advocates and they know what they need.

-Creigh

My post here was originally inspired by this post by Diary of a Mom. If you haven't seen her Facebook page yet, I highly recommend liking it!

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The Power of Listening

4/22/2014

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Originally posted April 12, 2014

So often we ignore and devalue the words of Autistics. Too many professionals and researchers stand up and pontificate about their pet autism theories, yet refuse to even consider adjusting those theories when autistic people reply that they don't match up with their actual experiences of being autistic at all. Such professionals respond that the autistic person simply doesn't understand the theory and dismisses their claims. This is one kind of devaluing.

Another type of devaluing comes when an Autistic speaks up and makes their thoughts known, yet those who disagree with them systematically devalue their words, not on the grounds of their argument, but on the grounds of their autism. Common examples of this are when an Autistic person says something disagreeing with, for instance, the parent of a child on the spectrum, and the parent replies "Well, your autism isn't like my child's autism." Translation: I'm not going to listen to what you say.

Because here's the secret - over and over in these encounters, the common thread that decides whether or not an Autistic is deemed autistic enough to weigh in on an issue is not whether or not they are deemed similar to the child in question, but whether or not they agree with the other person.

If they agree, the reaction looks something like this: "Look, this autistic person agrees with what I'm saying, thank you so much, autistic person, for your wise insight!"

If they disagree, though, the reaction is much different. "You can write/speak/communicate, so your autism isn't like that of the person I'm talking about." In this 'logic' of course, the writer ignores the fact that they themselves aren't at all autistic, so by their own apparent logic their own words would have no weight whatsoever.

In this great article posted on Diary of a Mom, Barb Rentenbach, an Autistic woman who types to communicate, confronts both of these ignoring tactics. In her post she takes on the false idea of some professionals that she and other Autistics lack empathy (which Autistics have repeatedly protested, yet a topic on which professionals have repeatedly ignored them), and also shows an example of an "autism shut-down", by which I mean someone trying to devalue her opinion about autism and the role it's played in her life. She rises above both admirably and does not seek to shut down conversation with either party, but, rather, teach us all something. She has some very powerful, very valuable thoughts to share. I highly suggest reading them.

In the meanwhile, the point of me writing all this was to say:
Autistics communicate. It's time to listen.*

By the way, for any of you wondering, Caley does sign off on all these posts that I write. For this particular post, given that she's been subjected herself to both kinds of shut downs, she had a particularly strong reaction that put a smile on my face, and I though I'd share it. In her words: "Heck yes. Preach, sister, preach!"

-Creigh

http://adiaryofamom.wordpress.com/2014/04/10/listening-barb-rentenbach-writes-to-andrew-solomon-magic-ensues/

*Yes, that riff off of Autism Speaks' extraordinarily ironic (considering they're the organization that least listens to the words of Autistics) motto was intentional satire.

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Want to Know About Autism? Ask an Autistic

4/22/2014

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Originally posted: April 8, 2014

When parents' children are first diagnosed, they turn everywhere possible for information to help them understand autism. Their first exposure is likely to come from the professional who did the diagnosis, the next from Google (and therefore Autism Speaks), and subsequent information often comes from books and other parents of autistic children. But there's one critical group that gets completely eclipsed here: autistic adults.

It is ironic, because who better to help you understand your autistic child than an adult who is autistic themselves? And, yet, that is the exact same group whose advice and opinions are not only the least publicized, but often also the least valued.

Today I encourage you to learn from autistic adults and what they have to say. Even if you don't know someone in person, there are many resources online to help make this possible. This miniature blog library collects the thoughts of autistic people on a variety of topics, from stimming to meltdowns.
http://outrunningthestorm.wordpress.com/want-to-know-more-about-autism-ask-an-someone-who-is-autistic/

Better yet, I highly recommend visiting WrongPlanet, the online discussion forum for autistic people and those who care about them. There you can make an account and (respectfully) post questions you have about autism, and get rapid insights directly from autistic people themselves. If you're not comfortable with that, you could try simply reading through the discussion forums. Even that gives a huge insight into the competence of autistic people and their thoughts.
http://www.wrongplanet.net/forums.html

-Creigh

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On Toothbrushing, Sensory Sensitivities, and Pain

On Speaking Up for Others

The Paths to Understanding

People, Not Puzzles

On Black and White Categories and Self Determination

Self-Advocacy is Only Half of It – On the Importance of Listening

On Meltdowns, Tantrums, and the Importance of Listening

The Power of Listening

Want to Know About Autism? Ask an Autistic

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