I don’t often get mad but inequality, mistreatment and ignorance all make my blood boil, particularly when it’s aimed at the most vulnerable in society, such as those with disabilities or special needs.
There are discussions in every nation right now about the challenge of maintaining services to the community in the face of exponentially rising costs. With revenue stagnating or even falling in some economies, tough decisions have to be made.
I know and I accept that.
What I won’t accept however, are the attacks on the vulnerable that inevitably come when closer scrutiny is applied to government spending.
It’s common to see social commentators, journalists and even the government of the day rail against those who rely the most on government assistance. Common wisdom states that if they could just try a little harder they could look after themselves and no longer be a burden on the public purse.
Because obviously they are not REALLY in need of assistance.
Most recently, I was horrified by an article in The Australian, ostensibly discussing the looming cost of the full roll-out of the NDIS nationally. However the article quickly degenerated into a soapbox piece for the writer to share their views on rising rates of autism.
This quote will set the scene for you…
“The explosion in autism spectrum disorder means the fledgling NDIS bureaucracy is faced with huge numbers of children with various psychosocial disorders, and vocal parents who are doctor-shopping for an autism diagnosis demanding early intervention and increased financial support for an often ill-defined behavioural problem under the cloak of disability simply so they can access extra help for their child.”
And the money quote…
“But we should be asking whether many of the children at the milder end of the spectrum are, in fact, suffering from emotional problems and psychologically stressed parents; and instead of looking to the disability route, perhaps parents of difficult children with reasonable intellectual capacity need to look more closely at their parenting practices.”
I was truly aghast at the author’s insinuation that special needs parents are money hungry, desperate, doctor shopping, incompetent and hysterical.
I was even more troubled by the belief that people with autism on the milder end of the spectrum are merely suffering from an “ill-defined behavioural problem.”
But I was absolutely furious to read the parting advice, that parents need to look more closely at their own parenting practices before seeking help.
This opinion piece paints a harsh picture of how autism and special needs are perceived by some in our society – a picture that sadly many people see and believe. It also highlights the genuine ignorance of the condition and the impact it has on the person diagnosed and their families.
I have no idea why autism diagnoses are sky-rocketing – no-one knows.
I have no idea how we as a society are going to fund and support people with autism and their families into the future.
I have no idea whether there are people out there rorting the system or not.
But I do know that autism is real.
I know my kids, who are both on the milder end of the spectrum, face challenges every single day, even though they are both intelligent, verbal and compliant.
I know how much money we have spent over the years helping them access the therapies they need to try to fit into a society that does not understand, let alone cater to, their needs.
I know how many hours we have spent attending appointments, researching therapies and working with them at home to give them the best shot at a full and happy life.
I know autism is real.
I also know how hard it is to be a special needs parent, struggling to understand my kids, desperately trying to access the help they need, battling with bureaucracy to fight for their rights and forever educating the ignorant.
It’s not a life I think anyone would willingly choose, if they had a choice.
Which is why ignorant, ill-researched stories, like the one shared in The Australian, drive me absolutely crazy. Honestly we have enough ignorance to battle in this world – we really don’t need it to be perpetuated and amplified by those who should know better.
I will leave you now with one of my all-time favourite eecards because it’s simply perfect:
The cost of autism ignorance in the community is real and growing – I really wish I could slap some sense into people so we could move forward and provide more support to those who truly need it.
Would you like more support as a special needs parent?
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The only way the government can sell their dramatic cuts to hospitals, medicare and welfare is by selling the idea that people aren’t really sick (or that they’re bludging off the system, that article will be coming). They don’t need to pay to support Austism (or any other illness or disability) if it’s ‘overdiagnosed’ and bad parenting. Then all the parents who don’t know anything about Autism can nod their heads and say ‘bad parenting, yes, my child isn’t like that. Why should we pay for that?’ Read very carefully the articles that sell the idea we don’t need to fund the health sector. The fact that the Govt is making everyone go through tests again to prove their illness in order to receive their pension is a very stressful and damaging scenario to people are already not in 100% best state. We the public need to be smarter than that, and know when we are being sold propaganda, in order to take something away.
100% right Lydia. There are so many inequalities in the world right now and we, the people, are the scapegoats. It is so very unfair.
So much to say but you’ve already said it so well. So very disappointed in both major politic parties and their policies. There must be a better way?
You would think so Raych – but it doesn’t seem likely 🙁
Oh Kirsty, how I feel for you and your wonderful advocacy. This country is getting so many things wrong funding-wise – education and health – as we know. The link does not go to the article but to the paid subscriber site. I will send you a DM re the article. Denyse x
Thanks for letting me know about the link. I could access it a few times from my original Facebook post but then it did the same for me too – stupid paywalls 🙁
I saw some article recently about how many taxpayers supported the elderly a generation ago vs now. It was a huge drop. I totally understand the concern in how to manage it.
What annoys me is why it’s suddenly the people’s faults. That’s offensive and ignores the real issues.
All semester I’ve been studying development, and my response to most things now is “f^&*ing neoliberal global politics” 🙂
Hahaha – I’m going to use that in my next autism funding debate because it’s the truth!
I can see how that would drive you crazy. I get it. I mean, I get frustrated with the whole dyslexia debate (is it a disability or isn’t it?) etc so I can imagine how your blood must boil when it comes to autism and the ignorance associated with that.
You’re such a good mum.
You’re such a great advocate.
Thanks Leanne x
That sort of stuff really grinds my gears. I think reducing an issue like this to dollar and cents is just not the way to go. It must be so frustrating to still see this kind of ignorance spewed out into the world.
The problem is someone does have to foot the bill for all of this – I used to work in the public service, I get that. But placing these sorts of assumptions on a particular part of the population that just happens to account for 30% of NDIS expenditure is not the smart way to proceed. Particularly when you think about the cost to the economy and to society down the track if effective early intervention is stripped away. It just does my head in…
How incredibly frustrating for you to read such an ignorant view. Parents do NOT go through the very arduous, expensive and frustrating process of an Autism diagnosis just to rort the system!
Exactly – why would anyone even THINK that???? No wonder I resort to wine most nights – helps me deal with all this ignorance in the world!
I hate it when coming up to an election and none of the options work for you … it would be great if political parties could stop acting like a bunch of rowdy teenagers (actually there are teenagers who would do a better job) and actually sort this mess out and give options and ideas that will work for the country and the people who live here AND do what they say they will do.
If only they really cared for anyone but themselves….honestly everyone seems to be in it for themselves these days…
Obviously the writer has never had anything to do with a person with autism or even Asperger’s. They need to get out of their bubble and go live in the real world! Lots of things drive me crazy, too many for one blog post, so I went off topic today. Or you could look it as the people who judge me for loving my nanna naps drive me crazy!
I love your love of nanna naps. I know I could do with some of those more often!
PS Oh and cats. I am crazy about cats. Obviously 😉
Just like me and my pugs 🙂
That article was a pile of poop. I don’t blame you for being enraged. Love your work.
Oh it was terrible – designed to get a rise out of people like myself but what concerns me is SO MANY people seem to share those narrow views. Which is why I’m driven to wine and chocolate most nights!
Oh my GOOOOOOOOOOODNESSS!!! Who on earth would go Doctor Shopping for an ASD diagnosis. Please! That is ridiculous in the extreme. What are these morons talking about.
I know! But for some reason people believe this stuff – honestly, some days I just want to give up!