National Autism Network Community Blog List
Community Blog List Syndication
01/20/2017 10:04 PM
Members Blog - How Shakespearean Therapy Helps Kids with Autism
It’s no surprise that children with autism spectrum disorder (ASD) have unique needs, and there are now many therapeutic approaches and methods to help these children learn social skills. Since many children with ASD struggle with maintaining eye contact, recognizing emotions, and taking turns speaking, they may need to work with a mentor or teacher to learn these core skills in a safe environment.
Kelly Hunter, a British actress for the Royal Shakespeare Company, has developed a unique method of teaching children. She noticed that many of the ASD students she taught in her Shakespeare program responded very well to the rhythm of the iambic pentameter and exercises that allowed them to flex their imagination.
She named it the Hunter Heartbeat Method about 10 years ago and it has since helped many children with ASD thrive. These are set up as one-hour therapy sessions where a small group of children with ASD sit with a student actor from the university’s theatre department and play sensory drama games. They get a chance to act out different emotions and verbally identify emotions based on the facial expressions they see firsthand. This helps them better understand emotional states of other people and react appropriately.
Several other drama therapy studies have shown many positive results. Researchers at Vanderbilt University found that children with ASD showed a significant improvement in communication, social skills, and memory after completing a 10-week drama therapy program. A year-long study at the Centre for the Arts in Human Development at Concordia University in Montreal also demonstrates the efficacy of drama therapy in pre-adolescent children with high-functioning ASD.
Children with autism often have a hard time trying new activities, making friends and understanding non-verbal gestures. They may struggle throughout school and into adulthood when they don’t fully develop important social skills. Shakespeare’s work, especially many of his dramatic plays, allows for a full exploration of human expression, communication, and emotion. Students with autism can socialize and learn in a safe environment as they improve their understanding of language and communication skills with drama therapy.
This article was originally published on SailsGroup.org
01/12/2017 09:55 PM
Members Blog - What “Autism in Love” Teaches Us About Romance On and Off the Spectrum
Finding love is rarely an easy pursuit, but it’s one that millions upon millions embark upon once or more in a lifetime. For people with ASD (autism spectrum disorder), it can be even more difficult. Romance is all about identifying and expressing emotions, something that can be challenging to autistic individuals.
That said, it’s a common misconception that people with autism can’t lead normal, healthy adult lives, holding stable jobs, marrying, and starting families. Many can, and plenty do. It is, however, a unique challenge. The PBS film “Autism in Love” explores how the disorder can complicate romantic relationships, and how couples work to overcome this struggle.
Director Matt Fuller’s documentary debut, which initially premiered at the Tribeca Film Festival, weaves together three narratives of autistic people navigating life and love. The film humanizes the experiences of people with autism by tapping into the raw, painful, and powerful emotions most of us have felt when forming and maintaining romantic relationships.
The first storyline details the life of a young single man on the autism spectrum. Lenny Felix is unemployed and lives with his mother, but yearns for a romantic partner. Lenny’s autistic traits and old-fashioned expectations make it especially difficult to find a girlfriend — especially considering he refuses to date a woman more financially stable than himself.
The second storyline follows a middle-aged couple, both suffering from intellectual disabilities. The husband, Stephen Goodman, has Aspergers and exhibits savant intelligence, while his wife Geeta is suffering from cancer. This story shows the difficulty of not only being in a longterm relationship as a person with autism, but reckoning with feelings of grief when a loved one is sick.
The last narrative provides a lighter love story between two high-functioning people with autism, Lindsey Nebeker and Dave Hamrick. The couple have been together for a decade and have learned to coexist and care for one another in spite of their individual quirks. Over the course of the documentary we see Dave working up the courage to propose to Lindsey, and backing out each time he tries until he finally goes for it.
The documentary transcends its topic by relating to the common anxieties we all share about life and love. The struggle to settle down and find “the one” in a world that is not as neat as a storybook is real for all of us. As Lindsey says in the film, “our experiences, our desire to feel love are just as genuine, if not more intense, than anyone else’s.”
You can stream the film now on Netflix.
This article was originally published on SailsGroup.org
01/07/2017 09:11 PM
Members Blog - How Technology Helps Individuals With ASD Thrive
Our technology-saturated world is not all fun and mobile games. Technological innovation has fundamentally changed business, healthcare, entertainment and just about every facet of life you can think of. Like every other powerful, global phenomenon, it has the potential to create great good as well as great harm. On the positive side of this spectrum, technology has been a huge boon to children and adults living with Autism Spectrum Disorder (ASD).
The right technology can help people on the autism spectrum improve their verbal skills, social skills, and develop confidence. Parents of autistic children should be relieved to know that by and large technology is not a harmful agent, but a tool to aid in their children’s development.
