By Elaine Gabovitch, MPA
UMass Medical School-E.K. Shriver Center, parent

Throughout 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!

The blog post above was first published on May 1, 2013 at the New England INDEX Disability Info Blog at www.disabilityinfo.org/blog.  We are happy to republish it here for our readers.

By Jason Travers, PhD
UMass Amherst, Department of Special Education

My Work Begins

I began my work in autism while studying for my Bachelor’s degree in Special Education at University of Las Vegas 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.

The blog post above was first published on April 10, 2013 at the New England INDEX Disability Info Blog at www.disabilityinfo.org/blog.  We are happy to republish it here for our readers.

By Stephanie Blenner, M.D., Boston Medical Center

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.

The blog post above was first published on April 10, 2013 at the New England INDEX Disability Info Blog at www.disabilityinfo.org/blog.  We are happy to republish it here for our readers.

By Elaine Gabovitch, MPA, UMass Medical School-E.K. Shriver Center, parent

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.

The blog post above was first published on April 3, 2013 at the New England INDEX Disability Info Blog at www.disabilityinfo.org/blog.  We are happy to republish it here for our readers.