Category: Autism

A Day at the Symposium

Image of Young Adult Panel at 2013 Autism Consortium Symposium
Young Adult Panel at 2013 Autism Consortium Symposium

On a chilly November morning, I took the Green Line train over to the Joseph B. Martin Conference Center at Harvard Medical School for the annual Autism Consortium Symposium. This isn’t the first time I have attended the research symposium, but this past year is one that I will never forget. There were the usual sessions around the latest and exciting cutting-edge findings in autism research from the giants over at Harvard and MIT, but a panel of 3 remarkable young adults with autism having a conversation about their transition to adulthood – “In their Own Words” ¬– left me feeling inspired and energized. The moderator opened with introductions from the panel – Michael is at Mitchell College for Sports Management; Kush is at UMass Lowell pursuing a degree in Civil Engineering; and Darcie is in the Threshold Program at Lesley University. They chatted briefly about their work experiences. Michael talked about his first job as a baseball coach and when he had the opportunity to work in the classroom as a City Year member. Kush explained how he is part of a team of researchers testing the chemical properties of packaging materials for solders. Darcie expressed how she loves working with animals and children, and the time she was “forced” to answer the phone as part of her job. With a constellation of experiences that led them to where they are today, the most powerful words spoken to a 100+ crowd of researchers, providers and parents were the advice and wisdom they had to share. On to topic of friendships, Kush noted it got easier as he got older since people were “willing to accept differences and not make a big deal out of it.” When offering advice to teens about transitions, Michael said to “find your strength and go for it!” Darcie asserted, “keep your options open because you are going to make changes in this world,” while Kush concluded, “use your supports because you can’t do it alone,” and “surround yourself with a great team of people.” Perhaps, the most insightful perspective for me was when the issue of bullying was mentioned, and Kush said of his offenders, “it was due to a lack of understanding, and it was for them to deal with, not me.” These incredible young adults had the audience grabbing for tissues by the end of the session. I was humbled as I walked out of the conference center on that wintery November day, and all I can remember thinking I wish I had those same insights in my early twenties. To borrow from Margaret Mead, “Never doubt that a small group of thoughtful committed citizens can change the world; indeed it’s the only thing that ever has.” For more information about the Autism Consortium, please visit the website: www.autismconsortium.org For more information about the author, Katherine Blakeslee, follow her rumblings on Twitter @kbswoon

When Behavior is a Means to Communicate Pain in a Nonverbal Individual with Autism

unhappy child on floor with mom comforting
Behavior as a mean of communication for nonverbal individuals with ASD

As a parent of a nonverbal child with autism it has been critical that members of my son’s medical team understand and appreciate the connection between his physical pain and his uncharacteristic behavior. Early on in my journey to secure appropriate medical care for my son, I was given a critical piece of advice from our pediatrician. He once told me “whenever there is a dramatic change in my son’s behavior that could not be readily explained by some known cause, to pick up the phone and bring him in to be seen.” I did not realize at the time how rare and how invaluable this piece of medical advice would be for our family. In fact, I can recall an occasion when my son started to randomly bite his hand. In an effort to stop the biting, the educators working with my son immediately began formulating a behavior plan to address this self-injurious behavior. But I thought, what if there’s more to it. I remember calling my pediatrician about the biting and bringing my son in to see him. As it turned out, my son had a raging sinus infection. Once the infection was treated, the biting behavior vanished.

To an inexperienced physician, especially in an emergency department (ED), assumptions on how to treat an initial presentation are often made based on an assessment map for a typical child. During a recent trip to the ED with my son, the physician on duty made a determination that my son’s pain level was low based on his behavior. He was not crying in pain and was not showing any other signs. My son was simply curled up on a stretcher, lethargic and weak. The imaging studies suggested that he had a small bowel obstruction and a CT scan was needed to confirm this diagnosis. The ED physician stated that “with children with challenges like your son, we do not think a CT scan would be feasible.” All I could think of was, if a CT scan was the standard of care for children presenting with abdominal pain and persistent vomiting, then my son would have a CT. A CT scan was eventually done and did confirm his diagnosis.