To understand why technology can help children with ASD, we must first look at ASD itself. The characteristics of ASD — diagnosed in one in 68 children — lend well to technological aids. Those on the spectrum often have difficulty with communication and trouble with social cues. They also tend to learn better through visuals than processing written or verbal information. This makes mobile technology especially useful, as it can be visually customized to help users communicate and give nonjudgemental directions and cues.
In education, technology is changing the game for special needs students. Apps like SceneSpeakand Speech with Milo help verbally challenged students keep up with curriculum. For those that may struggle in a traditional classroom setting, special schools like the STEM3 Academydevelop immersive programs that help develop STEM skills in children with ASD. Given 34 percent of ASD college students pursue STEM majors, these technology-intensive programs nurtures students’ natural skills along with building collaborative and social skills.
Technology can help people with ASD overcome their social anxieties both in and out of the classroom. Personalized wearable technology, for example, can help autistic adults manage their anxiety. Research found that wearers of a wristband called “Snap” could fiddle with it, as people often do when anxious, then view the data to reflect on the anxiety’s cause. The custom-made device can also signal support-givers when the wearer’s anxiety is too high. Overall, it was found to be therapeutic to users.
For parents of younger children, technology is also a saving grace: smart homes provide relief for parents by monitoring movement to detect and notify when an autistic child wanders outside of range. Even more future-forward is virtual reality, which has been tested to help autistic children and teens develop social skills by putting them in virtual scenarios like interviews or first dates.
As much as naysayers may claim technology is destroying the fabric of society, for some of the most vulnerable among us it’s clear that the opposite is true. As we move into the future, we can expect this trend to continue supporting those that need it.
This article was originally published on SailsGroup.org
12/21/2016 06:16 PM
Members Blog - A New Precedent for Autism Coverage Under UnitedHealthcare
For years, autism activists have been working with state legislatures to require insurance companies to provide covered care for Applied Behavior Analysis (ABA) and other autism treatments. Big strides were made with Obamacare, with 29 states in the Health Insurance Marketplace now covering ABA as an Essential Health Benefit. This allows residents of 29 states in the U.S. to choose plans that best address their autism treatment needs.
ABA treatment should be available, affordable and accessible to residents of all 50 states, however. That’s why the recent news from major insurance provider UnitedHealthcare is so important. Beginning in 2017, UnitedHealthcare will offer ABA coverage as part of its standard benefits package for all insurance holders, regardless of whether they happen to live in one of the 29 states that have passed the autism insurance mandate.
United already covers ABA treatment for fully insured group members in the mandated states, and for those who elect it under self-funded plans. Beginning next year, the universal coverage of ABA treatment will make autism treatments much more affordable and accessible to a huge demographic of the population, regardless of what state they live in. This is a huge step forward in the democratization of autism treatment. With the country’s biggest insurance provider making this important statement about equal access to autism treatment, we can hope to see other insurance companies follow suit in the near future. There is a new precedent for autism treatment being established as we speak.
This news signals a turning point in the public discussion of autism. By normalizing treatment for this common disability, we can begin to work toward more effective solutions for more people on the spectrum. I am elated to share UnitedHealthcare’s ABA coverage news, and I look forward to it helping more people get the right insurance to access proper treatment and services. Families looking to choose the right insurance plan can start by visiting theMental Health & Autism Insurance Project guide for helpful information on different options and benefits.
SAILS Group and Patterns, our ABA company, often work hand in hand with customizing this type of autism care for individuals and families. We look forward as an organization to facilitating rehabilitation and treatment for people across the country, in all 50 states, who need a helping hand in caring for those living with autism.
This article was originally published on IhabShahawi.com
12/16/2016 03:41 AM
Members Blog - Four Areas of Promise in Autism Research
Four Areas of Promise in Autism Research
The last decade has proven a golden age in autism research. Today researchers are getting closer to truly understanding the epidemiology behind the genetic, neurological, and environmental factors that contribute to the onset of Autism Spectrum Disorder (ASD).
The research thus far has provided us an enormous amount of scientific data that is already helping families, autism caregivers, doctors, and children living with ASD to better treat and understand this condition.
Currently there are four areas in autism research that are the most promising today. These significant advances will help identify and treat the intellectual and developmental disabilities caused by ASD.
1. The Brain-Immune System Connection
In a study published in Nature in March 2015, autism researchers discovered a lymph networklinking the brain and the immune system. This newly found lymph network has more of a link between the brain and the immune system than previously believed.
So how does this relate to autism research? Researchers of the study believe this new discovery will open up new avenues to understanding the immune system’s role in brain conditions such as autism, alzheimer’s, multiple sclerosis, and more.
While the research is still young, more studies will need to be conducted in the future to see if there is any link to ASD. But, autism researchers are excited about its potential in being able to identify specific mechanisms that may control behavioral and medical issues that may arise in cases of autism.
