Supporting Sensory Issues: a Q&A With Lindsey Biel

Sensory issues can be a deeply painful part of a life on the spectrum. Sadly, many of us on the spectrum, and the people who love us, have found very little published on these sometimes deeply disabling challenges. Ten years ago, occupational therapist Lindsey Biel co-authored the book Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues, which provided concrete and detailed strategies for successfully supporting children who struggle with sensory discomfort and pain. Her latest book, Sensory Processing Challenges: Effective Clinical Work with Kids & Teens, aims to do the same for clinical professionals.

Recently, I talked to her how she became interest in this area, and what she's learned along the way. Here is what she had to say.

Can you tell us a little bit about your background?

Prior to becoming an occupational therapist, I was a freelance writer for many years, mostly in advertising and publishing. I enjoyed my work but it had become formulaic and I felt there was something missing which had to do with connecting with people in a deeper, more meaningful way. I considered becoming a psychotherapist or a social worker, but then came across a book while browsing the shelves at the Strand Bookstore. That book was Temple Grandin’s Thinking in Pictures. Well, that changed everything. I knew I wanted to work with people who think and feel differently and see the world from a unique and fascinating perspective.

As I researched autism I also started reading Oliver Sack’s wonderful books which led me to recalling the pleasure I’d experienced as a volunteer doing crafts and self care activities in a nursing home in high school and then the fascination of watching the rehabilitation of a relative who’d been paralyzed in a plane crash and it all came together in one perfect intersection: occupational therapy. Fast-forward 20 years and I am proud to say one of my books, Raising a Sensory Smart Child, is referenced in the expanded edition of Temple Grandin’s Thinking in Pictures!

You’ve published two books now on the subject of sensory processing issues, Raising a Sensory Smart Child and Sensory Processing Challenges — what drove your interest in the topic?

While I had always intended to work with adults, I was fortunate to receive a full scholarship to New York University for a master’s degree in occupational therapy through the NYC Department of Education. This required a two-year work commitment in the city schools after graduation.

In the schools, I worked with students with a range of disabling conditions from cerebral palsy to autism. I loved working with all of those kids and noted that almost every one of them had underlying sensory processing challenges. I, too, had been plagued by sensory issues such as discomfort with fluorescent lighting and glare in the classroom and noise in the cafeteria and on the playground. I remembered how exhausting all the light and noise was as a child and was not at all pleased to find I still had those issues working in the school environment. I was driven to learn more about sensory processing and to develop practical “sensory smart” strategies to deal with them.

In the introduction of the updated edition of Raising a Sensory Smart Child, you mentioned how many people reached out to you after the book was first published, and what a dearth of information there is on this topic. In your latest book, you call upon readers to educate others about sensory issues. In your opinion, what is the most effective way to do that? Is there anything in particular that care professionals can do to help drive this, in particular?

When I wrote the first book, Raising a Sensory Smart Child, along with the mother of a child I treated through early intervention, there was very little out there to help parents, teachers, and others understand, recognize, and help a person with sensory processing challenges. Many occupational therapists working with kids knew techniques that helped, but these techniques were generally kept within the therapy session, within the school, within the family. I wanted to reach out to so that every parent, teacher, clinician, and person with sensory problems had access to the best techniques and strategies. I also teach very practical strategy-oriented workshops to OTs, physical therapists, speech therapists, teachers, parents and others to share what helps.

My second book, Sensory Processing Challenges: Effective Clinical Work with Kids & Teens, is directed toward professionals, i.e., psychologists, neurologists, pediatricians, social workers, physical therapists, speech therapists, OTs, and others. All too often they do not recognize sensory problems or even if they do, they still need help connecting the dots between sensory issues and behaviors they are concerned about.

It IS so important that we all educate others about sensory issues. One of the most powerful ways to effect change in the world is to speak out. Temple Grandin spoke out in a way that directly changed my life and as a result, the lives of many thousands of people. Professionals need to listen to what people with sensory issues have to say. They need to collaborate with individuals who experience the world and their bodies differently and work together. They need to empower people with sensory problems to become more self-aware and to self-advocate. Sharing ideas, sharing perspectives, writing magazine articles both in general parenting and other general consumer publications as well as in autism and special needs specific publications, speaking to parenting groups, doing professional workshops and school staff development, and using social networks are all vital, vibrant ways to make a difference in the lives of kids, teens, and adults with sensory challenges.

Sensory Processing Disorder Essential Reads

It’s Not Autism, It’s Sensory Processing Disorder

Sensations: Too Much, Too Confusing, or Not Enough?

Have you seen a change in awareness of sensory issues in the years since your first book was published? If there has been a change, what do you think has been the driving force behind that change? How much further do you feel we need to go?

My first book was published in 2004 with an updated, expanded edition in 2009. There certainly has been greatly increased awareness of sensory issues during this period, especially in terms of more parents and professionals recognizing sensory problems in children both on and off the autism spectrum.

