Sensory Brushing: My Experiences as an Autistic Adult

After I read this book about sensory defensiveness I became very curious about sensory brushing, but it was hard to find much information about what it actually was, what it felt like and whether it would be a good fit for my personal sensory issues. I also wanted to know whether research confirmed its efficacy, since the author swore by it and said it truly changed her life. Many occupational therapy techniques do not have a strong backing with research, and sensory brushing is no exception to that. That said, many clinicians still like using the technique. Occupational Therapists (OTs) are pragmatists and problem solvers and if something works for some of their patients, they will continue to try it. However, I would be a bit hesitant to trust an OT that raves about sensory brushes, overstates its benefits or doesn’t see the downsides.

First off, let me say that sensory brushes are extremely cheap and easy to acquire. I would not recommend trying them without guidance from an OT or other trained professional. When I bought mine I saw reviews from parents who had “identified” their kids as having autism or sensory processing disorders and were just rubbing them on their kids. I can’t speak to the circumstances or health histories of these children, but the reviewers would say they just rubbed them on random parts of their children’s bodies during a meltdown and they instantly calmed down. While it’s not impossible, randomly rubbing a sensory brush would be very unlikely to actually calm down an autistic or sensory-defensive child. I’m sure there are kids where if you introduced it correctly they could grow to use it that way. But I think more likely some people may be getting some benefits using them strangely as a placebo.

But trust me when I say there is a dark side to sensory brushing that is truly distressing in a way an autistic child might not be able to communicate. I don’t intend to scare anyone away from sensory brushing, but it should be taken seriously and watched for if you intend to add it to your own or your child’s sensory diet. I have an exfoliating brush I used to use that would cause physical illness later in the day if I brushed too hard, even though it felt good when I was brushing, as it would disrupt my system so much. A sensory brush is softer but can still disrupt your system if you apply pressure incorrectly. After several weeks of use in OT, the first week I was doing it myself at home (as an intelligent adult) I was holding the brush the wrong way and it made all the parts of my body feel much more sensitive and I was on edge emotionally. Basically the brushing felt ok with too much pressure, but the rebound sensation was awful, and much worse than if I hadn’t brushed at all those days. Some OTs don’t use it because of the possible downsides, when other options are much more harmless.

So why do I do it? For me, sensory brushing is used to help lessen my startle response and discomfort when my neck is lightly touched. At its worse it is bad enough I might push my child out of my lap and yelp if their hair brushes against my neck during story time, but most of the time I can suppress that (but suppressing it still leads to pain and anxiety and an increased likelihood I might meltdown later). I look at sensory brushing as a sort of controlled exposure therapy and when I do it for myself I focus on staying mindful and present in the midst of unpleasant sensations.

Others use sensory brushing to manage behavior or increase overall sensory input for calming. A lot of the research focuses on the behavioral management.

So what is the process like? How does it feel? Remember, I am only speaking for myself and my own experience. We do ten strokes in a specific direction on specific parts of my body. When the pressure is right (for me) the first few strokes will feel a bit bad, like a very annoying light tickle or kind of a vibrating pain (like how getting a haircut with clippers might hurt on a sensitive day), but the bad feeling lessens as we get to ten. We take breaks when it is too much and if negative sensations are increasing too much. We have not gotten to the point where we actually brush the area that is sensitive, the therapist plans where the strokes go based on which nerves would feed to that area. He talks about “waking up the nerves” which honestly sounds like woo to my very analytical brain, but I also recognize that for most medical or therapeutic practices the actual mechanism for why it works or doesn’t work isn’t really understood. (For example, scientists don’t really understand why anti-depressants work, but they clearly do for some people.)

The book I mentioned earlier is very enthusiastic about the The Wilbarger Protocol. I don’t know a lot of the specifics in terms of direction of brushing and how it differs from the way my OT uses the sensory brush, but the Wilbarger Protocol requires brushing at a minimum every two hours. Personally, I’m pretty skeptical of its effectiveness. It seems likely taking a break every two hours to do anything would help with emotional regulation. A lot of adults take a break every two hours to smoke and if they quit. I’ve known people to quit smoking and just keep vaping without the nicotine so they continue to have that break. I am sure there exist people who sensory brushing every two hours is the best way for them to stay emotionally regulated, but I’d say for most people they’d be better off just wrapping up in a weighted blanket and zoning out (or meditating).

