The Frightening Diagnosis of Autism Brings Parents Into a
By Susan Maltby
When I began my journey as a parent of a child with autism, it was like finding my way through a forest in the dark,” says Keri Bowers, a
“I decided I could no longer be a victim to my circumstances. I decided I would surrender to what God had given me and stop pining for the baby I had ordered,” says Bowers of Taylor, who is now a high school student and award-winning documentary filmmaker. “That’s where the rubber meets the road,” she continues. “My child has absolutely changed my heart and spirit.”
According to the Autism Society of America, there are 1.5 million people in
Like Bowers, most parents struggle with the diagnosis and ultimately begin navigating a different life than they imagined. But they also are finding ways to deal with this devastating disorder through awareness. Today, the often-dizzying array of treatments and research is offering new pathways – as well as hope – for parents. From finding familiar voices through networking to drawing out an autistic child through the unconditional love of a canine companion, a wide array of local resources can help parents and children know that they’re not alone.Hard to Define
A complex developmental disability, autism is termed a spectrum disorder because it affects each individual differently and to varying degrees. Signs of autism spectrum disorder (ASD) typically appear during a child’s first three years and result from a neurological problem with brain function.
A disorder that affects boys four times as often as girls and places siblings of a child with autism at higher risk, ASD seems to have a genetic component. But scientists don’t really know what causes it.
Autism can be a confusing disorder because, as one of five pervasive development disorders (PDDs) that also include Asperger disorder, childhood disintegrative disorder, Rett disorder and pervasive development disorder-not otherwise specified (PDD-NOS), many of the terms to describe it often mean the same thing. ASD and the disorders listed above share features that include social impairments, communication deficits and restricted or repetitive activities as primary symptoms.
Development in communication skills is delayed or absent in children with autism, which means they typically show difficulties in social interaction and daily activities.
Elizabeth Beltran, a
“The main thing I wanted help for was his self-injuring,” says Beltran. “He was head-banging, and we couldn’t get him to stop.”
Although self-injuring behavior is not uncommon among children with the disorder, it isn’t a primary symptom. Among the constellation of typical ASD behaviors are repetitive movements, such as rocking and twirling or a narrow range of favorite topics or interests. Experts believe that compulsive behaviors can be a way for some children to calm themselves when over-stimulated, to relieve boredom or to cope with the frustration of not being able to express their needs.
“Dominique’s sensory control just doesn’t work,” says Beltran, who left a career in administrative law to study behavior modification after her son was diagnosed. “These kids are in their own world,” she adds. “Dominique desperately wants to communicate, but it’s tragic because for a while, it just wasn’t there.”
Identifying Early Signs
The great news is that with early diagnosis, therapy and intervention actually work. That’s why it’s crucial to spot the symptoms early.
“We look at the early years from infancy into early childhood as an overall window of opportunity,” says Laurie LeComer, M.Ed., author of A Parent’s Guide to Developmental Delays: Recognizing and Coping With Missed Milestones in Speech, Movement, Learning and Other Areas. “Because of what we know about the growth of a child’s brain during this time, early intervention and help can literally affect a child’s brain growth and therefore the skill growth of a child.”
LeComer, a Connecticut-based special education evaluator for children with known and suspected developmental delays and disabilities, offers this partial list of red flags of atypical behavior that can be signs of autism:
tyle="mso-bidi-font-weight: normal">At 9 to 10 months:
• Doesn’t show clear signs of attachment to a favored adult
• Doesn’t babble
• Doesn’t respond to his or her name
From 12 months on:
• Loses words he or she previously had mastered
• Engages in unusual play for sustained periods of time, such as flicking switches, spinning objects, or opening and closing cabinets
• Seems uninterested in other children
• Has fleeting or no eye contact
• Seems fearless and unaware of dangers
• Has extreme sensitivities and extreme reactions that are hard to understand
• Doesn’t use language to communicate, or uses it oddly – possibly echoing words or phrases back to you
• Reacts in extreme way when interrupted or moved
Whether your child displays some clear signs or even mild signs of autism, the first step is to visit your pediatrician.
