A Childless Mother, Is still A Mother. Though her arms may be empty… her heart never will.

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Mothers Day has always been an incredibly difficult day for me.

Filled as it is with  mixed emotions but not for the reasons you might think.

It’s not a difficult day for me because I have a son with Autism or a daughter on the spectrum.

In many ways their presence here helps to counteract the whirlpool of emotions that this day normally stirs up in me.

Mother’s day is hard for me because I am, or at least I would have been, had everything gone to plan, the mother of seven children.

You see, four of my lovely ones never made it kicking and screaming into the light of this world.

So every Mothers Day I sit and I think about the babies that I never go to hold.

The faces I was never allowed to touch and love.

And I wonder what they would have looked like now as strapping young adults.

I wonder what their personalities would have been like and who they might now have been.

Would they have been artists or writers?

Would they have had that same broad grin that my middle son wears like a badge of honor?

Or those same amazing amber eyes as their sister?

Would they have been as tall as my living eldest son or more on the shorter side of life like me?

I guess it’s normal for mother’s like me to wonder and occasionally let ourselves dwell in the mystical land of ‘what could have been’.

I guess some would even say that I’m still grieving their loss and I yes, in a lot of ways I probably am and always will be.

I know that it has gotten easier with time.

Yet I will always remember that the awfulness,  of breathing my way through  every single Mother’s Day that left me unmarked and unacknowledged as a mother, during those years of enduring loss, were some of the most pain filled days I have ever known.

During those days I often used to wonder what to call myself.

After all what do you call a childless mother?

Common sense would say that there can be no such being as a childless mother and yet, there I was, every single Mothers Day for four years, struck numb by being exactly that  which logic dictated I should not be.

A childless mother.

Despite that I  knew, that even though I was a childless mother, I was still a mother.

Though my arms may have been empty, my heart was always full.

So to all the childless Mothers everywhere, I honor you, I recognize you and I declare with all my heart that;

You are now,

And you will always be,

Mothers,

Worth celebrating.

 

 

 

 

 

 

Mum… don’t leave your Facebook logged in on my Ipad……

My lovely daughter took over my Facebook for a brief period of time today.
If  any of you received any comments that you felt may perhaps  have been a tad bit unusual from me….
Especially those followed by an XOXO……..
Please know that my daughter enjoyed your posts immensely ……
And of course…..
She left me a message of her very own just to remind me never to be so absent-minded again as to leave my Facebook logged in and unattended.
Below is the message she left me.

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This is what I said to my doctors at the asylum ;) xo

P.S I got out 8 weeks ago today :) .
Mum don’t leave your Facebook logged in on my iPad…

Oh and just in case any of you are wondering…..
I have not just escaped from the asylum……
And yes….
My girl does indeed have a wicked sense of humor….

 

 

Hairspray, a lighter and a very troubled teenager.Which ever way you look at it, this was always going to be a lethal mix.

 

This is what my daughter did tonight in her room with a can of hairspray and a lighter…..

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She could have seriously injured herself of burnt the entire house down.

Worse still, she got her brother to take a photo of her while she was doing it……..

Neither of them seem to have any sense of the danger they were placing themselves and others in……….


Yet my daughters actions tonight are just the latest in a very long list of dangerous behaviors

.

I don’t think she has a fascination for fire per se. 

As this is the first time that she’s pulled such a stunt.

Well that I know of anyway.

I think instead,  that her actions tonight were simply yet another attempt at trying a new way of behaving destructively, on for size.

I say this because after the whole fiery incident tonight she tried to sneak a whole packet of Panadol out of the kitchen.

When I asked her what she thought she was going to do with them, she  told me that she was going to take them all.

I tried to wrestle them out of her hand before she could leave the room with them,  but she got away.

So I chased her up the stairs and told her that over dosing on Panadol was one of the worst ways any body could possibly choose to die.

That people linger on for months in agony while their livers slowly break down inside their bodies.

As cruel as it might sound, this form of logic worked  on her and she handed the Panadol back to me.

Then locked herself in her bedroom again.

I am extremely worried for my daughter’s safety and have been for many months now.

We’ve been to see professional after professional but none of them have been of any help.

She’s booked in to see her latest psychologist next week.