Sensory brushing is said to help because of Deep Pressure Touch. There are other ways to get this. Weighted blankets, scarves, wraps, stuffed animals, etc. are a better at home option, in my opinion, if you can’t get into OT. While weighted objects don’t always help, I think it’s easier as an adult (or child) to be able to quickly tell it’s not helping and push it off. The impacts of sensory brushing, in my own experience, tend to be on a delay. Which is why just incorporating it into your day randomly could be detrimental. I find weighted blankets to be overstimulating unless I’m fully melting down and certainly can’t sleep with one, but I love my lap pad and my weighted scarf. They have helped me tremendously with driving, which can be an overwhelming experience for me.

This is the brush I use.

“As We See It” Review

As We See It on Amazon Prime is a show featuring three autistic adults who live together with assistance from an aide. All of them are in their mid twenties with different family situations. There’s Jack, who is referred to as having Asperger’s and views himself as much more capable compared to his roommates, Violet, an Asian woman who struggles with emotional outbursts and desperately wants to fit in, and Harrison, who struggles even leaving the apartment due to anxiety and sensory over-stimulation. I have given that small re-cap, but really this will make more sense if you’ve already seen the show.

I adored all of these characters and saw bits of myself in each of them, especially comparing them to me-ten-years-ago. Or seeing myself in meltdown through them. There were a few moments that really stuck out for me.

For both Jack and Violet there are moments where they think they are fitting in well with the world and then someone will say something that makes them realize they are viewed as separate and different (and less). I remember a party in college where a boy from another school was in town and he kissed me and one by one people came up to whisper in his ear that I wasn’t a normal girl and not to take advantage of me. I hadn’t realized that people felt that way at all, though I had noticed boys were always very respectful and protective of me. So, I feel it when everyone tries to keep Violet from living the life she wants. I also wish I had more of those (overly) protective people in my life earlier, because my version of Julian came when I was much younger.

Jack’s general out loud monologue is not unlike my own inner one. A lot of my friends have been like Jack and his personality traits are not unlike people in my family. The way he goes down a hole researching when his father is diagnosed or his quick desire to be close to Ewatomi forever… all of it makes a lot of sense to me and I found him a very relatable and realistic character.

I liked him, although seeing him and his dad together was very frustrating for me. His dad’s conversation with his aunt especially illustrated how permissive he had been. I imagine it is not easy to be the parent of an autistic child, but shrugging off that your niece and nephew are getting bruises and having hair pulled out in your home is not ok. I’ve been on both sides of age-inappropriate aggression. It’s very confusing when the adults in charge don’t make a clear statement that it is wrong. As a kid, I would have loved someone to speak up for me. As a young adult hitting and biting when I felt overwhelmed, once I knew for certain it was wrong to behave that way I was able to begin learning to stop.

My biggest criticism for the show is that Mandy felt unrealistic to me. And also annoying. The way Joel and she spoke of her dreams of working in autism research never flowed well. But also a caregiver that cares that much as a part time worker is just not realistic. Her relationship with the autistic people in her care is off-putting to me, where she also crosses professional lines. Being a few years younger than them may be part of the problem. Maybe it is realistic that someone in her position would struggle to remain professional, but we rarely see the fallout from her lapses. Of course a few of those lapses are major plot points, but the ones that aren’t are treated as positives. It also doesn’t fully make sense that she is a part time worker when it feels like she is there all times of day. And of course no one would give up a dream job to do that kind of work.

Really many of the family members and their attitudes seemed partially responsible for the lack of independence. It felt like a lesson in the effects of learned helplessness. I felt like Ewatomi and Harrison’s sister were the only ones in the entire show that understood how to get through to autistic people. Ewatomi was clear, concise and calm. She drew clear boundaries and was understanding when Jack would miss parts of what she was saying. Harrison’s sister was kind but straightforward. Gave him space and time to process something difficult and pulled him out of a crowd for the conversation. Everyone else felt so obsessed with feelings and empathy, but not practicality. I often found their communication styles to be stressful and confusing.

Like Jack’s dad is often mildly annoyed by his son but just will have a small sarcastic aside or something that doesn’t even register for Jack. Jack loves his dad. Even though he will probably always be a little bit of a dick, if he had ground rules that were provided in a straightforward way, I really do think he would attempt to follow them. But I’ll admit that I do project a bit onto their dynamic because it is similar to my own family.