Research in the field of epigenetics (factors that control gene expression, including genes and environmental factors) is starting to uncover a closer link between genetic and environmental factors that may have an important role in understanding autism.
Epigenetics has already helped us understand the interaction between genetics and environment and how it plays a role in the development of ASD. While epigenetics requires brain tissue for further research, the nonprofit organization Autism Speaks created a brain tissue program called Autism Tissue Program (ATP) in order to help researchers with their studies.
While only small strides have been made in epigenetics, autism researchers agree that more research might lead to possibly discovering how to prevent, or even reduce the risk of autism in the future.
3. Largest-Ever Genome Study
The largest genome study to date is being undertaken by Autism Speaks. The organization helped create ‘MSSNG,’ an open-science database of genome data collection that gives doctors around the world access to 10,000 sequenced autism genomes.
The MSSNG database will help advance autism research at a faster pace by making open-access genomics available to doctors and researchers worldwide. While conducting the study so far, researchers took a sample of 340 whole genomes from 85 families, each with two children with autism. 69% of the children surveyed did not share the same gene variations that are known to contribute to autism, while 31% of children did, changing a long-held beliefthat siblings have similar at-risk genes for autism; rather, they discovered siblings have different autism-risk genes.
Findings from the research so far challenges the conception that genetic factors are the only contributing factors of ASD. The MSSNG project will be an on-going study that will help autism researchers use the data to report and find even more complex genetic risks to the causes of autism.
4. Detecting Autism Before Diagnosis
A study published in the Journal of the American Academy of Child & Adolescent Psychiatryconcluded that parental concerns of children aged 6–12 who were at high risk for ASD will be able to identify and detect early signs that will aid in earlier intervention therapies.
The study will play a critical role in the development of children with ASD early on, and will provide parents that suspect their children may have autism with information and research on what to look for when the child is young.
This article was originally published on SAILSGroup.org
12/01/2016 07:22 PM
Members Blog - 4 Bloggers Spreading Awareness & Hope To Families With Special Needs
What is most noticeable about parents who have children diagnosed with severe autism is their ability to be humble, frank, and among other things, patient — especially with people who don’t understand the realities of autism. Started by 46-year old Frank Campana, whose son 13-year old son Kyle has severe autism, the Autism Daddy blog is a candid take on the day-to-day of parenting an autistic child. Campana’s Q&A section is very informative for people who also have autistic children as well as those who have limited exposure to it.
The blog covers everything from how to deal with doctors, blood draws, to how to keep your marriage strong through the challenges of raising an autistic child.
Frank Campana has been chosen by Utah Valley University to give a presentation called “Things No One Ever Told Me After My Kid Was Diagnosed with Autism” to over 500 people which received positive reviews. Though this site’s moniker suggests it’s for dads, it’s helpful for mothers and others as well.
Follow him on Facebook: www.facebook.com/AutismDaddy
Bird on the Street
The more we hear about autism, the less it seems people understand — which is why it’s important we spotlight and feature blogs that realistically touch on the subject of autism and special needs.
In one word, Bird on the Street can be heart-wrenching: for good times and for bad. “Katy Bird” (as her husband calls her) writes a blog that is informative, conversational, and compelling because it so deeply personalizes this mother’s struggles and joys. Perhaps her Southern roots give her the ability to draw the reader in with her storytelling style of writing, which is equal parts sorrow and playful humor.
Though Katy is not raising a child with autism, her personal experience raising a child with cerebral palsy translates across medical conditions. From dealing with the prejudices, stares, and misconceptions of other people, to the sometimes isolating nature of raising a child with special needs, Katy’s blog will in many ways ring true with parents of autism.
Follow her on Facebook: https://www.facebook...birdonthestreet
What separates this blog from the other two is that it is written in the perspective of someone who is autistic. Lydia’s blog, oftentimes described as a look at autism from the “inside out”, will evoke a visceral response from those who are parents, caregivers, as well as those who are autistic.
There are many blogs that journal the lives of the caregivers of autistic or special needs children, but very few that come from this viewpoint.
Lydia details everything from spending 15 months in a nursing home for autistic patients to an autism specialist informing her that her development would peak at 21-years old. Through it all, Lydia prevailed.
As of last year, Lydia carries a B.S. in Elementary Education and an M.A. in English & Creative Writing. Through her documentation of her journey in life (and through ERs), the reader will root for her and share in her triumphs.
Follow Lydia on Facebook: https://www.facebook...AutisticSpeaks/
Four Plus an Angel
The first thing you may notice about Four Plus an Angel blog is the writing of Jessica Watson. A highly adept author with multiple bylines in Cosmo, the New York Times, and the like, Jessica also happens to be a mother of four (a fifth was lost to her, hence the name of the blog). The blog not only chronicles the story of her oldest daughter Ashlyn, who was diagnosed with autism 12 years ago, it details the story of how she lost one of her triplets in painful emotional detail. For parents who have experienced loss in their lives, Watson’s blog is an essential read. Most importantly, Four Plus an Angel dwells only in Jessica’s ability to hold onto hope instead of sorrow.
