This book appeared at an apposite time. After the vagaries of a vacation - "parents dread school vacations," the author, Dr. Barry M. Prizant, confirms at one point - it's a little like a refresher course for parents like me who are feeling drained by autism.
Adrift as my nine year old son Isaac was with his anxieties, riddled with the need for repetition and routine, the many unstructured (or unpredictable) summer holiday days were as unappealing for us (my wife in the main) as him. We may have resorted to certain reactions.
We've rebooted somewhat since, and this comprehensive text has certainly helped reframe my comprehension of autism and, indeed, Isaac. Where the narrative around autism can so lazily raise the stakes for parents, Prizant raises its status - positively, honestly, at times, heroically. Vitally, we trust this leading expert, this autism polymath. Whose experience straddles the full spectrum of expertise from consultant, to researcher, to clinical scholar, professor and more.
What makes the book stand out, is that Prizant's authority is balanced with an avuncular presence throughout. When he refers to being "haunted by situations" that cause children "emotional and physical pain", there's an empathy that's crucial for parents. Indeed, that his starting sections are entitled "why" and "listen" and because he regularly asserts that "parents know best", the book possesses a wondrous emollient element.
The book is split neatly into two halves, Understanding Autism and Living with Autism, with case studies frequently punctuating the prose to ensure complete clarity.
Early on he refers to "underlying neurology" as the reason people with autism are "unusually vulnerable to everyday emotional and physiological challenges" which leads to "dysregulation". This introduces an objectivity from the off that liberates any closed minds, or, where I may have been prone to prowl, frustrated minds.
In fact much of the first section comes back to the concept of dysregulation, it being such a critical but perhaps under scrutinised feature of the condition. And Prizant super-charges the educative words with lateral thinking that not only explains autism (and dysregulation in particular) brilliantly, but articulates it in a way that is forever positive, when negativity could so easily be the outcome.
For example, he deliberates that "deficits are actually strategies". Whilst not necessarily being an interpretation of the Eureka kind, this thinking is nevertheless quite a nudge. For me certainly. When Isaac immerses in identical list creating of bus numbers, or writing song lyrics over and over, there's usually a context I should consider. Which, more often than not, is when as Prizant says, people with autism feel "most isolated" or during "transitions" or when "noise is increased". Having strategies for managing these situations we are reminded is impressive and should be respected for their application. True, true.
Building on this type of enhanced thinking, is my favourite chapter, the one that repurposes "obsessions" as "enthusiasms". Things particularly relevant to my son. Being reminded that the enthusiasm (not obsession) may have commenced with a sensory experience and that rote learning is often the most effective way to utilise that experience, cleared my mind - literally.
The London Underground with its soothing repetitive sounds and mass of reliably unchanging visual information that stimulates and informs has always been sensory heaven for Isaac. The learning it's allowed him is amazing. I know the pitfalls of using this as a comfort zone, his school cleverly using it as a foundation for more typical learning. But reinforcing trains as a force of good is replenishing for me.
Music also became an enthusiasm for Isaac over the holidays, his memory of chart lists and lyrics, artists and band names, extraordinary. His need to tell us them over and over was though, exhausting. I nodded as I read about children who "talk excessively abut a topic... and won't stop". I subsequently smiled unexpectedly though when I read that this type of conversation can act as a "connection"; perhaps Isaac was using it as a social tool as much as anything. That's a big, inspiring idea.
Prizant doesn't dodge difficulties in the book though. Far from it. Isaac's fear of dogs is debilitating. Any location we suggest that may have once featured a dog's presence, however tiny, and that could have been years ago, will lead to melt down. Emotional memory explains this and by designating a whole chapter to how it works and its force in the wiring of the autistic brain is fascinating. Strategies I have been able to glean for managing and working with Isaac's emotional memory, will be useful for me moving forwards.
The shorter second part of the book, Living with Autism, tells us concisely and warmly how best to do just that. Getting under the skin of the people who do and don't (and kind of do) "get it" is a neat tactic - proposing ideas and ways of engaging those that need educating. It has given me a mental tick box for what I need or not need to tell people in their approach to autism. Particularly helpful as we embark on employing our first member of staff with autism at my company.
Uniquely Human is a book for parents for sure, but it never forgets that autism is a life-long disability and that the general universal conversation may not be around adults enough receives attention. The "success stories" section is a shot in the arm for any parent at my stage who are nervously contemplating the future. And he talks extensively about "The real experts", the advocates, the adults with autism, who campaign and communicate more relevantly and importantly than anyone. That we must listen to them is emphasized.
If at times towards the end of the latter part of Uniquely Human, the tone creeps into the quixotic, I'll allow it such is the overriding progressive nature of the book. An important book that is indeed unique in its appeal and approach. Please read.Suggest a correction