I see it as critical that ED medical staff get a complete picture of a child’s profile before jumping to assumptions about the level of pain or the degree to which a child with autism may cooperate on an exam. We as parents are key members of the treatment team that must educate providers that each child on the autism spectrum is unique. We have to work together to make sure that assumptions aren’t made based on previous experiences with other individuals on the spectrum. My son is so fortunate that his medical team is composed of exceptional professionals who understand that a child with autism is a child first and that behavior often serves as a way to communicate. Other medical professionals need to learn how to translate uncharacteristic behaviors. Understanding that each child with autism is unique, and that medical comorbidities exist. Each and every child needs to be comprehensively evaluated in an effort to provide the highest quality of medical care for individuals on the autism spectrum. For more information regarding medical comorbidities and autism see: https://nationalautismassociation.org/pdf/MedicalComorbiditiesinASD2013.pdf

What’s in a Diagnosis? The Neuro-diversity Movement

neurodiversityToday I sat in a feedback session, giving news to a family that their child met the criteria for having an autism spectrum disorder. I took in their mixed sense of grief and relief, because in many ways they had already suspected this diagnosis. I went on to talk about the unique strengths of that particular child and how specific services would address his challenges. I have gone through this process now many times with many different families; however, with each family, I ask myself again “What’s in a diagnosis” for this particular child? For this particular family?

I am a pediatrician who works with children who have an autism spectrum disorder and their families. Our first contact is often one where the family describes the behavioral concerns that led them to seek an evaluation. The simpler part of what I do is to pull together these concerns and my testing results to provide a diagnosis. The more challenging and rewarding part is to walk with families through their journey of recognizing and building upon the unique strengths of their child as they advocate for him through a myriad of systems.

We often express the need to define a diagnosis for the purposes of initiating services. A diagnosis can also help families, educators, and community members appreciate the neuro-developmental basis for seemingly ‘negative’ and difficult behaviors. By explaining why certain behaviors happen, we can start to identify specific areas to work on with the child and family.

I bring up the strengths of that particular child, and emphasize the uniqueness of every child with an autism spectrum disorder. I acknowledge the spectrum, and how even the ‘strengths’ that I defined are through the lens of what should be ‘neuro-typical,’ rather than a true recognition and celebration of uniqueness. It is exactly this spectrum of diversity and the remarkable strengths of individuals with autism spectrum disorders that have brought about the neuro-diversity movement. The neuro-diversity movement, although controversial, celebrates that autism, as well as other developmental disabilities, are less about disorders/illnesses to be cured, than they are about different ways of being. This movement, however, is challenged because in its extreme form, it undermines the value of research and interventions aimed at curing autism and minimizes the problems and struggles that an individual with autism faces.

The neuro-diversity movement is only one aspect of how autism has perhaps catapulted change in policies and practice among several social systems, including education, employment, and healthcare. The broader reaching implications of these changes may then have an impact across all disabilities. Ultimately, the social changes initiated by a better understanding of autism spectrum disorders, may be leading those of us caring for individuals with disabilities down a path of better inclusion, more appropriate accommodations in education and employment, and comprehensive access to healthcare services.

The Massachusetts Act Early Campaign: Because Early Identification is Important to Us

Female and baby girl reading book, baby is pointing at bookThroughout the month of April, we’ve heard from members of the Massachusetts Act Early state team who have shared heartfelt stories about why identifying autism and other developmental disorders matters to them.

Who We Are

Our team is made up of parents, medical professionals, educators, autism resource specialists, human services program managers, public health practitioners, university faculty and many others.

We lead an interdisciplinary, collaborative statewide effort “to educate parents and professionals about healthy childhood development, early warning signs of autism and other developmental disorders, the importance of routine developmental screening and timely early intervention whenever there is a concern.”

