Things I wish people knew about SPD.
I saw a list of important things to know about SPD circulating on Tumblr yesterday, and it managed to skip pretty much everything that I wish people knew. I’m making my own list not in an attempt to talk over whoever made the first one, but to offer my own perspective.
Note: I can only speak for myself, so if anything in this post erases you or makes you feel invalidated, please tell me. I’m happy to add or amend things.
1. Not everyone with SPD is autistic. While most autistic people have SPD, the reverse is not true. I have read that while a higher percentage of the autistic community than the allistic community has SPD, there are more allistic people with SPD than autistic people who have it.
This one is important from a social perspective and a medical one. From a social perspective, it can be alienating for allistic people with SPD (like me) to see posts saying things like “allistic people cannot possibly understand what it’s like to have sensory processing disorder” or “don’t use these words I came up with to describe what sensory processing disorder is like unless you’re autistic.” I don’t think this misunderstanding benefits allistic or autistic people with SPD. I have had autistic people reblog stuff I’ve said about SPD before, so I think we’re likely to miss out on a lot of people who can relate to our experiences if we try to limit our understanding of SPD to include only one type of person. From a medical perspective, I worry that automatically linking SPD with autism might make it harder for allistic people with SPD to get help or support. If one of our parents is told it’s not autism, they are likely to go “oh, okay then, it must just be nothing” rather than continuing to explore other possibilities.
2. Adults can have SPD just like children can. It’s not something that people automatically “grow out of” once they reach 18.
3. It is not safe to assume that adults with SPD received treatment as children. The one resource I’ve found for adults with SPD (that didn’t exclusively focus on parents) wrote about how “even though you’ve been treated in the past, you may still encounter difficulties as you enter new levels of development.” Considering that many people with SPD report having been bullied, punished, and threatened by caregivers when they displayed signs of SPD, and that SPD was not well-known (particularly as separate from autism) when many of us were growing up, it is not safe to assume that our emotional needs were always attended to. Many of us are dealing with trauma from the abuse that our abusers blamed on our “difficult” behavior in addition to the already significant challenges the disorder brings.
4. Even those who have been to occupational therapy may still have sensory issues. Therapy is rarely a cure-all so much as an introduction to some strategies that might make a difference.
5. If someone with SPD is a “picky eater,” this person is not acting “spoiled” or entitled by limiting her menu or refusing certain types of food. Saying stuff like “oh boy, if you had had my mother, she would’ve set you straight about this ‘no spinach’ rule you have” is not helpful. In all likelihood, rather than “setting your friend straight” or “putting your friend’s pickiness in perspective,” your strict mother’s “I don’t care what you say, you’re eating whatever I tell you to,” attitude would have hurt your friend more than it helped. The foods that your SPD friend has on her “safe list” may be the only ones that she can even handle eating. People with SPD who have limited menus aren’t demanding their favorite foods every night; they’re trying to make sure that they actually manage to eat. Having our sensory issues triggered can make some of us literally unable to eat for a while, which is dangerous. Not eating is worse than being “picky” about what you eat.
6. Sometimes SPD triggers don’t vanish after the problem stops happening. Eating food with the wrong texture can mess up my appetite and cause feelings of shame that make me not want to eat. Being touched when I don’t want to be (including on the arm) can leave my skin crawling for hours if not days. If someone is still triggered after a problem is dealt with, yelling “I STOPPED, what’s the matter NOW????” isn’t going to help.
7. People with SPD who cringe and wince at blood pressure cuffs are not “pain wimps” or “cowards who hate fun” any more than sensory seekers who like blood pressure cuffs are “braver” or “less cowardly” than the rest of us. We simply receive different amounts of sensory information from things than you do.
8. SPD is inconvenient for the person who has it too. We don’t enjoy spending 2 hours at night talking about which dinner option is least likely to accidentally have a funky texture. We don’t enjoy working on a meal and having to not eat it (when we’re ravenous) because the texture is wrong. None of us enjoy having trouble sleeping, needing expensive toys to keep our senses in check, etc. None of us delight at finding every shirt at the store itchy. Even if these things annoy you, they’re probably more annoying for us because we have to live with them 24/7.
9. Sometimes SPD makes us enjoy certain things more than you would rather than just hating things more. The texture of a fuzzy or satiny blanket might be more exciting to us than it is to you. My striped sheets feel like they have ridges, which reminds me of eating ridgey chips. People who enjoy weighted blankets may like having more weight on top of them than you’d find comfortable. In short, our senses can be positively stimulated, it just might look different than positively stimulating yours.
10. For some of us, things like sex can be difficult or at least work differently than they do for people without SPD. Some people don’t like the feeling of any wetness around their faces and therefore dislike kissing. Others may need fairly firm touch and get “creepy crawly” sensation from touch that is too light. Some may have sex lives that aren’t too affected by SPD, while others may avoid sex altogether because of SPD. It’s important to ask anyone you’re thinking about being sexual with what their preferences are and to ask with an open mind.
11. When SPD is one of many “unusual” things we have going on, it can be difficult to find where it begins and our other concerns end. For example, a sexual trauma survivor might be unsure whether he’s triggered by kissing or just hates the sensation of it. Someone with fibromyalgia might not know if the way you’re touching them is bothering their SPD or if their fibromyalgia is flaring up. Sometimes, we may need you to stop doing things without being able to pinpoint exactly what’s wrong with those things.
