Autism and Sensory Processing Disorder

Autism and Sensory Processing Disorder

Autism is still a widely misconceived concept but Sensory Processing Disorder (SPD) even more so. In my last post, Why Parents of Autistic Kids Get Judged and What to Do About It, I touch a bit upon the topic where I wrote: “78 percent [of those with autism] have problems related to sensory processing disorder (SPD) where things that most of us can easily handle, such as bright light, loud sounds, how different textures feel against our skin etc., can turn into a negative stimulus and become a major issue.” I don’t have SPD myself and therefore I don’t know exactly how it affects people. However, my sons do have some sensory related problems and thus, I want to elaborate on the discussion in my last post.

For those of you who do not know what SPD is, in short, it consists of hypersensitivity and/or hyposensitivity (under responsiveness) of the 5 senses: touch, sight, hearing, smelling, and tasting. A few days ago, I came across this picture (see below) that explains how SPD can manifest in individuals with autism. It is such a simple yet clear picture that I could not help but share it on Family and Autism’s Facebook page. It’s a picture by Autism All Stars Foundation UK, taken from their Facebook page, and I hope they don’t mind me using it as I think it can help better explain SPD to people who are not familiar with the concept. So, before I start linking the issues mentioned on the picture to my sons, please take a moment and read it over.

Autism and Sensory Processing Disorder

Picture by the Autism All Stars Foundation UK

To exemplify, I’m going to discuss how these symptoms come out in my boys. Not all of them are visible in my boys but there are some that I can clearly identify. Of course, these are my interpretations of their behavior mostly since they both have some difficulty expressing their sensations verbally. This is especially true for my little V, who turns 3 in a few days and is considered non-verbal. But despite their lack of rhetoric, it is clear as day that some of these issues are present. Note that SPD is not limited to autism and many kids have some of the issues mentioned in the picture above without having SPD. But if you are concerned about your child, you can check out the SPD Checklist to see whether it is something to look more thoroughly into.

unusually calm showering

unusually calm showering

In our home, bathing the boys is usually a dreadful chore but for different reasons between the two of them. JA has always been afraid of water and it takes him a considerable amount of courage to enter the bathtub. However, when he’s in, he really likes it. The problem is what happens next. He is really sensitive towards how warm water affects the skin and he frequently starts crying if we don’t take him out of the bath before he gets what we call raisin fingers (you know what I’m talking about, right?). In these cases, it’s both the look he dislikes and the different sensation he feels with his fingers when they are like that. Washing the hair is another matter but fortunately, this has become less problematic with time. While V loves water and can stay in the bathtub for ages, it’s like torture for him when it comes to washing his hair. He starts screaming and kicking like there is no tomorrow, putting himself in danger of slipping and hitting his head as he tries to escape. I am frequently wet from head to toe when this task is over.

Then comes the next dreadful part, oh yes, namely cutting the nails. It’s like they have some extra sensory spots in their nails that the rest of us don’t have. It’s like you are cutting their fingers and not their nails and they twist and turn in agony while you’re at it, making it twice as difficult to do without actually cutting too deep! The last sensory issue they have in common is bushing the teeth. They hate it! Simply put, we have become masters in using our own bodies to lock the boys into a position where they can’t move (without hurting them of course) in order to get their teeth brushed. From an outsider’s point of view, it’s apparently hilarious and fortunately, the boys are over it as soon as we are done.

In regards to combing or cutting the hair, JA has been particularly difficult. For years, it was impossible to take him to a professional hairdresser (even though it’s a close family member) and I had to cut his hair myself and still, that was only achieved with the help of extreme manipulation and bribery. He simply could not stay still, was crying for the loss of each lock of hair that fell down and tried everything he could to protect his hair, with his hands, by shaking his head, pulling his clothes over it and so on. He is, however, getting better now. But last year, I made the mistake of cropping his hair for the summer (something that worked so much better than actually cutting it) and as he watched me throw the hair that had been cut into the garbage he started crying which only increased when he saw his image in the mirror. He was unconsolable for a long time afterwards and since then he won’t let me near his precious hair!

