Sunday, August 18, 2013

Stimming

Stimming is harmless, right?  Maybe it is just me but it sure seems like many autism self-advocates think that stimming is something harmless or is only a problem because of other people's opinions.

Here's one recent example -
But people tell autistic kids not to stim in public all the time. Again and again I see conversations and articles insisting that stimming–or if they’re trying to be politically correct, certain types of stimming– isn’t appropriate public behavior.  
Really? And why is that? Who exactly does stimming embarrass? Not the autistic person who’s doing it. 
The idea here is that stims happen, can't be controlled, and that the only reason that parents try to stop stims is that they are embarrassed.

Here's another one that is so hyperbolic that it would be funny if it weren't so sad -
Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you... 
if you... 
if you...
The overriding theme of this last one is that stopping or redirecting stims to tantamount to child abuse.  Yes, the point is that the common phrase "quiet hands" is somehow taking away this person's voice.  And here I was under the impression that it is autism itself that causes problem with expressive communication.  Silly me.

I could go on to point out other examples of this meme but I think you get the point - stopping stims is bad.

As a parent whose children who have to struggle with autism, I couldn't disagree more.  Stims are not some harmless thing that can be ignored.  Stims can and regularly do stop a person with autism from being able to function or learn.  And, in some cases, stims can directly harm a person or put them in harms way.

Normally I would just let these things go and simply ignore what is being said.  The people who are making statements like these presumably have a diagnosis of autism and know how their personal stims affect their daily lives.  I might think that they take an extremely shallow view of stimming and what it is like for people who aren't quite so high functioning but I don't like to nitpick what people with a disability say about their disability.  Especially since a lack of understanding of what others are thinking or experiencing is a large part of the disorder that they are struggling with.

However, this time I ran across that first article because someone pointed it out on twitter and highlighted it as a "great post and discussion".  This person, in my opinion, really should know better and should understand the nuances and issues surrounding stimming in autism.

But apparently that isn't the case.  Apparently the idea that stims are harmless is gaining traction and acceptance even among people who should know better.  So lets talk about what is wrong about that idea starting with a definition of what a "stim" is.

A stim is any behavior whose purpose is self-stimulation.  The behavior is typically going to target or involve one of the following things -
  1. One or more of the five senses (sight, hearing, taste, touch, smell)
  2. The vestibular sense (balance, movement, acceleration)
  3. Pain or pleasure
  4. Anything else that can induce a feeling or sensation
In one sense, everybody has stims because everybody has behaviors that are designed to stimulate themselves.  But there are very clear differences between a "typical" person's stim and an autistic stim and these differences come down to a matter of choice and a matter of degree. A "typical" person can control their behaviors and can choose when and where to engage in them.  They control their behaviors, their behaviors don't control them.  

In autism, there is a definite lack of choice and a definite lack of ability to control the level or degree of the stimulation.  Stims happen for a variety of reasons, some internal, some external but the person with autism doesn't necessarily have the ability to rein in or stop the behaviors even if they wanted to.

So, the question is then why do parents try to get their children to stop stimming?  If it stimming is really a compulsion that people with autism are being forced to do or a way of dealing with some external factor, why do mean parents like myself try to squash it?

The short answer is that the cause, effect, and context of the stimming very much matters.  Stims happen for a variety of reasons, have variety of effects, and both the cause and effect can change depending on the context of what is going on when the stim happens.  You can't make blanket statements about a stim being good, bad, or harmless without considering the whole picture.

Another reason to address stimming is to give the child the ability to recognize what is causing the need to stim, giving them the skill set to deal with the stim, and teaching them to better regulate themselves and their environment so that they can function better.

Though the overriding reason, to me at least, is to give the person the ability and option of controlling their behaviors rather having their behaviors control them.

Let talk a little bit about the cause, effect, and context of stimming and why it matters starting with some common causes of stimming.  Here is a short list of some common causes -
  1. Sensory overload or underload. One of the things about sensory processing in autism that is often overlooked is that the sensory imbalances goes both way - there are sensory avoidance issues as well as sensory seeking issues. A stim can be caused by a need for more sensory input as easily as it can be caused by too much input.

  2. An external factor that increases the person's level of stress, anxiety, fear, or some other mental state.  This reason is really about a failure of self-regulation - something else happens and the the person has no way to cope with the situation and resorts to stimming to relieve the pressure.

  3. An internal failure of self-regulation.  This is an internal failure to self regulate some aspect of a life and this failure leads to stimming.  A couple of examples would be not sleeping at night, not eating when hungry, or not stopping to rest when tired.

  4. Biological imbalances. People with autism can (and often do) have certain biological imbalances that can lead to the need for stimming. For example, pica or mouthing can be caused by iron deficiency.  

