Blog Archives - Autism Spectrum Explained

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Don't Stop The Stim

5/24/2014

Originally published 5/17/2014

This is, in a nutshell, why I don't believe in stopping people on the spectrum from stimming. Now, if oncoming sensory overload is at the base or some form of distress (as opposed to something positive), of course I believe in helping the person on the spectrum minimize that distress, which generally has the side effect of minimizing stimming.

I will also often use the stims I see as an indicator of the person's internal state when they're not talking. After all, behavior is communication, and if I see a bunch of stimming that seems to 'stem' from something negative, I will get concerned and try to help minimize the negative problem. But it is not the stimming that concerns me, but rather the internal state it can sometimes be a communicator of. And if I see happy stims, like the joyous flapping of hands after defeating a video game level or when reading a particularly great fanfiction, that fills me with joy, not concern.

In short, stimming is not a negative thing.

-Creigh

Transition Time!

5/15/2014

Today I wanted to take the time to introduce you all to something Caley and I have both found to be beneficial, from our respective positions as an Autistic person and as a caregiver for a child on the spectrum: transition time.

What's the big deal with this? Well, to those of you who aren't aware, people on the autism spectrum frequently have trouble transitioning from one activity to another. This can be due to many factors, although need for predictability (change is scary!) and a warning about an impending shift in the sensory environment seem to be the biggest. Transition time can be accomplished by many means, but all of them work towards the same end - warning that a transition is upcoming.

The benefits:
Growing up, Caley says that transition time was really helpful for her (and our mother says it made her life easier, too!). Given their backing, I started implementing it with the children on the spectrum I care for and saw pretty immediate improvements in the behavior of the children I care for (a huge decrease in crying/screaming/upset incidents and an actual decrease in the time it took me to move us to the next activity) myself.

How to help:
If you read about a lot of the products out there, they make it seem like you have to either spend money on a gadget or time with arts and crafts to create something to help you work through transition time. What works for each person is different, but the tools I use are completely free (given you have a pen and something approximating paper), take a matter of seconds to do, and I have found to be very effective.

Here's the first one: Visual Schedules

As you can tell from these schedules, they don't have to be pretty. These are all after school schedules that I drew on the fly. The largest one, in the background, depicts our schedule: 1) Therapy, 2) Home, 3) Grandparent's house, and 4) Home (again). The smaller schedule in the upper right is 1) McDonald's, 2) Home, 3) Play iPad, 4) Pick up big brother at school, and 5) Go visit the grandparents. And the last one, in the lower right, is 1) Go to the grocery store and buy a dog bone, 2) Go to therapy, and 3) Go home.

If I know that there's something we have to do during the day that one of the children I'm caring for doesn't want to do, or simply want to reduce anxiety around the day's events, I'll make a visual schedule.

If you want to go all out with this, you can buy the tools for them online, but for me I've been able to get by simply scribbling down stick figure approximations on whatever paper-like substance I find. Sometimes this is actual pieces of paper, but more often than not it's bits of envelopes (as in the one on the lower right) or napkins. How pretty it looks doesn't matter for the effects, as long as the person can associate what you've drawn with the event, so even if you're not an artist, don't worry - as my drawings show, you don't have to be great at drawing to make this work.

I've actually found that this allows for a degree of flexibility, too. You'll note that one of the schedules has a lot of scribbled out events (upper right). That's because it changed as we went. Since the child who used that particular schedule had a GREAT day at school and asked very politely, I agreed to take him to McDonald's before we went home, so I squeezed it in. By popular request, I also added iPad time into the schedule.

Due to the insertion of McDonald's into our plans, though, I no longer had time to go fill up with gas (thankfully I had enough to cover me, if only just), so I scribbled out my previous crude drawing of a gas pump. Later in the day I got a phone call of a last minute change in plans which meant we'd be going to visit the grandparents instead of going home.

Those of you who know people on the spectrum or are on the spectrum know that last minute plan changes are pretty much the most difficult kind to deal with. Having promised that we'd be going home, I was concerned I'd have an upset child on my hands. But I frantically scribbled out the picture of home and added in a picture of the grandparent's house (with all of us in front), and the results were like magic. I got only one, calmly phrased, question about it and that was it. The transition was great, but without the visual schedule there's no way it would have gone that smoothly.

