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.

Early intervention for children with autism - why it's important. Benison O'Reilly weighs in.

Early intervention in autism spectrum disorders is key - and many times I am asked how soon I had my son diagnosed, and how I knew he had autism.


They are two separate questions, of course, but very much interconnected.


My son was diagnosed when he was one and a half. I just knew and of course there were plenty of signs [more in a future post]. And what I also know now is that early intervention is incredibly important.


Just last week I chatted with my sons' daycare centre director about his wonderful progress, and at the end of our conversation she was quick to add how thrilled she was that I have always embraced taking on the advice of his early intervention educators, and being willing to work with his teachers at daycare.


For me, it's a no-brainer: I love my boy more than life itself and I will always do everything I can to help him reach his full potential. But gosh, it's so great to get that kind of acknowledgement.


In the first of many opinion pieces by author Benison O'Reilly for this blog - she co-wrote the autism bible, "Australian Autism Handbook" - she explains why early autism intervention is key.

"I’ll illustrate with a personal example: my son, Joe," says Benison.

"He’s now a big boy of eleven but was diagnosed with an autism spectrum disorder just after his third birthday.

"At the time of diagnosis Joe was assessed as having moderate to severe developmental delay, which was a polite way of saying he probably had a very low IQ. After 20 months of intensive early intervention we had his IQ reassessed. The result: borderline normal. Did my son suddenly become a lot smarter? Of course not—early intervention simply gave him the skills he needed to demonstrate his intelligence.

In simple terms, early intervention teaches children with autism how to learn. Given the choice, these kids prefer to retreat into their own little worlds, which are safer and less challenging. 


Good early intervention programs drag them out of these worlds, and teach them the 5 essentials: how to focus and pay attention, how to imitate others, how to understand and use language, how to play appropriately with toys, and how to socially interact with others.

Many of the problem behaviours we see in children with autism, such as tantrums and self-injury, are actually acts of frustration—frustration at their inability to communicate their needs. That’s why language is such a major focus of early intervention. 


The good news is, with early intervention, the vast majority of children with ASD will learn to talk.


Early intervention sets children with ASD on the right trajectory, a trajectory of learning that will last them a lifetime."

Adds Benison: "With very young kids they sometimes provide a provisional diagnosis which almost invariably goes on to become a proper diagnosis."


She refers to a point made on the Autism VIC website [now http://www.amaze.org.au]

"Diagnosis is usually made from the age of about 18 months onwards. Sometimes a provisional diagnosis is made when the child is very young and is reassessed at a later date."

Benison continues: "At eleven, Joe continues to develop new skills but the foundations were established when he was just three years old. If he hadn’t had that early intervention, who knows where we’d be?"

Benison's words are what I live by. My son is now four and a half and I often look back at how far he has come and I am so thrilled... I know in my heart that - although we have a lot of work to do - the best is yet to come.


For more on the blog for the book Benison co-authored with Seana Smith, go here: http://autism.janecurrypublishing.com.au/

You can follow Benison on Twitter here: @BenisonAnne

And the Australian Autism Handbook Twitter page is: @autismhandbook 

This is the "Australian Autism Handbook" cover - parents with a child with an autism diagnosis: buy this book.

What are your experiences of your child's autism iagnosis - at what age did you have him or her diagnosed?