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A kindergartener with an infectious smile and a big personality, Bella often has meltdowns over seemingly little things, like the tags in her shirt or combing her hair.
Her mom, Gail, has heard it all.
She’s just spoiled!
Don’t worry, this is just a phase.
But Bella is not spoiled, and she’s not just going through a phase. Bella is a highly sensitive person. As an infant, she was diagnosed with sensory processing disorder (SPD), a neurological condition that results in an inability to process certain sensory information correctly.
According to the Star Institute for Sensory Processing Disorder, as many as one in 20 people may be affected by SPD or be considered a highly sensitive person.
Garland noticed something was different about Bella when she was about two months old.
“She was inconsolable, she didn’t fancy anything as most babies do such as a bouncy seat, a play mat, or toys. She constantly sniffed everything. She screamed every time I changed her like she had never been through it before.”
Christy Watson, whose daughter Lucy has also been diagnosed with SPD, vividly remembers the moment she realized Lucy needed treatment.
“Lucy was particularly bothered by her brother Emmett’s shrill newborn crying and would cover her ears and scream whenever he would cry.”
She says she was in the kitchen making lunch one day when Emmett started to cry. “Only a minute passed between the time he began crying and the point when I walked back into the family room. Lucy had taken a pillow from the sofa and had it placed over Emmett’s head in an attempt to get him to stop crying.”
“Highly sensitive children have debilitating aversions to light, noise, pressure,” says Michelle Collis, a North Carolina-based speech language pathologist. “Tags and seams can cause light pressure and touch, lights can be too bright, and a small buzzing from a fluorescent light [can seem] so loud the person cannot function.”
That’s because a highly sensitive person, like a child diagnosed with sensory processing disorders, can’t tune out stimuli, and processing literally everything at once can be completely overwhelming.
Because sensory processing disorder is not currently a recognized condition in the Diagnostic and Statistical Manual, the diagnostic guide used by most mental health professionals, kids with SPD are often misdiagnosed with attention deficit/hyperactivity disorder (ADHD), autism, anxiety, or obsessive–compulsive disorder (OCD).
Still, Lucy Jane Miller, PhD, OTR, and author of Sensational Kids: Hope and Help for Kids With Sensory Processing Disorder (SPD), believes that SPD is a distinct condition.
In a 2012 study Miller and her colleagues determined that while ADHD and sensory modulation disorder (SMD)—a specific type of SPD—share similarities, children diagnosed with SMD had more sensory complaints than those diagnosed with ADHD, leading Miller to determine that ADHD and SPD are distinct diagnoses.
So how do you know if your child is a highly sensitive person with sensory processing disorder?
“Tantrums for no apparent reason, eyes closed or squinted, or even turning the head and looking from the side of the eye are all markers of a child with SPD,” says Collis. “Kids with SPD may also cover their ears with their hands or tense their shoulders in response to noisy stimulus.”
An obsessive preference for a few items of clothing or demanding to wear the same shirt every day is another indicator that your child may have a sensory processing sensitivity. A highly sensitive child with SPD will get easily distracted by an itchy seam or tag in their clothing. The offending item of clothing will be all they can focus on until it is removed.
“Sensory seeking children may enjoy banging items, climbing, and hanging upside down from furniture,” says Collis. “In addition, a child with SPD can exhibit a constant need to be leaning, hugging, or touching another person.”
It might seem like your child is acting out or misbehaving, but really, they may just be trying to process sensory information. When your child clings to you after a meltdown, they’re clinging to their constant—a parent or loved one—in an effort to calm down after sensory overload.
I think my child has a sensory processing sensitivity. What now?
“I battled [SPD] for five years alone,” says Garland. “If you suspect your child has a sensory processing sensitivity, please do not do that. Go find the resources that your child needs.”
As a parent, you may not be sure where to start if you think your child may have a sensory processing disorder.
Elaine Aron, PhD, is a leading psychologist in the field of sensitivity and sensory processing disorders. If you suspect your child has SPD, Aron suggests filling out her free online questionnaire. If you answer yes to 13 or more questions, it may be worth getting your child tested for sensory processing sensitivities.
If you only answer yes to one or two of the questions on Aron’s questionnaire, your child may be highly sensitive, and could still benefit from certain treatments. Either way, Aron stresses that the questionnaire is not a diagnosis. Rather, it is a tool to help parents who may be at a loss with their child’s behavior determine if something like SPD may be part of the equation.
If you believe your child may have SPD, an occupational therapist trained in sensory issues can test your child for sensory processing sensitivities.
A diagnosis can often provide relief for both parents and children.
“I just thought I was a bad mom,” says Garland. “It was very hard to understand sensory processing because no one I knew had a child with any issues.”
But a diagnosis gave Garland and her daughter a path forward.
Watson says that pre-diagnosis, it was difficult to bond with her infant daughter, and she carries a lot of guilt because she didn’t initially understand SPD.
“Toddlers are moody and angry a fair number of times in a day, but Lucy was convulsing with rage, screeching at the top of her lungs, and dropping tiny bows more often than she was happy from about age 1 to 4. I realize now that this was because she would become so overstimulated, and she did not have the language skills to communicate her needs to us.”
Watson goes on to say, “It was hard to take and, truthfully, kept me from fully bonding with her for a long time. I know that sounds terrible, but it is inordinately more difficult to develop a healthy relationship with a child who is constantly screaming and unhappy than it is to bond to a calm, loving, and content baby.”