Although touch per se is not problematic for JA, he is very sensitive when it comes to dirt or wetness. He really dislikes being dirty, which is sometimes quite funny actually. If he is eating and he gets ketchup (as an example) on his hands, he has difficulty continuing eating until its been cleaned off. He is equally sensitive to messing out his clothes and has to take them off if something get’s spilled on them. Yes, our JA is indeed a dandy young man. It’s the same with water. If a drop of water gets spilled on his clothes, he has to remove them immediately. He cannot wear a t-shirt or trousers that are wet and worst of all are wet socks. They are off in a blink of an eye. This can sometimes be a problem when we go on the beach or if we are playing with water outside because if he is not wearing what he considers to be swimwear (even though he is wearing bathing shorts) he can’t stand it and has to take them off.

JA is also sensitive to loud noises and strong smells. As a baby, he was very easily startled and still today he complains if the vacuum machine is turned on, if someone laughs too loudly or pretty much when some unexpected noise is heard. This is interesting when put into the context that while he seems sensitive to loud and unexpected sounds, he has a very selective hearing. Long before his diagnosis process started, the kindergarten (in Iceland) asked if we could have his hearing checked because they had such difficulty getting his attention. This is still an issue. If he is very focused on some activity or an item, it can be very difficult to reach him. It’s like he becomes one with the thing he’s so fixated on. But while he can have ultimate concentration when it comes to something he is interested in, he can have great difficulty concentrating on something he is not as excited about, such as listening to instructions (particularly from his mother! :). In terms of odor, he wrinkles his nose and leaves the room if he finds a certain smell unpleasant. This is particularly obvious when we change his brother’s diaper. Then he can’t stand to be in the same room and sometimes even starts complaining about feeling sick. I wish I could use that as an excuse myself!

V with one eye closed

V with one eye closed

When it comes to V, he has almost all the issues yet to be discussed from the illustration. The chewing part was something I did not realize was a sensory issue until I started reading about it. When he was still in a crib he chewed on it constantly. We tried to avoid it by buying these plastic shields that are supposed to prevent this but then he just started on the bars! …and at one point, my husband checked on him because he was hearing this incredibly loud grinding sound and found V where he was literally chewing on the iron that enables one side of the crib to be pulled up and down! That is the reason why, in this video, there are soccer socks wrapped around the end and corners of the crib – to prevent that little chewing monkey from eating the whole crib altogether! :)

But despite being a chewer, V is very selective when it comes to eating. If he is unfamiliar with the food put in front of him and doesn’t like the way it looks, it’s impossible to get him to eat it. And there’s no forcing him, then he goes bananas and we can just forget about food whatsoever. But this is not all. V is also sensitive to bright lights and he basically has one eye closed in every other picture (see picture to the right). This is the case, both when we are outside and inside. Physically, V is also very big and strong and has, as an example, amazing strength in his hands. But he does not have a good sense of his own strength and is somewhat clumsy in his movements, which can lead to unnecessary roughness when it comes to physical contact with others. It’s usually quite adorable, like when he gives you a very squeezed hug or a firm kiss, a bit more so than intended, but it can sometimes result in nosebleed or a bruise here and there.

Additionally, V sometimes starts stimming, which is repetitive movement or activity with the purpose of self-stimulating or soothing. We think that in V’s case, it is for soothing purposes due to some sort of over stimulation and mainly manifests in him turning round and round with one hand outstretched. From time to time he also repeatedly makes the same squinting grimace or shouts out three times, each time with increased volume. We don’t know what is causing him to start stimming, but we are pretty sure that it is related to sensory issues.

