What Are Sensory Processing Differences and How Do They Relate to Autism?


Autism spectrum disorder (ASD) is a developmental disorder. It often appears in the first three years of life and affects social communication and behavior.

Several different signs can prompt someone to seek out an autism evaluation. In this Q&A, Paige Siper, PhD, Chief Psychologist of the Seaver Autism Center for Research and Treatment at Mount Sinai, explains when you might want to seek an assessment, what that involves, and what a recent focus on sensory processing differences means.

What signs might prompt an evaluation for autism spectrum disorder (ASD)? 

Several signs may prompt an autism evaluation. Concerns are commonly raised by a parent, family member, pediatrician, or teacher. Autism-specific screening should occur at the 18- and 24- or 30-month well visits and whenever a concern is expressed.

Autism is a constellation of difficulties with communication and reciprocal social interaction as well as repetitive and restricted behaviors and interests. Early signs may include delays in language or motor skills, although some individuals with autism achieve milestones on time.

Social communication signs include limited use of nonverbal communication such as eye contact, facial expression, pointing and other gestures and limited social interaction; for example, lack of showing objects of interest, minimal interest in peers or lack of shared enjoyment with others. Difficulty with imitation and pretend play are also common early signs. Repetitive behavior signs include repetitive speech, an intense focus on certain topics or parts of objects, insistence on sameness, lining up objects or toys, motor mannerisms such as hand flapping or body rocking, and unusual sensory behaviors.

Paige Siper, PhD

What are sensory processing differences?

In 2013 when the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) came out, it was the first time sensory reactivity was included within the diagnostic criteria for autism. The DSM-5 describes three categories of sensory differences:

  • Sensory hyperreacitivty is an overresponsiveness to sensory stimuli that may take the form of individuals covering their ears in response to sounds, squinting or avoiding the sight of certain objects, resisting the feel of certain textures or discomfort when touched by others.
  • Sensory hyporeactivity is an underresponsiveness to sensory stimuli, which can result in significant safety concerns. For example, an individual who is hyporeactive may not respond to the sound of an alarm, the feel of pain or temperature, or the sight of a car passing by.
  • Sensory seeking is an excessive interest in sensory stimuli. Individuals who are sensory seeking may repeatedly seek out the sight, feel or sound of certain objects.

Each of these examples can affect daily living and quality of life. Research suggests up to 90 percent of individuals with autism display sensory differences compared with people who do not have autism.

How do I know if my child needs a sensory assessment and what is involved?

If your child is displaying sensory hyperreactivities, hyporeactivities, or seeking behaviors that are affecting their daily functioning, a sensory assessment may be warranted. The goal of a sensory assessment is to identify personal sensory preferences. We all have our own sensory preferences, and by determining those preferences we can modify environments accordingly.

Over the past several years, the Seaver Autism Center at Mount Sinai developed a novel sensory assessment called the Sensory Assessment for Neurodevelopmental Disorders (SAND). The SAND combines a semi-structured, clinician-administered observation and a corresponding caregiver interview. We want to see, within an exam setting, how a child responds to stimuli that prompt sensory responses, and we also want to capture information from caregivers about their child’s daily experiences.

Following an assessment, parents will learn about their child’s unique sensory preferences and sensitivities, and then an individualized treatment plan can be developed and implemented. Adjustments in an individual’s sensory experiences can have a profound impact on adaptive behavior, social engagement, and learning.

Since autism is a lifelong diagnosis, how can parents and caregivers support their child as they develop?

Parents are their child’s greatest advocate and the true experts. Parents can support their children by helping them develop the skills necessary to become as independent as possible. A variety of interventions are commonly used to help individuals on the autism spectrum gain skills. These include:

  • Applied behavior analysis, often referred to as ABA therapy, is one evidence-based treatment for core features of autism.
  • Speech and language therapy is important to develop both functional and pragmatic communication skills.
  • Occupational therapy can focus on sensory reactivity, fine motor skills, and activities of daily living.
  • Physical therapy can target challenges such as low muscle tone, which is commonly observed in autistic individuals.

It is important for each child to have a personalized treatment plan that is reviewed and updated regularly to ensure individuals reach their optimal potential.

What programs and services does Mount Sinai offer at the Seaver Autism Center?  

