While we are learning more every day about autism and how it affects a person, what is so often – and so easily– overlooked is just how autism affects a family. In her new book, Autism and the Family: Understanding and Supporting Parents and Siblings, Kate E. Fiske delves into the world of the family with autism through powerful case studies, scholarly research and the sensitivity honed only through years of practice.
Fiske begins by pointing out that treatment for autism spectrum disorder (ASD) can involve so many professionals and be so encompassing that the family of the autistic child is overlooked.
“Sometimes professionals focus so exclusively on the individual with ASD that they fail to take into account perhaps the most influential factor in the individual’s life and the people who will also know the child best: his or her family,” Fiske writes.
Understanding the family context of the child with ASD not only leads to a better understanding of the child, it also yields better treatment outcomes. When the practitioner appreciates the challenges the family of the ASD child faces, he or she can better design interventions that are more likely to be followed. Further, Fiske tells us, the practitioner can be an incredible source of support for the family.
“For families of children with ASD the impact the diagnosis has on their daily lives can be far-reaching, unsettling, and in some ways, as difficult as the diagnosis itself,” Fiske writes.
One of the reasons a diagnosis of ASD can be so hard on a family is that unlike other medical or psychological conditions, the symptoms of ASD continue throughout the child’s life. Further, many parents witness firsthand the transformation of their child from “normal and healthy” to no longer meeting developmental norms.
Fisk shares the experience of one mother:
“It was beyond heartbreaking and devastating. Every day there was a little bit less. I got harder and harder and harder to make contact with him… I would go to his crib when he was sleeping and stand there looking at him… I just wished he would wake up and be like my old son. As stupid as it sounds, every morning I would hope that maybe he would wake up and he would be back.”
Although finally learning what is wrong with one’s child can be a “flashbulb moment” for many parents, it is often also accompanied by tremendous feelings of grief and uncertainty. Fiske writes that practitioners should focus on helping the family to process these feelings, reduce feelings of being overwhelmed and cope with any denial.
But practitioners should not assume that these feelings will dissipate after the diagnosis.
“Parent stress, and emotions such as grief and anger will resurge throughout the child’s development. For some parents, their stress will remain at an elevated level throughout their child’s life,” Fiske writes.
Understanding parent stress will help a practitioner to know how available the family is to treatment as well as to be empathetic to their stress. One stress practitioners can easily miss, Fiske says, is that the family members may not agree on the diagnosis itself. She recounts the experience of one mother:
“My husband didn’t want to believe there was anything wrong with our son so there was a lot of disagreement in the family. He was saying, ‘He is a perfectly normal boy. Why are you looking for trouble?'”
Parents also may not experience stress equally; mothers of ASD children are more prone to depression than fathers. On the other hand, if the mother is forced to stay home to care for the child, the father may experience more stress due to increased financial pressure.
Siblings of children with ASD can also be affected. Not only do family roles change, but siblings often share in the responsibility of caring for the ASD child. Sibling’s social lives may also become contracted as they may avoid having friends over to avoid explaining their sibling’s behavior. Siblings can sometimes feel guilt and shame about their sibling and may struggle to find a way to connect with them.
Fiske says that a crucial part of helping families with ASD children is understanding each family’s unique challenges and then developing successful coping strategies that fit their lives. In particular, Fiske recommends emotion-focused coping, cognitive reframing, letting go of the expectations of others, and whenever possible finding the silver-lining in an ASD diagnosis.
Importantly, all of this depends on the practitioner building a strong rapport with the family. Fiske shares how one father described an effective professional:
“It’s the one who loved my son. The one who talked about the same kid that I see…I remember there is a great description about Oliver Sachs. They said that…your illness was like a room and he had gotten in the room with you. Talk about the room. It was like those [who cared for my son] were sort of in it with me. Also, I trust them because they love my kid – I can tell. I know when they love my kid, I have something incredible.”
Through powerful insights, Fiske takes readers into the worlds of autistic families with unparalleled tenderness, clinical wisdom and a powerful message: children with ASD exist within a family that is as much in need of treatment as the child himself.
Autism and the Family: Understanding And Supporting Parents And Siblings
Kate E. Fiske
W. Norton & Company (2017)