What We Do

Our statewide coalition works to strengthen state and community systems for the early identification and intervention of children with signs of developmental disabilities, such as autism spectrum disorders.

The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth. This mission and vision drives every action Mass Act Early takes to make a critical difference in the lives of children and their families.

Our current goals include:

    1. Public outreach to increase awareness of autism spectrum and related disorders.
    2. Training for early childhood, health care, and educational professionals.
    3. Shortening the wait times between screening and diagnosis as well as diagnosis and intervention.
    4. Developing culturally competent autism screening materials and training curricula for early childhood educators, community health centers and pediatric practices across Massachusetts.

How We Do It

Our web site at www.maactearly.org  contains free downloadable materials about healthy developmental milestones in young children for families, early childhood professionals, and health care providers.

Most of these materials were developed by the Centers for Disease Control and Prevention (CDC). The CDC developed them for the national “Learn the Signs. Act Early” public awareness program, of which the MA Act Early initiative is the local state chapter.

Additionally, the CDC‘s online Autism Case Training (ACT) course covers identifying, diagnosing, and managing autism spectrum disorders.
There are three modules, which can be taken separately or together. They are based on real-life scenarios and include up-to-date information, illustrative videos, and pertinent references and resources.

Free continuing education credits (CME, CNE, and CEU) are available for each of the modules.

Our Priority: Cultural and Linguistic Equity in Massachusetts

The MA Act Early state team has set a priority of reducing early identification disparities for families who are from culturally, ethnically, and linguistically diverse backgrounds, particularly if their primary language is not English.

To that end, we have developed the “Considering Culture in Autism Screening” guide and toolkit which includes a clinician’s tips guide, a Massachusetts resource sheet “Referrals at a Glance”, and the validated M-CHAT screening tool in five languages. It also comes with instructions, a scoring sheet and the follow-up interview.

Make Early Identification Your Goal Too!

Visit the MA Act Early website often. “Like” us on Facebook and help spread the word!

Early identification may be important to any of us. It could be due to skyrocketing prevalence rates, a beloved family member living with an autism spectrum disorder, a sense of profound professional purpose to improve the quality of life or any number of other reasons.

Whatever raises your own concerns about early identification, please join us in making a lasting difference. Positive outcomes are within our reach!

About the AuthorElaine Gabovitch

Elaine Gabovitch, MPA serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. For more information, visit www.maactearly.org . She is also the Director of Family and Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health.

Early Identification Makes a Difference: An Educator’s Perspective

ToddlerThis week we are pleased to introduce Jason Travers PhD, BCBA-D, an Assistant Professor of Special Education at the University of Massachusetts Amherst. Jason will share his personal experience with early identification and the impact it made on his life.

My Work Begins

I began my work in autism while studying for my Bachelor’s degree in Special Education at UNLV in 2000. I had quit a construction job to return to college and the decision was taking a financial toll on me and my new wife.

There were many fliers in the hallways of the College of Education requesting candidates to help with early intensive behavior intervention in home-based programs for children with autism. I figured it would be a great way to get some experience and make a little money.

Soon I was working for and with three families which included sons with autism. It was a decision that would come to define me as a professional.

Meeting Alex

Perhaps the most influential moment was my experience with Alex and his family. Alex had recently been diagnosed with autism when his parents contacted me about starting up an intervention program.

A couple of weeks later, I arrived at their home with a few other behavior therapists and an experienced consultant. The family was desperate for help and needed support.

For several months prior to our arrival, Alex struggled to communicate with his parents and relied primarily on inappropriate behavior to get his needs met. I could tell they were a loving family, but they were also unsure of what to do to improve the situation.

Beginning Our Treatment

I was eager to begin our effort and over the next couple of days we began teaching play, communication, and other behaviors. Initially I found it very challenging as Alex refused hand over hand prompting.

The other children I had been working with had established these skills before my arrival. I was unsure what to do and so were Alex’s parents.

