The Centers for Disease Control and Prevention estimates that about three children in every one thousand between the ages of three and ten will be diagnosed with an autism spectrum disorder (ASD), a disorder that was virtually unheard of 30 years ago. Experts are largely unsure as to why there are so many more children being diagnosed with an ASD but many believe like Whitney Villanueva, an Oklahoma City mom of two children, both with autism spectrum disorders. “I think they (individuals with autism) are diagnosed more,” Whitney explains. “But I think it’s more of what we used to consider quirkiness is actually an autism spectrum disorder.”
What is Autism?
Autism is one of five developmental disorders found on the autism spectrum. General ASD symptoms may include:
Repetitive body movements or behavior patterns
Difficulty with changes in routine or familiar surroundings
Problems with using and understanding language
Difficulty relating to people, objects and events
Unusual play with toys and other objects
ASD symptoms are often noticed in children between ages three and ten, and often as early as age one. There is no known definite cause or treatment for ASDs at this time.
Living With Autism
Being the parent of two children with ASDs can be challenging at many times, but Whitney and her husband Albert don’t know any other way. “In our house we don’t know what a ‘typical’ kid is because we don’t have one,” said Whitney.
The impact of autism can be felt beyond the borders of the Villanueva family. “I’ve lost friends that were friends prior to having kids. They had neuro-typical children but our kids don’t fit in that box. So they didn’t find any similarities,” she said. “They would still talk to me but they didn’t know how to handle my kids.”
On the other side of that coin, “The amount of people that we’ve met because of [autism] is huge.” She compares living with autism to living among a ‘secret society,’ in which the residents can really relax, secure in the knowledge that there is no judgment from one another. “The people we know can come to our house or we can go to their house and we don’t feel like we have to constantly follow our kids around to see what they are doing,” said Whitney.
Processing and Generalizing
“It’s a processing thing,” said Whitney. Kids with ASDs don’t realize that things are supposed to go in a pre-set order, like A-B-C. “They want to go A-C-B,” said Whitney. “They’re not sure of the sequencing.”
Other things that people with typically-developing kids may not understand is that what may be thought of as a simple process—like brushing your teeth—is a much larger undertaking for children with ASDs. “Something that would take us just three steps you have to break down into ten,” said Whitney. “You think, you just go in there and brush your teeth; but you have to go in there, turn on the light, pick up the toothbrush, pick up the toothpaste, take the cap off. You have to break it down into baby steps for the kids for them to understand the process.”
But don’t generalize, because that would be a mistake. “Albert and I speak at autism training for teachers,” said Whitney. “I always make it very clear: things that I talk about are in our case. If you’ve seen one autistic kid, then you’ve seen one autistic kid. They’re all so different.”
Understanding Diego, age 12
Whitney’s oldest child, Diego, showed some developmental delays as a toddler. “Diego did not speak until he was three,” said Whitney. “At about age 2 ½ we got involved with SoonerStart.” At age three, Diego became too old for SoonerStart and began attending a private preschool, and one of the speech therapists at the school mentioned that Diego may have Asperger’s.
According to the Autism Society of America, children with Asperger’s syndrome may have mild symptoms and present to others as a “typical” child who acts a bit differently. Children with Asperger’s want to fit in but aren’t sure how to do it. There is generally not a speech delay in children with Asperger’s, but obsessive behavior is common. Whitney notes that these are just a few of the symptoms, and they are generalizations. Whitney has noticed the obsessive behavior in her son. “We went to the Mall of the Americas and Diego memorized the floor plan of all the levels of the mall.” She has also noticed that as Diego gets older (he is currently 12), his ability to cope with societal expectations is advancing. “Diego has found it’s easier to say he’s a vegetarian because he doesn’t like red meat and he has a very limited diet of things that he’ll eat. He doesn’t like sweets and will say he’s allergic to chocolate because he doesn’t like it, and people don’t understand that.”
Understanding Melina, age 8
When Diego was about four, Whitney’s daughter Melina was born. “When Melina came along, at about 18 months she wasn’t speaking or relating. We kind of knew what to look for, so we began SoonerStart.” Melina was diagnosed as autistic when she was four by a pediatric neurologist. Through testing, it was determined that she had major indicators of autism, which were evidenced by her interactions with both people and objects. “Melina didn’t say ‘mama’ until she was about 4 ½ years old,” said Whitney.
The Learning Curve
Make no mistake, it has not been an easy road for Whitney and her husband, Albert. “My mindset was: I did this, so I have to fix this,” said Whitney. “It’s sad because you see all these other parents get to do that. You’re running your kids to occupational therapy, physical therapy or speech. You go through that, when you first get the diagnoses,” said Whitney.
Whitney was able to let go of trying to "fix" her family and learned to embrace it instead. “I heard of a poem called ‘Welcome to Holland’ which explains that when you have a special needs child, it’s like planning a trip. You plan and prepare for Italy, but when you land, you’re in Holland. I was reminded that it’s still beautiful and wonderful, it’s just different than you expected.”
Whitney names Dee Blose, of the Canadian Valley Autism Center, as a huge help to her when she first learned of her children’s ASD diagnoses. “She kind of led the way for us,” said Whitney. “I had all these visions of what was going to be and I had to let go of all of those dreams and connect with what I had.”
Knowledge is Power: Is it ASD?
“My husband and I both went through a ‘dark period’ when our children were diagnosed, but it quickly faded as we began to branch out and meet many other parents who are just like us with children on the autism spectrum—and let me tell you, these are incredible people. We have formed some wonderful close friends through the Autism Society of Central Oklahoma, the Canadian Valley Support group and Team Autism.”
For those who suspect their child may be on the ASD spectrum, Whitney advises, “The one thing that people need to realize is the importance of early intervention. If you think it’s a problem, then act on it. Don’t listen to those who tell you that nothing is wrong if your gut tells you that something is wrong.”
Autism Spectrum Disorders:
There are five “pervasive developmental disorders” found on the autism spectrum:
Childhood disintegrative disorder
Pervasive developmental disorder
Autism is the most characteristic and best-studied of these. ASDs are all characterized by delay of social and communication skills. Children with such disorders vary widely in abilities, intelligence, and behaviors. Experts agree that early intervention and specialized education are key components in treating the condition.
Resources for Families:
National Institute of Mental Health: nimh.nih.gov/ health/publications/autism/complete-index.shtml
Oklahoma Autism Network: okautism.org (includes a list of local parent-led organizations)
Oklahoma Autism Network: ah.ouhsc.edu/tolbert/ OKAutism.asp
Autism Society of America—Central OK: asofok.org
Mari Farthing is the Editor of MetroFamily Magazine.