10 Things Every Child with Autism Wishes You Knew – Ellen Notbohm
From the title – I admit that I thought that this book was written by an autistic woman. It is not. It is written by the mother who has an autistic son. She first wrote the book when her son was still a child, and then released an updated version when her son was grown up.
This book takes ten things that, in Notbohm’s view, autistic children want non-autistic people to know. These ten things are:
- I am a whole child.
- My sense are out of sync.
- Distinguish between won’t and can’t.
- I am a concrete thinker. I interpret language literally.
- Listen to all the ways I am trying to communicate.
- I am visually orientated.
- Focus and build on what I can do rather than what I can’t.
- Help me with social interactions.
- Identify what triggers my meltdowns.
- Love me unconditionally.
These also make up the ten main chapters in the book, regardless of which edition. The updated edition also has an excerpt from another book, and some updates on Notbohm’s opinions and her son.
The book starts with a chunk of writing on why the author wrote this book, what the intention of the book is, and the terminology used throughout the book and the author’s justifications for doing so:
You won’t see the word “autism” capitalized in this book unless it’s at the beginning of a sentence or part of a name or title. We don’t capitalize breast cancer, diabetes, glaucoma, anorexia, depression, or other conditions that don’t include someone’s name, like Asperger’s. Capitalizing “autism” makes a visual statement that assigns it an authority and power it doesn’t deserve.
The author also gives some justifications for using person first language in the book. I must admit that I don’t really understand the time and effort put into this linguistic side of autism sometimes. Up to a point – I get it. I wouldn’t want to be insulted, as I imagine is the case for a large number of people. However, after a certain point I think we become so fixated on words that we forget that whilst we’re arguing and ignoring each others points over minor linguistic choices, we could have been doing something more important… Of course my own personal bias comes into this since I am very firmly in the camp of you can call me ‘autistic’, ‘person with autism’, ‘person who has autism’, ‘on the spectrum’ and I’m probably not going to notice and if I do I won’t be bothered one way or another. If you say I ‘suffer with autism’, call me an ‘aspie’ or an ‘autie’ then I’ll probably cringe a bit and might tell you to just say autistic but that’s the extent of it. Anyway, there’s quite a bit of discussion on the choice of words throughout this book, just like there is all over the internet.
I liked the section on sensory processing – if you’ve read my other reviews then you already know that I think sensory processing doesn’t get nearly enough screen-time/page-time as it deserves. It was only in the DSMV (2013) that sensory issues were added to the diagnostic criteria – despite being discussed when Kanner and Asperger first gave autism a name.
My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s specials. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all in input and I’m in overload.
The sensory chapter is probably the best chapter in the whole book and it does provide a substantial amount of detail – even including the often forgotten senses such as vestibular, proprioreceptive, kinesthesia, nociciption, temporal sense and thermoception.
Throughout most of the rest of the book it moves between good or great advice and information, and that which isn’t quite so good. The author isn’t chasing a cure and isn’t portraying autism as this terrible thing but at the same time there’s still this general idea of fighting autism or getting over autism.
That’s because the older Bryce grew, the more his autism became only a part of him, a thinking and learning style, not a gargoyle crouched over him dictating his existence, not a defining or even controlling characteristic.
There’s also a large amount of reinforcement and discussion around the idea that all behaviour is communication. These words are repeated multiple times and discussed even more, but not all behaviour is communication. This phrase is often uttered online – it has been said (typed?) on various forums and social media sites by autistic people themselves as well as professionals in the field. Parents then took up that information, and were then criticised for thinking everything their autistic child was doing was about or to them.
Here’s the best way to think about it: think about every piece of behaviour that you exhibit throughout the day (or even just the hour). Now think how many of them are communication attempts? Now obviously someone who is non-verbal or prefers non-verbal means of communication will exhibit communication more in physical behaviours but everything is not going to be communication.
The author also talks a bit about how she had the “serenity” to bypass the negative emotions surrounding a child receiving an autism diagnosis, that she told early-intervention staff that she would “kill them” if they tried a certain method with her child, and that she has been commended by her son and others for her “near perfect” approach. Even though she then follows up with some modesty – there’s a bit of a self-serving feeling surrounding it all.
Those things aside, the author has good views in a number of areas including the important of believing in your child, of making sure people distinguish between thinking a child won’t do something and can’t do something, and of the important of establishing and maintaining a functional means of communication.
We must not lose sight of the fact that while he has yet to develop basic vocabulary and the skills involved with generative speech, he still needs a way to communicate his needs, fears and wants.
The author generally does have a more positive and less judgemental and doom and gloom view towards autism than other, similar books. She doesn’t view autism as this terrible thing that took her son away, or as this source of great misery in her life. For it’s positive view alone, it is more worthwhile to read this than a lot of other books from this genre of autism parenting books.
Is it worth reading?
For parents or other family, yes – it has some solid and useful information and advice, but do not take everything in it as truth. For professionals or autistic people – not so much.