Today is World Autism Awareness Day (a.k.a. World Autism Day, as some prefer not to use the term ‘awareness’), this week is Autism Awareness Week, and April is Autism Awareness Month. However, as our son Penguin is autistic, we’re just as aware on all the other days, weeks and months of the year, and I try to spread understanding about autism to others in small parcels throughout the year.
These last few days, I’ve seen a lot of posts on social media asking something like ‘What is ONE thing you would like others to understand about being autistic?’. I find it very hard to pick just one thing, but I’ve been mulling this over, and right now there are three of Penguin’s autistic traits that stand out for me as ones which it would be great if people were more familiar with!
Of course, autistic traits vary a lot between individuals, and what I’m writing below is based mainly on how things are for our boy. But I’m sure many autistic individuals as well as families and friends of theirs can recognise and relate to much of this. And I would love to hear from you in the comments, both if you can relate or if your experience is different to ours!
So, here goes:
No. 1: Verbal Stimming
Our son is nonverbal, meaning he has pretty much no spoken language at all. That doesn’t mean he’s quiet though! He makes a lot of humming, squealing, screeching, howling, laughing, growling, shouting and kind of babbling sounds. I see other autistic children (and adults) wearing noice-cancelling headphones, but in our household it is ME who sometimes wishes for a pair of those, not our autistic boy! I do love hearing his voice, but at times it can drive me bonkers, lol.
Stimming means to stimulate a sense by some kind of repetitive action or behaviour. It can occur in many different forms, and it can have several functions. Hand-flapping is one of the most commonly mentioned types of autistic stimming, probably because it’s one that is very noticeable. But things like chewing, tapping, fidgeting, humming, hair-twiddling, jumping, spinning etc can also be forms of stimming. To stimulate a chosen sense in these ways can help reduce stress, either by causing a release of endorphins, or by helping the person to block out other sensory stimuli which would otherwise cause them overwhelm and distress.
I think we can all relate in some way to the effects of verbal stimming, for example if we think about how turning a favourite song up loud and singing along can help us relax, forget stresses, and refocus ourselves. Basically, stimming helps the autistic person feel better, cope better with stress and anxiety, and so on. So to stop it is generally not a good idea. I do tell Penguin to quiet down sometimes, especially at night as his squeals can go through walls and windows, and we have neighbours who need to sleep. Putting some of his preferred music on can be one way of helping, and he often has a device of some kind at hand to provide him with added visual and auditory stimulation.
No. 2: Pacing
This is another form of stimming! And at the moment, our Penguin is doing A LOT of this. Especially late in the evenings… He walks up and down the stairs for no obvious reasons, and he currently loves to pace about on the upstairs landing, into the bathroom, back across the landing into the bedroom, and then back and forth like that again and again.
Pacing provides him with proprioceptive input (which I’ve written a little bit more about previously as part of a post on sensory processing, please click HERE to read), which in turn has a balancing effect on the body, and again helps reduce stress as endorphins are released etc. The harder he stomps, the more sensory input he gets, so there’s currently often a ‘thump, thump, thump, thump…’ sound going on here, in addition to the verbal stimming. Still, as it helps our boy relax, we try to allow it as much as possible (again it’s only really an issue at night, as I suspect our closest neighbour might hear it and we don’t want to disturb him if we can avoid it).
In Penguin’s case, this need for movement also seems to have a connection to his gut function. I know this can be the case, and that sitting still a lot can certainly increase risks of getting constipated etc. So not only does the pacing help with stress levels, it also seems to help avoid the pain of trapped wind or blockages, which Penguin had more issues with when he was younger. Gut issues are also a fairly common problem for many who are autistic.
An alternative to pacing can be jumping, for which a trampoline can serve a great purpose. Penguin used to love his trampoline and would spend hours on it, until about a year or so ago, when he gradually lost interest in it. I’ve tried to encourage him back on the trampoline as he still seems to crave the kind of sensory input he’d get from it, but he’s not keen at all. So pacing it is, for now.
No. 3: Pain Response
I think you might be detecting a common denominator now, in the three traits I’m listing in this post. They are all to do with sensory processing, in one way or another. And indeed I would say that understanding the differences in how sensory input is processed by the autistic person’s body and brain is central to understanding autism.
This third trait I’d like you to know about is to do with how an autistic person may experience pain differently, respond to it differently, and/or express it differently.
For our boy, there is a big difference in his pain response depending on if it’s internal or external. For example, if he falls over and grazes his knee, or accidentally stubs his toe, bangs his elbow etc, he will come to us showing where he hurt himself, usually saying ‘ooh-ho, ooh-ho’ to let us know of his pain. He will also make it clear that he’d like us to blow on it and kiss it better.
However, when he has an internal pain, like a headache or stomach pain, or when he’s hurt himself more seriously (like getting a finger trapped or burning himself on something), it’s much more complicated. It seems like the pain is then more overwhelming and much harder to locate. It’s like a ‘I’m in great pain!!’, without being able to define the source of pain or what would be helpful to do to make it better.
In that kind of situation, he is likely to start hurting himself, which isn’t a totally unreasonable response as a sharp controlled pain can distract from the original pain, but of course self-harm isn’t a good thing. He might also start hurting me (or someone else close to him) as a way of communicating: ‘Feel my pain! Help!’ That isn’t too helpful either, but if it happens to you, try not to take it as an attack on you personally, but as the desperate attempt of communication it usually is.
I would like to point out that these difficulties around communicating about his pain isn’t all about him being nonverbal. Even if he did have words (or was more fluent in using alternative forms of communication), he would most likely not be able to describe his pain in these situations. This is to do with interoception, the sensory system for processing our body’s internal signals (such as hunger, thirst, sleepiness, toileting needs etc, and pain). Without a clear external clue (such as a grazed knee etc) to what is causing him pain, it often seems to be very difficult for him to interpret his body’s signals in more detail.
These issues of interoception can also show themselves in a different way, relating to pain response, which is really important to be aware of if you care for someone autistic, either in a professional role or privately, as a parent etc: Sometimes an autistic person will not respond to pain even when there is a serious injury or other major medical cause for pain! We haven’t had any too serious issues with this ourselves yet, but I have heard from others about doctors missing things like a spinal fracture or an inflamed appendix due to the autistic patient not displaying pain in the ways that would normally be expected. Their sensory processing differences can mean that the signal which was supposed to tell the brain about pain never got through, when the doctor put pressure in a certain place to check for a response. Or the signal might have got through, but jumbled, so the pain experienced wasn’t as bad as it should have been. It could also happen that the person feels the pain clearly, but doesn’t display a ‘normal’ reaction to that level of pain, and they may also get overwhelmed and go into a state of shutdown, which will look as if they’re ‘zoning out’, or getting extremely tired and possibly even falling asleep.
In our Penguin’s case, he had dental issues that went unnoticed for quite a while when he was younger, as he didn’t seem to have the toothaches which the dentist told us he ‘should have had’. Not many things make you feel more like a terrible parent than realising that your child was probably suffering and you didn’t notice…
There isn’t a great deal of research available on the subject of pain response related to autism yet, but here’s one article which discusses a small, unpublished study, and also includes a couple of links for further reading: https://www.spectrumnews.org/news/in-autism-brain-responses-to-pain-dont-match-verbal-ones/
There we are, that’s my three things which I hope you now have a greater knowledge about, and which I think Penguin (and others) will be thankful for you being more understanding of, if you encounter this in anyone you meet. Thank you for taking your time to read!
Take care and stay safe x
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