SARATOGA SPRINGS – The twins are 13 now, the effort to fulfill their special needs a continuing work-in-progress.
“I have to say my boys have some difficult challenges, but they’re hard workers and every day they make progress, every day they learn,” explains the boys’ mother, Kristin Howarth. “It’s not a sprint, but a marathon. You just keep pushing and keep teaching and keep helping them make those milestones.”
A little over a decade ago, Howarth and her husband relocated to upstate New York. The twins were about 18 months old when The Howarths noticed the boys seemed delayed in meeting some of their developmental milestones.
“We started a music program with the boys when they were just over a year. We looked around at the group and saw what the other kids were doing and what my kids weren’t,” Howarth recalled. “At around a year old there’s a certain number of words that a typically-developing child will say, that our guys were not saying. It made me ask some questions. It was a significant factor that made us speak out and have discussions with our pediatrician,” Howarth says.
The American Academy of Pediatrics recommends that children be screened for general development using standardized, validated tools at 9, 18, and 24 or 30 months and for autism at 18 and 24 months, or whenever a parent or provider has a concern.
By their first birthday, a child will typically say “mama” and “dada” and voice exclamations like “uh-oh!” as well as trying to repeat words they hear from their parents, according to the Centers for Disease Control and Prevention. The CDC’s milestones checklist may downloaded here: https://www.cdc.gov/ncbddd/actearly/pdf/checklists/all_checklists.pdf.
An early intervention therapist was sent to work with the family, visiting the home four days a week over the next six months, after which Gavin and Noah were diagnosed with autism, also called autism spectrum disorder (ASD).
“When you do hear it, it’s a blow and all of these things you picture as a parent come crashing down: Will my children ever play sports? Will they have friends and go to the prom? Will they drive? will they get married?” she wondered. “There’s no welcoming committee when your child is diagnosed with autism. No one comes and knocks on your door to say: Here are some things that you can do; Here’s a go-to guide. You basically leave the doctor’s office after that diagnosis and you think: What do I do now?”
The CDC estimates that 1 in 68 children, in multiple communities in the United States, has been identified with autism spectrum disorder, or ASD - roughly 30 percent higher than estimates previously reported in 2012. The data also show that ASD is almost five times more common among boys than girls.
Howarth searched the Internet, but answers were hard to come by a decade ago. “They were diagnosed at just over two years of age and it quickly became pretty obvious to us that there weren’t a lot of resources in our area, short of traveling down to Albany,” she says. “It was a challenge because we live up in Queensbury. We figured, why can’t we create it? So, we did.”
Gavin and Noah were the driving force behind the creation of Upstate NY Autism Alliance (UNYAA). The organization provides resources, education, recreation and advocacy services. Howarth provides advocacy, program development, consulting and education through the group.
“It was a very emotional time and that was also one of the factors in starting the group. We wanted to give children as many opportunities as we could, just like their typically developing peers, because they’re kids first. Autism is secondary.”
Howarth’s group is comprised of volunteers who help connect parents with children diagnosed with autism, with resources. “We also provide activities every month so parents can get together with their children and talk to other families and meet other people in their school district - families involved in the group, somebody they can feel comfortable talking with,” says Howarth, who adds that she has also accessed valuable services from Saratoga Bridges. “They have some wonderful things that provide services for families such as ours.”
UNYAA and Saratoga Bridges are teaming up to co-host this weekend’s Autism Expo at the Saratoga Springs City Center. The family event will feature more than 85 vendors and exhibitors, a variety of activities and games, arts and crafts, and sensory toys for kids. More than 1,000 people are expected to attend Sunday’s expo.
“It’s an amazing event under one roof. We have all these resources for families who can talk to different vendors, providers, and people who offer different services for kids in the spectrum,” Howarth says.
ASD is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
“They have to be taught in a different way and broken down into simple steps. People don’t really understand what autism is, but really, it’s just that their brains are wired differently. They don’t learn the way we do, or they may not interpret things the way we do,” Howarth says.
All of the causes of ASD are not known. There may be many different factors that make a child more likely to have an ASD, including environmental and genetic factors.
“They look typical, but they don’t process information – both incoming and outgoing – so it can be a challenge for them to just pick up those social cues like another child might.”
The sixth annual Autism Expo will be held noon to 3 p.m. Sunday, April 23 at the Saratoga Springs City Center. The event is free and features exhibitors from camps, school programs pre-k through college, technological apps for autism, recreation and therapeutic programs, a bounce house and arts and crafts.
Upstate NY Autism Alliance (UNYAA) is a not-for-profit alliance formed by dedicated parents of children experiencing the affects of Autism Spectrum Disorder (ASD). For more information, go to: http://www.upstatenyautism.org/. Saratoga Bridges has provided programs to people with disabilities and their families for more than 60 years. For more information, go to: http://www.saratogabridges.org/.