In addition to my book and others, the push toward getting Sensory Processing Disorder into the revised edition of the American Psychological Association’s Diagnostic and Statistical Manual shifted the conversation from whether sensory issues exist to whether this is actually a distinct disorder. In the end, of course, SPD did not make it into the DSM 5, but hyper- and hyporesponsivity to sensory input did make it in as a diagnostic criterion for autism. In the past few years there has been an increasing body of empirical research showing structural differences in white brain matter between people with sensory processing difficulties and those without as well as autonomic nervous system differences in children with autism and sensory issues, children with sensory issues who are not autistic, and neurotypical children. My hope is that this kind of research will earn sensory processing challenges a larger place in the next DSM.

Meanwhile, the American Academy of Pediatricians published a report on sensory integration in Pediatrics acknowledging the benefit of sensory interventions for some children. This put the term sensory integration in front of virtually every pediatrician in the country which was a huge leap forward.

Even ABA teachers who formerly did not “believe” in sensory issues now recognize that if a person is uncomfortable, overwhelmed, or in pain due to sensory problems, that they will not be as responsive or available for new learning. Today more classrooms are starting to incorporate movement to meet vestibular and body awareness needs. It is much easier to locate seamless socks and underwear and soft, tagless clothing for sensitive people. Noise reducing headphones are readily available.

There is still so much research, education and awareness that needs to happen. We still ask students and workers to adjust to schools and workplaces rather than adjusting those environments to meet the needs of their users. Parents still have pediatricians who trivialize their concerns about oversensitivities to noise, or clothing fabrics, smells and so on. And they still have friends and relatives who think they’re indulging in their child when they give them movement breaks or special allowances to accommodate their sensory needs.

In your most current book, you state that over 90% of individuals with autism have sensory issues of some kind, and some studies indicate 100% have auditory processing issues. How has that knowledge shaped how you interact with clients on the spectrum?

While we do have these very impressive statistics about autism and sensory issues, it is essential to recognize and honor the uniqueness of each individual. While not all people with sensory issues have autism, virtually everyone on the autism spectrum has sensory issues. Sensory issues are generally more severe and more potentially disabling in people on the spectrum.

When working with someone on the spectrum I do make an assumption that there are sensory experiences impacting the person. The question becomes to what degree? In what situations? Is this person in pain? What sensory systems are working most comfortably? Is the person hypersensitive to some types of sensory input? Undersensitive? How much multisensory input can this person handle before it becomes problematic? When overloaded does this person tune out or act up? I try to connect the dots between daily life experiences and outward behaviors that are problematic or unpleasant for that person. Then I try to assess what variables I can adjust so the person can feel and function better.

In your opinion, what are the most critical things a care provider needs to know about sensory issues experienced by those of us on the spectrum? What are the most critical things a parent needs to know?

When my first book, Raising a Sensory Smart Child, was translated into Mandarin, I had a Chinese friend take a look because I couldn’t decipher a single word. She told me the title translated as “It’s Not My Fault.” At first I was appalled at the translation and then I thought about the beauty of the new title. Every parent, teacher, and caregiver needs to know first and foremost that when a person is at the mercy of sensory issues that can be extraordinarily difficult to behave as expected. For young children on the spectrum, with all their difficulties with language and social thinking and motor skills, sensory issues make it even harder if not impossible to behave in a so-called “normal” way.

A care provider’s best bets are to avoid harsh lighting such as fluorescents, provide soft seamless clothing, use reassuring firm touch, and speaking gently and patiently using language that is clear, concrete, and free of unnecessary words. Do not demand eye contact when you are speaking as it can be extremely hard to process sight and sound simultaneously, especially for an autistic person who may well be unable to follow what you are saying when watching your lips, eyebrows, and facial expressions change constantly. Understand that a person can’t simply stop self-stimulatory behaviors because you tell them to and that these stims are a way of coping with stressful sensations and feelings, including boredom. Finally, assume competence even if the person is unable to prove this to you yet. And start focusing on what the person can do instead of on deficits.

Many people mistake reactions to sensory issues for purely behavioral issues. For example, mistaking a child who melts down in a store due to overload, versus a child who simply throws a tantrum because they aren’t getting what they want. How did you learn to recognize the difference?

A sensory meltdown represents a mismatch between the situation and sensory processing capability. Typically the sensory stimulation is uncomfortable or painful, the person cannot control impulses and reactions, and recovery happens slowly. A behavioral tantrum is a mismatch between the situation and emotions, desires, and coping skills. It tends to be goal-oriented and once the goal is met, the tantrum stops. If you know that a child does, indeed, have sensory challenges, then you can bet most unwanted behavior is due to those sensory challenges.

If there was one thing you wish everyone knew about sensory issues, what would that be?

I think it’s important to recognize that we all have sensory issues of one kind or another to some degree or another. It’s part of who we are and how we experience ourselves in the world.

Lindsey Biel, M.A., OTR/L, is an occupational therapist with a private practice in New York City. She is coauthor of the bestselling book for parents, Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues. Her latest book, Sensory Processing Challenges: Effective Clinical Work with Kids & Teens. For more information please visit Lindsey Biel’s websites at: sensorysmarts.com and sensoryprocessingchallenges.com.