Elaine Hall, creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:
A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living. Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know. Thank you for brilliantly weaving the parent perspective with Jeremy’s internal dialogue. Thank you, Jeremy for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.
A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams. I will be recommending this book to everyone I know.
Unfortunately, many adults on the autism experience high rates of unemployment or underemployment. Some of our most gifted live in poverty and have few options in life. Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family. This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood. I highly recommend this for any family or individual as they prepare for transition planning.
Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America
Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Before looking at how to best provide support, a better understanding of the particular difficulties autism infuses into the family unit is necessary.
Autism: It’s a Family Thing
It has been estimated that the divorce rate is in the 80% range in families with children who have autism (Bolman, 2006). Despite high rates of marital conflict, many couples do not reach out for couples therapy. Lack of respite is a major reason. For most, finding a babysitter with whom then can safely leave an autistic child who has toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious time away from the child to confide in a good friend.
Marital stress around the child usually starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who does not seek their attention in the usual way (i.e., eye contact, reaching out for or giving of affection, searching them for comfort when hurt) find it hard not to feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like. When the child does not match the expectation, or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who lose a loved one experience (Sicile-Kira, 2004).
Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).