Having raised an autistic child to adulthood, this short read is the information Ashby states they wished they had been given as they sat in the room receiving their child’s diagnosis, to help them know their rights and how to proceed. The author is fully aware of how much parents in such a situation are having to come to terms with and therefore sets out to offer a quick “30 minute compass to get you out of the gates.”
The author addresses straight away that their experience is of the California state system and that other states and countries may vary in the way they approach their special needs educational offering. Her proactive parental approach, however, is transferable to the rest of the US and beyond.
The title “What Do I Do Now?” relates to how parents can start to navigate the red tape in order to access the social care provision their child is entitled to. Although she talks both in general and specifically of her own experiences as the mother of an autistic child, the book does not focus on the parenting and homelife aspect beyond how to understand and engage with authorities and their often bureaucratic processes. Ashby is optimistic but pragmatic, noting that parents should “hope for the best but prepare for the worst” in their interactions with social care professionals.
The book is structured chronologically, beginning with the author’s first concerns that their child may not be progressing developmentally in line with their peers, ultimately resulting in the diagnosis assessment that confirmed their concerns. This diagnosis statement, a physical piece of paper, then becomes the key to accessing everything that the child is entitled to. The book details Ashby and her family navigating their way to obtaining and refining, over the years, the schooling provision that is right for their child. The author highlights that one of the largest challenges in obtaining educational provision for an autistic child is that autism can present in so many different ways and therefore negotiating with care professionals to set and refine highly granular goals for your child can be both frequent and stressful.
The book ends on a hopeful note, which, as a parent of two severely autistic children myself, I can wholeheartedly agree with. The author writes that the challenges are acute, but the miracles you will go on to witness will be worth it. “I envy you”, Ashby tells us, “the tears of happiness when you realise what a gift this child is to you.”
I’m a professional librarian, writer, artist and photographer.