But bugger that for a joke.

I’m going to be ringing him first thing in the morning to tell him that he needs to take action now.

No child or parent should have to keep living this way simply because they’ve been shoved at the end of yet another waiting list.

So while the politicians wax on about how they’re going to solve the  crisis in health care in Australia !!!!!

We’re the ones who have to live with it on a daily basis.

 

It’s not up to Siri to decide, it’s up to the Motherboard. Mother’s you simply can’t escape them.

Image representing iPad as depicted in CrunchBase

 

My eldest son  got an I-Pad today.

Well that ‘s a big YAY all in itself !

 

He’s been wanting one for ages and I’ve yet to join an Autism Parent support group where at least a half a dozen or more parents haven’t raved about how well their son/daughter has been doing with their lovely new little digital genies.

So we brought this miraculous object home and my middle son began setting it up for my eldest son to use.

 

He’d programmed his brother’s name into Siri‘s settings,  unbeknownst to my eldest son.
So the first time my son said hello to Siri, she said hello back to him…. USING HIS NAME!!!!

 

 

Image representing Siri as depicted in CrunchBase

 

Well his face lit up and he thought it was magic.

 

Perhaps those parents at the Autism  support groups hadn’t been on drugs after all when they’d spoken with such passion about  how Siri  has worked wonders for their children.

 

Anyway…. fast forward a couple of hours and after asking Siri an endless string of illogical questions just to:

A) Hear her digitized female voice say his name over and over again.

B) Giggle at her pronouncement of “Sorry I do not understand”. A phrase which he hears regularly in real life and so is extremely familiar with.

 

C) Find out where the best place to hide a dead body would be in any given location….. Okay…. Okay…. now you can blame my middle son for that one.

 

He started it…

 

Oh and just in case you are wondering Siri recommends swamps as the best locations for the disposal of dead bodies in just about every known location.

 

English: The logo for Apple Computer, now Appl...

 

I wonder if the good folks at Apple have anything to hide? If so, I suggest checking all swamps first and foremost.

 

Anyway given Siri’s affinity for swamps, my son soon grew tired of this game.

 

So he then asked her….. (well her female digitized voice)….. if she would marry him…..

 

To which Siri replied….

 

“It’s nice of you to ask….. but it’s not for me to decide”……..

 

Her response was followed by an instant look of rejection.

 

“Don’t worry, “my middle son told his older brother immediately… “It’s not up to Siri decide, it’s up to the Motherboard.”

 

He then looked at me and with a big smile on his face  and said ……

 

“See it’s always up to the mother unit, even in the digital realm….. you simply can’t escape them”.

 

 

 

So why all the animals ?????? This post is in honor of my middle son…… I really do see you my lovely young one.

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I rarely write about my middle child.

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My youngest son who  so willingly engages,67935_541838245867555_1087220439_n Within in his own silent and peaceful universe.

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The universe he’s created to escape the lack of attention he receives  from me when ever I’m busy dealing with either the needs of my eldest son or the melt downs of my youngest daughter.

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I know sometimes he thinks that I forget to see to him.

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That I forget to listen to, or hear him.

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Or that I forget to think of him and his needs amidst the daily jungle of our lives.

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I’d like to say that he’s perspectives are neither accurate nor true,

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But,

11744_548751435176236_736055841_nIf I’m honest,

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I know that sometimes he’s right.

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So in order to show him that I do see him,

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That I do listen to him and think about him,

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His interests and his needs,

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I’ll often search the internet for amazing wildlife photos of the animals  I know he loves and adores.

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He is a child of nature.

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And he loves all creatures big and small.

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This is his way of coping.

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And I love taking the time to  see, appreciate and understand the sense of wonder that still exists within his precious soul.

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So this post is for you my lovely young lion.521850_543994382318608_1741177800_n

And this is your mother’s way of saying she’s watching over and loving  you just as much too <3

 

Love me or hate me, this is my response to a comment that to me tipifys the worst aspects of the Autism Community.

Please Don't Hate Me

I received   a comment to my post /parental-rights-and-autism-a-much-needed-reality-check/  a while back that I’ve left in my pending tray for quite some time.