A majority of bloggers address the difficulty for parents and their male autistic children; Four Plus an Angel is helpful to parents who find themselves in the rarer position of raising an autistic girl. With this blog, you can commune with Jessica and her oldest daughter Ashlyn as she details their lives together in beautiful pictures and writing. Her site is simple and classic, and the writing matches that theme.
You can read her blog and follow her on Twitter: https://twitter.com/jessbwatson
Just ten, even five years ago, websites like these didn’t exist. Because of blogs like these, there has grown a slew of wonderful stories, articles, and a camaraderie amongst children and adults with autism and the people who care for them. But these are just a few blogs that are a great addition to your daily read.
For a longer list of bloggers, visit: https://www.kwikmed....2-autism-blogs/
This article was originally published on SailsGroup.org
11/11/2016 05:00 AM
Members Blog - 3 Successful Non-Aversive Autism Treatment Strategies
Among the many challenges that parents face when their child is diagnosed as being on the Autism Spectrum, one of the most important decisions is how to go about treatments. There are a litany of options available to parents and caretakers, and deciding which works best for their family can be overwhelming, even with the aid of medical professionals.
One of the more prevalent debates in the history of autism has been whether to use aversive or non-aversive treatment methods. Which method has more effective and longer lasting results? Researchers have overwhelmingly proven that a non-aversive positive reward based approach is a more effective way to behavioral change.
Today we’ll be looking at some of the more popular non-aversive approaches, which heavily emphasize positive behavior strategies, as opposed to punishment or taking things away, which are consequences associated with aversive techniques. The encyclopedia of Autism Spectrum Disorders defines non-aversive treatment as:
“…intervention (that) involves the application of positive reinforcement and/or extinction contingencies as a consequence to a behavior, or alteration of the intensity, duration, or magnitude of a behavior contingent upon the removal or presentation of an antecedent stimulus.”
Some of the top non-aversive techniques in autism treatment include the following:
1. Adapting The Environment
Changing an autistic individual’s environment to reduce behavioral episodes can be an effective technique. Removing stimuli — such as persons, locations, or situations that are observed to create tension, anxiety, and frustration — can have a soothing effect. Providing organized and consistent structure is also key. This can be achieved by planning calendars of activities and consistent routines, thereby limiting unexpected events that could cause stress. It can also be helpful to inform others who may come into contact with the individual, so that they may avoid introducing stressful stimuli and aid in behavior observation.
2. Positive Behavior Supports
This technique refers to a behavior management system used to understand the reasoning behind inappropriate behavior, instead of simply reprimanding that behavior. By developing individualized positive behavior support plans, a caregiver builds pride in accomplishments and instills a sense of responsibility in those on the spectrum. This can help reduce the anxiety that often leads to aggressive behaviors exhibiting themselves in the first place. Some helpful strategies for yielding these type of behavioral supports include:
3. Teach Replacement Skills
The goal here is to replace potentially inappropriate behaviors with more adaptive skills, focused on communication, social skills, and self-regulation. These skills can be established in several ways, such as:
- Celebrating strengths and successes by accentuating positive feedback.
- Respecting and listening to the child and their reasoning for their actions.
- Validating the child’s concerns and emotions instead of brushing them off.
- Providing clear and concise expectations of behavior.
- Ignoring challenging behaviors, and staying the course despite them.
There are many potential benefits to non-aversive therapy. Instead of simply doling out punishment for the individual on the spectrum’s outbursts, these techniques instead aim to avoid the situations, persons, and behaviors that trigger outbursts in the first place. In this way, the quality of life for everyone involved can be improved with an optimized environment, positive behavior supports, and replacement skills firmly in place.
This post was originally published on SAILSGroup.org
- Developing functional communication skills, be they language, sign language, or device interaction that helps the individual to go through their daily activities.
- Using social stories to build social awareness and skills.
- Creating an activity schedule to reduce anxiety and promote independence.
11/04/2016 04:05 PM
Members Blog - The Power of Comics: Showing the Autism Spectrum
This post was originally featured on SailsGroup.org
The autism spectrum has typically been visually represented as a linear progression, with “not autistic” on one end, and “very autistic” on the other. The problem with this understanding of the spectrum is that it oversimplifies a complex medical condition and does not account for the myriad complexities in human brain processing. Autism is a spectrum as diverse as the rainbow, and it’s about time we had a more holistic representation of the many ways it can affect individuals.
So it’s no surprise that a comic depicting the spectrum in a novel way recently went viral online, specifically being shared by caregivers and people with autism. Created by artist Rebecca Burgess, the visualization takes the spectrum beyond black and white, into more productive territory for diagnosing ASD and being aware of how to address it in settings like the classroom.