The Seaver Autism Center is a multidisciplinary program with a large research focus ranging from natural history studies that track change over time to clinical trials that test new treatments. All individuals participating in research at the Center receive an autism-focused research evaluation. We also offer neuropsychological and psychoeducational evaluations, individual psychotherapy for those on the autism spectrum and their siblings, parent training, and medication management through Mount Sinai’s Faculty Practice Associates. The Seaver Autism Center has a large community outreach program that offers social skills groups and training for both families and professionals. We have a variety of collaborations with local cultural institutions such as the American Museum of Natural History and the Guggenheim Museum. Finally, our training program is committed to training the next generation of autism experts.

What is the Seaver Autism Center at Mount Sinai doing to support patients’ sensory needs?  

Over the past year, we made it a priority to improve care and better support individuals on the autism spectrum’s sensory needs within the Mount Sinai community. We developed Sensory Toolkits that are now available within our pediatric emergency departments. We are starting to disseminate the toolkits to other specialized practices within and outside of the Health System with the goal of improving the patient experience. Each kit has several sensory tools, as well as an information sheet that explains the intended use of each tool to satisfy sensory needs and ultimately to make each person’s experience more comfortable. Families get to take the kits home with them to continue using beyond their visit to Mount Sinai.  Our team also developed a learning module, now available across the Mount Sinai Health System, to train physicians, clinicians, and staff members within different disciplines on how to best support neurodiverse patients. We are actively collecting data on both of these initiatives to ensure these new programs are serving their intended purpose. Finally, we are surveying caregivers of children on the autism spectrum to determine which sensory interventions and supports have and have not worked for their child. You can learn more here.

Prevalence and the Understanding of Autism Spectrum Disorder Are on the Rise

The Seaver Center for Autism Research and Treatment at the Icahn School of Medicine at Mount Sinai is advancing the understanding of autism spectrum disorder.

Autism spectrum disorder (ASD) is increasing in prevalence, but so are options for evaluation and therapies, said Paige Siper, PhD, Chief Psychologist for the Seaver Autism Center for Research and Treatment, and Michelle Gorenstein, PsyD, Director of Outreach for the Seaver Center. “The interesting and exciting part about the work that we do is that we get to see toddlers through adults, and I think that is something very unique about this field,” said Dr. Siper, Assistant Professor of Psychiatry, Icahn School of Medicine at Mount Sinai. The virtual talk can be viewed here.

Paige Siper, PhD, Chief Psychologist of the Seaver Center

“Autism Spectrum Disorder Across the Lifespan” was part of a series featuring speakers from around the Mount Sinai Health System as well as the community to raise awareness and promote an inclusive and equitable health care environment for people with disabilities.

Dr. Gorenstein, Assistant Professor of Psychiatry, Icahn School of Medicine, said that an important tool in the field is Applied Behavioral Analysis, a class of interventions based on principles of operant learning theory—that is, providing positive reinforcement for observable behavior, like asking for a push on a playground swing, or making a choice. Another therapy, Relationship Development Intervention, is a family-based method that builds social and emotional skills. And there are a variety of therapies to treat conditions that can accompany ASD, such as anxiety, ADHD, or epilepsy.

Michelle Gorenstein, PsyD, Director of Outreach for the Seaver Center

ASD is characterized by difficulty with social communication, as well as the presence of repetitive behaviors or restricted interests.  ASD is primarily a genetic disorder but can also be influenced by environmental factors. Dr. Siper said multiple studies have shown that vaccines do not cause ASD, dispelling a common myth.

One in 54 children in the United States are diagnosed with ASD, and boys are four times more likely than girls to receive the diagnosis. ASD can be identified in children as early as age 18 months, which makes early intervention very important in improving social, communication, motor, and daily living skills.  “Early intervention can change outcomes,” Dr. Siper said. “It’s the opposite of watch and wait.”

The Seaver Center is dedicated to caring for people of all ages with ASD, furthering research into risk factors and drug development, and leading clinical trials. “One of the unique things about our Center is that it really does translate the basic sciences to the clinic,” Dr. Siper said. For more information, visit the Seaver Center site.

 

New Clinical Trial Will Test Whether Ketamine Can Be Used to Treat Children with Autism

Sandra Sermone and her son, Tony, who has ADNP syndrome. Mrs. Sermone founded the ADNP Kids Research Foundation, which is funding Mount Sinai’s phase 2 clinical trial into the safety and efficacy of ketamine as a potential treatment.