Despite the examples above, I do believe that both my boys have SPD on a fairly mild level. Although it does have some effect on their everyday life, it is not at a level where it is interfering with every other aspect of our daily routine. As long as I get to kiss and hug them and get some affection in return, I am thankful. I don’t know if they see the world through different lenses than I do or if their brains operate on a different frequency than mine. All I care about is that they are happy, whatever that entails.

As always, thank you for reading. Commenting and sharing is ever appreciated. ~Ragga

16 responses »

  1. I can relate. My son was very sensitive to light (he liked it too much – he used to stim by turning the lights on and off in our house constantly). He was also very sensitive to touch for a very long time. He wore a weighted vest for a while. We also brushed his body (over his clothes) with a very soft brush for about a year. This was suggested by our occupational therapist, and it did help.

    • That is very interesting. I’ve never thought about it from that perspective, i.e. that someone can like it too much and would need extra stimulation to feel better like brushing the body with a soft brush. Very interesting indeed. Thank you for sharing.

        • I was referring to the light-stimming in regards to the “liking it too much” but of course I may have misunderstood you :)

          …but do you feel that his sensory issues have changed over time? Is his sensitivity to touch still ongoing or has it reduced at all?

          • Sorry, that my original comment didn’t make sense. I am not sure that the light stimming was really connected at all to the oversensitivity to touch. They were possibly just comorbid. The sensitivity to touch has improved over time, in part due to the brushing and weight vests, and partly due to growing up (he is 24). We handled his fascination with lights and switches in a different manner, so probably they are different issues. When he was five, we started giving him piano lessons. Pressing a piano key and getting sound is sort of similar to flicking a switch and getting light. (although he was fascinated by lights before he could touch a light switch). At any rate, the more he played the piano, the less he played with the lights. He was never a prodigy, musically, but he played well enough to play mallet instruments in high school and then in college.

  2. Hi, sometimes I think our days/lives are dictated more by Luke’s spd than by other asd behavior. Our most recent occupational therapist specialising in asd said he had some of the most severe sensory issues she had seen. She also said she’d need to come up with some new strategies to work with him and as that was over a year ago she’s either got something very impressive for us or cutbacks have struck again!
    Our biggest concern was his diet as he self-limits to a very very small number of very bland, tasteless, colourless, odourless dry foods. He also still finger feeds at age 11, combination (I think) of checking temperature and amount and texture of what he putting in his mouth and also of fine motor problems with cutlery and his attention span not really allowing for mechanics of using knife and fork when fingers are instant. We were given calcium and iron supplements from paediatrician but of course an unpleasant tasting liquid with a funny smell and a colour will not work for him. We could cope with wiping it off the walls and ceiling but when he started forcing it down his nose and choking we stopped, too worried about him aspirating it. Ironically any non-food item, no matter how unpleasant, goes straight in his mouth, any thing from bugs and other peoples discarded chewing gum to lego, pens, remote controls etc. He had to have several teeth removed in hospital under general anaesthetic after demolishing them chewing stones. Basically anything we don’t want destroyed we have to hide. He also eats his own clothes (all labels removed, softest material only) and bedding. Chewy Tubes are great but we often find him twirling the chewy tube in one hand while eating a pen (or yesterday the mouse-mat) instead.
    Unlike your boys, Luke can’t get enough of water. He will sit for ages letting the shower water run over him and would have several deep baths a day if he could (also great strategy for calming him). He is however very sensitive to the temperature of the water and seems to experience temperature very differently. He always complains he’s too warm even when his skin feels very cold and he is unable to tell when he is cold. He has on occasion (very annoyingly) been left all day in school with soaking feet, socks and shoes and hasn’t noticed. Unfortunately this has often led to chilblains on his toes which he bit/ate (sorry for that image) causing bad infections.
    Sorry I could ramble forever, all lights on all the time, no loud noises, wearing earphones for everything, wrecking stools and chairs as he can’t sit without swinging/twirling, reading subtitles on tv instead of sound….
    It goes on & on & on….
    Thank you for highlighting this, it really can take over not just your child’s but your families life.
    And no, dear family, he’s not just fussy!

