April is Autism Awareness month. It’s common for autism organizations to rally and promote awareness about the disorder and talk openly about those who are living on the spectrum.
While this is a core message around autism awareness, as a parent, I find that sometimes the support needed for parents or caretakers can be a less-discussed topic. Many parents view autism as a gift, but there is undoubtedly a stress involved in being an autism spectrum parent. I interviewed some autism spectrum parents in the Carson Valley to gain a greater understanding of the challenges, rewards and support needed.
Most parents experience stress, but for those raising children with autism, simple tasks of everyday life often bring stress. They could need to keep their child from running away, manage meltdowns, wrangle with teachers about special education needs, avoid sights or sounds that overload senses, and drive to therapists or doctors.
Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. The ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.
Children with autism have difficulties interacting socially and communicating. These core symptoms limit their ability to interact with others, and it can be painful or frustrating for the parent or other family members. It can leave the parent feeling inadequate, alone, anxious, frustrated or cause emotional pain.
“Communication with my son is really a difficult piece and is one of the most difficult challenges as a parent,” said Wendy Borchert, mother to a son on the spectrum. “I can’t tell when he is hurting, but I celebrate the small things. I remember when he was finally able to tie his shoes in high school and all my other friends who had kids his age were celebrating their kid driving.”
For most parents, stress begins with that "something's wrong" moment when they realize their child isn't talking, interacting, or playing like other children. Since ASD was first recognized in the 1940s, parents have been and felt blamed for their children’s autism. In the early years of autism recognitions, clinicians blamed parents for their children’s autism. Psychoanalysts thought cold, detached parenting must be the cause of their extreme withdrawal from the social world. That idea has since been abandoned, but it is typical for those residual feelings to surface, especially during the diagnosis process.
“I had this great experience with one of our pediatricians, “said Teneale Chapman, mother of three children on the spectrum. “He said to me, I didn’t break my child, my child was born this way. It wasn’t that I didn’t bond with him when my child was a baby, he is just different. He’s different but he’s not less and he will achieve great things.”
Parents often struggle with the fact that their child may not look as though they have a developmental disability. People can sometimes judge the erratic or socially awkward behavior, casting judgement or making assumptions that bad parenting or lack of discipline is to blame.
“Something heartbreaking, he was never invited to birthday parties,” said Toni Gumm, mother to Alex Gumm who is on the spectrum. “It was difficult with other parents not wanting to have a child with special needs in their home. He was excluded from certain things because sometimes other parents would feel uncomfortable with his behaviors. We sought out activities where people would be accepting.”
Challenges for autism parents change as the child continues to grow into being a young adult and into adulthood. In early development years the challenges can consist of trying to navigate therapies, finding therapies that work, and then struggling with the financial restraint that comes with therapies or additional care. As the child ages a parent’s worry shifts to what might happen as they become a young adult and enter the world.
“I lose sleep that someone might take advantage of him,” said Hill. “I lay awake at night hoping that he won’t be in a situation where someone in authority thinks he is being aggressive, or inappropriate and will feel that someone needs to restrain him and he will be harmed.”
In many small rural communities such as the Carson Valley there are no assisted living or vocational programs to help with the transition of heading out into the real world. Its common for parents to worry what will happen when they become to old to give care or pass away.
“When I am gone, who will make sure he’s safe and love him like I do?” said Borchert. “That’s what keeps me awake at night.”
There are those on the spectrum who learn to live individually on their own. Many of them go on to attend college and enter the work force utilizing their gifts and talents.
“One of the greatest gifts is watching them flourish,” said Chapman. “I tell them they will find their people and they will find their passion. It is such a joy to watch them find their place in the world.”
Alex Gumm, Toni Gumm’s son, went to New York after graduating high school to attend the Institute for American Musical Theatre, a Broadway theatre school.
“When I dropped him off in New York, that was the scariest thing because he is naïve and trusting, but he thrived and he navigated New York really well,” said Toni Gumm. “The number one thing I would tell a parent is that you need to expose them to things, people, places and stimuli, even if it is uncomfortable because they can’t live their lives in a protected bubble. People won’t be able to fully understand those with autism, if they don’t see people in their daily lives with autism.”
One thing every parent interviewed agreed on is the support of this community. They all stressed the importance of the support from family, friends, faith-based organizations and other parent groups. Support can come in the form of just listening.
Melissa Blosser is Douglas County community relations and public information manager.