  5. A compulsion for the stimulation, i.e. a repetitive behavior.  Another way of looking at this is that the stim and resulting sensation is addictive - the person craves the sensation and doesn't feel right without it.
As you can see, there are many different and varying reasons for stimming.  The above list is far from complete but each of the causes on the list needs to be addressed differently.  You can't address a sensory issue the same way as you address anxiety nor can you address iron deficiency the same way as lack of sleep.

The point is to properly evaluate and address a stim you need to get some idea of why it is happening, what a person is avoiding, or what they are getting out of it.

Along those same lines, an increase in the number or types of stims can point to a some new problem or issue that needs to be addressed.  If you are dealing with a person who is either non- or minimally verbal then this change might be the only sign of the problem.  For example, my children are sensitive to noise so they have a "stim" where they hold their ears.  However, if they start holding their ears more than normal than it can be a sign that they have an ear infection.  Or it could be a sign that something else is stressing them out.

Lets move onto the effects of a stim.  Simply put, the effects of a stim are as varied as the forms of the stims themselves.  But, in general, you have to consider the following questions when evaluating whether a stim needs to be addressed -
  1. Does the behavior interfere with the person's ability to function or learn?
  2. Does the behavior interfere with another person's ability to function or learn?
  3. Does the behavior harm the person or does the behavior pose a safety risk?
  4. Does the behavior harm another person or does the behavior pose a safety risk?
The overall goal of addressing stims is to stop or redirect behaviors that stop a person from being able to function or learn.  For example, if you have a child at school who can't sit in a chair and has to constantly move about the room and scream, then they are not going to be able to function and learn at school.  If you put them in a mainstream classroom then their behaviors might stop the other children from learning as well.

The goal is also very much about stopping the child from endangering themselves or others.  Contrary to popular myth, flapping, spinning, and humming aren't the most common stims.  There are quite a few others and many of them can be downright problematic.

To give you an example, two of my daughters have a stim where they hit or push on their chins with the palm of their hands when they are either stressed or tired.  If they are "just" pushing on their chin it isn't the end of the world but it certainly isn't good for them.  However, it is a short step from just pushing to slamming their palm into their chin and that could cause some real damage.  As a result, we do not tolerate that particular stim and stop them every time we see them start it.

The last part of the equation is that the context of the stim can influence or change both the cause, effect, and acceptability of a particular stim.  Some stims are going to be perfectly fine in one situation but very problematic in others.  Take for example the common stim of flapping.  Flapping comes in many forms, from a simple hand movement all the way up to moving the entire arm rapidly.

Flapping is harmless, right?  Well, yes and no - it all depends on where you are and how you do it.

If the person is at home and relaxing them flapping is probably going to be harmless and shouldn't be stopped.  But what if they are standing close to someone and their flapping involves their entire arms?  What happens if the person is standing in a crowd of people and starts hitting people around them with their flapping arms?

Taking it one step further, when a person is flapping they usually are paying less attention to their surroundings.  So what happens if a person starts flapping while they are crossing a street or walking through a parking lot and stops paying attention to the cars going past?

Neither one of these is a contrived example - we have had both happen several times to the point where we have had to work on getting the kids' flapping under control - and flapping is a relatively harmless stim.  There are stims that are far worse and more impairing than flapping.

The final part of the puzzle is what you do about problematic stims and this is the major bit that self-advocates don't seem to get or understand.  Children with autism do not learn like typical children.  You can't necessarily just talk to them about what part of a stim is a problem or when it is or isn't appropriate like you could a "typical" child.

At best the child with autism might have trouble applying what you saying when faced with the urge to stim, at worst they won't have the functional communication to understand what you are trying to explain.  This is why many parents use one of the forms of behaviorism to help them teach their children.

Two of the core ideas with behaviorism is that you have to be consistent and that you start with small, manageable bits of behavior and work your way up.  You don't start with a problematic stim in the most stimulating and stressful environment, you instead start teaching them to control the stim in a more relaxed, less stress environment and work up to the harder environment.  And, if the child doesn't have the ability to understand that different locations have different rules, you have to consistently stop or redirect the stim every time that it appears.  Alternatively you establish one place were the stim is allowed and stop it everywhere else.

I've really just scratched the surface of the issues involved with stimming in autism but I hope the point is clear.  Stimming is not a one dimensional "the parents are just embarrassed" sort of issue and any discussion that just focuses on that is not a "great discussion" of this complex issue.

8 comments:

  1. From what I read long ago, those with brain damage stim... go figure.

    My views on it are this:

    The hand wringing has severely damaged 2 fingers and mildly damaged one figure on his left hand... blame it all on ABA but that's another story... Not good and I stop it when I can. With puberty has come hand biting and it's stopped immediately. When he does that he's lost control and needs help to regain it.

    Excited, laughing and flapping... I let it go for a moment or 2 and then hold his hands lightly in his lap or just in mine until he calms. I too don't like to be hit and he's nearly as tall as I am.

