Hello again colleagues, team mates, friends, and fellow autistics. My apologies for the lateness of July’s blog post. I moved across Japan from Misawa, located way up on the top of Japan, down to Atsugi, which is right outside of Tokyo – closer to the lower part of the country, and though it has been exciting, it has kept me very busy as well.

1.This month’s post focuses on stimming, but before we get started, I’d like to speak on two things:1.I’d like to mention that a  lot of my professional followers have asked me “If not ABA, then what?”, and  I am currently working on therapy models outside of ABA or other ‘replacement name brand therapies for ABA’; however, collecting the data on that project is an enormous undertaking that needs a bit more time and care. I will let every one know how that is progressing as it…well…progresses.

2. What exactly constitutes “Evidenced Based”? Many of my professional followers state, not incorrectly, that we need to be very diligent that every topic we discuss professionally firmly adheres to this standard. I try to be diligent in providing at least one, if not more, published, peer-reviewed articles with an explanation about it and a link to a site where the article can be accessed freely, or to a PDF copy, so that my readers can evaluate the evidence I am using to come to some of the conclusions I arrive at.  However, a scientific review of the evidence on all aspects of the topic is not enough; achieving true knowledge of a subject takes much more than that.

The American Speech-Language-Hearing Association has published very clear guidance on what Evidence-Based Practice (EBP) entails.

“The goal of EBP is the integration of: (a) clinical expertise/expert opinion, (b) external scientific evidence, and (c) client/patient/caregiver perspectives to provide high-quality services reflecting the interests, values, needs, and choices of the individuals we serve. Conceptually, the trilateral principles forming the bases for EBP can be represented through a simple figure:”

In the triangle of effective EBP  one must use ones clinical expertise based in ones education and experience in the field to frame an appropriate clinical question and find, and evaluate, external scientific evidence for diagnoses one gives, the therapies one uses and/or in describing the deficits or advantages of the given diagnosis. Those two things, the research and the experience, combined create the top two sides of the triangle. But one must also consider one’s base, the foundation of the whole model; namely, the individuals who receive the diagnoses, descriptors, and/or therapies. Because we, as professionals, are here to support those individuals, their families, and their caregivers. If those individuals receiving the diagnoses, descriptors of their dis/ability, and treatment do not feel like they are being helped, spoken of with respect, or described correctly; then, one might ask…what was it all for?

One can:

Read more about EBP here 

Find webinars regarding EBP here 

and Find practice tutorials and resources here 

Stimming:

There are two schools of though on what stimming is.

One view takes the perspective that stimming is an ‘inappropriate’ behavior that makes autistic people obviously distinguishable from their peers, is based in pleasure seeking or work avoidance, and is problematic in nature. Therapies include gently touching or holding down hands with an added verbal cue like “quiet hands”, removing the object, or generally disallowing the stem. There are usually reward systems in place for when the autistic individual is able to refrain from the inappropriate and obvious behavior. 

If one is interested in this perspective, the article “How to effectively stop self-stim behavior using reactive procedure”  covers it.

The other view, and the one I would like everyone to at least consider here, is that stimming is a tool for self-regulation and self-calming. As such, it may well be an outgrowth of the sensory processing dysfunction that often goes along with autism.

People with autism say that they stim to help themselves to manage anxiety, fear, anger, excitement, anticipation, and/or other strong emotions. That they stim to help themselves handle overwhelming sensory input (too much noise, light, heat, etc.) Some people say they stim in order to increase concentration, stop mental perseveration on unwanted, intrusive, or negative thoughts. Some people say they stim in order to reduce physical pain. Some people say they stim for entertainment,  because it’s cheap and always available. Some say they stim for self expression, to connect with others, themselves, or their environment.

In general, the people who do the behaviors called ‘stims’ say that others define these behaviors as “stims” when they go beyond what is culturally tolerated. In other words, a “stim” is a behavior that is culturally unacceptable.

While it is not considered unacceptable in the United States to bite one’s nails or twirl one’s hair, for example, it is considered unacceptable to flap one’s hands, wander about, or make unexpected vocal noises. 

I like to crochet….a lot, for example. When people are unaware that I fall on the spectrum they call it a hobby and compliment me on my skills. After they learn I am autistic, some people ask me if crochet is my ‘special interest’ and sometimes (true story, readers) ask me how I keep from becoming ‘too focused’.

This article Understanding Stimming in Autismand this one “Seven questions about stimming”  describe this perspective nicely. Please, do take the time to read them.

I would be remiss if I did not mention that there are some self-harming and potentially dangerous stimming activities such as head banging, repetitively hitting one’s self; and also some potentially frightening stims, such as loud, sudden vocalizations. The web site Spirit of Autism has a fantastic post that explains 5 possible reasons for dangerous stims. even though they use blue puzzle pieces. 

1.Chemical Messengers: “There is a suggested relationship between the levels of neurotransmitters and self-injurious behavior, in that self-injury may increase the production and release of endorphins in the brain. As a result, a person experiences an anesthesia-like effect, allowing them to no longer feel pain while engaging in the behavior. The release of endorphins also may provide the individual with a euphoric-like feeling.”

2.Seizures “Approximately 1/3 of people with autism have an accompanying seizure disorder. Self-injurious behavior has also been associated with seizure activity in the frontal and temporal lobes, exhibiting behaviors such as head banging, slapping the ears, hand biting, and scratching the face or arms. It is critical to realize seizure-related self-injurious behavior is involuntary and may require restraint. Seizures may typically begin when an autistic child reaches puberty.”

3.Pain: “Another reason for this behavior is simply to reduce pain. There is growing evidence that pain associated with gastrointestinal problems and inner ear infections may be associated with self-injury. The behavior may dampen the pain, but also may “gate” it to another area of the body, serving as a distraction.”