After Lucy’s diagnosis shortly before age five, Watson says she can now look back and clearly see the signs that Lucy had sensory processing issues, but even with testing, struggled to get help.
“She was much more irritable and discontented that most babies, and as a toddler she would melt down almost constantly. It was exhausting. Her speech was delayed, and I had her evaluated twice between the ages of 1 and 3, and each time, I was told that she was on the low end of normal and didn’t qualify for services. I still feel like she needs speech therapy but because she is on the fringe of that normal range, she is still not eligible for certain services.”
Because sensory processing disorders are not officially recognized medical conditions, it is hard to get kids with SPD the therapy they may need.
Garland, who lives in rural North Carolina, says getting Bella in-school services and treatment has been especially difficult.
“Living in this rural area even in public school the amount of help she can get is limited,” says Garland. “Her teacher is not familiar with sensory disorder nor is her dentist or the fill-in doctor we are using since ours left.”
Both Watson and Garland agree that parents of highly sensitive kids have to be advocates for their children.
“Early intervention is key!” says Watson. “If you suspect there is a problem, go to the doctor! If the doctor doesn’t listen to you, get a new doctor. You know your child better than anyone.”
Highly sensitive kids benefit from occupational therapy.
“Occupational therapy made Lucy a different child,” says Watson.
While the first few weeks of Lucy’s occupational therapy were hard, Watson says she began to notice a change after about six weeks of therapy.
“Her behavior improved dramatically, her fine motor skills, her gross motor skills, her auditory and tactile sensitivity—everything—everything continually improved,” says Watson. “After a year of OT and counseling, she had improved so much that she no longer qualified for services!”
In addition to occupational therapy, there are some things parents can do at home to help highly sensitive kids process sensory information.
“Blue or red cloths can be placed over fluorescent lights at work or school to decrease bright light,” says Collis. “Seamless clothing is hard to find, but Target has a new kids’ line for sensory sensitive children. If a preferred clothing has been found, parents often buy multiples of the item. I have children who wear headphones at school and public places to decrease outside noise.”
During a sensory overload, a child’s ability to process language can decrease dramatically. A child with SPD may not be able to communicate what’s wrong, which leads to further frustration. Collis says picture cues can be helpful communication tools for kids with SPD.
“I have even used written sentences for readers,” says Collis. “During a ‘meltdown’ language should be used to reassure and tell the child what behavior to do: ‘I will use my earphones when it is too noisy.’ ‘My earphones help the noise go away.’ ‘I will keep my hands to myself.’”
It can be incredibly frustrating to parent a highly sensitive kid or a child with an SPD diagnosis, but Garland says watching Bella grow and learn has been the most rewarding experience of her life.
“Mothering a child with sensory issues is hard,” says Garland. “I have cried. I have prayed. I have at times given up and at times I have been so proud I felt like my heart might burst.”
I’m an adult. Can I be a highly sensitive person?
Short answer? Yes. While sensory processing disorder is becoming a more accepted diagnosis, many highly sensitive people have been misdiagnosed with OCD, ADHD, or even anxiety.
Writing this article has actually opened my eyes to my own struggle with being a highly sensitive person. As a kid, I was always labeled “a handful.” I made good grades, but I struggled to stay in my seat or be quiet. I get what I call “overstimulated” easily, even as an adult.
I’m extremely outgoing, but if I’m at a loud party with lots of people, I get easily overwhelmed. When that happens, I have to remove myself from the situation and find a calm, quiet space or a meltdown is inevitable.
According to Aron’s adult questionnaire, this is actually common for highly sensitive people. Aron also says that it is a common misconception that women, children, and self-described introverts are the only individuals who can be highly sensitive.
According to information on Aron’s website, “We know that as many males as females are born [highly sensitive], although they obviously will be different in many ways because of their gender and how their family and culture has viewed their sensitivity.”
Aron goes on to explain that men typically score lower on the self test, which she believes is because men begin to sense their own vulnerabilities and may not answer their self-evaluations honestly.
In addition, the majority of highly sensitive people are introverted, but that still leaves a large percentage of extraverted individuals who are also highly sensitive. If you are extremely outgoing but need lots of downtime, Aron says you may be a highly sensitive person.
Unfortunately, treatment for highly sensitive adults has been lacking. According to Sarah Schoen, PhD, Director of Research at the STAR Institute for SPD, “We know that children don’t grow out of sensory processing disorder and many do not receive the necessary treatment when they are children, meaning symptoms persist into adulthood. Additionally, there are many adults who have been misdiagnosed and are just beginning to become aware of their sensory processing issues.”
The good news?
Treatment options for adults with SPD are growing. Working with an occupational therapist is still the best treatment option, even for adults, says Schoen. But it’s not always easy to make time for a lengthy therapy appointment when you barely have time for a grocery store run.
“That’s why our occupational therapists started to create educational content for adults that can be accessed from home,” says Schoen of the STAR Institute’s resources. “Many of the adults we treat say they have been misdiagnosed with a mental health condition or illness and have unnecessarily been taking medication. An important part of their treatment is to understand their sensory issues and differences so that they can participate in a program that includes the introduction of a sensory lifestyle with modifications to their daily life, alterations to their environment, and self-advocacy.”
Most importantly, know that you are not alone. If you suspect that you or your child is highly sensitive, there are online resources, like Aron’s website or SPDStar.org that can inspire your first steps toward treatment.