Ketamine, an anesthetic medication that has also been approved for use in severe depression, is now offering promise to children with a form of autism known as ADNP syndrome, or Helsmoortel-Van Der Aa syndrome. Ten children, ages 5 to 12, will soon take part in a clinical trial conducted by the Seaver Autism Center for Research and Treatment at Mount Sinai to determine whether ketamine is safe and well tolerated, and able to help compensate for the neuropsychiatric deficits that stem from missing a copy of the ADNP gene.

This will be the first clinical trial launched for ADNP syndrome, which was identified in 2015. It is a testament to the dedication of parents and physicians at the Seaver Autism Center, and the potential of artificial intelligence (AI) in helping advance treatment research in rare disorders.

Ketamine and several other existing drugs were identified by an AI tool, mediKanren. It was created at the University of Alabama by a colleague of Matthew C. Davis, MD, whose child has ADNP syndrome. Dr. Davis and another parent, Sandra Sermone, investigated ketamine in relation to ADNP within the existing scientific literature and found that it upregulated expression of the gene. With this and other relevant clinical data in hand, they filed for intellectual property protection. Then Mrs. Sermone brought the information to leaders of the Seaver Autism Center, who agreed that it was worth further investigation. Alexander Kolevzon, MD, Clinical Director of the Seaver Autism Center applied to the U.S. Food and Drug Administration for permission to proceed with a clinical trial and received approval.

“We think ketamine has potential and that it’s safe, so we’re very excited about it,” says Mrs. Sermone, who founded the ADNP Kids Research Foundation in 2016. The Foundation recently ran a “virtual” fundraising effort that raised more than $150,000 in six weeks that will be used to finance the entire phase 2 clinical trial and begin to lay the groundwork for a possible phase 3 study.

Approximately 275 children worldwide have been diagnosed with the syndrome, which often is accompanied by other complex health issues of the heart and brain. “I am so grateful for the team at Mount Sinai. I’ve never seen a group more dedicated to working with patient groups,” she adds. “Ketamine is a repurposed drug, so if it shows efficacy we can hopefully move quickly into a larger, phase 3 clinical.”

Ana Kostic, PhD, Director of Drug Discovery and Development at the Seaver Autism Center, says, “Ketamine has been used for many decades. We know a lot about the molecule and its safety profile, and now to find new uses for it through scientific discovery is amazing.”

Since ADNP is very important for the development and function of the central nervous system, the ability to restore its functionality would be extremely beneficial.

Dr. Kolevzon says each of the children enrolled in the clinical trial will receive a single infusion of ketamine over a period of 40 minutes and will be monitored over the course of four weeks to assess improvement. In addition to determining its safety and tolerability, he says, “we are also really interested in clinical improvement. Kids with ADNP have a lot of sensory sensitivities that we can measure with different tools, such as electrophysiology.” This would enable the researchers to “see whether there are changes in the electrical patterns in the brain in response to ketamine, and that might give us insight into potential biomarkers. These children have language problems, behavioral problems, and sleep problems. There are a lot of issues that go along with ADNP syndrome that we’re hoping to potentially address.”

The promise of ketamine may also extend to larger populations of individuals with autism who do not necessarily have ADNP syndrome, according to Dr. Kostic. “It could have beneficial effects in people who don’t have the same mutation but who have similar deficits.”

Access to high-quality genetic technology has become increasingly affordable over the past several years and has enabled more families to receive accurate and earlier diagnoses of many disorders, including autism. In most cases, the younger a child receives intervention, the better their chances of improvement. Earlier diagnoses, and a potential treatment such as ketamine, provide Mrs. Sermone and other committed parents with hope.

“It’s incredibly important because, currently, there isn’t one single treatment for our children with ADNP syndrome,” says Mrs. Sermone. “Our kids don’t produce enough of the ADNP protein. It’s like they’re running on half a tank of gas. To improve the quality of their lives—for us, that would be amazing.”

 

Study Finds Grandparents and Teachers Often Are Among the First to Suspect Autism

Joseph D. Buxbaum, PhD

Children who have older siblings or frequent interaction with grandparents are diagnosed with autism spectrum disorders (ASD) earlier than those who do not, according to new research conducted at the Seaver Autism Center for Research and Treatment at Mount Sinai, and published in the journal Autism.

