DiscoverParenting & Families

MY CHILD IS AUTISTIC? WHAT DO I DO NOW?

By

Loved it! 😍

Ashby provides pragmatic information for parents of autistic children to help obtain the social care provision their child is entitled to.

Synopsis

This book is a quick read designed to launch parents of newly diagnosed autistic children into their new life. Most parents have had little, if any, education regarding the needs of autistic children. Unfortunately, the diagnosis doesn't come with an instruction manual, as I discovered more than 20 years ago. When my son was diagnosed, I began searching for a book that would teach me what I am supposed to do first, but the book didn't exist. Now that I have spent decades working to ensure my son is receiving everything he is legally entitled to, and learning to spot the difference between someone who is genuinely trying to help and someone who is working to save money by denying critical services, I have given up looking and written the book myself. THIS is the book I wish someone had given me all those years ago. I can only hope this book spares the parents of autistic children most of the frustration and helplessness I had to endure. Our autistic children deserve everything we've got to make their lives fullfilling!

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.”

Reviewed by

I’m a professional librarian, writer, artist and photographer.

Synopsis

This book is a quick read designed to launch parents of newly diagnosed autistic children into their new life. Most parents have had little, if any, education regarding the needs of autistic children. Unfortunately, the diagnosis doesn't come with an instruction manual, as I discovered more than 20 years ago. When my son was diagnosed, I began searching for a book that would teach me what I am supposed to do first, but the book didn't exist. Now that I have spent decades working to ensure my son is receiving everything he is legally entitled to, and learning to spot the difference between someone who is genuinely trying to help and someone who is working to save money by denying critical services, I have given up looking and written the book myself. THIS is the book I wish someone had given me all those years ago. I can only hope this book spares the parents of autistic children most of the frustration and helplessness I had to endure. Our autistic children deserve everything we've got to make their lives fullfilling!

INTRODUCTION

“Your child is autistic.”


What? MY child? I don’t understand. You must be mistaken. Things like this happen to other people, not to me and my family. It just... can’t be true.


Any parent who has ever sat in a sterile medical office and heard that sentence has an immediate gut-level reaction. The reaction is unique for each person, but it’s there and it overwhelms you. There are many forms the reaction can take: confusion, denial, anger, fear, heartache, sadness, disbelief, or one of a hundred other labels. Or you might go through ten different emotions before you even regain your ability to speak. One way or another... it takes possession of you.


Then, after you’ve had a minute to become functional again, you’re hit with the second wave. What am I supposed to do now? Is there a guidebook or something? Yes. This is it. I’m not a medical doctor so I will not give you medical advice. I will, however, share information I have learned from the many doctors I have worked with. I am not a Special Education teacher so I will not give you academic study plans. I will, however, share experiences to teach you lessons that I had to learn the hard way. And I am not autistic so I cannot tell you what it feels like to view the world from your child’s perspective. But I can help you learn how to move forward in a world that is not prepared for your child.


There are many things you need to know, and that no one wants to tell you. That is how I knew I needed to write this book. I’m volunteering to be the one who lets all the cats out of the bag. The world is counting on you to remain ignorant of your responsibilities and your child’s rights. You’re much easier to “handle” if you don’t know what your child requires and is legally entitled to. I’m going to help you do the most important work of your life – become your child’s advocate.


This book is not meant to be an in-depth scientific analysis of autism. What I have written is a 30-minute compass to get you out of the gate. This book is your starting point. You have many things to learn, but that will happen over time. My intention is to give you the basic information upon which everything else will be built. As long as you always apply the information contained in these pages, you will always make the right decisions. 

About the author

I have spent more than two decades learning how to successfully maneuver through the bureaucratic mazes that lead to the right people, the right services, and the right programs for my son. Now it's time for me to teach others how to be their child's greatest advocate. view profile

Published on September 09, 2020

10000 words

Genre: Parenting & Families

Reviewed by

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