Tag: early identification

“Girls with Autism Are Good at Hiding it”

As of 2012, autism can be found in 1 in 68 children. 1 It was noticed that boys are more diagnosed than girls (1 girl to every 4-5 boys). 1 Is autism really more common in boys than colorful drawingof a girls headgirls? Or are we missing autism in girls?

Autism in girls can be hard to see. Girls with problems dealing with people can be seen as shy. They may live for years without knowing they have autism. This delays diagnosis and treatment.  Boys are noted earlier than girls by 2 years.

Most of the time, a child with autism has problems dealing with people, and has repetitive behavior. Girls are aware of these problems but they are good at hiding them. Girls with autism want to deal with people, but don’t know how. They may start copying what others do. ‘They pretend to be normal’. 2 Girls with autism get tired from copying. “It is like math all the time”.2

Unlike boys, girls don’t flap their hands or jump all the time. They may not play with wheels of cars or trucks.  These are other reasons for the delay in diagnosis.

Some teen girls love numbers and focus on their weight. They start counting every food they eat. This may end up having an eating problem. An eating problem may be a ‘face’ of autism in girls. Girls with an eating problem and girls with autism have similarities. They are both rigid, love details, and hate changes.  Some children with autism are picky eaters with a strict diet.

Autistics can’t read between lines. Girls miss that someone is creepy. They are more at risk for abuse and taken advantage of.

Girls with autism want to make friends. They play with regular toys (dolls or Barbie). They have fewer behavioral problems. They have fewer repetitive moves. They are more at risk for feeling down or worried. They are more at risk for abuse  

Girl with autism will need special help. Girls benefit from social groups that teach them how to:

  • take care of themselves;
  • be appropriate when dealing with people;
  • make friends; and
  • protect themselves from abuse. 3

If you would like to read more about this topic:

  1. http://www.cdc.gov/ncbddd/autism/data.html
  2. Journal of Autism and Developmental Disorders October 2016, Volume 46, Issue 10, pp 3281–3294, The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype Authors: Sarah Bargiela, Robyn Steward, William Mandy , http://link.springer.com/article/10.1007/s10803-016-2872-8
  3. Autism—It’s Different in Girls. New research suggests the disorder often looks different in females, many of whom are being misdiagnosed and missing out on the support they need by Maia Szalavitz on March 2016, https://www.scientificamerican.com/article/autism-it-s-different-in-girls/
  4. Attention Finally Being Paid to Girls at Risk of AutismSomer L. Bishop, PhDaJeremy Veenstra-Vander Weele, MDb, , Stephan J. Sanders, MD, PhDa,  http://www.jaacap.com/article/S0890-8567(16)00008-3/abstract
  5. Autism Behaviors May Differ in Boys and Girls. Study also found gender differences in brain of children with the disorder. By Tara Haelle, https://consumer.healthday.com/cognitive-health-information-26/autism-news-51/autism-behaviors-may-be-different-in-boys-and-girls-702957.html


Earlier Diagnosis of Autism Matters for African American

man with child
Cultural beliefs may play a part in diagnostic disparities.

The Diagnosis…

I try to remember when my son began to lose words.  It seemed like I always knew how to reach him.  I mean, yes, he had tantrums.  He was a baby; you know? Besides, he was a boy, aren’t boys a little slower to develop?  And his older brothers are quiet…we all are.

When my sister-in-law approached me about his development, I was stunned.  Of course he talks.  He talks all the time.   At least that is what I heard myself say.  Didn’t he?  The more attention I began to pay, the fewer “I love yous” I heard.   I know he used to call me Mommy.   When did he begin to just stare out into… nothing?   Joshua was moving backward, regressing.   A well-check visit with his doctor sent my world into a tailspin.  Just one word: Autism.   That was almost seventeen years ago.

Today’s Reality…

I have worked as a behavior therapist for nearly three years now.   In that time, I can count the number of African American children I have serviced on one hand.   That is not to say that autism does not affect African American children.  It is just to say that I serve a larger population of non-African American clients.   As a mother of an African American young man diagnosed with autism, this is concerning.  Why are we not seeing more African American families seeking therapy? Is it because of barriers to quality medical care?  Is it because of lack of financial resources?  Or could it be cultural beliefs?  Statistics bear out one fact…African American children are being diagnosed later than their counterparts.