    • Wow, you sure seem to have your hands full!

      I feel like this is such a underrated topic and like you say, I’m sure that SPD is sometimes more of an issue than say autism itself. If the numbers I refer to are true, that 78% of those affected with autism also have some sensory issues, this needs to be brought up into the autism dialogue to a much greater extent.

      I come from Iceland and I have honestly never heard anything about it there. Admittedly I’ve only been following the autism dialogue for less than a year… but still! In fact, I just posted a question in an Icelandic Facebook group of parents of autistic kids, asking what the Icelandic term for SPD was and no one really knew! But at least it became an interesting topic of discussion.

      But this clearly needs to become a bigger part of the autism discussion. For me, increased autism awareness includes more awareness about SPD.

      • To be honest SPD was not a term I was familiar with, we have always just heard it referred to as sensory issues. We went on a really good asd parenting course just after diagnosis about 8 years ago that incorporated all sensory problems especially hypersensitivity & hyposensitivity relating to all 5 senses and how a person can experience a whole array of both within each sense. This was invaluable when he was so young as we realised that things like stroking his hair or skin was unbearable to him and that’s why he would scream and keep his distance but instead of thinking ‘this is his asd he doesn’t want physical contact’ we tried the opposite, holding round his arm quite firmly or hugging him tightly and he would happily sit beside us. My funniest memories of when he was much younger was every bedtime, for up to 2 hours, trying to simultaneously firmly hold one of his feet, put my other hand over his ear and read the same ‘Thomas the Tank Engine’ book over and over til he finally fell asleep, not easy, and probably not so funny at the time but if you can’t laugh at the harmless bits the bigger bits get harder!

        • I think it’s amazing that you got such a good course on sensory issues so shortly after he was diagnosed. I bet it helped a lot. This is how things should be done – always, everywhere.

  3. Takk Ragga mín fyrir þessar greinar. Það er svo margt þarna sem við getum lært af . Frábært að fá þessar upplýsingar frá þér. Við í Foldaskóla erum að fá til okkar deild einhverfra barna úr Hamraskóla og því miður veit ég og sjálfsagt margir aðrir of lítið um hvernig á að koma fram við þessa nemendur þrátt fyrir að góður vilji sé fyrir hendi. Starfsfólk fyrri skóla fylgir þeim nema í sérgreinum(þau eru með en við kennum) og þar er ég. Þessi atr. lykt, ljós,rödd eða hávaði plús það að þau eru í flestum tilfellum kanski næmari á líðan og umtal er gott að vita. Les pistlana frá þér með mikilli ánægju. Gangi ykkur sem allra best og sjáumst vonandi í haust hjá tengdó ! Kær kveðja. Unnur Hreins.

    • Takk Unnur mín fyrir þessi fallegu orð og það gleður mig að heyra að þér finnist þetta fróðlegt og áhugavert. Það er nú einmitt meginástæðan fyrir að ég fór af stað með þetta blogg, til að fræða fólk um einhverfu, hvaða einkenni geta fylgt einhverfu og hve fjölbreytilegir þessir frábæru einstaklingar eru. Það að vera einhverfur er nefnilega ekkert það sama og að vera einhverfur og einkennin eru marbreytileg og ólík. Það er mikilvægt að fólk átti sig á þessu og passi sig á því að vera ekki með alhæfingar hvað þetta varðar.

      Gangi þér sem allra best með þetta spennandi verkefni sem eru yfirvofandi í haust – ég er viss um að þér eigi eftir að finnast þetta bæði krefjandi og skemmtilegt. Bestu kveðjur, Ragga

        • Rut, si alguien hace un comentario en Islandia, le respondo en islandés. Eso no tiene sentido? :)

          (reply done with the help of Google translate so I don’t guarantee that it makes sense)

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