The consultant, however, continued with the procedures and by the morning of the second day things had changed dramatically.

Making A Breakthrough

There were six of us in a small bedroom when Alex began to respond to our spoken directions. We spread around the room and took turns asking him to “come here.” We cheered every time he went to the person who called him and he loved our cheering.

A few minutes later he completed a puzzle, played with some blocks, and said “buh” to request bubbles. Alex’s parents were overcome with tears of joy as they felt they were witnessing nothing short of a miracle.

Just two days before their son was unable to answer to his name, had never “asked” for anything, and couldn’t follow simple directions. I was amazed at the quick transformation and still get emotional whenever I think about it.

Committing To Help

I was immediately convinced that day that I would base my career around autism and began planning accordingly. I continued to teach Alex for 9 months and documented his progress before leaving to start a job as a special education teacher.

During those months, Alex began speaking to communicate, drawing and writing, playing appropriately, and went to the movies and other places in the community with his family.

Goals for the Future

This experience was a defining moment in my life and has fueled my career. While working as a special educator for students with autism, I earned my Master’s degree in special education with an emphasis on autism and developmental disabilities. Eventually I earned a PhD in special education. I now conduct research and teach courses related to behavior analysis and autism at UMass Amherst.

After 13 years, the memory of those first days with Alex remains vivid and powerful. Alex and many other children like him have inspired my professional goal: to help all families affected by autism gain access to quality services that will allow their child to achieve their full potential.

Early identification and early intensive behavior intervention is critical to this goal and the reason why I am involved with Massachusetts Act Early.

About the author

Jason Travers, PhD, BCBA-D is an assistant professor of special education at the University of Massachusetts Amherst. He researches the efficacy of technology to prevent contextually inappropriate behavior and promote early literacy skills of learners with autism. Jason also investigates the disproportionate representation of diverse children with autism.

One in a Million: A Physician’s Perspective

Baby-in-green-bathThis article is the next in our series on Early Identification and was written by Dr. Stephanie Blenner. Dr. Blenner is from Boston Medical Center and is a member of the MA Act Early Steering Committee. She is also a LEND alum.

Three in One Thousand

She had long hair and unyielding eyes. I was only a resident at the time, so I sat to the side while the attending physician told the mother that her child had something called autism.

He explained it was a neurodevelopmental disorder. When she asked what to do, he told her to spend time with her at home.

At 3, she was too young for school or formal intervention. When we left the room, he told me I was lucky to meet a child with autism because it was so rare.

One in Eighty-Eight

Over 15 years later, we see children with autism every day in our clinical program. We never tell families it is rare or that they should wait to intervene. Instead we talk about how common autism is, how many other families have sat in their shoes, and the importance of early intervention.

We do this in English, in Spanish, in Vietnamese, sometimes with both parents, sometimes with just the mother or another family member. As clinicians, we do this so often the packets of printed information for families need to be restocked weekly.

This is our job as health professionals, to assure children are screened, diagnosed and receive the intervention that can make such a difference.

One in Fifty

Autism awareness requires more than just describing what autism is, explaining that it is common and that early treatment is critical.

We also need to to let people know that while autism is all too common, children with autism are not.

That each is singularly unique and special. That the chance to identify a child with autism early means that, through intervention, their community will have a unique opportunity. They will be able to know and appreciate that child as possibly only those closest know them; as the individual behind the disorder.

In this way, as we work together on autism awareness, we remind ourselves why this work is important. That the most recent sobering 1 in 50 statistic belies what each of us privileged to do this work knows, that each child is more truly one in a million.

Why Early Identification is Important to Me: A Parent’s Point of View

Picture of a BabyThis month we are pleased to introduce Elaine Gabovitch, a respected professional in the field of disabilities. Elaine has many titles; State team leader, Faculty Member, and Director to name a few. Yet this month, she shares a personal view from one of her most important roles in life, parent of a child with autism.