I felt for Van because he was so young to be trying to figure out an entire life for his sister. Honestly, I think he was right to suggest a residential home, given that Violet was leaning so heavily on Mandy and him. I think it’s possible some separation and more structure could have motivated her to gain the necessary skills for independence. For Jack, he could absolutely figure things out, but he needed to learn those skills earlier and have his dad draw a firm boundary. I read a post recently from Autism Discussion Page about how most autistic people can learn to live independently but that they may need to begin learning life skills much earlier since it may take them longer to fully absorb the skill. I do believe a lot of autistic people tend to be dependent when they can be, I know it is true for me. And it won’t necessarily come like common sense to separate from the caregiver. It needs to be stated clearly that it will happen with small steps leading up to it.

Harrison’s parents especially drove me crazy. Trying to hide moving out of state to him was so frustrating. And it really felt like they were the sort to expect their money to fill the gaps when Harrison really needed less coddling and more straight forward life lessons. Honestly watching Mandy empathize with them about how hard it is to say, “No,” to Harrison was excruciating. Yes, of course it’s hard to say, “No,” to your kid if you haven’t done it in 25 years! For a non-autistic kid that might make him a little bit entitled, but otherwise functional, but for Harrison it set him up to be terrified of struggling in any way.

Osmophobia and The Feelings We Inherit

Since my autism diagnosis several years back, I have seen so much vague talk of “sensory issues,” both from autistic folks and everyone else. I think a lot of folks after a few years of varying degrees of isolation are feeling “sensory issues,” maybe pin-pointing the cause of anxiety to these issues for the first time while all of the feelings are so magnified.

Well, I have to say it’s a bit exhausting for me to hear people newly discovering sensory issues. As long as I’ve been journaling, I’ve been journaling about “sensory issues,” though usually using different language, as it wasn’t something I was ever told about. My favorite way I described it was “input.” I had an elaborate theory on how to hold balance in life and it was all about making the right amount of space in my life for Input (sensory experiences), Output (creative projects) and Processing (resting). Of course the end of that story is that I did not maintain balance well and was put on anti-psychotics for several years, which blunted all input, some output, and had me sleeping 10-12 hours a night. If I seem at times a bit apprehensive of my current diagnoses, it’s because I’ve had so many different labels and frameworks from many different professionals. So when I discuss my own “sensory issues” I will use my own framework.

After my autism diagnosis and entering many online spaces for autistic folks, I found an entire industry of “stim toys” and gadgets and gizmos that mostly felt either very juvenile or very gimmicky. I will admit that I rarely drive without my weighted scarf in my lap. But whenever I see those fluorescent rainbow popper things in the targeted ads, all I can think is that I would absolutely snap if I was in a waiting area somewhere and someone was POP POP POP POP POP POP-ing away.

I’ve also found some books that are helpful. I was really excited to read, “Too Loud, Too Bright, Too Fast, Too Tight,” and I will probably post about it another time. But I was disappointed, too. Because in all of the autism groups I hear people talking about their issues but hadn’t found any that suffer from smell sensitivity in the way that I do. I thought this book would have something more to say about smell than what I’ve read before, but there really wasn’t much. In fact, one of my biggest scent triggers (lavender) it described as almost universally benign and calming. It did mention as an aside that some autistics in a small study had an adverse reaction to it (the focus of the book was not autistic people, but “sensory defensives”). But I have not been able to find the study she mentioned and pure lavender essential oil is frequently recommended to help people with ASD to calm down.

The truth is, it’s not just lavender. It’s most smells. Even smells I like, I can only handle so much. Our laundry detergent is unscented. All our soap is unscented. Our shampoo. When I walk down the block in the spring and see the beautiful flowers, I try not to breath through my nose. I hate the smell of flowers. And the smell of rain. And the smell of trees or freshly cut grass. It is not just chemical fragrances which seems to be the main issue for most of the autistics and sensory defensives. When I started Occupational Therapy and asked my husband if there was anything specific I should make sure to bring up he said, “The way smells make you rage out.” Which sums it up pretty well.

About a week ago I stumbled upon the term Osmophobia. It describes fear–or an uncontrolled psychological response such as anger or extreme anxiety–to smells. It is a condition that is pretty rare in the general population but not uncommon in those who suffer from regular and debilitating migraines. I have had maybe one migraine in my life, so that is not the cause for me. But the theory for migraine sufferers is that they have this intense reaction to smells because sometimes those smells trigger bad migraines. So even when they’ve found effective treatment and no migraine is coming they will still feel fear or severe anxiety from strong scents.

