Month: April 2017


Apr
2017

Earlier Diagnosis of Autism Matters for African American

categories: Autism
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.

 

Bibliography

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


Apr
2017

Challenges in transition from child doctor to adult doctor

categories: Autism, Health

Doctor with young adultBackground:

I work with families who have young children with autism spectrum disorder (ASD). Parents interface with Early Intervention, public schools, and pediatrics. For a person with autism, age 22 marks the end of many childhood services. But autism doesn’t go away at age 22. One transition is the switch from child doctor to adult doctor. This can be a difficult task. Adult doctors often have little training in ASD. As a result, they may not be familiar with autism-related issues.

ASD service systems reflect the idea that it is a childhood disorder. Yet autism is lifelong. The rate of autism diagnosis is increasing. Children with ASD grow up to become adults with ASD. Our service systems need to catch up. We need to advocate for systems that better serve people throughout their lives. This includes better training for adult doctors. Recent studies show that adult doctors don’t have enough autism knowledge. The good news is that they seem interested in learning.1

Why is this important?:

  • Some health conditions maybe related to autism, or they may not  It is important for the doctor to know the difference.
  • People with autism may require unique needs for doctor’s visits.
  • Primary care doctors should be familiar with ASD services. This way, they can make referrals as needed.
  • Primary care doctors need to look at the big picture to provide good care. This includes things like housing, social life, family, and job. The doctor needs to understand how ASD impacts a person’s life.
  • A good primary care doctor can be an important advocate. He or she can help a patient access services.

How to find an adult doctor who understands autism:

  • See this list of doctors that serve people with ASD in Massachusetts.
  • Reach out to Autism Support Centers and local autism agencies to request help.
  • Find a doctor, at a teaching hospital, who may be more up-to-date with the latest research.
  • Contact the doctors’ offices and ask questions about their experience with ASD.
  • Refer to this healthcare toolkit, which provides tips on how to find the right doctor.
  1. Sarris, Marina. The Challenge: Finding Health Care Providers For Adults with Autism. Interactive Autism Network at Kennedy Krieger

Institute. 8 April 2016. https://iancommunity.org/ssc/finding-health-care-providers-adults-autism