Published in Sensory Focus magazine, Winter issue

If you are seeking information about SPD’s effect on children, you are in luck. An abundance of books is available to help parents, teachers, and other non-OTs learn to recognize SPD characteristics and support “out-of-sync” kids at home and school.

Alas, should you seek information about SPD’s effect as children mature, you will find fewer choices. Reader-friendly resources that describe “what happens next” are hard to write and hard to find.

Worrying and wondering, parents and teachers have many questions about their kids’ future. As children grow up:

• Do they grow out of SPD?
• Are they able to use their beautiful minds to flourish at school?
• Do they develop close friendships?
• Are they invited to birthday parties and social gatherings?
• Can they learn to enjoy games and sports?
• Can they manage noisy, odorous, madding places, such as the subway, the highway, the cafeteria, the dormitory?
• Will they ever eat like other people?
• Do they learn to date, procreate, and parent?
• Do they find meaningful work?
• Does it ever become okay to hug them?
• Will it be possible to take them to new places? Go to the beach, across a bridge, to the amusement park, up an escalator, on an airplane … to the dentist?
• Does everything turn out all right in the end?

Parents and teachers have asked me these questions since the publication of The Out-of-Sync Child in 1998. They yearn for reassurance that the children they care for will develop the sensory skills necessary to function in daily life.

I have yearned, in turn, to give an answer more satisfying than, “It all depends… I really don’t know.” I don’t know because, as an early childhood educator, my expertise is with young children. Also, I do not know because I do not have SPD. Well, maybe, just a little, when my hands are touching finger paints or bread dough. (Shudder.)

Because I don’t know first hand how SPD affects maturing people, I have sent information seekers to experts who do. Sharon Heller, a psychologist, has sensory over-responsivity and has written books about it for teens and adults. Hartley Steiner, mother of three teenage sons with SPD, has edited a compilation of memoirs from 48 adults.

Scholarly articles and research papers about SPD in adults are also available in journals, in OT Practice, in AOTA’s Sensory Integration Special Interest Section newsletters, and on the Internet. Moya Kinnealey is well known for her research in SPD with adults, and Teresa May-Benson and the late Jane Koomar reported on research studies in this area. Tina Champagne has published research with others and a book on using sensory integration strategies with adolescent, adult and geriatric populations in mental health settings. Paula Aquilla wrote an excellent article for S.I. Focus magazine about SPD in people of different ages.

These books and articles are helpful, and still we need more. Teenagers and adults must know that they are not alone, that they can learn new strategies, that others like them have learned to cope and improve their lives with direct one-to-one occupational therapy, and that the future is full of hope.

Thus, I decided to gather and interweave stories written by individuals who have lived with SPD all their lives and who are glad to tell us about the process. The title of the forthcoming book will be, The Out-of-Sync Child Grows Up: Coping with Sensory Processing Disorder in the Adolescent and Young Adult Years.

To whet your appetite, here are some examples of contributors’ thoughts:

I Was Finally Out of Jail
“When I learned about SPD around my 40th birthday I was shocked — so many years, so much suffering for me, and others! I felt like a victim, a person who was confined in jail for all those years without being at fault and suddenly was exonerated because they discovered I was innocent.” — Gina Betech

I Enjoy Helping Younger Kids
“I have been pleasantly surprised to discover that although I am still a teenager, I am having a real positive effect on kids even younger than I am. One of the things I have learned is that although children can learn from the guidance of adults, they will progress even more if someone around their own age assists them. Through my speeches, I have been able to directly speak to children and convince them about the merits of hard work so they can find their own voices. This is a reward unto itself.” — Alexander Fields-Lefkovic, author of books that promote exercise to kids with special needs

I Learned to Attend to Personal Hygiene
“Even after my nervous system became more relaxed to these sensations, my mind was still psychologically hardwired into avoiding them. I had to spend time working on removing my beliefs that these forms of stimuli would still be painful to me. Once I did, however, I was finally able to do the things I once could never bear! “After over three years of OT as an adult, I have finally gotten to a place where I am able to appreciate a daily shower, and brushing my teeth won’t send me over the edge.… and I am now able to begin reversing an awful trend in declining dental hygiene. Even if I never truly enjoy these things, being able to do them without them wreaking havoc on me and sending me into a state of overload has been amazing. “Occupational therapy honestly does have the potential to make dreams come true, and my story has been a living testament to that over the past few years.” — Dan Travis, college student who avoided the tactile sensations of soap and water tasks until OT helped him

I Help Others Understand
“I cried writing the email, unsure how I would come across, how they would react, and how it might change our relationships. Their reactions were heartwarming. When I showed up at my cousin’s celebration (disorders and diagnoses be damned), my uncle enveloped me in his arms. He didn’t need to speak a word; I know he understood. My aunt and cousins followed suit. “Two hours later, when I started feeling sensorily-taxed by the events, no one asked, ‘Why are you going? Why can’t you stay?’ Instead, we all teared up and hugged good-bye. They thanked me for the monstrosity that was my effort to participate that night. And that’s the thing. Most people don’t know how much you go through until you give them permission to understand.” — Rachel Schneider, after being diagnosed with SPD and deciding to inform her relatives prior to a cousin’s wedding

The stories collected so far cover many topics, from feelings to friendships, from strategies for avoiding certain sensations to strategies for adapting to other sensations, from childhood memories to future plans. Several topics reoccur, especially the misery of having an “invisible” and often undiagnosed or misdiagnosed disorder — and the jubilation when an occupational therapist made a correct diagnosis of SPD. The stories are vibrant, poignant, funny, determined, angry, resigned, tender, and grateful — the full gamut. Indeed, the contributors concur that their lifelong work to manage sensations has made their lives and relationships more precious than anyone would have predicted when they were out-of-sync children.

References

BOOKS
Fields-Lefkovic, Alexander. Get Strong! Have Fun! An Exercise Book for Kids (2007) and Get Stronger! Have More Fun! (2011). www.starservices.tv/products.html

Heller, Sharon, PhD (2003). Too Loud, Too Tight, Too Fast, Too Tight: What to Do if You Are Sensory Defensive in an Overstimulating World. New York: Harper.

———-—- . Uptight & Off Center: How SPD Creates Anxiety, Confusion & Other Mental Health Issues & What You Can Do about It. http://sharonheller.net/uptight-off-center.php

Steiner, Hartley. Sensational Journeys: 48 Personal Stories of SPD (2011). Arlington, Texas: Sensory World. www.SensoryWorld.com

ARTICLES
Aquilla, Paula, DO, BSc, OT (2007). Sensory processing across the ages. S.I. Focus magazine. www.SIfocus.com

Champagne, Tina, OTD, OTR/L, CCAP. Publications on “The Seclusion and Restraint Reduction Initiative” and using sensory strategies to benefit adolescents and adults in mental health settings. www.ot-innovations.com

Kinnealey, Moya, PhD, OTR/L. Research studies on SPD in adolescents and adults, available at www.SPDfoundation.net and other websites.

May-Benson, Teresa, ScD, OTR/L, and Koomar, Jane, PhD, OTR/L. Research studies in sensory processing in typical adults as well as in adults with SPD. www.thespiralfoundation.org/researchproj.html