Many autistics chew or suck things constantly, and some of these things aren’t very good for us. Many of us also won’t wear hats, headbands, earmuffs, or anything else that sits too tightly around our heads. There are some reasons for this.
When we’re autistic, we tend to have neither a good gut-blood barrier (so the gut leaks all kinds of nasties into the bloodstream), nor a good blood-brain barrier (so the nasties from the gut and blood are getting into the brain). Toxins which make their way into our bloodstream, whether from the airways, the gut, or the skin, therefore get into autistic brains much more easily. Because many of the worst toxins are fat soluble, and the brain is the largest accumulation of fat in most bodies, these toxins then lodge both in the brain tissues, and in the membranes surrounding, and intended to cushion the brain.
These toxins then cause brain inflammation, which is really, really unpleasant. All through my life, I have had what I call a perma-headache. This headache never entirely goes away; it’s sore, it’s aggravated, and it’s hot. It’s also as though there are cicadas constantly going in the background in my ears. Sometimes the discomfort or pain gets really bad. The pain moves up and down on the discomfort scale, but it never entirely goes away. This perma-headache is a constant in my life, and in the lives of many other autistics.
When that headache gets worse, chewing and sucking do something really magical. Imagine having shoes that are five sizes too small, or that gradually shrink on your feet. You wouldn’t keep those shoes on for very long, would you? If your skull feels like it’s too small for your head, you can’t take your skull off the way you would a pair of shoes. When we chew and suck, this gently tugs on the tissues the muscles in the jaw and tongue attach to, and some of those are membranes inside the skull. Every time you bite down and use your tongue, you’re gently pulling on those membranes inside the skull, and you’re slightly easing off the pain of the headache. So chewing, biting, and sucking are very helpful coping mechanisms.
Now, when you’re experiencing that kind of compression on the inside of the skull, the sutures of the skull, or the places where the skull plates link up, can ache a lot, too. Anything which puts any pressure, even very light, on the outside of the head can aggravate the pressure inside the head, terribly. I’ll often notice babies and toddlers taking clips, elastics, headbands, and hats off just as soon as their parents put them on, and wonder how much brain inflammation they’re experiencing.
If you see this kind of behaviour in someone, you know that brain inflammation is an issue for them, and can take action to bring down inflammation in the body overall. While my headaches have backed down a lot as I improve the underlying health challenges which cause the symptoms of autism, there are still many days when I cannot wear a hat because the compression is too uncomfortable.
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Congratulations, Jackie! This is wonderful stuff! I love listening to you share the things a lot of folks cannot share. You make sense of the mysteries we caregivers and family members are trying to figure out.
It is hard to help someone when you don’t have the tools, like a surgeon who shows up without even the basic equipment for the job. Hurrah for your perserverence and drive to get all this stuff organized and made clear for us. I will share this site with everyone I can think of today so they can sign up too!
Bless you, Jackie!
By the way, people are still talking about you, here in Peterborough, from your visit up here last October, for our Challenging Autism event.
We have just formed a small, local parent/careprovider support group in affiliation with Autism Ontario.
I hope to get your course sent to those parents in time, although I do not have access to some of the people who came out to our first gathering last Monday.
I will be listening on Monday, Jackie!
Barb Cahais Kuipery
Thanks so much, Barb — I think of you and Anita often, and send hopeful thoughts that you’ve been able to sustain your organizing efforts. I’m so grateful for the work you’ve taken on in the Peterborough area.
Hi Jackie, I am a healthcare worker (PSW) working in developmental services in Guelph, Ontario. I have enjoyed your e-mails and find them helpful. However due to my work schedule I am unable to attend any programmes on a regular basis. I am about to start a new contract working with 2 autistic adult gentlemen and I have had a difficult time finding a school course of any kind in my area that I could attend in whole. I am really interested in your 6 week course but again cannot attend all 6. Will you at any time have this course available on DVD to purchase. I also have other team members that would greatly benefit from more education on autism as well as a daughter who wants to work with autistic children (she has a real gift with them to date). If you have other DVD’s I would be greatly interested. Again, I have enjoyed your presentations on e-mail. Keep up the fantastic work. You are an amazing lady!
sincerely, Deb M
Thanks so much for reaching out. I’m almost done turning both of my six-module programs into home-study options, with access to me for questions through a private Facebook group (the comments and questions won’t show up on any participants newsfeeds for others to see). This would allow you to go at your own pace, and fit the studies in at the times which work for you. These next two weeks in December, I have some help lined up to get that done.
I really appreciate your letting me know that my efforts are helping,