    Floor humping... not appropriate and he gets told to sit properly and does.

    Vocal noises (noise/sounds, to chatting, to singing)... as long as they are "inside voice" I let it go. When it rises and he's obviously overwhelmed I go and get him to sit and calm.

    Am I embarrassed... no. But behaviour has to be "appropriate" in place and time and should not harm him or someone else.

    When he stims in a quiet manner - the singing - he is usually working, drawing, playing etc something and I know he's thinking and I leave him alone. For some reason, it calms his thoughts and he does amazing graphics on his DSi, slide shows, video's on the iPad, plays with his toys, does his school and homeschool easier etc Any other and he can't think and function... so the excessive stims need to be controlled so he can think.

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  2. Oops had a thought... what I meant with the brain damaged is that I am certain there are some significant breaks in the wiring in my kid's head that control expressive language and I'd love an MRI. Right now I'm at nearly 3 mths and counting for an EEG... gotta love public health care... I may never get the MRI... seriously, they may refuse to do it.

    I know, it's broken and that's what brain damage is... so I wasn't surprised when I read the article. I have it saved somewhere....

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  3. A very thoughtful post. Probably the most comprehensive and balanced approach to stimming that I have ever read (despite you admitting to not being able to cover all of the numerous and interrelated factors at play in stimming). Thank you for writing this.

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  4. Thank you for this. It is so well written. I am very tired of the Neuro crowd and the complete idiotic parents in denial claiming that stimming and being autistic is just another way of "being." Give me a f'ing break! When will these people accept the fact that this is actual brain damage and we have to help these children from a biological and behavioral standpoint. Individuals like Ari N and mothers such as Jean W from Stimeyland and Jessica Wilson of Diary of a Mom are complete and utter assholes. Stimeyland adds to the nonsense by claiming she is now autistic, diagnosed somewhere in her 30's or 40's. These people seem to think autism is wonderful. Clearly they are not dealing with severe autism and are simply annoying mouth pieces who confuse the situation even more.

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  5. Thought out and well written - thanks for getting the word out. Bonus points for "a lack of understanding of what others are thinking or experiencing is a large part of the disorder that they are struggling with." Although I must point out they are not, apparently, struggling with any impairment from the disorder itself, rather they are struggling with the social construct of the disorder.

    I hold the APA, and their ill-considered DSM revisions, responsible for this muddle, and hope they correct things asap - the "diversity" folks have good points, but they do not apply to everyone with ASD. I'm also really tired of the latest iteration of "blame the mom" - "my cousin used the bat guano intervention and her kid just entered Harvard" or "I just read a study..." followed with "you need to try [fill in the blank] and your son will stop [fill in the blank]." Feh.

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  6. My word, I was raised by parents like you. I'm autistic let me tell you something. It ruined me. I felt unloved, uncared for. No matter how much my mother tells me otherwise. When you force an autistic kid to do something forcefully you become a bully to your own child. As my own parents did to me. It stopped my stimming sure. For a period at least, but I still stim without realising it until others point it out. If it's not harmful to us or anyone else leave it be will you. You could create a self loathing child ! Not sure if you ever thought of it that way. Autism runs in my family. My Nephew is the same as myself. Let me tell you the only person who can calm him down without force is myself. Try and see things through our eyes before trying to control us.

    You are quite right there is reasons for our behaviours, when you force us to stop it creates more of an overload. When my mother would force me to stop, I could not handle what I was already handling my way!

    Instead of holding you child, step back to avoid being hit. And try and provide the soothing or what ever other distraction you can for your child. Instead.

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    1. So, Anonymous, did you you actually read the post or just did you just stop by to recite tired myths about autism? You clearly missed that I was not recommending stopping stimming just for the sake of stopping stimming.

      I'm guessing from what you wrote that you have some mommy and daddy issues that you need to deal with and that's the real problem here. Now, this is just a suggestion, but if your parents tell you that they love you then you should take that at face value. You may think that is is all about what you went through but I can tell you from first hand experience that it isn't easy being the parent either.

      Parents, such as myself, spend more time than you can possibly imagine trying to understand how the world looks through our children's eyes. We literally spend years upon years upon years trying to work out what is going on in our children's world.

      So maybe instead of shouting at the world that it is all about what you think and feel about autism how about taking a step back and recognizing that it's not all about what you think. Having autism does not make you an expert on autism.

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  7. Im sorry but that last statement is wrong. Maybe , you should listen to people with Autism instead of taken offence. They are the experts because they have it and that is a fact you cant argue with. Its up to a parent to decide whay best for their child and I however happen to disagree but I look at things from a different perspective maybe. How ever, I would always take intp account the advice from some one who has Autism as they are the closest to my child than any parent, scientist etc. Pippa

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