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Wednesday, July 16, 2014

The Sensory Processing Disorder Adults' Bill of Rights

As a fellow human being contending with a complex neurological condition often misunderstood by the general public, I, Rachel S. Schneider, on behalf of all adults with Sensory Processing Disorder (SPD), demand the following universal rights for people with SPD:

1. To be loved without question.

We did not choose this disorder, and yet we work diligently on a daily basis to respect our own limitations and make peace with our boundaries so that we may flourish even beyond them when we can. We are incredibly capable of the deepest love, and we deserve the love of family and friends, in spite of our challenges. Love should never be contingent on our abilities.

2. To be understood.

We are not picky princes and princesses. We are not "just being fussy" or "just being difficult." We are not "sensitive" or "afraid of the dark" or whatever other excuses you attribute to our silent disability. Our brains are wired differently than yours. Where you have connective tissue linking different areas of the brain for multisensory processing, we do not. We are literally missing chunks of this white matter tract. Some branches flat-out never developed. Studies have been undertaken and continue to be undertaken to prove our differences.

DTI study from UC San Francisco, 2013
The colors represent missing white matter tract in 
SPD males studied vs. neurotypical males studied.
This is physical proof of our neurological differences.


Because we're wired differently, our senses go haywire. We fear input from the senses or we crave input from the senses, and this impacts how we relate to the world around us. If you love someone with SPD, are related to someone with SPD, or work with someone with SPD, pick up a book about it. Visit a few websites. Ask them questions. Educate yourself on our differences. When you neglect to take the time to understand our unique experiences, it should not be our responsibility to feel guilty for your shortcomings. As they say, a lack of planning on your part does not constitute an emergency on my part.


3. To be respected.

In spite of our differences, we're not broken. We're educated professionals. We are parents. We are partners. We are daughters and sons, friends and foes. We do the best we can with what we have. We don't ask for your pity, just for your compassion. We don't require your permission, just your understanding. As we work to be our best selves in the face of our challenges, we deserve this reciprocal action from those in our social, professional, and personal spheres.


4. To be accepted for who we are.

In a day and age where inclusivity and diversity are key, we demand to be accepted for who we are. We are not changing. Our SPD isn't like a light switch that we can flip on and off at will. We will always be different than you, more rigid and reactive to things you do not see or hear or feel.  Like Diabetes or Multiple Sclerosis, SPD is not something we can trick ourselves out of having. SPD is something that we were born with and it is something that we will die with, and no amount of your wishful thinking will change the wiring of our brains or completely transform our behavior.

5. To have our disability recognized.

The brain is science's next frontier, and the medical community just doesn't know enough yet about SPD. This doesn't mean that it doesn't exist and shouldn't be studied. Anyone with SPD - particularly we adults, who have contended with our emotional and behavioral patterns and sensory foibles for decades - can attest to the validity of this diagnosis. Science is an ever-expanding field, and disorders once considered especially heinous are now viewed as commonplace. We deserve answers and support instead of skepticism and rejection, and we look forward to a time in the not-so-distant future when SPD is given the same attention as other more newly understood diagnoses.

We do not ask for much. Engage with us and you will see that our strength and courage in the face of neurological and psychological adversity is truly worthy of acclaim.




16 comments:

  1. Rach - What a great presentation! This document should be sent by every SPDer to their families and friends. Love You and Proud of You - Dad

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    1. Thanks for the endless love and support - always!

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  2. Right on Rachel. Well put and well spoken. May you be heard loud and clear.

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    1. Sharon, thank you for your ongoing support, mentorship, and enthusiasm. If we all continue to push hard enough, we shall be heard! I am proud to be with you in the trenches.

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  3. This is an amazing piece of work. I agree wholeheartedly.

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    1. Thank you, what a beautiful and generous comment!

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  4. Love this!!! Beautifully written:)

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    1. Thanks Kelly, this means a lot to me coming from you!

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  5. Eloquent and impactful, Rachel. Sending you love and admiration. Celia

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    1. Thank you for such a beautiful comment, Celia!

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  6. Wonderful! Thank you for writing this.

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  7. As an OT and fellow "sufferer", I would like to share this with my families and others who are struggling with this (with permission, of course!). Thank you for putting this so succinctly and understandable! : )

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    1. Amy, thank you for your wonderful comment. Of course, please feel free to share this post! We must continue to push people to recognize SPD and engage SPDers in embracing this condition and standing up for their rights.

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  8. My 8yr old son is officially diagnosed with ADHD with other issues because SPD is not recognised or understood in the UK by the health care officials. We have to pay for private counselling because all that can be offered by the NHS is Ritalin!! People need to be made aware of this hidden disability, my son is not naughty or attention seeking, he is a loving boy who struggles to make sense of the world and that is not his fault, and it is not his fault that people do not understand.

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    1. Misdiagnosis is the most frustrating part of SPD. I was misdiagnosed at age 14, and it made growing up much more difficult and frustrating. Your son is lucky that you recognize his SPD - I hope it'll give him the sense-of-self he needs as he grows into adulthood. Someday, the rest of the world will catch up. Until then, we must continue to remind people what all SPDers must contend with on a daily basis.

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