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21 Truths People Affected by Sensory Processing Disorder Wish Others Understood

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Sensory processing disorder (SPD) is a condition that exists when sensory signals don’t get organized into appropriate responses. A person with SPD may find it difficult to process and act upon information received through the senses, which can make performing everyday tasks more challenging.

A 2009 research study by the Sensory Processing Disorder Scientific Work Group (Ben-Sasson, Carter, Briggs-Gowen) suggests that 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions.

In honor of October, which is National Sensory Awareness Month, The Mighty teamed up with the Sensory Processing Disorder Foundation to ask our readers affected by SPD what they wish the world understood about their condition.

This is what they had to say:

1. “I do not complain about bright lights, smells, tastes, rough touch, etc., just to annoy others. I am overwhelmed by sensations and am learning how to process differently. Until then, please be patient with me.” — Sandra Cusack

I do not complain about bright lights, smells, tastes, rough touch, etc. just to annoy others

2. “I would love for people to understand that the way my child processes sensory input dramatically affects every single aspect of her life. It involves how she coordinates her body as it moves, her strength and endurance, her ability to maintain focus and learn amidst visual and audial stimuli that can make her feel overwhelmed. She is constantly doing at least twice the work we do on a daily basis just to maintain physically, socially, emotionally and academically.” — Ashleigh Davidson Williams

3. “I only want understanding, no judgment. With understanding comes knowledge. ” — Amanda Montes

I only want understanding, no judgment. With understanding comes knowledge.

4. “The extra letters don’t define her, they just make her more lovable and unique.” — Lydia Kelly

5. “I want people to notice and remember that adults have SPD too.” — Alicia Chesnutt

6.  “It’s not ‘just a phase.’” — Linda E Hein Faust

Its not just a phase.

7. “Don’t judge children and say ‘they are bad or ‘their parents need to spank them.’ They could have SPD or autism, etc. and be in a situation or environment that is uncomfortable to them.” — Nikki Ramsey Judd

8. “When I need to go reset, it’s not because I’m being dramatic. To be in a room of people is constant stress on my mind and body to make sense of an environment that makes simple sense to you. Sounds, smells, lights, brushes against people, all of it had to be decoded and reiterated into a language my brain can understand, and there can’t be more input when I’m trying to do that. I need a space free from all stimuli to give my brain the break it needs to process things… Just give me a minute to myself. And please don’t interrupt it.” — Hailey Remigio

To be in a room of people is constant stress on my mind and body.

9. “The wiring of the sensory system is to a human what the calibration of an engine is to a car. They all have different starting points and need different fine tuning. SPD isn’t a behavior or being difficult, but a genuine need of that individual’s sensory system for moderation that allows them to process the information being received.” — Shannon Elizabeth

10. “She doesn’t do it for the attention or because she’s spoiled. And she definitely doesn’t act these ways because we don’t ‘discipline’ enough.” — Michelle Mayfield 

she doesn't do it for the attention or because she's spoiled.

11. “I am a person with feelings and I can hear you.” — Teresa Whitbey

12. “These children will challenge your patience, make you want to pull your hair out and sometimes even cry…. however, they push you to be a better teacher, an incredible parent and an empathetic person. They force you to think outside the box, be proactive and advocate for the needs of others. Although it often seems a relentless journey the reward and payoff is incredible when you see these children succeed with your help.” —Rachel Buono  

13. “No two days are ever the same.” — Glenna Brashear Gamble

14. “I really want to hug you, but my skin doesn’t.” — Jessica Boss


15. “My son cannot choose how he reacts to his disability. I wish they could understand that his emotions drive his behaviors, the behaviors are not making him emotional. He tried so hard to get others to understand that, for example, when another child is shushing him over and over it is not something he can ignore. It’s like a scratching in his brain the way nails on a chalk board do for you.” — Dawn Dibbern

16. “My daughter is not being rude when she covers her ears. It’s what makes her surrounding bearable.” — Bailey Annan Sonday

17. “It’s like a million pins and needles attacking your outsides and insides at once.” — Courtney Smith

18. “No amount of ‘better’ or ‘stricter’ parenting is going to fix it.” — Stephanie Petch

19. “Just because I look fine on the outside doesn’t mean I’m not struggling inside… Even the professionals I take my kids to assume so much. They do things like talk to me in a crowded waiting room. They assume just because I’m an adult I’ve figured out how to handle my sensory issues. I didn’t know what SPD was for most of my life.” — Holly Newt

SPD8 copy

20. “Please see us as different people with different ways of coping with life, not as lazy, crazy members of society you need to stay away from. We’re lonely and struggling but not so much because of SPD. It’s because of ignorance.” — Rachel Abbey

SPD9 copy

21. “We’re not trying to be difficult or to cause trouble. We wish we could put on any clothes and socks and shoes in the morning and go. We wish we could eat food of every texture and enjoy. We wish we didn’t have to vomit when the air is filled with one thousand kinds of smells. We wish the chairs and tables could cooperate with us so we didn’t have to fall and be the laughing point. We wish we could enjoy the concert and the movies just as much as you do. We wish! Sensory processing disorder is real, and it affects our lives and yours. With your loving understanding and our effort put in to cope with this disorder, lives, yours and ours, will change for the better.” — Julie Shaw

SPD10 copy

Originally published: September 27, 2015
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