It’s personal

Every year in April, people who care about autism observe and even celebrate Autism Awareness Month. One thing I personally celebrate is how far we’ve come in identifying autism spectrum disorders in young children.

It was 18 years ago when early identification became vitally important for our son. Back then, I didn’t know a thing about autism, but I knew our son wasn’t meeting his developmental milestones on time. When we shared our concerns with his pediatrician, he advised us to “wait and see.”

Instead, I self-referred to Early Intervention who evaluated my son and sent us to specialists. Soon he received a diagnosis, Early Identification services started, and our long trip forward began. Over time, I met other parents whose pediatricians also reassured them to “wait and see.”

It was a growing problem in need of a solution.

That was back in the 90’s, and while early identification has come a long way since then, it still has a long way to go with heightened public awareness.

It’s Prevalent

Only last year, the CDC estimated that every one in 88 children has an autism spectrum disorder. That’s one in every 54 boys and one in every 252 girls. This past month, a parent telephone survey study reported one in 50 children may be diagnosed on the spectrum.

That’s 2% of all children!

It’s Urgent

Early intervention works. The earlier the screening, the better the results for children and families. But for children who have families from diverse cultural and racial backgrounds, real disparities exist. We can and must do better.

By teaching all families about healthy developmental milestones and what to do when concerned, we can do better. And by training all pediatric clinicians about screening, we can change the conversation from “let’s wait and see,” to “let’s do a routine screen,” leveling the playing field for all children.

It’s Treatable

Take it from me, autism spectrum disorders are treatable. Over the years I have met many children with autism and their families and each has a different story to tell. Early intervention was a crucial part of those stories, as it helped beyond what those families could possibly have imagined at the time of diagnosis.

Identification is the key to getting help. Let’s build awareness here in Massachusetts by getting everyone on board through education, participation and identification.

Over the month of April, we’ll hear from other members of the Massachusetts Act Early state team about why early identification is important to them too.

About the authorElaine Gabovitch

Elaine Gabovitch, MPA is the Director of Family & Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health. She currently serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. For more information, visit the Massachusetts Act Early Web Site

UMMS-Shriver LEND Program

LEND Fellows at CapitolOver the past several weeks, our blog introduced proud alumni of the LEND program; Leadership in Neurodevelopment & Related Disabilities. Through their personal stories, we were inspired by a collective ability to bring about change in organizations and communities.

This week we share further details of the LEND program itself, offered by the University of Massachusetts Medical School- Eunice Kennedy Shriver Center in Waltham, Ma. Maybe you or someone you know will be interested in this unique opportunity to improve the lives of children with disabilities and their families.

What’s involved?

LEND is an intensive 10 month program focusing on policy, legislation, leadership and management skills. It is designed for qualified graduate or post-graduate interdisciplinary clinicians, advocates, and family members.
The program challenges Fellows to rethink the ways in which healthcare, education, and social services are delivered, as well as the goals and quality of those services.

Program components include:

Applicant Qualifications

  1. A graduate degree in a MCHB  discipline or
  2. Individuals without a graduate degree may participate in the program if they enroll in the MPA degree program offered in conjunction with Suffolk University.
  3. Clinical/relevant experience with individuals with disabilities and their families
  4. Leadership potential
  5. Commitment to improving the status of people with disabilities and their families
  6. Strong academic record
  7. Ability to commit the time necessary to complete the program successfully

How to Apply

Application materials for Advanced Leadership Fellowship program can be downloaded here.

LEND Fellowship Application Form
Professional Reference Form

Please note that the application deadline for this year is May 1, 2013.

For further information, visit the website at UMass Medical School – Shriver LEND Program website  or contact:

Carol Curtin, MSW, LEND Associate Director and Training Director Carol.Curtin@umassmed.edu , (781) 642-0246

Carol Imposimato, Administrator Coordinator Carol.Imposimato@umassmed.edu , (781) 642-0045

LEND Program Makes Dream a Reality

LEND GraduatesBill S.601: [We resolve] that a special commission is hereby established for the purpose of making an investigation and study relative to the need for accessible homes for… families that include persons with disabilities.  (188th session)

Wow. How incredibly satisfying. Who would have thought I would have a bill before the MA Legislature? And all because of my LEND Fellowship.