The second thing I do to help smooth transitions is Count Downs.

These are what they sound like, when I count down time remaining at one event before we go to another. Something like "you've got ten minutes and then we're leaving" may not mean much to a child, but the way I do it is I count down the minutes. Even a child who doesn't know how long a minute is, but knows how to count (or even look at fingers and see them counting down) can figure out that as the numbers get lower, we're getting closer to leaving. Some kids may benefit from a more visual aid (a timer that you can watch the time tick away on, for instance), but this one works for us.

I used to do all fifteen minutes, plus a thirty second warning and then counted the last ten seconds. Now if I'm in a hurry I can do a mere five minutes, which I show on my hands (not even counting all the minutes - I'll generally give a 5 minute heads up, then 2, then 1, then thirty seconds and then ten seconds, which I also show on my hands). Just yesterday I guided a child who used to need fifteen minutes through a smooth transition where I only did the one minute, thirty second, and ten second cues. (It's so great to see how far we've come!)

Another parent had told me they'd tried transition time, but the child associated the warnings with anxiety. I had been concerned about that, too, so in an effort to make transition time not upsetting, when I first introduced it I tickled the child with the number of fingers that represented how many minutes we had left. It got to the point that when I started counting down the last ten seconds, he'd start giggling before I even touched him! Now he doesn't need the tickling, and when he wants to transition between activities, sometimes he'll simply ask me to count down the last ten seconds for him (as he giggles).

When to use transition time:
This really depends on the child. For me, I use transition time most often when a child is doing an activity they're really enjoying and is going to have to transition to something less enjoyable. For instance, when we're about to stop playing video games or leave the park.

With one child who had anxiety particularly attached to people coming and going, I used it when I was about to leave and the parents were coming home. I also use it with children if we're suddenly changing up a routine, since that tends to be a pretty tricky situation to navigate. That way the child knows and gets reminders way ahead of time that instead of doing whatever we usually do, we're going to do something else and has time to adjust.

In essence, any transition between activities that might induce anxiety I use transition time with.

Support for transition time:
I like to check and confirm the tools I'm using to help kids on the spectrum with adults on the spectrum before I implement them. ANd when I asked autistic adults, they overwhelmingly told me that they thought transition time was a great idea that really would have helped them when they were growing up and I should keep doing it. Special needs teachers have also told me they support this, and it also turns out that, even though I'd already been doing this on my own, the psychologist for one of the children on the spectrum I care for has requested I do visual schedules, as well (not knowing I already was).

If that's not enough for you, there are also many, many studies supporting the effectiveness of tools to help autistic people with transitions. Here's an article which summarizes the findings of those studies that you can use on your own.

The tools for transitions I use are SO easy and so diminish anxiety (and therefore behavior) for the kids on the spectrum I use them with. I highly, highly recommend adopting transition time tools if you're not using them already.

-Creigh

A Tale of Two Sensitivities

5/14/2014

I've noticed that people are a whole lot more accommodating of my sensory needs when I have a migraine than they are when Caley is on the verge of a sensory overload. I get very light and to a lesser extent sound sensitive when I have a migraine - in fact, my quickest remedy for one is a dark room.

As my migraines have grown worse, I've gotten better at advocating for myself. Now, if I'm around family, I think little of asking them to turn off a light that's shining right in my eyes. In fact, some meals have been merely candle lit, in deference to my issues. At work today I wore sunglasses indoors, as I have many times before, and was met with understanding and sympathy when I explained the reason. And the roommate I shared a dormitory with got used to having the lights off all the time.

Yet I find myself wondering, what if that was Caley? She gets very light sensitive, too, and is even more sound sensitive than I am, due to her sensory dysfunction (which goes hand and hand with autism). Would people be as accommodating with her needs as with mine?

Unfortunately, I don't really have to wonder; I know from experience that people are far from accommodating for Caley's sensory needs. Instead, consistently the attitude she is met with is of the "suck it up and deal with it" and/or "stop complaining" variety. No accommodations are made; in fact, in many instances upon being told of her struggles the sensory demands on her will be increased, not lessened.