“You want your concerns to be noted, and you want to make sure your child does not have a medical condition that may be causing the autistic-like symptoms,” says LeComer. Parents who observe several red flag symptoms, or have suspicions that their child isn’t developing quite as he or she should, must be proactive. “It’s imperative that your child’s vision and hearing be checked because vision and hearing impairments can cause look-alike symptoms,” explains LeComer. “With early help, autistic children can make significant progress. Early vigilance for developmental delays is literally a gift you give your child.”A Whole
A child’s early years are precious and irreplaceable, so there’s little time to waste with a “wait-and see” approach. Seek proper diagnosis from adequately trained child psychologist and developmental pediatrician as soon as you have any suspicions or questions.
; FONT-FAMILY: Verdana">When it comes to treatments for ASDs, one size definitely does not fit all, so parents need to make critical choices.
; FONT-FAMILY: Verdana">“The first thing we did was call another mom,” says
; FONT-FAMILY: Verdana">When it comes to navigating the challenges of parenting a child with ASD, other parents can be the best source of information and support.
“Don’t isolate yourself,” urges Greenwald. “There are a lot of resources out there. What we do now is network with each other.”
; FONT-FAMILY: Verdana">Many parents have found the following common treatments helpful:
; FONT-FAMILY: Verdana">• Augmented and Alternative Communication therapy (AAC) – Methods such as sign language and pictures are used to help nonverbal children express their needs.
; FONT-FAMILY: Verdana">• Developmental, Individual Difference, Relationship-based (DIR) Model/Floortime – Developed by Drs. Stanley Greenspan and Serena Wieder, this approach is designed to bring autistic children out of their world by essentially joining them in theirs.
; FONT-FAMILY: Verdana">• Dietary supplements and gluten-free/caffeine-free diets (GF-CF) – Based on the theory that children with ASDs may be deficient in certain brain biochemicals, there are a variety of dietary approaches designed to improve autistic symptoms.
• Early Intensive Behavior Intervention (EIBI) and Applied Behavior Analysis (ABA) – Designed to increase skills through intensive, repetitive and highly structured teaching, this therapy was pioneered by Dr. O. Ivaar Lovaas, professor emeritus at UCLA. This approach breaks down complex tasks into smaller components so children can learn more easily.
• Sensory Integration therapy (SI) – This type of therapy is geared toward helping children process the incoming information from their senses in a more typical way. Activities can vary from swinging in a hammock to wearing a weighted vest, depending on each child’s area of difficulty.
Autism’s causes and cures are not known, so parents need to be wary of any unproven treatments or interventions that claim to offer amazing results without the benefit of the scientific method of evaluation.
“Be proactive about behavior therapies and investigate,” Greenwald suggests. “It will make a world of difference.”
Stars of the Spectrum
One of the disorder’s main challenges is identifying each child’s individual motivations and interests in order to draw him or her out of isolation and make a connection.
• Surfer’s Healing – Autistic children can suffer from sensory overload, and the ocean is where many seem to find respite at this free surf camp founded by Israel and Danielle Paskowitz, whose son, Isaiah, was diagnosed with autism at age 3. This unique therapy brings children and their families together to catch a wave of fun with an emphasis on safety and focus on personal attention. Dive into a day of riding the surf in
• Miracle Project – This theater and film arts program for preschoolers and above helps aspiring artists and performers of all abilities to develop skills in everything from writing to directing, choreographing to stage managing, and claim their moment to shine on stage. Check it out online at www.themiracleproject.org or call The Miracle Project Autism Program at 310-829-7034.
• Actors for Autism – This program offers training in the arts for students of all ages who too often hear the word “no” when trying to be included, explains founder and executive director Alisa Wolf. “I couldn’t find the program I wanted for my children, who are both on the autistic spectrum,” she says, “so I created one.”
