Autism comments that are really not helpful: 'The Australian Autism Handbook'

I was very pleased to receive an advance copy of the newly revised 'The Australian Autism Handbook' - it's out on Monday April 2, 2013.

I bought the first edition of the book as soon as I sought and received an autism diagnosis for my son, when he was age two.

It has proven to be a mini god-send in every way: stories, resources, and confidence in what I am doing to help my son - the lot.

This section, below, had the most effect on me. If you have a child with an autism diagnosis you will understand why.

Here is an extract [with my own comments below each], reproduced with kind permission from the authors Benison O'Reilly and Kathryn Wicks and Jane Curry Publishing:

The new book cover is below:

'Comments that are REALLY NOT HELPFUL' [I love the authors' use of caps!]:

'Oh, he will grow out of it.'
[No, he or she won't. They learn skills to cope and flourish. But grow out of it. No.]

'Well, he looks alright to me.'
[Autism need not be 'visible' for it to exist.]

'Three is too young to label a child'.
[The earlier the intervention, the better. Kids can be diagnosed as young as two, sometimes even younger. And it's not a label. That's what YOU'RE doing - labelling. A diagnosis means help for the child, sooner.]

'God only gives special children to the special parents.'
[Um, thanks? I know the intention of this one is often kind, but sometimes... this comment grates a little. Oh, so you got the 'non-special' child and you're leading a less troublesome life because you are a not so special parent?]

'Oh, don't worry about that. All children... chew their clothes/tantrum/spin objects in front of their eyes.'
[I know this one is intended to help me feel better about my child - "look, my son is quirky, too!" - but autism is vastly different from the quirks all young kids have.]

'You've got to look after yourself you know, dear.'
[Yes, that I know. But the role of a carer/advocate/autism mum demands you put your child first. And so, a mani/pedi appointment or gym session is put last on the list... intervention appointments are never missed. That's the difference.]

'Maybe you shouldn't work so much.'
[Way to lay on more guilt! This one would have cut me up big time if it was uttered... because I grappled with this one myself in the early days of my son's diagnosis. Did I work too much, even if it was from home? That one just didn't wash when I examined it... I have twins. One autistic, one not. And I interacted with them in equal amounts. And just as it is for mothers of neurotypical children, work is often an escape from parenting, with a nice bonus that we make money we need for the family... or, you know, for shoes.]

Also, add authors Benison and Kathryn, lengthy descriptions of children who are doing so well at ballet/school/music lessons etc can be a bit hard to hear, especially in the early days.

Agreed... in the early days. Now, it's a mutual brag fest amongst us, in the nicest possible way, and I like it. Who doesn't want to tell friends how well their child is doing, and perhaps especially so if your child has had and continues to have challenges. The victories are to be celebrated, so come join us!

I can also add to the above list; I was told by a fellow school mum [who'd just met me, and cast eyes on my son for a few seconds] that my son "doesn't belong in that autism class!"

Oh, really? So you say he doesn't 'look' autistic, which means you don't know what autism 'looks like', you have no special needs background, and now you're questioning my decision to place him in an autism support class? Breathtaking - in the worst possible way.

Thick skin. We autism mums need it.

What have you been told about autism that kinda knocked you for six? 


Here are the book authors, Benison and Kathryn:

Benison O'Reilly  and Kathryn Wicks

You can 'like' the book's Facebook page by clicking this link.

Delaying an autism diagnosis: why it serves nobody

I have become such an advocate for autism that sometimes, I need to contain myself a little when I hear that someone is avoiding getting a diagnosis for their child. It could be an anecdotal story someone has told me, it could a story I overhear. But one thing is certain: it upsets me, and delaying a diagnosis serves nobody, least of all the child.

Another thing to remember is that - in NSW, at least - particular funding for kids with autism expires on the child's seventh birthday. Yet another reason to access services as quickly as possible to have the greatest impact, and get the diagnosis the child needs.

I asked co-author of the book 'Australian Autism Handbook' Benison O'Reilly what she thought about delaying an autism diagnosis out of fear:

"I would never judge a parent for delaying diagnosis out of fear or denial. I was guilty of this myself for a time.  No-one wants to acknowledge that their beautiful child, the child they assumed was perfect at birth, has a ‘lifelong developmental disorder’. It’s almost like a death in the family; the death of the child you thought you had.

Unfortunately, pretending there isn’t a problem isn’t going to make it to go away.  In fact, the longer a parent delays diagnosis the longer their child has to retreat into autism and fall further behind his or her peers.

The year before (Benison's son) Joe’s diagnosis was definitely the worst of my life. I was heartbreaking to watch my son go backwards and feel powerless to stop it. Of course, the day of diagnosis was awful—I won’t deny that. But once we’d got Joe enrolled in a good early intervention program I felt in control again and much more hopeful. Eight years later I remain optimistic."

Have you had some doubts about an autism diagnosis? Feel free to comment below.

To read Benison's first opinion piece for 'Our Autism Adventures' click here.

'Australian Autism Handbook' - and the heading that changed my life

Benison O'Reilly is the co-author of the 'Australian Autism Handbook' - it's one of the first books I bought when I received my son's autism diagnosis. In fact, I vividly recall flicking through the book at my local Dymock's bookstore. There I was, during Thursday late night shopping, twenty minutes before closing time. I'd put the kids to bed and told my husband I had to go "TONIGHT!" to get some books on autism. I had to understand what was going, what I could do to help my precious boy. And internet research just wasn't going to cut it. I needed: a book. Several of them.

And so, after asking the bookstore assistant I'd called prior to make sure she had "lots of books on autism" I turned up and she showed me to the right section. I picked the book which begged to be picked up -  'Australian Autism Handbook' - and scoured it. My eyes came to the part on page 31 where it says under a heading in caps: "ASDs [Autism Spectrum Disorders] ARE NOT CAUSED BY BAD PARENTING". It continued: "We've already discussed this. The myth of the 'refrigerator mother' has well and truly been debunked."

I burst into tears, right there in the bookstore. The bookstore assistant soon came by to ask if I needed assistance and noticed tears streaming down my face. I explained. She nodded, and told me some words of reassurance I now can't remember. I was just relieved. Autism wasn't about something I'd done. It wasn't my fault. I felt understood, and ready for the journey ahead.

I bought the book.

That's co-author Benison. I asked her to write a series of pieces on autism. I will be posting them in the coming weeks. What she's got to say is powerful and important. And she should know: her son Joe was diagnosed with an autism spectrum disorder just after his third birthday.