I left it there mainly because I couldn’t understand the logic involved in the arguments the commenter applied.

Yet I did not want to dismiss it  out of hand without first giving it due consideration.

In the post I’d previously written, I’d argued that no one should have the right to tell parents of children with Autism to either “shut up” or to treat them as if they had nothing what so ever of value to offer to the Autism community.

Within my article I openly acknowledged that adults with autism have every right to express their own views regarding the childhoods they had lived through first hand, and that due to this they did indeed have a large degree of expertise to offer as to what should count as appropriate ways of treating children with Autism.

To me, acknowledging the wisdom and advice that adults on the spectrum can provide to parents is an absolute must if we are ever truly to become a cohesive Autism Community.

Yet despite making several valid statements as to both why and how parents of Autistic children and Adults with Autism should work with each other instead of against each other, the comment I received form a person who neither identified themselves as either a parent or an Adult with Autism really bugged me.

So I decided to try and break it down to figure out why it bugged me.

This is how the response started;

“While I acknowledge that many parents have fought the good fight– and continue to do so– on behalf of their autistic children, it is also sadly true that many autistic children suffer a great deal at the hands of their parents. Some of that suffering is due to societal problems, and some of it is due to neurotypical parents misunderstanding or being unaware of their autistic child’s needs.”

Ummmm….. I’m sorry but I simply do not believe that children with Autism are suffering from having “misunderstanding” parents.

If anything parents of children with Autism are often later found to be somewhere on the Autism Spectrum themselves, so I’m not sure where all of these ideas about  ‘misunderstanding neurotypical parents’ are actually coming from.

More importantly, neurotypical or not, I do not know one single Autism parent who has not worked their asses off firstly in seeking help for their child, and then secondly reading everything and anything they can get their hands on that might provide them with some kind of insight as to how to better help and understand their child.

So once again, where are all of these ‘misunderstanding neurotypical’ parents coming from and where’s the data to back such claims up?

Then the commenter does a backflip in acknowledging that there are several wonderful Autism parents out there and even takes the time to point out who they are.

But if you look closely at the following paragraph, you will find that those parents who have been singled out as praise worthy are  parents that fit a certain kind of criteria.

“There are plenty of wonderful parents out there, like this one: http://emmashopebook.com/2013/04/04/what-i-wish-id-been-made-aware-of-when-my-daughter-was-diagnosed-with-autism/. I am deeply grateful to the parents who are willing to stand up to society for their children’s rights. I applaud parents who refuse to believe the experts who tell them that their child cannot learn, or that those children should be forced to endure things they find traumatic for the sake of looking normal (http://juststimming.wordpress.com/2011/10/05/quiet-hands/), or that the caregiver is always right (http://ballastexistenz.wordpress.com/2012/04/30/badd-caregiver-abuse-takes-many-forms/).”

So under these proviso’s, if you are a parent who listens too, seeks help from or agrees with experts on any level, then you are not doing your jobs right.

Right?

Ah no and here’s why.

There’s a big “but” involved in this line of logic that is far too often overlooked.

Basically if we, as parents, were to all ignore  “the experts” then our children would never have been diagnosed in the first place because in theory, we should all have refused to agree with an “experts” diagnosis of our children as having Autism.

Seriously I am so tired of the constant catch 22 that some within the Autism Community continue to use against parents in this way.

This circular form of thinking places parents in a no win situation.

We’re either damned as fools if we do listen to “ experts” or damned as neglectful, harmful or abusive ‘neurotypicals’ who haven’t bothered to take the time to find out the facts, if we don’t.

A part from all of that, hidden within that paragraph is this message “I applaud parents who refuse to believe……. that the caregiver is always right” .

Now this meaning may not have been the commenters initial intent, but what if it was?

Why on earth should parents be told to promote the idea that they, as caregivers are not “always right”.

That they don’t always know what’s best for their children and that they don’t always dedicate themselves, everyday, to understanding and honoring  their children’s human rights.

I’m sorry, but to me, this continuous misnomer that for Autism parents honoring their children’s rights comes somewhere way down the list of whatever mysterious parenting agenda, those of us who do not fit the perfect Autism parenting criteria, are supposed to have, simply just is not true.

If it were true there would simply be no Autism Community at all.