It’s had me thinking about sources of my own osmophobia. Partly because viewing it as a phobia rather than as a physical way I was wired is a complete game changer. Which is great because it doesn’t seem like Occupational Therapy has a good “hack” for it like they do for other sensory issues. It means sorting out the tangle of emotions behind smelling could help me overcome the smell-rage.

Now, I have always been sensitive to smell and was never a big fan of lotions and soaps. I don’t remember ever getting the pleasure out of smelling that other girls seemed to, although I could find scented options that were neutral for me. I have found some cool research about how smells are processed differently in some autistic people. So maybe my brain is working over time every time I smell and it is exhausting, but that doesn’t explain the whole issue.

There are a few times when I was bombarded a bit extra from smells that did correspond to psychological unrest. The first would be when I started college, which was a difficult time for me to find the Input/Output balance that I sought. I was living in the dorms and using different clothing detergent every week as I hadn’t bought my own. I was having really so many issues it’s not worth listing them all, but I was spending a lot of time wrapped very tightly in a blanket from head to toe, wandering around the dorm like a giant creepy burrito, or squeezing between my mattress and the bed frame to try to calm myself. Then followed the four years on anti-psychotics due to my frequent “mental health episodes” labeled as bipolar disorder and PTSD with dissociative panic attacks. When I came off of the anti-psychotics I did a very gradual weaning process and also came off birth control towards the end of it and that was a crazy six months. I hadn’t realized I had mostly lost my sense of taste from the medication but it came flooding back with such a fury. I had been gaining weight over those years but not enjoying food much or needing to add a lot of garlic and other strong flavors to really taste. I wanted to eat everything, but then all foods were making me sick. I went from around 130 pounds to 95 pounds in that six months as I was getting very ill from eating and things like garlic or onions or tomatoes were all too much. I had also started my career as a hairdresser and this is when I had some issues with allergic reactions (including my allergy to lavender) so I am sure I was smelling a lot of things in this time, I do wonder if that psychological unrest is still lingering in smells from this time when I was “smelling for the first time in years” but so physically ill for much of the year.

And then of course there were my pregnancies. While my pregnancies weren’t completely without joy, they were very physically difficult. I had hyperemesis gravidarum with all three, which means I spent quite a lot of time throwing up. I don’t recall my sense of smell being heightened (since it’s always pretty sharp), but smells that would normally make me irritable would be more likely to make me throw up. My pregnancies were a time where I felt very isolated except for from my immediate family (my husband and my babies), especially because the degree to which I was suffering was not understood by the people around me. Not because no one cared, but because how can you understand throwing up ten times a day for months if that isn’t your experience? I do wonder if this could create a psychological link to smells similar to that experienced by people with migraines.

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What follows is looking at some of my other Input Issues through this lens. There’s a very particular dragging noise that my kids make when they’re dragging toys across the tile floor that sends me to completely disproportionate levels of anxiety so fast, I get an awful, painful tingling in my neck, my shoulders shoot up or I cover my ears and sometimes (unfortunately) start yelling defensively. It happens in an instant. This is a big part of my work in Occupational Therapy, dealing with this startle response so I can be a better caretaker to my children.

I have had issues with similar dragging noises for a long time but the degree of the response has really taken off in the last year. After the birth of my last child we went to visit my family out of state for a month while my father was dying. He has always had a difficult time with noises that might not be loud, but that he can’t quite pinpoint. I have memories of him pulling over the car in a huff because a battery was rolling in a cupholder in the back seat. I never considered him abusive or felt to blame for his “colorful personality” as my mom would describe it, euphemistically. It felt out of his control. I never blamed him for it, either. In his old age his hearing had deteriorated, but I was still very worried about my children making noises that would disturb him. I wonder if a month of extra stress at all of their noises, on behalf of my dying father and the rest of my sound-sensitive family, has caused my hyper-vigilance. Maybe I really did feel in my body that those noises could kill someone. And if my lifelong anxiety from noises like that could be from growing up trying to spare my dad the stress. He had auditory processing issues, as do I, and also PTSD from his time in Vietnam. After my own PTSD diagnosis (that was completely unrelated to my own family) I would joke to myself that it ran in the family since the traits that came out in me and my dad were so similar. But having my own kids now, I see how my own trauma responses impact them. Its the reason I work so hard in therapy.

I never remember getting in trouble for making too much noise as a kid. I just remember being very quiet.