Submission
No 101
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: Name withheld
Date Received: 22 April 2016
Name
withheld
ee eres Received 22/04/2016
Family and Community Development Committee
To:
Family and Community Development Committee
Parliament House
Spring Street, East Melbourne, VIC 3002
Inquiry Into Services For People
With Autism Spectrum Disorder
Firstly I would like to address the title - “Autism Spectrum Disorder”. This title merely attempts to normalise those diagnosed with Autism or as it is better known as - Dr Leo Kanner’s Autism. When Kanner read up on Hans Asperger discovering a group of children’s behaviours were slightly different to their typical peers, Kanner realised that what he witnessed was every medical researcher hoped to encounter once in a lifetime - something different. Kanner witnessed amongst the eleven children brought before him for assessment, a new illness or clinical entity, in these cases a distinctive developmental disorder. Kanner was able to identify that there is a dichotomy between Autism and Asperger’s and that - “Autism is not Asperger’s!” The title Autism Spectrum Disorder, does not distinguish between the low functioning, non-verbal group who hand flap, punch their heads, teenagers wearing nappies who will never contribute to society - to those who can leave independent lives, start a family,
work and contribute to society. So please - Stop calling it ASD (Autism Spectrum Disorder).
Please recognise and acknowledge - Low Functioning Autism, High Functioning Autism and Asperger’s. The likes of EE and I are merely incompetent, ignorant individuals who are merely making money at the expense of our children. Unfortunately Governments default to these “so-called” experts for advice, when all you need to do is look at Dr Leo Kanner’s work and compare
it to Hans Asperger - it is self-evident. “Autism is not Asperger’s. http://neurodiversity.com/library kanner 1943.pdf
To the Family and Community Development Committee;
Iam amum and full-time carer of a fourteen-year-old with severe Autism,
Pervasive Development Disorder, Global Development Delay, Low Functioning
and Non-Verbal, who also suffers from Sensory Processing Disorders, Hyperacousis and Tonic Clonic Seizures. He also has a multitude of medical conditions and requires constant supervision for his own safety.
a) The Prevalence of Autism Spectrum Disorder in Victoria; I have asked this question at many Victorian Autism meetings and Forums. I have been given various statistics between - 1:110 or 1:100 or 1:68 - and not one person can back-up their stats. When I request them to provide me with the latest study, no one is forth coming.
Australians recognise that the prevalence of Autism is rising dramatically every year. The last study commissioned by the Government was awarded to Dr John Wray MB BS, FRACP, in 2004 to determine the Prevalence of Autism in Australia.
The figure of 1:160 was released in 2007 with birth cohorts between 1991/1992 to 1997/1998. My son was born in 2002 and has still not been counted. Autism organisations quoting 1:100 is only a guess/estimate; our children are worth more than a guess/estimate. http://www.autismadvisoryboard.org.au/uploads/Autism%20Prevalence%20St
udy%20FINAL%20Feb%2007.pdf
When the “so-called” experts explain for the dramatic rise in Autism rates they say it is “due to better diagnosis,”- I totally disagree with such a ridiculous assertion. If it were, “due to better diagnosis,” then where are all the - 40, 50, 60, 70, 80 or 90 year olds; who are hand-flapping, having violent meltdowns, having seizures, having constant diarrhoea, abdominal pain, screaming in pain, wearing nappies, never sleeping, unable to point to an object, bathe, feed themselves, stay safe, even unable to speak? Hmmmm! Simply look at what has been introduced within the last 20-30 years and there lies your answer!
b) The availability and adequacy of services provided by the Commonwealth, State and local governments across health, education, disability, housing, sport and employment services;
Firstly, I receive NIL services for my son.
What action I would like to see is the Federal and/or State Government launch an investigation into looking at these Autism Organisations such as AMAZE, Pinarc and Ballarat Autism Network and see them for what they truly are - time wasting, money wasting, “so-called” Autism advocates who are clueless to the “real” Autism, except for FY They never listen to your circumstances and as a result are unable to determine what services are conducive to your
child’s needs. Seriously! | have asked - “where is a check list of services
available for me to ponder over in my own time to determine what I think is conducive to my child’s needs?” - I keep asking for “the list” and it is never forth coming! Why not?
I have witnessed that if you do not conform, agree or comply with these Autism
organisations, your child pays the penalty by being excluded from everything. It has happened to me, AMAZE blocked me from their facebook page. Pinarc
doesn’t provide any services conducive to my son’s needs and Ballarat Autism Network just ignores you.
Theses organisations can provide me with a psychologist and I have told them that I choose not to have a psychologist, why don’t they listen? I know a psychologist cannot help with my circumstances, so why do they insist on pushing one onto me? What! should be able to do is convert a psychologist’s value to the value of something that would benefit my child’s needs, for example;
Myotherapist, Nutritionist, Chiropractor, Biomedical Doctor or Naturopath. Why
can’t I access these services for my child?
Local governments are also guilty and ignorant for not recognising these children’s disabilities. One Autism organisation is failing to educate my local government - The Golden Plains Shire Council. As mentioned earlier, my severely Autistic, low functioning, non-verbal child suffers from Sensory Processing Disorders, Hyperacousis and Tonic Clonic Seizures and has been subjected to the most torturing 6 years of his life. The council has allowed neighbours to ride their motorbikes along my boundary and their incessant revving drives my son insane, he reacts by punching his head in frustration. Where is the “Duty of Care,” from this council? Where is AMAZE, Pinarc or Ballarat Autism Network making an appearance at Golden Plains Shire Council to educate them about these children and their Sensory Processing Disorders and Hyperacousis?