Who do you think started it?

Parents did. That’s who.

As I stated in my original post.

“In truth, the biggest contributing factor toward the significant rise in Autism awareness over the last 5 decades has not come from adults with high functioning autism, nor from any magnanimous sharing of Autism facts by professionals,  rather it has come from the hard-fought efforts of parents of children with Autism to unite and share information with one another.”

In my article I outlined how one father Bernard Rimland single-handedly, took on the many prejudiced and erroneous assumptions surrounding the causes of Autism back in the 60’s and that  in doing so, he advocated for an end to the barbaric treatments that children with Autism were being subjected to.

In fact, if it weren’t for the work of parents like Bernard Rimland , whose book Infantile Autism: The Syndrome and It’s Implications for a Neural Theory of Behavior marked a turning point in our present day understandings of Autism as a neurological disorder/processing difference, then many of the new wave of adults with high functioning autism who are now so clearly and eloquently speaking for themselves, may have instead endured years of pointless and often cruel psychotherapy and psychoanalysis.

So really, there is very little basis for the argument that in order to be a good Autism parent you must first admit that you don’t know everything about your child.

Despite these facts, the commenter then goes on to say.

“Unfortunately, there are a lot of parents out there I wish would shut up. These parents throw pity parties for themselves and tell the world about what a burden their child is (parents who are autism allies, on the other hand, talk about the difficulties they encounter in raising their kid, sure, but in a way that’s respectful, that won’t destroy that child’s self-esteem if/when they read those articles online later in life). Parents who need to shut up are the ones who derail conversations about the abuse and murder of autistic people (kids or adults) with arguments that it’s sometimes justified, or take those discussions invariably as unwarranted personal attacks on all autism parents. Or parents who refuse to believe their child is intelligent just because they don’t speak, even when they show that intelligence in many other ways.”

I’m sorry but I simply do not know any parents who have murdered their Autistic child. Nor do I know of any who would call such a heinous act justified.

Nor do I know of any who speak of their children as “burdens”.

The concept of the “burden of care” was invented by doctors and psychologists in an effort to try and pathologize parents of special needs children as being either emotionally unstable or possessing a depressive personality type.

In reality it was nothing short of being another attempt by the medical establishment of blaming special needs on parents.

It was not a term invented by parents, nor is a term used by parents.

In general I find that if a parent takes offence to a statement regarding the “lack of understanding displayed by parents  of children with Autism,” it is usually warranted due to the manner in which some choose to express themselves.

Further to this, no parents that I know of refuses to believe in either the worth of the potential of their child.

I mean really, just think about it.

If it really were the case, that we as parents have given up on children, or are refusing to believe in their intelligence, then we’d all be putting our feet up, instead of madly scurrying to and fro to fit in speech, occupational and physio therapy sessions.

The care industry would fall into complete chaos and therapists everywhere would be out of their jobs. But oddly enough they’re not!!!!

The commenter then goes on to say;

“Yes, I worry about taking parental rights away from autism parents… but mostly because that would mean giving those rights to someone even worse.”

Really, according to you, who could be worse than some of us parents?

This comment is followed by the claim:

“I do wish parents were required to take some classes designed/taught by adults on the spectrum in order to better understand their children’s needs.”

Okay, hands up all of you parents out there who have ever gone to workshops, or attended events with speakers who are Adults with Autism?

Voluntarily. Without being told too.

Well I for one have attended many such workshops and events without being told too and I did so because I wanted to learn more about the experience of Autism in order to best help my child.

I can also tell you that every workshop and event I’ve been to has been filled with other parents who are all there for the very same reason.

They want to better understand their child.

As if that weren’t enough, the commenter then ends their response with the observation:

“I often find that people on the spectrum are treated best by people who have been taught the least about autism– because they don’t approach that individual with a mind full of misinformation, pity, and stigma.”

I’m sorry but hasn’t the commenter just spent their entire post stating that we need to better understand Autism?

How on earth can they then turn around and make the claim that placing anyone with Autism with someone who has an uninformed mind would be better than being surrounded by people who love and care for them and who are trying desperately to understand them?

You’ll have to excuse me but when it comes to this kind of argument, I’m completely lost.

How about you?

