S. A. Rubin, Finding Marisa: A Mother’s Story. A Guide to Raising a Child with Autism

Why a mother’s saga about raising her daughter with autism in a professional journal? Because this is not the average biography of a significantly autistic child who ends up doing well: the author, Marisa’s mother, has a graduate degree in special education, her father is a neurologist, therefore both have an unusually high degree of professionally relevant sophistication. Crucially, the book is based on mother’s 23 almost day-to-day journals, spanning close to 15 years. In my view, they make the book a respectable N of 1 prospective study, complete with a bevy of photographs of Marisa and significant persons in her life as it unfolds. The journals describe the family’s and schools’ adventures’ with Marisa, and those of others who participated in her education. The book is a well written, easy read, and some of the pickles Marisa gets into and how they were dealt with will be eye openers for many of the different professionals who care for children with autism. The author wrote this unvarnished book for parents honestly and specifically: she names and describes forthrightly many individual incidents, mistakes, and successes alike. Therefore I hope the professionals who take the time to read the book will recommend it widely to the parents of the children they care for because I believe it will be useful to parent and professional alike. I need to clarify at this point that I have what some may consider a potential conflict of interest: I evaluated Marisa in 1994 and am named specifically on p. 66 and alluded to on p. 176. I had no other contact with this family until Ms Rubin asked my permission to name me and until she sent me a copy of the published book, requesting my feedback. This review is it. Before describing why I think this book is worth many professionals’ time, let me comment on what I view as some of its limitations. This is a chronicle, so that there is no attempt at systematic analysis, or overarching recommendations or conclusions. Even at age 4 it was clear that Marisa had islands of age-appropriate skills, despite her very limited language ability and her profoundly deficient social skills: at the time she tantrumed so much that detailed evaluations often failed and tolerated almost no social situation outside of home and school. Her outcome makes it clear that her diagnosis is autism, not Asperger or PDD-NOS, but it is so favorable at 15 that the proper label is high functioning autism. I would judge that she has quite a good chance of becoming an independent or close to independent adult. How far she will go in her education is not as relevant as the perspective of being able to lead a meaningful and happy life, as her mother points out in her afterword. Marisa was lucky not only in her exceptionally educated parents, but also in their having adequate financial resources, in their recognizing that she had a problem as early as 15 months of age and being able to accept professional opinions and seek out and provide appropriate services for her from the start. The Rubin family lives in an affluent community with many resources. Ms Rubin was a stay-at-home mom during her four daughters’ childhoods. Consequently she had the time to devote to Marisa’s dayto-day needs at home and in the community, and to educate herself and seek out what the literature on autism had to offer. Her earlier profession as a teacher for children with special needs gave her the sophistication to evaluate this literature critically and to not be intimidated into accepting professional opinions and resources that ostensibly did not I. Rapin (&) Rose F. Kennedy Center, Albert Einstein College of Medicine, Room 807, 1410 Pelham Parkway South, Bronx, NY 10461, USA e-mail: rapin@aecom.yu.edu