In the comic, we follow a boy named Archie who has been diagnosed on the spectrum. However, we see how labeling Archie as either “very autistic” or “less autistic” isn’t helpful or accurate to him, his caregivers, or those he interacts with on a daily basis.
It’s not about being a little or very autistic, but rather which areas of the brain are most affected in an individual on the spectrum. The comic reimagines this spectrum as a color wheel, with different areas for perception, motor skills, language, sensory filter and executive function. Each person with ASD displays different traits in these areas — but their brain functions just like a non ASD person in the other areas — which a linear spectrum doesn’t account for. Portraying the huge range of the spectrum in a clear way that many people unfamiliar with ASD can understand is a great step for improving the public awareness of autism.
At The SAILS Group we value the importance of approaching ASD from a holistic and non-averse treatment standpoint. That’s why we’re thrilled to see the strong reception of an important piece of social art that demystifies one of the pervading myths surrounding the autism spectrum. Well Done!
10/28/2016 04:42 PM
Members Blog - Autistic Student Creates Design Fit for the White House
Michelle Obama’s glamorous wardrobe often generates sales for the designers she wears. Case in point, at the president’s most recent State of the Union address, the first lady’s marigold Narciso Rodriguez dress sold out almost immediately.
But it’s not just Ms. Obama’s fashion choices driving public interest. Upon her visit to the White House on August 2, Singapore Prime Minister Lee Hsien Loong’s wife Ho Ching sported a funky dinosaur clutch. The item, designed by 19-year-old Seetoh Sheng Jie, also sold out in a matter of days.
The difference? While the first lady’s look was a boon for the designer and Neiman Marcus, where the dress was on sale for $628, Ho Ching’s pouch came from the Art Faculty, a platform for autistic students at the Singaporean school “Pathlight”. Student Seetoh, a dinosaur enthusiast, earns royalties from the sales of the $11 pouch along with the program.
Public figures’ fashion decisions can be wildly impactful, especially at red carpet events or political meet and greets. Singapore’s first lady’s choice to showcase a bag from the Art Faculty reflects her down-to-earth nature and philanthropic sensibility. To the school’s honor and surprise, Ho Ching took three separate bags on her trip to D.C. Seetoh, though unaware of the larger impact, was “just happy” someone liked what he made.
The Art Faculty features the work of Pathlight students and alumni, acting as a gallery, workshop, shopping venue and art cafe. Pathlight is the first autism-focused school in Singapore, offering a unique blend of traditional academic programs and life-readiness skills. Established by Singapore’s Autism Centre in 2004, the school has grown from 41 to over 1,000 students in just 12 years.
Autistic individuals often take a strong interest in niche subjects and become experts on these, developing a specialty the Art Faculty then puts on display. Seetoh, for example, knows the spelling of every dinosaurs full, paleontological name and draws each figure from memory. Other students are similarly focused on the subject matter they draw, from animals to architecture and ancient warships. Those not local to the shop can make purchases anytime online where they can also learn about each artist. Prints are available on t-shirts, bags, stationery, and more.
It all goes to show how a simple choice of bag, dress, or notebook can spread awareness. Though Michelle Obama and Ho Ching may have more influence than the everyday person, each purchase in support of special need individuals makes a difference — and a great statement, too.
This article was originally published on SailsGroup.org
03/17/2016 07:15 PM
National Autism Network - Regression in Autism: What We Know
New evidence has revealed a “near universal” truth about an aspect of autism that has traditionally been a highly debated topic in the field. We are referring to the presence of regression, or a loss of skills, in autism. There are anecdotal reports from parents about children who seemingly develop typically for the first years of life only to quickly shed their learned skills. A prominent example is that of Life, Animated author Rob Suskind and his son Owen, who at around three years of age, in the words of his father, “became mute. He suddenly didn’t sleep or eat, and cried inconsolably.”1 Parent reports such as these have traditionally been highly controversial in the field of autism, but new evidence on regression and autism makes “clear that researchers no longer doubt parent reports of the heartbreaking loss of language and social skills seen in some young children with the disorder.”2 Infamously, the idea that regressive skills in autism are linked to vaccines was due to Andrew Wakefield’s now retracted and debunked 1998 study which concluded the MMR vaccine was the root cause of a loss of skills seen in 8 out of the 12 children within the study.3 While the link between vaccines and autism has been wholly disproven, the idea that typically developing children can experience some form of regression, whether it is the subtle loss of mastered skills over a long period of time or the more controversial and incredibly rare dramatic loss of skills in a matter of weeks, is alive and well. In fact, recent research has strengthened the evidence for regression in autism, but suggests the loss of skills are normally less dramatic than parent reports would indicate and are thought to be a result of processes within the developing brain, rather than stemming from influential environmental factors. These new findings also indicate regression occurs over a long period of time (several months) and influences a great percentage children on the spectrum.4 This article will briefly explore the history of how researchers viewed regression in autism and the recent work that has caused the autism community to rethink its view on regression.
