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Thursday, December 14, 2017

Reacting to an autism diagnosis: what’s next?

For any parent, the first reaction to a diagnosis of autism may be shock, disbelief, or a feeling of being stunned, says AzAAP member Ruth Letizia, MD, of Sonoran Sky Pediatrics in Mesa.

Courtesy azautism.org

“Even when a parent knows their child has developmental delays, says Letizia, “hearing the word ‘autism’ is like physical punch in the gut.”

Afterwards, she adds, parents may go through a process similar to the five stages of grief: denial, anger, bargaining, depression, and acceptance. Like any person moving through a grieving process, various stages of the grieving process may prove more challenging or last longer for each parent.

Parents may feel alone in the initial months after their child’s diagnosis, says Letizia, and the usual support system may not fully understand the parents’ struggles. “Building a new network of support,” she says, “can help families cope.”

Both support groups and finding a “parent partner” who can act in a mentoring role can provide the support parents need, and help parents learn to be an advocate for their child.

New findings released last week by The Autism and Developmental Disabilities Monitoring (ADDM) Network, a group of programs funded by the Centers for Disease Control, show that more children with autism spectrum disorders (ASD) were diagnosed at earlier ages—a growing number of them by age 3.

And that’s good news. Early intervention for children diagnosed with autism helps improve a child’s learning, communication and social skills.

Still, most children in the study were not diagnosed until after they reached age 4. Children with the more broadly defined ASD were diagnosed around the age of 4 ½, and those children with Asperger disorder were not diagnosed until after their sixth birthday.

A study released today by the American Academy of Pediatrics explored the most common paths that children with autism take after an initial diagnosis.

Researchers followed nearly 7,000 children with autism in California born between 1992 and 2001, tracking the children’s communication, social, and repetitive behavior skills.

They found some children improved rapidly, especially in communication and social behaviors. About 10 percent of the children, identified in the study as “bloomers,” improved especially quickly and moved from severely affected to high functioning.

Children on these higher “trajectories” tended to be born to more educated, white mothers.

Children whose parents were in the lowest socio-economic strata were much less likely to be in the “bloomer” group.

Study authors concluded that socioeconomic differences play in to whether less-advantaged children receive early intervention and treatment resources.

Bryan Davey, Ph.D., Director of Behavioral Services at Arizona Centers for Comprehensive Education and Life-Skills (ACCEL), says that in Arizona, most families with private insurance are far more likely to establish a timely diagnosis and begin the process of intervention and treatment.

But for families who don’t have access to private insurance, the wait can be much longer. For children covered under the Arizona Health Care Cost Containment System, or AHCCCS, says Davey, treatment doesn’t start in Arizona until age three.

Families in lower socioeconomic groups may wait many precious months for access to a developmental pediatrician.

More resources and links to support groups from the Arizona Autism Coalition

Evidenced-based treatment, Davey adds, such as applied behavior analysis techniques (ABA) — widely recognized as a safe and effective treatment for autism — is often delayed or even not offered at all. Some lower income families merely receive respite care services, which provide little opportunity for the child to improve.

Parents also may feel overwhelmed, says Letizia, and not know what steps to take after their diagnosis. She recommends that using a toolkit, like the Autism Speaks 100 day kit, can be very helpful and gives parents something concrete that they can do to help their child.

The 100 Day Kit can be downloaded for free at Autismspeaks.org.

Any family with a child with a new diagnosis of autism (within 6 months) can request a free paper copy of the 100 Day Kit by calling 1-888-AUTISM2.

Other local autism resources for families:

Southwest Human Development

Southwest Autism Resource and Research Center

ACCEL

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Vicki Louk Balint

Staff multimedia journalist Vicki Louk Balint is the mother of four children.

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