 

Reblogged from Cassie Being Cassie:

“This film is dedicated to any child who has ever felt such darkness due to others’ hatred and misunderstanding.

Always know that love is meant to be within,

and you should never feel wrong or alone,

by being who you are….

Unique”.

Quote from the film makers of Love Is All You Need.

Equality people ...... isn't it time?

Please go to

http://artofstumbling.wordpress.com/2013/04/30/what-if-being-straight-was-frowned-upon-instead/

  to watch this amazing short film.

Daughters, Dishes and Cats. No we’re not Aspies at all in this house…… Reality Blogging

Unwashed dishes in a sink; an authentic situation.

I’ve been on dish washing strike all weekend.

Apparently so has my daughter.

Even though it is her turn and has in point of fact, been her turn to do the dishes, since Friday.

Normally I would grind my teeth  and give in to her non-complicity for the sake of my own sanity, if not for anyone elses.

But not this time.

As a result we now have a sink full of rinsed, but not washed, dishes (and yes I rinsed them but that’s as far as I would go).

Whilst  I am adjusting  rather poorly to this continuing phase of  unremitting stubbornness from my daughter, the cats are adapting to it with amazing alacrity.

Cat

They seem to be taking the increasing stacks of bowls and plates that have begun turning my sink into a mountain of foraging cat like delights, as a sign that all of  their kitty dreams have at last, come true.

I for my part, have given up on waving them away from the sink and have even resorted to purchasing of pre-packaged salads whilst grocery shopping today.

I never buy pre-packaged anything’s as a rule.

Especially not pre-packaged salads.

They taste funny.

Plasticky! (yes I know that’s not a real word, thank you spell check,  but it ruddy well should be).

However I’m hedging my bets against my daughters stubbornness as I’m yet to witness any signs of either contrition or compliance coming off her and I do actually want to eat tonight!

plenty of different healthy salads for 1€60

So  seeing as we no longer have any clean plates or bowls to eat out of, I thought, well, at least pre-packaged salads do come in their own convenient plastic, throw away bowls.

Win/Win.

Problem solved.

Well half solved.

At least for another night.

I wonder how long a mountain of un-cleaned dishes can remain in a sink before children services or some  such  other services will  be called in?

Considering that my daughter now believes that a teenager (specifically her) being made to wash dishes is nothing short of  the vacuous beginnings of modern-day ‘child labor’ , I’m surprised that she hasn’t called children services herself.

In the mean time, while I’m waiting for the flashing red and blue lights of her saviours to arrive, I’m avoiding the kitchen as much as I can.

I’m even tempted to move the kettle and all things caffeine related into the lounge room, just so that I no longer have to witness the evidence of our own unforgiving Aspie-ness, every time I enter that part of the house.

See, I’ve become so adverse to it all,  that the ‘kitchen’ itself no longer has a name, instead it has become ‘that part of the house’.

Oh dear.

When will it end?

Perhaps I should turn this situation into one of those ‘Big Brother‘ type shows, where you my fellow bloggers all get a say as to who you think should be locked in  the kitchen and made to do the dishes?

Vote M for mum or D for daughter.

You might also want to try voting C for cats if you think the mountain of un-washed dishes should be left in tact for their kitty benefits.

So vote now…..

P.S. Only one voter per reader, unless of course you wish to vote D for daughter, in which case you are here by cordially encourage to vote multiple times.

Wow this is just like reality TV.

Only, let’s call it “REALITY BLOGGING“.                                   Related articles

Childhood Taken Out Of Context And Transationally Lost.

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Some days being in my family felt like living in a country constantly at war with itself .

The bomb shells of my father’s yelling.

The shrilling peel of my mother’s crying and the thudding of a million doors slamming  that always made me jump.

And the way my father’s voice boomed too loudly at me as he stood in my doorway and told me that ‘after Christmas things would change’.

Change?

Like spare change?

As in money, I thought.

He must have meant that we’d be getting more money I reasoned.

We didn’t get more money.

Instead what I remember most about Christmas that year was my growing sense of displacement.

It was not anything new to me for I had always felt that way about Christmas.

But this year I expected more, for with more money, I expected books. At last. Finally.