A Brief History of Regression in Autism
A loss of skills has been associated with developmental disorders decades before the term “autistic” was coined in the 1940’s. In 1908, Theodor Heller first described dementia infantilis, which “requires that a typically developing child over 2 years of age undergo a severe and mostly irreversible regression of developmental gains, including speech, sociability and self-help skills.”5 Most recently, these symptoms were used to describe a rare disorder known as childhood disintegrative disorder, which made its introduction into the DSM-IV in 1994 only to be absorbed under the umbrella term “Autism Spectrum Disorder” in the most recent edition of the DSM.6-7 While childhood disintegrative disorder was rare, some researchers believe there is enough evidence to identify CDD as a specific subset of autism.7 A 2012 article discussing the removal of CDD from the DSM-V states that “childhood disintegrative disorder represents a process sufficient to cause autism, but that it is different from the mechanism that leads to autism in children without regression… doing away with a separate diagnosis of childhood disintegrative disorder would hinder research efforts into better understanding autism.”5 Although the committee felt there was a lack of evidence to justify CDD as a separate diagnostic category in the DSM-V, there is evidence of children who have undergone dramatic regression at around their 3rd birthday or later, but thankfully it is rare, with the Autism Program at Yale estimating that 1-2 children per 100,000 meet the definition for CDD.8 While the onset of regression in autism passed the age of 3 is rare, research has found that “toddlers who abruptly lose language, social, or other developmental skills are more likely to have severe autism a few years later compared with children who have consistent delays from an early age.”9 A 2010 study conducted by the Interactive Autism Network (IAN) drew from online surveys of parents of 2,720 children with autism, and specifically found that “nearly 30 percent of children who regress never attain conversational speech” and that “at school, nearly 70 percent of children who regress are placed in special education groups, and 56 percent need a professional aide.”9 However, like many findings regarding autism, these results contradict earlier research findings which indicate “at 3-4 years of age, children with autism with early vs. late onset of symptoms, and with vs. without a history of loss of skills (regression) were not found to differ on standardized tests of verbal and nonverbal IQ and observational measures of autism symptom severity.”10 A 2011 study mirrors these findings.
The previously mentioned IAN study utilized the categorical system developed by Sally Rogers of USC M.I.N.D. Institute, which breaks down autism into three patterns of onset:11
1. No period of typical development- Autism symptoms are present from birth
2. Developmental plateau- Child begins to reach developmental milestones and then stops acquiring new skills
3. Regression- Child loses skills
Until recently, the percentage of children thought to experience regression in autism has varied, from 13 to 50 percent of all autism cases exhibiting hints at regression.12 A 2010 examination of regression in autism by the Interactive Autism Network determined regression, which was defined as “previously acquired social, communication, or cognitive skills prior to 36 months,” was apparent in 44% of cases.13 However, a recent NIH workshop held in February titled “Loss of Skills and Onset Patterns in Neurodevelopment Disorders: Understanding the Neurobiological Mechanisms” presented evidence that led to the consensus that “regression may represent a near-universal aspect of autism that can affect far more developmental skills than just speech.”2
Research has shown that despite parent reports insisting on a total loss of skills, most the children who undergo a regression of skills “do not have typical development to begin with. Instead, they have early delays and lose some of the skills they had attained.”14 A 2013 study came to this conclusion when they measured skill attainment and loss through “15 socio-communicative items” and found that “regardless of how many skills were developed, the loss of all skills was uncommon, occurring among only 6% of children with [autism].”15 It has been suggested that the primary reason for parents perceiving their child has suffered dramatic and sudden regression is that they are not attuned to the developmental trajectory that accompanies many skills. For example, a skill such as speaking is dependent upon the acquisition of information typically gained in the first year of life, but speech itself usually fails to become apparent until age 2. Parents may fail to notice this trajectory because “if language development is impaired during the first year, a child’s difficulties may not be apparent until the age at which he or she is expected to talk. What presents as a dramatic decline in behavior may actually be a reflection of accumulating abnormal neurobiological functioning, rather than a sudden change.”16 Others have suggested that these children weren’t using language as a communicative tool at all, but they were merely echoing sounds they heard from their parents.17 A 2010 study hints at the notion that parents underestimate regression as researchers recorded a “17 percent regression rate as reported by parents, [but] found that 86 percent of the children showed a decline social skills.”12 Interestingly, a study published in 2013 found regression occurs on average at 1.78 years of age, which coincides almost precisely with the average age of development for speech in children.18 Moreover, evidence from imaging studies suggest that changes in brain development coincide with observable behavioral changes which means “the onset of symptoms that parents are seeing with regression seems to be happening in parallel with the changes in brain development.”4
The Origins of Regression
