Barbara R. Lester is a Licensed Clinical Social Worker and has been a practising psychotherapist for 25 years, working primarily with children, adolescents and their families. Her father, now aged 88, is on the autistic spectrum.
Here, Barbara answers some questions about her new book, My Parent has an Autism Spectrum Disorder: A Workbook for Children and Teens.
Tell us a little bit about your background and how you came to write the book.
By profession, I am a social worker and I specialize in working with families affected by autism spectrum disorders (ASDs). I have gotten to know family members of all ages with ASDs. Also, I grew up with an ASD parent myself. I always knew that my father seemed different from other fathers, but back then I didn’t know there was a name that described this difference or that there might be other people who had similar issues in their families. Once I realized that my father had an ASD, it helped me better understand and get along with him. I have found that over the past ten years there has been an exponential increase in the amount of information available to parents to help them understand their ASD children, but almost no information for children or teens to help them understand their ASD parents. I wrote this book to begin to fill that gap.
What are some of the most difficult challenges for children trying to come to terms with or understand their ASD parent?
One of the most challenging things for children to come to terms with, is understanding the exact nature of their parent’s ASD. Unlike many other types of disabilities, an ASD is not immediately obvious or visible. The main challenges are usually social, in that the ASD individual may not be as interested in socializing as someone who is “neurotypical” (that is someone who does not have a neurological disability) or they just not be as good at reading social cues despite being interested in having friends. This may be subtler and harder to understand than if their parent had another type of disability, such as an impairment in sight or hearing. It may be more obvious how to assist someone who is visually or hearing impaired, but less obvious how to help someone who does not read social cues well, especially if they don’t want help or see the importance of getting help! In my book, I give many detailed examples of how an ASD may affect someone, both from the perspective of a child with an ASD and an adult with an ASD. I then compare and contrast these examples with the experience of a neurotypical child, as well as with personal examples from life with my ASD father and with examples I have seen in counseling. In this way the child or teen reading the book can come to a comprehensive understanding of ASDs in general and of their parent specifically.
Can you talk about the worksheets in the book – how can they help?
One reason I included worksheets was to address the complex “spectrum” nature of autism. This means that not all the characteristics of ASDs apply to all the people who have been diagnosed with ASDs. The worksheets help to tailor the book to the specific people involved. The worksheets also take into account that the children or teens reading the book may be on or off the autism spectrum themselves. The children first rate themselves and then their ASD parent and other family members on many of the characteristics involved, so there is no assumption that only the parent has each trait.
Another goal of the worksheets was to help all the members of the family better understand and communicate about any ASD related area of difficulty (such as the intensity of a special interest, or problems with understanding body language) so that the family can actively work on resolving or accepting the problem.
What do you hope families will take away from your book?
I would like them to take away better understanding and appreciation of each other, good communication skills and joint problem solving strategies. I would also like them to know that they are not alone, and that there are many families facing and resolving similar problems.
Read Barbara’s article ‘When a Parent is on the Autism Spectrum: Tips for Kids’.
Copyright © Jessica Kingsley Publishers 2011.