“Raising a Child on the Autism Spectrum: Insights From Parents to Parents,” by Mallory Griffith, MA, CCC-SLP and Rachel Bedard, PhD, TPI Press, 2017, 147 pp., $19.99. MHConcierge’s take: compassionate stories for other parents, wise advice for clinicians and other professionals who serve, or even just have contact with, ASD children.
This book is a rich resource for parents, but should be required reading for medical, mental health, social work and academic professionals who provide services for ASD children. I even highly recommend reading it if you are a clinician who just has contact with ASD, or potential ASD, children as they pass through your office, clinic, agency or school.
The authors are a speech-language therapist and psychologist, both who specialize in autism spectrum disorder (ASD) services. They have assembled an amazing crew of parent-authors who were willing to tell their stories about their special and challenging children, and to pass on what they are learning (“it never ends”). This book provides a wealth of insights, tips and – in particular – support for other parents of children with ADS conditions. The stories cover a wide range of symptoms, developmental trajectories, family circumstances, and more. The theme that ties them all together is compassion: compassion for their own children, and compassion for other parents who are struggling to sort out what the heck is going on with their “peculiar” child, how to access help and resources, and how to cope with daily – sometimes hourly- behavioral challenges.
Neither the authors nor the parents get too hung up on terminology and the limitations of ICD 10 labels. Rather, they usually refer to their children as their “Aspie” for higher functioning children, and “ASD” for those more clearly suffering from autism. Or, most frequently, the child is just referred to as “my kiddo,” “my special child,” or other terms of endearment.
Here are some examples of what the parent authors wanted to pass on to the clinicians and professionals who did a “suboptimal” (MHConcierge’s term) job for their child. For example, imagine having a toddler whose behavioral is extremely different than his peers, whose behavior is deteriorating by the month, and your pediatrician tells you, “He’s developmentally behind, but don’t worry, he’ll get caught up.” Or, you have a gut sense that something is seriously wrong with your child, you try to schedule an intake with a specialist, and you must wait months for the appointment. Or, you finally get to the first appointment but you don’t see the specialist, you just see assistants, and you are told to schedule a follow up visit with “The Doctor” – but her first opening is months away. Or, you finally meet with “The Doctor,” the news is what you feared, an ASD diagnosis is confirmed, and you are just given a copy of the report and encouraged, on your own, to find resources. And, thorough all of this you may have an escalating sense that your precious child is missing out on treatment that works best when it is started early.
The parent-authors had story after story of a bureaucratic and even insensitive assessment and treatment system. This book is an excellent resource for clinicians who provide ASD assessments, referrals and treatment to help them remember the very human costs of assessment delays, “suboptimal” empathy for parents, and a lack of urgency for helping parents access specialized services. The parent-authors also provide many heartening stories about how well their special children are able to do, after (finally?) getting appropriate treatment and support services.
This book is a quick read and can be referred to parents who are struggling with a child who is like to have ASD, or who has been diagnosed but facing a long, uphill road in life. And, clinician would be wise to self-refer it to themselves for reminders of the challenges that parents of ASD children face.