For years, researchers have been searching for biomarkers that suggest autistic regression could be a distinct subgroup of autism, but have mostly been met with “dozens of contradictory behavioral, physiological, and genetic studies [that] have left the field no closer to finding the answer.”17 However, recent presentations at the international workshop on regression in February are shedding light on potential underlying mechanisms involved in regression and autism. Unlike some past studies which defined regression mainly “as loss of speech without including broader acquisition or loss of other socio-communicative factors,” researchers from the recent workshop suggest regression can affect far more developmental skills than just speech, and “can take the form of subtle losses in motor skills and attention to social cues.”2, 15 Kasia Chawarska, a baby sibs researcher with the Yale Child Study Center and presenter at the February workshop on regression, suggests that “If one looks just at loss of language in toddlers, then regression is evident in about 15 percent of children with autism… But if one looks broadly at other areas of development and at younger children who are not yet speaking, then regression becomes evident in at least 80 percent of children who have autism or will go on to be diagnosed with it.”2
A 2004 study aimed to identify the factors involved in the etiology of regressive autism by evaluating 82 children with autism but found that the “results confirmed previous findings of minimal differences in child characteristics, family history, prenatal and perinatal factors, developmental concerns, behavioral concerns, and medical findings in children who regress.”19 A 2006 study attempted to link genetics with an increased risk of regression in ASD but the “genetic linkage study show[ed] that multiplex families – those with two or more children with autism – are no more likely than average to share genes that had been previously linked to regression.”17 Other studies have linked regressive skills in autism to GI issues. A small study published in 2013 focused on dendritic cells, which play a particularly powerful role in the immune response to microorganisms, and found that “children with ASD had significantly more dendritic cells than did typically developing toddlers. Higher levels of one type of dendritic cell (plastmacytoid) related to developmental regression…This later-onset pattern also related to enlargement of the amygdala. Previous studies have likewise linked enlargement of this brain structure with autism.”20 In fact, one of the first publications from the Autism Phenome Project came in the form of a preliminary study that found that “larger brains may be associated with regressive autism, but only in boys.”21 The findings that brain overgrowth is linked to regression were substantiated by presenter Jason Wolff at the aforementioned international workshop as he discussed a study which utilized brain imaging techniques to find an association of “regressive autism with overgrowth of the brain in the first year of life. Often, this period of overgrowth is followed by a marked slowing of growth so that the brain ends up smaller than average by age 3.”2 A presentation from Annette Karmiloff-Smith during the same workshop on regression also points to the developing brain as a potential cause for regression as the loss of skills in autistic regression may stem from too much of the otherwise normal pruning away of excess brain connections during early brain development.2 In her own words she explains that their “hypothesis is that in autism spectrum disorder, there’s an imbalance between the strengthening and pruning away of brain connections. It may be that the threshold is very high for pruning. So that [the brain] prunes away not just the weak connections but also the connections that should be strengthened.”2 However, even Karmiloff-Smith admits that more research needs to be done to determine if “overaggressive pruning” of brain connections is indeed behind regression in autism.2 Others have suggested in most cases “changes in development and loss of specific skills are occurring over an extended period of time. So we should likely be focusing on processes that influence brain development over time.”4 These studies were conducted utilizing baby siblings, which are an invaluable asset to the autism research community. Baby siblings can provide strong scientific evidence related to ASD because “autism tends to run in families, around one in four baby sibs will develop autism by age 3. Another one in five will develop some autism symptoms, though not to the degree that brings a diagnosis of autism.”2 By studying baby sibs, researchers hope to unlock the mysteries of autism, including the prevalence of regression in autism, its underlying mechanisms, and how loss of skills can be prevented in the first place.
This article strives to bring its readers a complete picture of regression in autism and how the phenomenon has been viewed by the researchers within the autism community over the years. However, the picture still remains incomplete, even to researchers. It seems that researchers now agree that regression typically takes place over a period of significant time, rather than just a few weeks, and can take several subtle forms. Based on this information, it is recommended pediatricians not only look to detect the red flags associated with autism during pediatric checkups, but also discuss how the child’s skills are developing between appointments and if there is developmental slowing.4 Those who are interested in exploring regression and autism further should check out the resources below which link to many of the studies or summaries of the studies referenced within this article. The details found within these resources will provide readers with important background information, an idea of potential future research studies focusing on regression, and insights on aspects of regression not discussed in this article, such as the relationship between regressive autism and race.
- IAN Research Report #6: Regression- This is a breakdown of regression in autism from the Interactive Autism Network. The article includes findings from members of their own community with regards to their experience with regression within their children.
