Tags: Education, In This Issue, Parenting, Special Needs
Kathleen Dugan, a professor of art at Anderson University, was 35 when she gave birth to twins Edward and Hannah. Life was good, but hectic and perhaps more difficult than Dugan had imagined.
"My mom kept saying it will get easier once they get older. Then it never got that easy," Dugan said.
Edward and Hannah were born five weeks early, which is common with twins. Hannah was colicky, the pair never got on a schedule and they were slow to reach developmental milestones. Dugan and her husband were routinely told to not worry. Even if the twins weren't hitting all their milestones, evidence showed that multiples typically catch up by age four. As new parents they took this advice at face value.
As the babies became toddlers it was apparent Hannah had a language delay and did not know how to pretend play. Edward vehemently resisted transitions and found comfort in orderly things like alphabet charts. By age three the twins each received a diagnosis of autism.
That was twelve years ago.
Raising Teens with Autism
Today the twins are fifteen and attend Noblesville High School. They've been through a smorgasbord of therapies including behavior therapy, hippotherapy, cranial sacral therapy, occupational therapy, speech therapy, cognitive behavior therapy, music therapy, social groups and others.
Dugan without doubt sees joy in her family life, but the reality is raising kids with autism is not easy. The disorder creates significant social deficits and as children grow and change so do society's social codes. Social rules they learn during elementary years change in middle school, and again in high school, and again in adult life. It's remarkably difficult for individuals with autism to understand the unwritten rules of communication and behavior and to integrate into a mainstream lifestyle.
Though Dugan's children are considered high functioning and tested perfect on a social skills test in fifth grade, they aren't able to apply these skills in life. At fifteen Hannah still asks her mom to help her make friends.
"When they were little I could orchestrate playdates. Now they are teenagers and nobody calls them except one girl. It's heartbreaking," Dugan said, noting that both Edward and Hannah are also diagnosed with depression.
Dugan tells of a fellow middle school student who noticed Hannah sat alone every day and took it upon herself to strike up a conversation. The student may never know how kind her effort was, but Dugan says Hannah credits the girl with saving her life.
It's a poignant illustration of the fact that these kids see what is going on in the world around them. Hannah knew no one wanted to sit with her. She also felt on a very personal level to be an outsider looking in and it felt bad. Yet the average passerby may never have seen her sadness.
"I've often thought these kids who aren't high functioning are taking in stuff but we don't know what they know because we only measure things in language. They know more than we assume," she said. This is one reason Dugan uses her artistic talents to paint kids on the spectrum. It is her attempt to show their fears, joys or other outward expressions that are fleeting at best.
While school may be hard for Edward and Hannah, academics are not the problem. In fact both are in honors classes. Dugan says what's hard for her children is the energy they spend coping with their disorder and trying to understand what other kids are talking about.
For instance, Hannah gets annoyed with girls in her chemistry class who gossip while doing their work. She tries to keep up with the conversation, but rarely understands the social nuances of their chit chat. What she really wants is for them to focus on their work so everyone's job will be easier. It's exhausting and by the day's end she needs a break.
Dugan likens her twins' experience of life to perpetually being at a cocktail party where they don't know anyone and aren't privy to the topics being discussed. It's anxiety ridden and when put in that context, who wouldn't agree?
For this reason, their family spends most weekends and evenings at home. The twins just simply need downtime so they can spend their energy coping with school.
Down the Road
Like many parents Dugan worries if her children will be okay without her.
"I think most parents want to believe their child will go on. That's a big scary thing for a parent of a kid with autism. You have days you think they are okay and days you wonder if they are going to make it when you're not around. As bright as some of these kids are, some have real struggles with things like self-help skills," she said.
In the near term, Dugan wants the twins to go to college, even graduate school. Academically she knows they are capable, but is less confident in their abilities to live in dorms. Maybe they will tackle college first, then see if they can live on their own. One thing at a time.
A Mother's Hope
Whatever their future, Dugan hopes for real change in the way people view individuals with autism.
"I know we are blessed that our kids have cognitive ability and language. But many people think autism is savant-like or the kids hardly speak. The truth is somewhere in between and the reality is your child is not a Rainman movie character or profoundly disabled. These children grow up and we mothers see the social disconnect of a world that says it tolerates diversity, but not on autistic terms," said Dugan.
As parents like Dugan speak out, hope is palpable for more tolerance and understanding of kids like Edward and Hannah.