In collaboration with Joey Travolta, the classes teach acting and a variety of arts to improve a child’s confidence and skills. Award-winning documentary filmmaker Taylor Cross is among the program’s alumni. His film documenting his life with autism, Normal People Scare Me, is soon to be released. Call 877-ACT-7006 for dates of upcoming classes/events or visit www.actorsforautism.com.
• Lend a Paw – The organization provides assistance to not only homeless animals but people in need. “Animals allow a compelling way for children, whose feelings may often be dismissed, to communicate their love and feelings,” says Alec Isbell, director of program development for New Leash on Life. “Shelter dogs are like children with the spectrum disorders of Asperger’s and autism. They are completely misunderstood in both cases,” says Isbell. The program trains rescued dogs to work in one-on-one and group therapeutic settings and may be available to be permanently placed with families in need. Find out more at www.newleash.org or call 661-255-0097 or 818-710-9898.
Whether it’s through interactions with animals or random discoveries, kids with autism can, and do, find ways to connect to the world through different means and on varying levels. But it’s up to caregivers, researchers and others to help find the light that will take the child – and autism – out of the darkness.
The controversial theory that the use of thimerosal, a mercury-based preservative that was once used in the MMR (measles, mumps and rubella) vaccine, could be the cause has been shown to have no scientific link. Autism researchers say that it’s merely coincidence that symptoms of autism tend to become most observable around the same age that children receive immunizations. Numerous studies worldwide have shown that the relationship between vaccines and autism, if any, is not one of cause and effect. It appears that there may be a variety of environmental and genetic factors in several different combinations that can lead to the disorder. Several federal agencies, including the Centers for Disease Control and Prevention (CDC), the National Institutes of Health and the Food and Drug Administration, are dedicated to ensuring the safety of vaccines. According to the FDA, “additional studies are needed to establish or reject a causal relationship.” Despite lack of evidence of any dangers, thimerosal is no longer used in vaccines. “The committee did conclude that the hypothesis that exposure to thimerosal-containing vaccines could be associated with neurodevelopmental disorders was biologically plausible,” the National Vaccine Advisory Committee reports on the Center for Biologics Evaluation and Research Web site. The benefits of immunizations have been proven to vastly outweigh any possible risks, and, according to the latest research, parents should follow the recommended schedule for childhood immunizations. For more information visit the CDC’s report FAQ about the MMR vaccine and autism at www.cdc.gov.
Do Immunizations Cause Autism?
Scientists are getting closer to unlocking the mystery behind the causes of autism. But so far, modern science has failed to identify a cause. There are many theories, but none has yet been proven conclusively.
The controversial theory that the use of thimerosal, a mercury-based preservative that was once used in the MMR (measles, mumps and rubella) vaccine, could be the cause has been shown to have no scientific link.
Autism researchers say that it’s merely coincidence that symptoms of autism tend to become most observable around the same age that children receive immunizations. Numerous studies worldwide have shown that the relationship between vaccines and autism, if any, is not one of cause and effect. It appears that there may be a variety of environmental and genetic factors in several different combinations that can lead to the disorder.
Several federal agencies, including the Centers for Disease Control and Prevention (CDC), the National Institutes of Health and the Food and Drug Administration, are dedicated to ensuring the safety of vaccines. According to the FDA, “additional studies are needed to establish or reject a causal relationship.”
Despite lack of evidence of any dangers, thimerosal is no longer used in vaccines. “The committee did conclude that the hypothesis that exposure to thimerosal-containing vaccines could be associated with neurodevelopmental disorders was biologically plausible,” the National Vaccine Advisory Committee reports on the Center for Biologics Evaluation and Research Web site.
The benefits of immunizations have been proven to vastly outweigh any possible risks, and, according to the latest research, parents should follow the recommended schedule for childhood immunizations.
For more information visit the CDC’s report FAQ about the MMR vaccine and autism at www.cdc.gov.