Autism Understanding is on the rise

A few months back, in April, you might have noticed some companies or neighbors bathing their buildings and homes in blue lights. Or maybe more of your co-workers were wearing blue. Or you may have seen a news story showing famous landmarks like the Great Pyramids at Giza and Niagara Falls lighting up the night in blue.

These gestures were in honor of World Autism Awareness Day, a United Nations-sanctioned day that kicked off a month of activities and activism.

Autism Spectrum Disorder (ASD) is a term that covers a range of developmental disabilities. The Centers for Disease Control and Prevention reported in March that 1 in 50 schoolchildren in the United Sates has autism. The CDC study was based on a phone survey of more than 95,000 parents nationwide, and findings surpass the previous 1 in 88 estimate published just last year.

Although the CDC has declared autism an epidemic, their National Center for Health Statistics noted
that most of the increase can be attributed to recent diagnoses among children with previously unrecognized ASDs.

“For those of us who work and thrive in the autism community every day, this report is aligned with what we see day in and day out,” said Areva Martin, Esq., co-founder of the Special Needs Network President.

“I hope that this new data will renew and ignite a national conversation about the vital need for services and resources at the local level. Many families still struggle to simply receive a diagnosis for their child, much less access services or therapies.”

Martin has a life-long commitment to protect and advocate for her son Marty. At that time, she was working as a special rights attorney and became aware of the problems parents faced trying to secure services for their special needs children.

“Thousands of children with autism in disenfranchised communities of color fall into the cracks,” she said. “I had trouble finding relevant, culturally sensitive organizations to help, and when I met other people at a parenting class in Watts, I knew we needed a community network.”

Martin started Special Needs Network in 2005 to promote social justice, equality and dignity for children with disabilities. The Los Angeles-based organization offers direct services and resources for families as well as advocacy.

Last year, they co-sponsored and helped pass California’s first autism insurance mandate bill, SB 946, which requires insurance companies to cover mental health services.

On April 17, at a Sacramento rally, Martin announced the organization’s sponsorship of three additional autism bills that were introduced in the state Senate.

“In the last five or so years, autism awareness has come of age in L.A.,” Martin said. “Now elected officials are in tune with the disorder. Legislation is being passed, task forces established and a significant amount of attention is being paid to the disorder. But there is so much more to be done.”

The many signs of ASD—including less communication, limited focus, repetitive motions, impaired social interaction and restricted interest—are often apparent within a child’s first three years of life.

Singer Toni Braxton’s autistic son, Diezel, was diagnosed at 3, but Braxton knew something was different about him earlier, because he wasn’t developing at the same rate as his older brother Denim.

Nevertheless, Diezel, now 9, made his acting debut during February in a Lifetime movie, “Twist of Faith.”

“‘He was supposed to play my son initially, but by the time we worked out the shooting schedule, school had started,’” Braxton told the Huffington Post’s Black Voices.

“‘Even though he’s considered high functioning right now, he wasn’t in the past, and that’s why I thought him carrying the movie and trying to do the movie and tutoring would have been too much for him,’” the 45-year-old singer said.

Braxton decided he should take a smaller role.

“‘He was a little disappointed at first, but I think in the end, he’s happy about the turnout,’” she said.

“‘Early diagnosis makes a lifetime of difference,’” Braxton said. “We have him in occupational therapy, speech therapy; he’s being main-streamed [and] he’s in public school, general ed. He does have his special ed therapies, but we are very, very lucky.’”

At the beginning of April, the Centers for Disease Control released another report, this one confirming that children of color are diagnosed with autism two to four years later than their typical peers. That fact—plus the lack of access to crucial intervention services such as speech, behavioral and occupational therapies—have a life-long impact on their progress, say advocates.

There is no known cure for autism, but with intervention services and special educational classes, the goal of parents and advocates is to have children enter mainstream general education.

“We want them to matriculate through high school and then college,” Martin said. “Gaining their independence, that’s the goal.”

Temple Grandin, considered the most popular and accomplished adult living with autism, is a doctor of animal science and professor at Colorado State University, best-selling author, autism activist, and consultant to the livestock industry on animal behavior.

Grandin didn’t talk until she was 3 1/2 years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized.

“I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.’ Grandin said. “This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic.

“To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can” (from her book “Emergence: Labeled Autistic”).

Even though she was considered “weird” in her early school years, Grandin eventually found a mentor, who recognized her interests and abilities. Grandin later developed a successful career as a livestock-handling equipment designer, one of very few in the world.

Before parents and their autistic offspring can begin to find a place in the world as Grandin has done, one local mother/advocate says there comes something akin to a period of mourning.

“My son is very high-achieving and can now do a ton of things, independently,” says Meme Kelly of Sisters Supporting Sisters. “But he will never go to college and he has never held a full-time job. He will never have the busy life and social calendar of my other two sons. The pain I felt when accepting this truth is indescribable. For a while, I became very depressed as I mourned the loss of the child I thought he would be.

“But … there is a resilience of spirit that rises when one faces difficult and heart-wrenching circumstances. At some point, you accept that life must go on and you commit to being and doing your best in spite of. You must carry on.”

According to the National Institute of Child Health and Human Development’s Autism Facts, “a doctor should definitely and immediately evaluate a child for autism if he or she:

> Does not babble or coo by 12 months of age
> Does not gesture (point, wave, grasp, etc.) by 12 months of age
> Does not say single words by 16 months of age
> Does not say two-word phrases on his or her own
> Has any loss of any language or social skill at any age
> The child does not respond to his/her name
> The child cannot explain what he/she wants
> Language skills or speech are delayed
> The child doesn’t follow directions
> At times, the child seems to be deaf
> The child seems to hear sometimes, but not others
> The child used to say a few words or babble, but now he/she doesn’t
> The child throws intense or violent tantrums.
> The child has odd movement patterns
> The child is hyperactive, uncooperative, or oppositional
> The child doesn’t know how to play with toys
> The child doesn’t smile when smiled at
> The child has poor eye contact
> The child gets “stuck” on things over and over
> The child seems to prefer to play alone
> The child gets things for him/herself only
> The child is very independent for his/her age
> The child does things “early” compared to other children
> The child seems to be in his/her “own world”
> The child seems to tune people out
> The child is not interested in other children
> The child walks on his/her toes
> The child shows unusual attachments to toys, objects, or schedules
> Child spends a lot of time lining things up or putting things in a certain order