Day 14: Tourette Awareness 2020

Day 14: Tourette Awareness 2020

Let’s talk about Sensory Processing Disorder.

SPD (sometimes known as sensory integration dysfunction) is a neurological disorder that mixes up sensory signals and sends all kinds of abnormal responses to our nervous system. We do get the sensory information but then the brain sort of juggles it around and mixes them all up in interpretation.

Research has not pinned down the cause of SPD, but for those of us with Tourette Syndrome it is common as a comorbid – so I am going to focus on that primarily. Research seems to be leaning more toward it being inherited, which would make sense.

Most often you will be able to see SPD show up in children. Some of the most common ways you will see it are sensitivities to the following:

Clothing – especially socks, sock seams, clothing tags, clothing seams, and fabric types.

Lights – bright, flickering, warm tones, cool tones, too dim, etc.

Sound – tapping, banging, chewing, whistling, singing, deep tones, high tones, nasal tones, breathing.

Textures – especially in food! Often around chewy ((meaty fibers are the most common)), mushy, gummy, and gelatinous. Crunchy is much less of an issue.  Textures also come down to fabrics, so you may notice aversion to clothes, towels, bedding, etc. Anything you touch really is in this category.

Smells – this can be anything, unfortunately. Some smells just trigger it.

These are just a few examples – and for everyone with SPD it will be different.

I have SPD and it has been in my life since I was a child. The triggers I have are:

Fabrics – denim will almost make me vomit if I must touch/rub it, or if someone near me is touching/rubbing it.  (ALSO, it is not fun to “bug” someone with SPD by trying to trigger them, its quite upsetting. This goes to all the jerks out there that would try and upset me by rubbing denim to see me react. DO NOT DO IT. It is not funny.) Cotton textures except for incredibly soft jersey – so clothing and bedding are an issue for me. Socks and sock seams. Dentists putting cotton in my mouth is enough to flip my shit for days even just at the thought of it.

Tips for those dealing with fabric aversions, in adult or children:

Seamless socks, dress socks (both for texture and seams), bamboo sheets, thin soft jersey materials, minimal seams on pants/shirts, tags removed or better tag less printed labels!

Foods – Meat will almost always make me vomit based on its texture. I cannot eat anything that is steak/white meat/ etc. No, it does not matter how “moist” you might think it is, the texture is still revolting… its like chewing on a sponge or sock… even the THOUGHT of it freaks me out. I can eat SOME meat, ground meat texture is easier, but even that will still often make me gag. Crispy bacon is always a winner. Fish I can do if its crispy coated, and usually can do some porkchop if its crispy coated. I typically just avoid most meat.

Tips for those dealing with food aversions: Many dislikes are based on mushy/gelatinous/meat… but very few people mind crispy! So, get creative. Meat = try a crispy coating (and never force it if they try it and say no). Meat you can also puree it and add it into sauces etc. if done right it will almost be undetectable. Figure out how to change food textures. ASK your kiddo which textures bug them or try and figure it out based on what they will not eat – there will be a pattern or more than one pattern.  Do not give them a hard time, do your best to prevent scurvy but otherwise it will not kill them to not eat something.

Sounds – Nothing makes me more crazy than whistling especially in public, tapping (people drumming chopsticks make me want to throat pinch them no matter their age, please do not do this and don’t let your kids do it), kids kicking the seat under their bench in restaurants, nasal voices, chewing sounds, breathing sounds (especially mouth breathing), and repetitive things especially banging. The problem with SPD is a “normal” person can block these things out, but with SPD you end up so hyper focused on the hell, that it is all you can hear. I promise I am not just being mean… please think about it the same way you think about a child with autism, the sound becomes overwhelming and I cannot just turn it off. Luckily, I am hard of hearing which helps in some cases.

Tips – noise cancelling headphones, ear plugs, soft music that is calming, and asking people to stop when needed.

Smells – this one is tough, there is not a lot one can do. In a controlled environment you can work to reduce or eliminate smells that are upsetting. You can also use Vicks VapoRub under your or your child’s nose IF they can tolerate it – it will overwhelm the olfactory senses and shut down a LOT of smells or cover them.

Final words: your child is not just being a brat, these sensory issues are quite upsetting to us, and can cause some complications in life. Forcing a child with SPD to do/eat/touch something that they have an aversion can cause quite a lot of damage emotionally. Please be patient, get creative, if they are old enough ask them for help to figure out what might work, and do your best with it.

ALSO, the DSM recently REMOVED SPD as an individual diagnosis which creates a host of issues in not only being diagnosed, but then treating or adapting to living with SPD. No matter what the DSM says, as someone WITH SPD since childhood, I can guarantee you it is very real and your and your child’s experiences with it are very real, and there are ways to make it easier to live with.

Thanks for reading!