Every year, in that house at Christmas, with my pseudo mother and pseudo father, I’d always wanted books and I’d always got clothes or a school bag, but never any books.

Yet this Christmas, despite my expectations, still, there were no books

So I stayed alone in my room.

Just me and the walls.

The walls and me.

It was an ordinary day.

It came.

It went.

Like so many other days in that house.

On boxing day my pseudo parents came into my room and told me that they’d finally decided what was best for me.

I was to be sent to a home in the country.

It sounded nice.

‘What country?’ I asked them.

They stared at me.

I was used to being stared at. That didn’t bother me.

What bothered me was not getting the answer to my question.

How am I to know what country I am in if I am not told?

Their responses made me feel as though I were an ancient text that had been translated wrongly.

Just a few symbols out-of-place here and there and the meaning of everything changed all around me.

Do you see yet how easily I have been taken out of context and slotted neatly back in where other people would prefer me to be?

Or perhaps it is the other way around?

Perhaps it is not I who has been lost in translation but rather  the world around me that has been placed out of the reach of its own meaning.

Warning of Tragic Funding Consequences For Those With Autism/Asperger’s Syndrome Under the DSM-V

Illustration: Matt Golding.

Illustration: Matt Golding.

Australia‘s foremost authority on Asperger’s Syndrome has warned of ”tragic consequences” if governments use the new narrower diagnostic criteria for autism to cut funding for children at the mild end of the spectrum.

”A child diagnosed with apparently mild autism may have challenges that are profound to them. If they are offered little or no support, there potentially could be tragic consequences,” Professor Tony Attwood told the new edition of the Australian Autism Handbook, which will be published on Monday.

Changes to the criteria for the diagnosis of autism – which unlocks $12,000 in funding – are due to come into effect in May.

According to Australian and American studies, the changes are likely to exclude the highest-functioning 9 per cent to 23 per cent of autistic children, many of whom would have received a diagnosis of Asperger’s Syndrome or high-functioning autism under the old criteria.

Those higher-functioning autistics are likely to receive a diagnosis of social communication disorder, as distinct from autism spectrum disorder.

The federal government has yet to decide whether children who have received the lesser diagnosis of social communication disorder will qualify for Helping Children with Autism funding.

”At worst, 75 per cent of those with a current diagnosis of Asperger’s will no longer meet the criteria for an autism spectrum disorder diagnosis under the new criteria,” Professor Attwood said.

The HCWA program has been in place since 2008 and has helped 19,000 children gain access to early intervention services that vastly improve their chances of fitting into mainstream schooling. It is estimated one in 100 children in Australia has autism, though the most recent survey in the US put the rate there at one in 50. Boys are afflicted more often than girls.

Professor Attwood’s caution is supported by the Royal Australian and New Zealand College of Psychiatrists president Maria Tomasic, who said: ”The diagnostic criteria suggests disability may be similar to that of Asperger disorder and will require comparable support. As social communication disorder is a new diagnosis, we do not yet know its validity or associated disability.”

Minister for Disability Reform Jenny Macklin said through a spokesman that her department would ”continue to monitor international best practice and liaise with the Department of Health and professional health bodies about the appropriateness of the tool for diagnosing autism in Australia”.

Sydney mother Kristen Callow knows the trouble parents of newly diagnosed children might find themselves in if funding is cut. Her daughter Juliet, 7, could read at age two but, despite having 500 words in her vocabulary, could not communicate ”I want juice”. She was diagnosed with Asperger’s Syndrome at age 3.

”It could very well be that we would have missed the boat,” Mrs Callow says. ”It’s hard to argue that a profile like that does not need help.

”We got a lot of ‘she is fine’, a lot of dismissal of our concerns. Because she had 500 words, our paediatrician at the time was totally unconcerned.”

After Juliet accessed the early intervention program she has been able to attend mainstream school.

Despite initial difficulties with anxiety and adapting to the social environment, Mrs Callow says Juliet is doing very well.”

This article has been written by Kathryn Wicks, co-author of Australia’s Autism Handbook

Read more: http://www.theage.com.au/national/warning-of-tragic-outcomes-in-narrower-criteria-for-autism-20130330-2h0ab.html#ixzz2RZ8btaHl

 

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