Joining LEND

As a parent of a child with a disability, I came to LEND from a place of isolation and frankly, a great deal of anger. I was angry at all the obstacles I now faced with my son who uses a wheelchair.

Although the Americans with Disabilities Act (ADA) had increased access in the last twenty plus years, there was still a tremendous amount of work to do.

Finding Support From LEND Colleagues

LEND provided me with the tools I needed to address the frustrations I faced. As part of a diverse cohort of ten other like-minded individuals, I was able to break through an intense period of loneliness.

I wasn’t alone; there were other people who thought about these issues. There were parents and individuals with disabilities as well as professionals already working in the field.

As I watched my colleagues transform, I knew I was growing as well. It was safe to speak your mind in the group — but more importantly, we learned to listen. Really listen. And I learned to control my anger and focus that energy in a more productive direction.

Thinking About “Visitability”

My LEND capstone project focused on the housing market and the incredible shortage of accessible housing. While we could modify our own home to accommodate our son’s disability, as he grew, it had become more and more difficult to visit other people’s homes.

I discovered “visitability,” a simple concept that requires three features in new home construction: one door into a house without a step, a first floor bathroom, and 32″ wide doorways.

Wouldn’t it be wonderful if new homes were built this way? These three simple elements would allow our family to visit anyone!

My Capstone Project

My LEND capstone project was a plan to get this simple idea accepted as a new building standard. Part of the plan was to get a dialogue started between diverse groups who would benefit from access.

Bill S.601 is the beginning of that conversation, one that has taken on a life of its own. Now I read about groups voting to support the bill and representatives signing on. Such a simple idea; yet, what a profound difference this could make for the aging and disabled populations.

LEND helped me in accomplishing my goal…what about you? Join us next week to learn more about opportunities LEND can provide.

LEND Provides Invaluable Opportunity

Amy-Weinstock-Signing-at-FenwayThis week we are pleased to introduce guest blogger, Amy Weinstock, Director of the Autism Insurance Resource Center and 2005 LEND graduate.

Learning about LEND

I first learned about LEND when one of my daughter’s therapists told me she’d have to rearrange her schedule starting the next month, because she was about to start a LEND fellowship program. At the time, I was focused on getting help for my daughter, and didn’t pay much attention to anything else.

Two years later, another therapist told me she was applying to the LEND program. This led to two realizations on my part; the first being that I had really good therapists, and the second that LEND was a pretty big deal.

A good fit

At the time, I was working in corporate banking, and had become very interested in the topic of insurance coverage, or more accurately, lack of insurance coverage, for autism treatment. My knowledge of the health care system consisted of an insurance card, a sick child, and no coverage for her treatment.

I went to the LEND website, and quickly realized that the training at LEND was exactly what I needed. My goal was to begin working on the systemic change I believed was necessary in order for families to obtain insurance coverage for autism treatment.

Although I didn’t have all of the direct pre-requisites, I applied and was invited for an interview. I left that interview more convinced than ever that LEND would be critical to my goal of merging my professional experience in the corporate world, with my personal passion to work in the disability field.

LEND education supports change

My LEND Capstone project, “Expanding Insurance Coverage for Applied Behavioral Analysis (ABA) Treatment for Children with Autism” became the blueprint for my work over the next five years. It culminated with unanimous passage by the Massachusetts House and Senate of one of the country’s most comprehensive autism insurance bills.

The education I received at the LEND program, and the introductions to many of the leaders in the disability service and advocacy fields, was invaluable, and is a major reason people in Massachusetts affected by autism have this coverage today.

Join us next week to hear from another LEND fellow and how the program impacted their life.