By Fran Kritz
Ask about her students and Tammy Anderson, head of the Aqua Pros Swim School in San Diego, is likely to tell you about Braxton Edwards, 16.
Braxton isn’t Anderson’s most proficient swimmer, and he doesn’t have much form. But, after a slew of lessons and plenty of family nights at the pool, Braxton, who is on the autism spectrum, can float in deep water and get himself safely out of the pool if he were to fall in.
Braxton’s lessons began at age 5, said his mom, Yolanda Edwards. The family went to Anderson’s lessons because she specializes in teaching kids with autism how to swim.
Anderson, like many people who work with children with autism, knows that kids on the spectrum are at far higher risk of drowning than other children in part because they are often terrified of new situations, such as learning to swim.
A study published in March in the American Journal of Public Health by researchers at Columbia University’s Mailman School of Public Health in New York City, found that based on a review of 39 million U.S. death certificates over a 14-year period ending in 2014 the average age at death for people with autism was 36 years younger than for the general population. People with autism died, on average, at 36 years of age instead of 72. The three leading causes of death, for people with autism, were suffocation, asphyxiation and drowning, according to information from death certificates.
“Given the exceptionally heightened risk of drowning for children with autism, swimming classes should be the intervention of top priority,” said Guohua Li, the founding director of the Center for Injury Epidemiology and Prevention at Columbia University in New York City and the study’s senior author.
The drowning risk comes from two characteristics of autism, Li said. One is the tendency for children with autism to wander, and the other is that children with autism find shimmering, lapping water to be calming.
“In California those characteristics are compounded by the plethora of swimming pools and bodies of water, as well as a tendency for children with autism to bolt,” said Shafali Spurling Jeste, an associate professor of psychiatry and neurology at the UCLA David Geffen School of Medicine.
But both the cost of swimming lessons and the fact that there are too few specialized swim instructors make it difficult for many children with autism to learn to swim.
According to a 2015 report by the Autism Society San Francisco Bay Area there are 76,000 people on the autism spectrum in California, a 28-fold increase since 1987—and 80 percent are below age 21.
A 2012 study in the journal Pediatrics found that family earnings of children on the autism spectrum are 28 percent less than those of children with no health limitation for reasons that include one parent less likely to work or to work fewer hours because of the child’s needs as well as expenses for the condition that can include the cost or co-pays for specialized services such as speech and occupational therapies.
Edwards, Braxton’s mom, is a single mother earning $50,000 annually as a county respiratory therapist. She recently declared bankruptcy after her health insurers determined that they were not required to cover some therapies for Braxton, who does not speak, she said.
Her cost at Aqua Pros was $60 for eight lessons, the price Anderson charges for children on the autism spectrum, some of whom get a further $25 reduction, based on income, from the Autism Society of San Diego, where Anderson is a board member. The same number of lessons is $280 for children without a disability.
“Without the discount there’s just no way I could have afforded the swim classes, and in addition to being one of the things Braxton loves, if he fell in water I know he’d be able to get himself out,” his mother said.
Tammy Anderson began teaching children with autism after a parent called almost twenty years ago and asked for lessons. The parent’s daughter, Amanda, was five years old, on the autism spectrum and was aggressive and non-verbal. The parent wanted Amanda to be able to play in the water.
Anderson created her own system, including holding Amanda tight to calm her. The child, to the surprise of her mother, learned to swim.
“The keys are persistence, patience and finding out how each child ticks,” said Anderson who holds an annual conference in San Diego and does trainings around the world to teach swim instructors how to work with children who have autism.
Aqua Pros also has free monthly swim and pizza parties only for families who have a child with autism. The lifeguards at the parties are trained to watch and monitor, but not to blow whistles and shout, because loud, sudden noises can be difficult for children with autism.
“Many parents use the pool parties as a reward system for other things the child has to do,” Anderson said.
Resources for Families
Autism Speaks, the largest autism advocacy group, which is based in Washington, D.C., gives quarterly grants to swim programs around the country to help defray the cost for families with children who have autism. Families can’t apply for the funding but can check with swim schools, YMCAs and community centers to find out about instruction and cost said Lindsay Naeder, director of the Autism Speaks Autism Response Team and Safety and Wandering Initiatives.
Since the program began in 2014, the organization has given out over $107,000 for autism swimming initiatives in California, including three that received funding this past June.
Anderson has not received an Autism Speaks grant but does get some funding to help defray the cost for some children with autism, based on family income, from the Autism Society of San Diego.
Lindsay Mondick, senior manager of swimming membership and aquatics at the YMCA of the USA, said the organization has given close to 30,000 scholarships nationwide for free lessons in the YMCA’s Safety Around Water program which focuses on helping children know how to get out of the water if they fall in. Although the program is not focused on children with autism, some of the pools in California and elsewhere have staff trained to teach kids on the autism spectrum. Parents should call to ask if the YMCA pool near them has specialized staff members.
The Copley-Price Family YMCA in San Diego, for example, received a grant from Autism Speaks this June and offers four lessons for children with autism for $60 for members and $80 for non-members. The Ventura YMCA also received an Autism Speaks grant in June and its lessons for free, on a first come, first served basis.
The California Department of Developmental Services contracts with 21 regional centers in the state to provide case management and coordinate services for people with developmental disabilities, such as autism. Spokesman Nancy Lungren said “regional center staff are able to assist families with locating and accessing water safety programs and swimming lessons” and the regional centers sometimes help defray the costs for families.
Based on his research Li said swim lessons for kids with autism are so critical he believes the cost for parents should be waived, with government health programs footing the bill.
“Once a child is diagnosed with autism, usually between 2 years and 3 years of age, pediatricians and parents should immediately help enroll the child in swimming classes, before any behavioral therapy, speech therapy or occupational therapy,” he said. “Swimming ability for kids with autism is an imperative survival skill.”