What is so different between the pain and discomfort I deal with during my migraines and the pain and discomfort Caley faces when she's nearing sensory overload, to make it so that one is greeted with kindness and comfort, and the other with disdain? I originally thought it was that one was seen as being more of a medical issue, whereas the other is perceived as being pyschological and therefore 'all in one's head'.

But I think Caley's explanation better describes the core problem. A lack of empathy, she says, is the reason for the difference between how the two of us are treated. Everyone's had a headache, and most people have even had at least one migraine. As a result, they can empathize with my painful dilemma. They wince at memories of our shared pain and accommodate me where they can.

But sensory overload? There are few enough people who know what that entails from an academic standpoint, but very few of us have experienced it. And because of that we write Caley's pain and that of other Autistics off as being something they can just 'suck it up and deal with'. Because we cannot fathom what it feels like to be in her shoes, we simply brush her feelings off.

Is that not ironic? We're told repeatedly that autistic people lack empathy (which is, by the way, not true and perhaps even the exact opposite)...and yet, repeatedly, it has turned out to be the neurotypical majority that lacks it, and Autistics who are left to suffer as a result.

My point here is be accommodating of an autistic person when they ask for help. Even if we don't know what it feels like, it doesn't make their feelings any less valid. And, for the closest thing neurotypicals can get to empathy for sensory overload, watch the videos and read the discussion thread I linked to below. You still won't get what it feels like...but you may start to realize how little you understood.

Videos:
http://www.youtube.com/watch?v=IcS2VUoe12M
http://vimeo.com/52193530

Explanations of what it feels like for different people:
http://www.wrongplanet.net/postt249130.html

-Creigh

On Meltdowns, Tantrums, and the Importance of Listening

5/14/2014

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!

Self-Advocacy

5/14/2014

Originally published May 5th

When an autistic child tells me "no" he doesn't want to do something...well, I do a little internal jig. I feel the same way when he asks me to drop everything and draw him a picture schedule or give him a bear hug, or refuses to wear those 3D glasses in the movie theater*.

Why am I so happy over small events that others might brush off or think of as moments of frustration, not joy? Because these are all examples of self-advocacy. And when a child advocates for themselves, they're taking control and shaping their environment to best fit their needs. And that is not only awesome, that is to be encouraged.

Now, that's not to say I will give the child what they want every time. But when those long-fought-for words come out in a show of self-advocacy like this, I do my darndest to acknowledge them and praise the effort. And, yes, if it's a reasonable request, even if it's a pain for me to go through with, I do comply. Because learning that words matter and that self-advocacy is beneficial? That's a goal I'm willing to do a lot to achieve.

Blind obedience fosters dependence. Self-advocacy prepares a child for the world.

-Creigh

*I don't know what I was thinking taking him to a 3D movie!

This post was inspired by this post by Diary of a Mom. If you haven't liked her page on Facebook already, I highly recommend that you do so.

Update

5/14/2014

Originally posted May 1st

Hey guys! Some of you may remember that at the beginning of April I promised to do one post a day about autism acceptance / awareness / understanding. Others may have noticed that this did not, in fact, happen. The explanation for this is simple. At the beginning of the month, I saw April as just being Autism Awareness/Acceptance month and posted a new blog post every day. By mid to late April, though, it occurred to me that I'd forgotten April is also term papers/final exam month. As a result, as you might imagine, instead of posting on here, more and more I spent my time holed up in my room cramming - I mean, studying - for exams and trying to meet word counts that seemed to grow higher with every word I typed.

Caley has also been inundated by the same end-of-the-semester deluge. In fact, just last week she wrote TWENTY FIVE PAGES worth of papers. As I have mentioned here before, writing is very difficult for Caley as, like many other Autistics, she has dysgraphia. As a result, when she can she generally avoids writing. I was and am so incredibly impressed with how much writing she did last week, not only in the fact that she managed to do so, but that she didn't back down from such an imposingly large task. Go Caley!

Anyways, my point is that even when I wanted to post things I didn't because I didn't want to bother Caley to approve what I wrote (I wasn't kidding when I said she reads and approves everything) when she was busy working herself.

All of this is my round about way of apologizing for not having made all thirty days of posts. I'm sorry about that and though I'm sure most of you didn't even notice in the first place (Facebook doesn't show all my posts in your newsfeeds - the more likes/shares/comments a post gets, the more likely Facebook is to show it to you, but even that's not exact), I still felt I owed you an explanation.