The study, titled “Grandma Knows Best: Family Structure and Age of Diagnosis of Autism Spectrum Disorder,” found that about 50 percent of friends and family members reported they had suspected a child to have a serious condition before they were aware that either parent was concerned. Maternal grandmothers and teachers were the two most common relationship categories to first raise concerns. “Our work shows the important role that family members and  friends can play in the timing of a child’s initial diagnosis of autism,” says Joseph D. Buxbaum, PhD, the G. Harold and Leila Y. Mathers Research Professor, and Professor of Psychiatry, Genetics and Genomic Sciences, and Neuroscience, Icahn School of Medicine at Mount Sinai, and Director of the Seaver Autism Center. He is senior author of the paper, which was published online February 8, 2017. The study included colleagues at Columbia Business School and Carnegie Mellon University.

The team conducted an online survey of 477 parents of children with autism. In addition, they carried out novel, follow-up surveys with 196 “friends and family,” who were referred by parents. Eighty percent of the children with ASD were boys, and the median age of diagnosis was 33 months. Frequent interaction with a grandmother reduced the age of diagnosis by 5.18 months,  and frequent interaction with a grandfather reduced the age of diagnosis by 3.78 months. “Since early detection of ASD is critical to effective treatment interventions, we hope the study will serve as a call to action to encourage family and friends to share concerns early on,” Dr. Buxbaum says.

In other news, the Autism Sequencing Consortium, a multi-institute research group founded by Dr. Buxbaum, has received a $7 million extension of a grant from the National Institutes of Health to collect, analyze, and share samples and genetic data from people diagnosed with autism.

The Consortium now includes more than 40 international groups and 150 researchers who have generated gene sequencing data from 29,000 individuals, making it the largest such study to date in autism. All shared data and analyses are hosted on a supercomputer called Minerva, designed by Mount Sinai faculty, which enables joint analysis of largescale data. The new grant will extend the project through 2022 and expand the sample to include more than 50,000 individuals.

Autism Research and Community Engagement Are Tightly Linked at Mount Sinai’s Seaver Center

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As part of an outreach program created by the Seaver Autism Center for Research and Treatment, children with autism have an opportunity to visit the American Museum of Natural History.

One Saturday morning each month, the American Museum of Natural History in New York City opens its doors an hour early to welcome a special group of visitors: children with autism and their families. What they experience is more than a simple stroll through the museum’s labyrinthine exhibition halls. Specialists at the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai have taught museum tour guides and volunteers how to engage and interact with children with autism spectrum disorder (ASD). The Seaver Autism Center has also developed social stories, visual cues, and prompt cards for these visits and has chosen to tour specific halls (Dinosaurs, North American Mammals, Planet Earth, and Ocean Life) based on their ability to meet the children’s sensory needs.

The three-year-old program has been “hugely successful,” says Michelle Gorenstein-Holtzman, PsyD, Assistant Professor of Psychiatry at the Mount Sinai Health System and Director of Community Outreach for the Seaver Autism Center for Research and Treatment. Specialized tours of the museum are continually booked, and exhibits are being added to keep up with the program’s popularity.

“I think you’re going to see more and more museums adopt specialized programs such as this, due to the growing demand,” says Dr. Gorenstein-Holtzman. She is helping the Long Island Children’s Museum—where she is an advisory board member—develop such a program.

The museum connection is a natural fit for the Seaver Center, which uses community outreach to share its knowledge and resources with patients and families across the tri-state area. Supported by a grant from the UJA Federation of New York, Dr. Gorenstein-Holtzman develops evidence-based social skills programming for children, adolescents, and young adults with ASD. The children’s lessons focus on play and conversational skills, while the newly developed young adult curriculum focuses on employment-based social skills.

Citywide outreach also takes the form of a Community Lecture Series held at schools and local meeting halls and a Distinguished Lecturer Series that shares the latest autism research in areas such as epidemiology, genetics, and early detection that are relevant to caregivers and professionals. “What’s unique about the Seaver Center is that we don’t confine our research to the lab,” says Dr. Gorenstein-Holtzman. “We’re continually disseminating our findings to the community so that they have greater meaning.”

In addition, the Seaver Center is translating its materials into Spanish and offering its services to Spanish-speaking families. Pilar Trelles, MD, a child psychiatrist and Seaver Clinical Fellow, is the principal investigator on a research project that partners Latino families of children who are newly diagnosed with autism with “peer advocates” in their community. The peer advocates are actively engaged parents with special-needs children themselves, who have received training from the state. They help newcomers navigate the system, which can often seem complex and overwhelming.

“One of the things that’s important to us is reaching out to minority families who have little idea what we do or how to access the programs we provide,” says Dr. Trelles. “Peer advocates understand what these families are going through and can relate to them in ways that others can’t. They’re able to give them hope that things are going to get better and that their children are going to get the help they need.”

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