1. “Life, Animated: A Story of Sidekicks, Heroes, and Autism.” Ron Suskind. (blog). Accessed March 15, 2016. http://ronsuskind.co.../life-animated/.
2. “Researchers Say Regression in Autism Common, Variable, Maybe Universal.” Autism Speaks, Inc. February 22, 2016. Accessed March 15, 2016. https://www.autismsp...maybe-universal.
3 “Autism and Vaccines.” National Autism Network. May 23, 2012. Accessed March 15, 2016. http://nationalautis...d-vaccines.html.
4. “New Findings on Regression in Autism: A Researcher’s Perspective.” Autism Speaks, Inc. Accessed March 15, 2016. https://www.autismsp...ers-perspective.
5. Pelphrey, Kevin and Westphal, Alexander. “In Defense of Childhood Disintegrative Disorder.” Spectrum, April 3, 2012. Accessed March 15, 2016. https://spectrumnews...ative-disorder/.
6. Charan, Sri Hari. “Childhood Disintegrative Disorder.” Journal of Pediatric Neurosciences 7, no. 1 (Jan-Apr 2012): 55-57. http://www.ncbi.nlm....les/PMC3401658/.
7. Wright, Jessica. “Rare Regressive Disorder is Not Autism, New Findings Suggest.” Spectrum, May 15, 2015. Accessed March 15, 2016. https://spectrumnews...ndings-suggest/.
8. “Childhood Disintegrative Disorder.” Yale School of Medicine. Accessed March 15, 2016. http://medicine.yale...mation/cdd.aspx.
9. DeWeerdt, Sarah. “Dramatic Regression Leads to Severe Autism, Study Finds.” Spectrum, August 3, 2010. Accessed March 15, 2016. https://spectrumnews...sm-study-finds/.
10. Werner, E., Dawson G., Munson J., and Osterling J. “Variation in Early Developmental Course in Autism and Its Relation with Behavioral Outcome at 3-4 Years of Age.” Abstract. Journal of Autism and Developmental Disorders 35, no. 3 (June 2005): 337-50. http://www.ncbi.nlm....pubmed/16119475.
11. “IAN Research Report #6: Regression.” Interactive Autism Network (IAN). June 27, 2008. Accessed March 15, 2016. https://iancommunity...report_jun_2008.
12. Borthwick, Lindsay. “Regression May Mark One-Third of Autism Cases.” Spectrum, September 27, 2016. Accessed March 15, 2016. https://spectrumnews...f-autism-cases/.
13. Lustig, Megan. “Study Provides New Insights into the Implications of Autism Onset Patterns.” Kennedy Krieger Institute. April 20, 2010. March 15, 2016. http://www.kennedykr...-onset-patterns.
14. Richler, Jennifer. “Could a 3-Year-Old Just “Disappear?”” Slate, March 24, 2015. Accessed March 15, 2016. http://www.slate.com..._disappear.html.
15. Thurm A, Manwaring SS, Luckenbaugh DA, Lord C, Swedo SE. Patterns of Early Skill Attainment and Loss in Young Children with Autism. Development and psychopathology. 2014;26(1):203-214. doi:10.1017/S0954579413000874.
16. Jones, Rebecca. “Workshop Report: Regression in Autism.” Simons Foundaion Autism Research Initiative (SFARI). April 17, 2012. Accessed March 15, 2016. https://sfari.org/up...ssion-in-autism.
17. Hughes, Virginia. “Contradictory Results on ‘Regressive’ Autism Divide Researchers.” Spectrum, May 16, 2008. https://spectrumnews...de-researchers/.
18. Barger, B.D., Campbell, J.M., and McDonough, J.D. “Prevalence and Onset of Regression Within Autism Spectrum Disorders: A Meta-Analytic Review.” Journal of Autism and Developmental Disorders43, no. 4 (April 2013): 817-28. Accessed March 15, 2016. http://www.ncbi.nlm....pubmed/22855372.
19. Christopher, J.A., Sears, Lonnie L, Williams, Patricia Gail, and Hersh, J. “Familial, Medical and Developmental Patterns of Children with Autism and a History of Language Regression.” Abstract. Journal of Developmental and Physical Disabilities 16, no. 2 (May 2004): 163-170. Accessed March 15, 2016. https://www.research...uage_Regression.
20. “Immune Changes Linked to Regression, GI Distress & Repetitive Behaviors.” Autism Speaks, Inc. Accessed March 16, 2016. https://www.autismsp...itive-behaviors.
21. DeWeerdt, Sarah. “Study Links Brain Size to Regressive Autism.” Spectrum, December 12, 2011. Accessed March 16, 2016. https://spectrumnews...ressive-autism/.
- Spectrum: Regression- Rather than list each article out one-by-one, this links to Spectrum’s search results for “Regression.” There are over 50 results, but the first dozen or so studies are the most relevant to the topic of regression.