SYKESVILLE – As the parent of a child with autism, Lisa Witherite of Sykesville is part of a rapidly increasing group. With autism diagnoses up sharply in the U.S., 23 percent over two years according to a Center for Disease Control study, more parents than ever before are faced with the difficulties associated with raising an autistic child.
Autism Spectrum Disorder (ASD) encompasses a variety of developmental disorders impacting most aspects of parenting, from the way a child is educated, fed, socialized, and disciplined. Witherite said the challenges it creates include "dealing with behavior difficulties, lack of communication, frustration, and daily living skills."
Witherite's son Ryan was 4 years old when he was diagnosed with moderate to severe autism at the Child Development Unit in Pittsburgh. Witherite said that due to his condition, Ryan, now a teenager, functions in many ways as a preschooler would.
"I refer to him as having low-functioning autism as he is still like a 2-year-old, although he is 15 now," Witherite said.
Witherite said Ryan's development appeared normal as an infant and toddler, but around 2 years old, he began to exhibit difficulties with language and socialization, both behaviors typically characteristic of ASD.
"Although I am sure this is different for everyone, Ryan seemed to develop normal until around age two. Around this time, he seemed to be losing language and becoming withdrawn," Witherite said.
At this time, she said, Ryan's difficulty with social and verbal capabilities, both common features of autism, began to manifest themselves in the form of outbursts and avoidance of social interaction.
"Some things I really remember are that he was in daycare and although it was the same daycare, he started getting really upset and screaming when we would take him...Also, when someone would come to our house, he would start screaming. At the playground, if he was in an area playing and other kids came around him, he would leave and go somewhere else. These are all things that I noticed between 2-3 [years old]. It wasn't just one sudden change, but changes over time. Also, sleep problems," Witherite said.
According to Autism Speaks, an advocacy organization, between 44 and 83 percent of children with autism have or still suffer from sleep problems, including difficulty falling asleep, staying asleep, or waking very early in the morning. While there is no definitive cause for this, some experts theorize that increased sensitivity to outside stimuli; inability to recognize cues such as equating night or darkness with sleep; or irregular levels of melatonin, a hormone responsible for regulating sleep-wake cycles, may be clues.
Witherite said that at three years old, Ryan was enrolled in the Early Intervention Program through their local Intermediate Unit (IU). Witherite said that while she had limited knowledge of autism at the time, based on sporadic information she gathered, it was the likeliest explanation for Ryan's difficulties.
"At the time I had little knowledge of autism, but from the little I had read, I believed this was his problem. When he started at the IU, the teacher and speech therapist he worked with had no knowledge of autism," Witherite said, demonstrating how relatively misunderstood or under-recognized ASD has been as recently as 12 years ago.
Ryan received speech therapy two to three days a week for a few hours a day in the IU class, as well as at DuBois Regional Medical Center for an additional two days a week.
Witherite said that after Ryan exhibited no signs of improvement, she was referred to the Child Development Unit in Pittsburgh, where he was subsequently diagnosed.
"They [IU staff] were wonderful and we learned together, but when there were no changes, my family physician referred me to the Child Development Unit. There was a six-month waiting period at the time," Witherite said.
Witherite said that while she was prepared for the diagnosis, having already made the determination on her own, she was not prepared for all that is entailed in parenting an autistic child.
"We weren't in shock or surprised when he was diagnosed because by then we had diagnosed him. We just wanted to know what we could do to help him. We had no idea at the time that it wasn't just something you got help for and it got better. Every day is still a struggle," Witherite said.
Following his diagnosis, Ryan continued to receive treatments, including occupational therapy and home services with a TSS (Therapeutic Staff Support) and BSC (Behavioral Specialist Consultant).
Treatments like occupational therapy differ depending on the needs of the individual, but the goal is to enable them to better perform activities of daily living (ADLs), which often include feeding and dressing themselves, social participation, education, and general safety. TSS and BSC services aim to encourage pro-social behaviors and assist in acclimating an autistic individual to social settings through modeling a desired behavior and interactions with teachers, parents, and community.
Witherite said the process of obtaining approval for services and treatment is a complicated and often lengthy one.
"All of these things take time being approved, being approved, and getting started," Witherite said. "So he was about 4 1/2 when he received TSS services at home and I believe the OT services were started at the IU soon after the diagnosis."
Ryan eventually had a TSS in school with him while continuing TSS services at home. Ryan has also attended a social skills group and has received music therapy for a number of years.
Witherite said that schooling has been a crucial means of treating Ryan's autism, and that following his transition from public school to the Central Pennsylvania Autism Spectrum Disorders Academy, a private school for autistic children, she has seen major improvements in his behavior, receptive language, and daily living skills.
"Schooling has probably been the most important thing. Prior to being in a private autism school, Ryan had been in both a life skills class and an autism class in the local school district, and in younger years we had attempted integration in a regular ed classroom for a short time during the day (music, groups)," Witherite said.
While Ryan has exhibited progress through a combination of therapies and consistency in his school environment, Witherite said that he still struggles with socialization, adding, " He really does not socially interact with anyone other than family."
Witherite said that Ryan's communication skills are still severely limited to basic units of language.
"He is able to ask for food/drink and basic needs like a bath/use of the restroom, but he does not have conversations. He will say 'hi,' 'good morning,' 'goodbye,' but sometimes needs prompted to do that. His school has worked very hard this year with him on learning staff names and he is able to say 'good morning'/'goodbye' and their names," Witherite said.
Witherite said that as Ryan has come into adolescence, it appears his behavior is more stable, adding that he seems "calmer and happier."
"Some of this may be related to his medical issues and feeling better. He is actually a happy kid and smiles and giggles, but when he is upset, having sensory overload or medical issues with his stomach, the behavior is like day/night," Witherite said. "This has happened a lot less than in the past. As with all autistic children, he likes routine and familiarity and sometimes a change with these can upset him. This was much worse when he was younger. He has come a long way in most areas."
In reflecting on the demands of raising an autistic child and how they differ from those of raising children without ASD, Witherite said the two are entirely different circumstances in terms of how much attention a child requires.
"I am sure a total change from how life would be without an autistic child. Life has had to center around him and his needs," Witherite said.
As for the increased awareness of ASD that has benefitted parents like Witherite and their children through increased quality and availability of treatment, academic accommodations, and better public understanding, to name a few, Witherite hopes more attention paid to the cause will result in more accurate diagnoses and more effective therapies.
"I believe that autism is more widely recognized than in the past and hopefully earlier detection and treatment will lead to better outcomes for those in the lower-functioning range," Witherite said.
Witherite said her hopes for the future with Ryan right now focus on short-term goals, including his participation in a sheltered workshop.
"That would be the goal we would work towards as of now unless we would see some dramatic improvement," Witherite said.
Witherite said she does not know of any programs geared specially towards autistic adults that would be available to Ryan as he continues to grow up, adding, "We never give up hope, but have to plan for reality too."