This month the world is recognizing autism and its impact on children and adults globally.
The rate of children affected by autism has grown at an alarming rate since the 1970s and 1980s when 1 in every 2,000 children had autism. In 2000, 1 in 150 children were diagnosed with autism spectrum disorder (ASD). Today, that number is 1 in 68 children, and boys have higher rates than girls with 1 in 42 boys diagnosed with ASD compared to 1 in 189 girls, according to the U.S. Center for Disease Control’s Autism and Development Monitoring Network.
The dramatic rise in children with autism spectrum disorder (a term used to describe a wide range of brain development disorders, including Asperger’s syndrome) means that each of us will know someone with ASD in our lifetimes, whether it is a relative, a colleague or a family friend.
Although ASD affects people differently, it is generally characterized by self stimulatory behavior such as engaging in repetitive activities; over or under sensitivity to sound, touch, sight, taste or smell; difficulty understanding speech; using language in unusual ways; speech that may sound odd; and difficulty in engaging in human interaction – they may avoid eye contact, resist attention and appear indifferent or aloof.
In the past two weeks, I have learned a great deal about autism while working with Resources & Education for Autism & Related Challenges (REACH) in Nassau, The Bahamas. I have been moved by the challenges of families – both parents and siblings – of children with autism.
One of the things that has surprised me most is the fact that black children tend to be diagnosed later than white children, and while there is no known cure for autism, early detection can mean a great deal in an autistic child’s development.
There are many theories on why black children are diagnosed later than white children. Some of it is cultural. Some black parents may think that a child is “acting” out and simply needs more disciplinary action. Others listen to family members who say, “Don’t worry; you didn’t really talk until you were older, so they (the child) are going through a phase and just like you, they will come around.”
And then there is the issue of resources and the ability to seek out and pay for those resources. Speech and occupational therapy and special schools can be extraordinarily expensive.
In addition, according to the website autisminblack.com, many black American children grow up in a single family household, which means that a parent is forced to spend less time with their autistic child.
“Raising a child with autism can be difficult for anyone; however, in the black community there are additional challenges that may affect us. Although early intervention is key, African-American children with autism are one to two years older than white children before they’re even diagnosed,” autisminblack.com says on its home page.
Many of us know very little about autism and when asked, most will fall back on the 1988 Dustin Hoffman/Tom Cruise movie Rain Man as their only “knowledge” of the disorder.
But in recent times, we have heard from people like Holly Robinson Peete and Rodney Peete, whose now 18-year-old son, R.J., is autistic; and Toni Braxton, whose 13-year old son Diezel Ky Braxton-Lewis has autism.
Robinson Peete has kept the issue in the forefront by addressing how her family has dealt with autism in her book My Brother Charlie, written with her daughter Ryan Elizabeth Peete, who is R.J.’s twin. Robinson Peete recently wrote another book, Same but Different: Teen Life on the Autism Ex- press, written with both her daughter and son.
Braxton acts as a global ambassador for the New York-based Autism Speaks. And Duane and Tisha Campbell-Martin, who have a young son with autism, have been very active in bringing awareness to ASD and promoting tolerance. Campbell-Martin produced a short film, in collaboration with four other mothers of autistic children, called Colored My Mind and wrote the book My Brother Doesn’t Want to Play to help siblings of children with autism cope.
The aim of Autism Awareness Month in April is to do just that – to increase awareness of ASD. As a community, African Americans should be at the forefront of encouraging early detection and identifying resources for children and their families in our communities.
It is an issue that affects us all, and it is in our best interest to embrace the African adage that it takes a village to raise a child – not just in April, but year- round.
For more about the Peete’s experiences with autism, read their interview with People magazine http://celebritybabies.people.com/2007/05/30/ rodney_and_holl/