I recently found out that the active little bundle I’ve been carrying in my womb for nearly six months is a boy. And he appears healthy. He has two legs. Two arms. All his organs are developing well and his spine looks fantastic. Most people would be elated by this news.
However, I am concerned about bringing this boy into the world. Yes, parents have all sorts of worries about their unborn child. But I have a particular fear that my little boy will be autistic.
The U.S. Centers for Disease Control and Prevention says that 1 in 88 American children have autism. It affects one in 54 boys. That means autism is four to five times more likely to appear in a boy than a girl. It’s an alarming rate.
Incredible progress has been made in the past couple decades understanding what autism is, how and why it occurs, and what the best course of action is for people who are diagnosed with it. But there is an equal number of myths and misunderstandings about this complex disorder.
We reached out to local parents of autistic children and some of Southwest Florida’s top therapy agencies and advocacy groups to ask them what they feel you should know about autism. Here is their list:
Autism is a spectrum
Autism Speaks, which bills itself as the world’s leading autism science and advocacy organization, describes autism as a complex brain development disorder. But Autism Speaks, and anyone familiar with autism, also will tell you that it appears in a broad variety of ways. That’s why you may have heard the term Autism Spectrum Disorder, or ASD.
ASD is “characterized by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors,” states Autism Speaks. It includes autistic disorder, but also other subtypes like Asperger Syndrome and childhood disintegrative disorder. Previously, clinicians would diagnose each disorder on its own and those diagnoses could vary depending on how the checklist of symptoms was used. This caused inconsistencies in ASD diagnoses for years.
“You can see the unlimited ways that persons with the same diagnosis can be very different from one another,” states Leigh Anna Nowak, a consultant at the Center for Autism and Related Disabilities-USF (CARD) at Florida Gulf Coast University in Fort Myers.
In an unprecedented move set to take effect this spring, the American Psychiatric Association is recommending that all autism subtypes be collapsed into one unifying diagnosis of ASD.
Normal social interactions between people may be difficult for people with ASD. Things like body language, tone of voice, gestures, and facial expressions may be hard for them to read or to demonstrate on their own. More extreme cases of ASD may include repetitive behaviors, sensory problems, and seizures.
Experts have not determined a cause of ASD but researchers have identified some gene mutations associated with autism. Symptoms of ASD can appear as early as 12 months, but most doctors determine a diagnosis around two years of age.
You can’t grow out of autism
An ASD diagnosis is not a death-sentence. It won’t kill you. In fact, Autism Speaks says many people “on the spectrum have exceptional abilities in visual skills, music, and academic skills. About 40 percent have average to above average intellectual abilities. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.”
But you can’t outgrow autism. It’s a lifelong disability. Only now, says one Fort Myers mom of a 14-year-old boy with ASD who prefers to remain anonymous, are people really becoming aware how ASD has affected families and will continue to do so.
“My heart aches for all the adults with autism out there now as I know how their parents have struggled and they had even fewer services than we do today,” she explains. “Now we have a huge flood of teens and adults coming down the pipeline and no one seems to be preparing for this. The parents won’t be able to take care of the large kids or adults with intense behavior problems.”
Early intervention is crucial
The sooner a child on the spectrum begins intensive therapy treatments, the better. In fact, a report published this fall in the Journal of the American Academy of Child & Adolescent Psychiatry shows that early intervention starting as early as 12 months can improve social skills and the brain’s responses to social cues.
Scott Kozlowski, the Elementary Exceptional Student Education (ESE) Coordinator for Collier County Public Schools, says students with ASD are able to attend the district’s pre-K programs starting at age three and can stay in the school until they turn 21. “We provide instruction in language and social development, and have the added benefit of a full time behavior analyst at each cluster site for behavioral and programming support, Kozlowski states.
Early intervention during pregnancy–taking folic acid supplements before and during pregnancy–may also lower the risk of ASD. A Journal of the American Medical Association study published in February shows that women who took the supplement four weeks before pregnancy, and through the eighth week of pregnancy, were 39 percent less likely to have children with autism.
Services vary by state
The diagnosis is just the beginning of a long-traveled road of finding the right resources to ensure your child has the best start on a functional life. Parents usually get a diagnosis from their child’s pediatrician, although this can take a lot of advocacy work.
Sharon Boyd, a mother of five from Port Charlotte, says it took repeated requests for an ASD evaluation before her now 13-year-old son Austin was diagnosed.
“We really had absolutely no idea that it was autism. In fact, we were floored when the diagnosis was first mentioned,” recalls Boyd. “I had mentioned each of my concerns to his pediatrician as they came up, and was told that the differences were because he was a boy, because his sisters were talking for him, and that I was concerned over nothing. Reluctantly, our pediatrician agreed to an evaluation through Early Intervention Services, which we did. It was then that we started to hear the words Autism Spectrum Disorder.”
After that, it’s referral after referral for different therapies like speech, occupational and physical. Insurance coverage isn’t great, but it’s better than it used to be, thanks to the 2008 Autism Insurance Reform Legislation.
“At the time it was impossible to obtain in Charlotte County,” says Boyd. “Our insurance didn’t cover it, and Medicaid was unavailable to us due to my income as a Registered Nurse. Eventually I quit my job to qualify for Medicaid and it was then that I found out that even Medicaid wouldn’t cover the ABA (Applied Behavior Analysis) he so desperately needed. They would pay for a helmet to protect him when he banged his head on the floor, but not the therapy to teach him not to bang his head. It was insane.”
The Fort Myers mom of an autistic teenager sums it up like this: “Florida in general is a horrific place for autism medical services.”
Parents need emotional support
Support can mean many different things to parents of autistic children. Emotional, financial, therapeutic, religious, educational, legal ... many of these things will come into play after learning about, and coping with, your child’s autism. But support is not one-size-fits-all so the best way to find out how to help a friend or relative navigating the ASD world is to ask.
There are local support and parent-advocacy groups. Boyd founded Parents In Action, Inc., after her son’s diagnosis. “It’s a way for who we consider the true experts, the families, loved ones, and providers of services, to work together aside from the bureaucracy, to think outside of the box, and develop a cost-effective yet successful method and system to handle the tsunami of need that has come as our children continue to grow older and require even more assistance,” she says. “We realize that to face this crisis head on, we must be part of the solution.”
The Adonis Autism Assistance Foundation is another great volunteer-run resource. It was started by a group of parents who had children with ASD who understand the ups and downs families experience. Today, Adonis helps families make sense of an ASD diagnosis and provides information on therapy agencies and support in the area.
The National Institutes of Mental Health states these as possible indicators of autism:
• no babbling, pointing, or meaningful gestures by one year of age;
• no one-word communications by 16 months;
• no two-word phrases by two years;
• loss of language or social skills;
• poor eye contact;
• inability to play appropriately with toys;
• unusual attachment to one particular toy or object;
• no smiling;
• apparent lack of response to sounds or voices and name being called.
Patricia Carlson is a full-time freelance writer, editor and media coach who divides her time between Minnesota and Florida. See more of her work at www.patriciacarlsonfreelance.com.