Caley and I both have a brief break before our summer classes start up, so hopefully we'll be able to post a bit more between now and then. In the meanwhile, thanks for reading!

-Creigh

On Functioning Labels

5/14/2014

Originally published May 1st

In the autism community, we tend to label autistic people as being "high functioning" or "low functioning" in accordance with how well we think they function in society. You've already likely guessed one problem with this - where's "medium functioning"? - but the problems with this labeling system go much further than that.

The first problem is what does functioning mean, exactly? Does it mean the ability to communicate verbally? Or intelligence? What about people like Amanda Baggs, who are quite intelligent, yet does not speak verbally nor hold a job? Is it, then, holding a job? Well, not exactly because there are plenty of "high functioning" people who don't have jobs. You get the idea. Functioning consists of so many different variables, and to apply one label is to gloss over the natural variation from person to person.

The second problem is, it over-generalizes. A person's level of functioning varies minute by minute. Some people, for instance, can verbally communicate very fluently most of the time, but sometimes can't speak at all. And meltdowns and sensory overload mean that a person could be functioning well in society one minute, but the next not hardly at all.http://musingsofanaspie.com/2013/06/26/decoding-the-high-functioning-label/

Misconceptions are another problem. The biggest one is basically that a "high functioning" autistic person is somehow less of an autistic person than someone who is "low functioning". There are the stereotypes that come with that - we tend to think "high functioning" people need/don't need certain accommodations and the same with "low functioning" people instead of taking it case by case. Plus there's this whole idea that the words of "high functioning" people doesn't apply to "low functioning" people, which is generally a pretty arbitrary difference.

And then, of course, the fact of the labeling itself is an issue. We give autistic people these labels, they're not generally self-given.
The labels also don't stand up to clinical tests of validity and tend to be based simply on the impressions of others as to how well an autistic person can pretend to be neurotypical. Also, categorical labels aren't generally conducive to spectrums anyways, so there's another problem.

I could probably keep going, but I think I covered the biggest points. I think we say "high functioning" and "low functioning" because they're short, easy labels. Even I will use them at times, to describe how a person seems to the rest of the world. But I rarely do so and always use quotes to make the fact that it's a serious over-generalization clear. I suggest you do the same.

-Creigh

No deadlines on progress

5/14/2014

Originally published April 23rd

Too often we assign deadlines to developmental milestones, and when an autistic child fails to meet one, we fret and worry about their future. My own family was certainly not immune to this. I can tell you that Caley didn't start reading "on time", and I remember my mom and dad talking about it in hushed, worried voices.

At the time I was only an elementary schooler myself and I reassured them confidently, "Don't worry! Caley's just like me - I didn't read well at first, either, but the summer of third grade I bloomed." Lo and behold, at about that same timeline, Caley started reading. (The impetus, if you're interested in knowing, was discovering her first Harry Potter book - Caley says it's the first time she learned that reading could actually be interesting!) When she started I remember gleefully telling them, "See! I told you so!"

Why did I correctly predict that while my parents didn't? You could chalk it up to luck, but I think there was more to it than that, because that is one example of a long string of similar incidents. I think the key lies in the fact that I was blessedly ignorant of all these "deadlines" and negative narratives about autism because without them to cloud my vision, I could often see Caley's actual capabilities better than others.

Artificial deadlines are just that, artificial. Kids on the spectrum, and for that matter, all kids, are all on their own schedules, and just because they don't start doing something "on time" doesn't mean they never will. As Jess over at Diary of a Mom said today, "There are no deadlines on progress." And that's just so, so true.

-Creigh

The article that inspired this: http://adiaryofamom.wordpress.com/2013/06/05/rethinking-functional-behavior-and-the-tyrrany-of-made-up-deadlines/

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.

Top Posts

On Self-Advocacy
Difficulty with Changes
On Parental Guilt
Transition Time!
My Autism Speaks Story
A Tale of Two Sensitivities
Autism and Haircuts
Cause of Autism
Vaccines and Autism
Happiness's Variations
I Cannot Call Caley Cute
The Power of Listening
Her Autism is Worse
On Preventing Bullying
Autistic Parenthood
Facing Discrimination
Stimming's Function
On Anxiety

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Blog Info

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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