Yet, these Autism organisations are the first ones to hold out their hand when it comes to being funded by Federal and State Governments with Taxpayers money. In 2014 AMAZE’s Annual Report shows a substantial amount of money from Federal and State Governments with a high percentage going to wages. Unfortunately I am unable to locate their Annual Report for 2015 because they have not disclosed it on their website. Any organisation receiving government money (taxpayers money) should be completely transparent, or else what are they hiding? http://www.amaze.org.au/uploads/2014/11/Amaze-Annual-Financial-Report 2014.pdf
Pinarc also receives more than it’s adequate funding from governments - why aren’t they using this money to educate my local government - Golden Plains Shire Council about Autism? http://www.pinarc.org.au/Pinarc%20Annual%20Reports/Pinarc%20
%20Annual%20Report%202015%20.pdf
The sooner Autism organisations join together and become alliances, the sooner the massive expense and waste of Administration Fees and wages will decrease and the sooner it frees up money to distribute to those who truly need it - the
disabled!
c) The adequacy of services to be provided under the National Disability Insurance Scheme (NDIS);
NDIS is not available in my area until January 2017 - I still argue that the NDIS “should be based on merit” and not the way it is currently being rolled out in areas. I have grave concerns that my son will never qualify for the NDIS because the criteria soon will be impossible to meet.
d) Evidence of the social and economic cost of failing to provide adequate services; and
Pinarc and Ballarat Autism Network have a slogan - “If you don’t ask you won’t get.” I was present at an Autism meeting organised by Pinarc and Ballarat Autism Network and they had a guest speaker from Carer’s Victoria
visit the group. During the meeting | asked for a service that will help me and
free me up my time to work with my child and the demand of his daily routine. I asked if 1 could convert the cost of Respite into a cleaner (to clean my house whilst I attend to my son would help me immensely), my request was quickly dismissed and mocked, then the speaker desperately tried to persuade me otherwise. So much for the compassion from the individual representing Carer’s Victoria or those representing Pinarc should be standing firm by their slogan - “If you don’t ask you won’t get.”
Autism is a financial strain for parents and even if the government implements what they consider an excellent plan, the economy will buckle under the strain. This economy cannot sustain the amount of money required to keep these children who will one day become non-working adults reliant on others through no fault of their own. Their disabilities restrict them so much they cannot contribute to society. Even “when” Australia implements the long overdue Vaccine Injury Compensation Programme as 19 other countries have, taxpayers will still have to pay and with half of the workforce unable to work the economy will not sustain the payouts. http://www.who.int/bulletin/volumes/89/5/10-081901/en http://www.vaccinationawareness.com.au/Images/Slater&Gordon.pdf
One solution to help with the burden of Autism costs is addressing the American “Childhood Vaccination Act 1986” - that prevents suing the Pharmaceutical Industry for Vaccine-Related Deaths or Injuries - that was introduced by Ronald Reagan, former USA president. Why doesn’t both sides of government help the Australian people to action to repeal the Act to allow the vaccine injured to rightly sue for compensation and make the Pharmaceutical Industry accountable for their actions - for “Autism is
Iatrogenic!”
The decision in S.C.0.T.U.S (Supreme Court Of The United States)
Bruesewitz v Wyeth - found that “the product [vaccines] are “unavoidably unsafe.”” http://www.supremecourt.gov/opinions/10pdf/09-152.pdf
https: //childhealthsafety.wordpress.com/?s=italy+court+holds+mmr+vaccin e
http://www.cbsnews.com/news/family-to-receive-15m-plus-in-first-ever
vaccine-autism-court-award/
http: ww.dail il.co.u ews /article-2262534 erican-parents awarded-600-000-compensation-son-developed-autism-result-MMR vaccine.html
e) The projected demand for services in Victoria. All the money in the world will not help any child until the “CAUSE” of Autism is identified and dealt with. Besides, the money never goes directly to the disabled individual; the money is funnelled through the Autism organisations or better known as the “middle man.” They take their “cut” and the remainder (if they feel generous) will eventually be passed on. Solution: Vouchers to the individual?!
Until someone has some “testicular fortitude” to determine the cause of Autism, the demands for services in Victoria will soon run dry. Soon the state will have to deal with burnt out parents struggling to manage their child’s needs with inadequate services or resources. Demands for services will spiral out of control year after year after year. The up-and-coming next generation will inherit this mess with no promising solution in sight.
A vast number of Autistic children suffer from Sensory Processing Disorders and Hypercousis. So where are all the “so-called” experts from AMAZE (Autism Victoria) to assist and implement a management plan for the Family and Community Development Committee? Afterall, this Autism organisation receives Federal and State funding (taxpayers money). Or, if the truth-beknown they simply do not know what to do. Has it reached a point where every means to assist Autistic children with proper services has been stretched to capacity?
Until something is done, all of these problems will increasingly escalate out of control every year with Autism Organisations unduly asking for money. When will it end? The money pit isn’t endless.
Once again, until someone takes a stand as asks — “What is going on with these
children that we did not see 20 or 30 years ago?” Until this question is addressed, nothing will be achieved.
So I ask “why are Governments only being “reactive” instead of being more “proactive” when it comes to these children’s wellbeing?”
Until a court decides whether my intuition is correct or not, I will continue to say - “Vaccines Caused my child’s Autism!”