4.Sensory Issues: “Self-injury can be a defense against an overwhelming sensory environment. Just being in a public place can be physically painful for someone with sensory processing issues, as their senses are often magnified and they struggle with the filtering of background noise. They may hear everything – times 10 – in their face at all times. And that’s just ONE of the senses – add to that sensitivity to lights, smells and more.  Excessive scratching or biting may be an extreme form of stimming, which helps “reset” the nervous system. An under-active nervous system SEEKS input, so some self-injurious behavior is an attempt to placate their body’s need for sensory stimulation.”

5.Frustration: “This behavior can also be a result of sheer frustration. An autistic person that struggles with communication skills becomes frustrated because of their lack of understanding of what was said (poor receptive communication) or because the parent or caretaker does not understand a need they have attempted to communicate. Imagine repeatedly not being able to effectively express your needs to the people responsible for meeting them.”

Let’s take a moment to imagine just that. You are driving a pre-teen girls volley-ball team to their nationals game out of state. They are bonding in the back (O.M.G! I can’t even, squee!) They have on their favorite music video on the screen in the back. You have on NPR or 80’s metal, or Rick Astley’s greatest hits to maintain your calm. You have made this trip to a city larger than yours just once, but that’s ok because your GPS is guiding you. You also bought that super large, sweet iced tea at the last stop because it is hot as all get out. But it’s ok, you got this.

Now, imagine Siri (or Alexa) tells you to exit in the middle of a huge interchange; but you can’t because the exit is under construction.

Now, because non-autistic people don’t always understand what is meant by ‘sensory issues,’ I’m going to tell you that you cannot ask the girls to be quiet, you cannot turn off any of the media you have on, nor can you put the visor down to stop the sun from shining right in your eyes. How you doing?

Now, Siri says to make a U-turn…on the highway… as your phone dies.

Now, lets say you notice you really, really, really badly regret having finished that extra large tea and the pressure on your bladder is increasing. Can you still maintain?

Now, let’s say your co-pilot, someone you know and trust, notices you start biting your nails and squirm in your seat. They notice you becoming visibly upset (and rightly so), but instead of helping you, they begin to comment on these behaviors.

“Sarah, you spent a lot of money getting those nails done. Put your hands down.” and without a moment’s delay, “Sarah if you wiggle in your seat like that you might get us all noticed by the police and then they might pull us over and we will be later than we already are… hands down, quiet hands, sit still. Still bodies get extra treats at nationals games Sarah, don’t you want to earn an extra treat?”

Now, come back to the here and now. Are you ok? Breathe, it’s just a visualization. We can turn it off. Take a second if you need one. The rest of this article is much calmer, I promise.

To an autistic person, stimming is a necessary function. Stimming that becomes self-injurious is most typically rooted in pain. As a parent, instead of stopping the behavior, you can sometimes provide safety and cushioning. Safety is an issue and the behavior must be controlled; but, being aware of the multiple reasons for a behavior (as opposed to perceived non-compliance) allows us to look for a physical or medical cause and address that first and foremost, which contributes to the safety of everyone involved.

The question I hear many autistic individuals ask is why would you change the child who needs to stim in order to make their peers stop teasing him? Why not educate the peers and support the child?

I am encouraged to find that there are an increasing number of resources that support letting a person who needs to stim do so, even some ABA supporters such as Dr. Mary Barber are beginning to say that the only time you need to intervene is for ‘dangerous behaviors’. Though I continue to advocate against ABA, I at least can appreciate that there is a movement way from stopping stimming by some.

I am also encouraged to find a growing area of research that implies that Behavior therapies are not all that they are proclaiming to be such as this published peer reviewed articleEvidence-Based Behavioral Interventions for Repetitive Behaviors in Autism”  which states that, at best, behavioral interventions are only somewhat effective with some stimming behaviors.

But the best thing you can do for your autistic child, or adult friend, is LET THEM STIM. If they are happy, don’t fight their happy dance or the joyful flapping. Walk, rock, or explore the world with them while you talk, it helps them process your words. If they are frustrated, help them achieve a more limited sensory context.  If that isn’t as helpful as you’d like, with their permission if you’re working with your adult friends, seek medical assistance to rule out pain, with doctors who are not dismissive. And if you see you friends or child visibly upset, give them a break and don’t insist they do your thing right now. 

Think back to your road trip: a rest stop with a bathroom, the ability to ask people to be quiet for a moment – those things would have been life savers.  Find ways to provide them. You also can’t tell me you wouldn’t, at least once, have told your co-pilot that their opinions about nail biting and seat squirming could stay inside their mouth. This is a moment where you can see that, in some situations, noncompliance (telling off the unhelpful in the moment friend) can be a social skill that helps keep an autistic person safe.

Sarah of Agony Autie has a few great videos on stimming:

My Autistic Stims

Sensory overload and why stim dancing helps

If you are interested in more neurodiverse, stimming positive movements:

Stim Your Heart Out by Prue Stevens is set of concepts and beliefs that aim to advocate an understanding of the benefits of the autistic culture of ‘stimming’ and establish it in mainstream society. 

The Loud Hands Project is a structured, multifaceted response by the autistic community to the systematic disenfranchisement, bullying, and abuse experienced by autistic youth, young adults, and self advocates. Taking the form of a publishing effort by the Autistic Self Advocacy Network, spearheaded by Julia Bascom, The Loud Hands Project consists of multiple prongs organized around the theme of what the autistic community refers to as “having loud hands”—autism acceptance, neurodiversity, autistic pride, community, culture, disability rights, resistance, and resilience.  We focus on cultivating resilience among autistic youth and empowering ourselves in building communities and cultures of ability, resistance, and worth. 

And my favorite online shop for a variety of stim toy needs, Stimtastic

Until next month tribe!