National statistics state that Autism Spectrum Disorder (ASD) affects 1 in 68 children today.  This diagnosis affects boys nearly five times as often as girls.  It is not determined by race.  It is not determined by where you live.  It is not determined by how much money you make.   It is an equal opportunity disorder being diagnosed across these factors.   However, when you get diagnosed is a factor that can have a profound impact on a child’s development.   Early diagnosis and therapies to support language, communication, and social-skill development are important.  These have been shown to strengthen speech, relationship building, and interaction with others in a meaningful way.

Diagnostic Disparities…

African American children statistically are diagnosed later than their counterparts.  Because of this, they often miss opportunities for early intervention.   The failure to access services during early childhood can require more intensive and extended therapies later in life.

Statistics show African American families often have fewer resources.   These could be financial, access to care, or social supports.   Education about this diagnosis can be a powerful tool in closing the diagnostic gap.  Recognizing early signs of autism can help parents identify possible red flags.   The Centers for Disease Control “Know the Signs Act Early” campaign provides important information.   Their brochures highlight developmental milestones as well as developmental delays to watch from birth to age five.

Below are some red flags from the CDC that parents should know.  For more information, visit “Facts About ASD” on the Centers for Disease Control web site.

Red Flags…

Some signs about children with ASD include the following.

  • They may not point at objects they are interested in. (for example, not point at an airplane flying over).
  • They may not look when you point at objects.
  • They may show no interest in others.
  • They may not look at you when you speak.
  • They may like to be alone instead of with others.
  • They may have a hard time understanding emotions. (for example; sad, happy, scared, angry, etc.)
  • They may have a hard time saying what they feel. (for example; they are sad, happy, scared, angry, etc.)
  • They may not like being hugged.
  • They may look as if they are not paying attention when people talk to them.
  • They may have a hard time talking to others.
  • They may have a hard time playing with others.
  • They may say the same thing over and over.
  • They may have a hard time letting others know what they need.
  • They may not play “pretend” games. (for example, not pretend to “feed” a doll)
  • They may do the same thing over, and over again
  • They may need to have things done the same way every time.
  • They may have a hard time when things change.
  • They may act unusual to the way things smell, taste, look, feel, or sound.
  • They may stop doing things they once did. (for example, stop talking, playing with others, etc.)

Source: Centers for Disease Control and Prevention, 2016 – See footnote.

The information above does not address potential factors for diagnostic disparities suffered by African Americans.  It can, however, bring awareness of potential signs of autism.  This awareness can help families bring concerns to their pediatrician’s attention. Knowledge is power.  Early detection and intervention can make a significant difference.

Today, my son is preparing for adulthood.  We are working on vocational training with hopes of transitioning to college with educational supports.  Is his story typical? Who knows?  But shouldn’t it be?

For more information, see the resources below.



Centers for Disease Control and Prevention. (2016, March 28). Autism Spectrum Disorders (ASD)/Facts about ASD. Retrieved from Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/facts.html

Lessons Learned from the Massachusetts (MA) Act Early State Team 2015 Spring Summit

”The Massachusetts State Team created a guidebook for Considering Culture in Autism Screening ”

I was an intern for Massachusetts Act Early this summer. This program works to improve autism screening in the state. I went to their Summit in June. There were 56 people from 7 states at the meeting. They discussed the role of culture in Autism screening.

Why talk about culture in Autism Screening?

People in this country are from all over. Some people just moved here. Sometimes they do not speak English well. Often, parents use other languages. The way a culture thinks about how a child grows may not be the same as American culture. So, doctors need to think about culture and language when screening for autism. If not, some children may not be screened or diagnosed.

The meeting involved a training on Autism screening. The training talked about culture. It included the following tips for doctors.

  • Think about the child’s background.
  • Provide screening tools in the child’s language.
  • Have someone translate if needed.

We talked about why it may be hard for a doctor to screen for Autism. We also talked about ways to help detect Autism while thinking about culture. I wrote a
report about the findings of the Summit (PDF).

To Learn More

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.