Autism does not go away when you turn 6!

Submitted by nicmat99 on Sun, 26/7/2009 - 19:54

Congratulations to the Federal Gov for their initiatives with the HCWA Package. It is a start and a wonderful way for families to get some assistance in those early days. It is something for the governmement to build on in the future as it by no means is a complete and full proof means of helping families affected by ASD.

My concerns centre around what happens when your child turns 6? They do not grow out of Autism, ASD or Asperger Syndrome. Challenges, although different, continue. By this stage many families have little left in reserve. Alot needs to be done post early intervention - it would be great to see some acknowledgement and work done by the Federal Gov beyond EI.

I agree. Whilst I acknowledge the value of early intervention, there is a distinct lack of holistic approaches to ASD. Autism definitely does not stop at 6. Until people intelligently seek out all available information on ASD, and listen actively to those who are adults on the spectrum, they will remain ignorant of the extent to which this is a life-long condition.

Focus needs to be drawn to several key points:-

1. Early intervention is based on short term results - there is a lack of long term research on efficacy and this will remain so until a more holistic whole-of-life approach is adopted. What evidence did the government use when deciding to apply such large amounts on such a restrictive basis? Did they consider that the application of smaller portions of funding into non-early interventions could have a flow-on effect that could mediate the desperate need for early intervention, and also identify more beneficial treatments that are applied post-6 years?;

2. Some early intervention strategies rely on out-dated information. For example I regard desensitisation to loud noises, as advocated and applied by some practitioners and parents, to be nothing more than physical assault for short term benefit to everyone but the child, who will likely carry long term deficits from this inhumane practice. More information regarding research on the scope and impact of sensory conditions associated with ASD is long overdue. Most of my problems are, and were, caused by crippling sensory impairments that will naturally impact on behaviour and learning. Early intervention should be directed more at research into sensory issues, not band-aid behavioural or therapeutic approaches that remain essentially reactive;

3. Given that there is much evidence that supports the heritability of ASD, practitioners and legislators paradoxically assume that parents and families are in a position to both identify ASD and/or provide assistance that is not adequately funded after early childhood. Many children, especially females, are misdiagnosed or remain undiagnosed until presentation of problems at older ages. Are they less worthy of funding? Many ASD adults remain unable to either gain or maintain education and subsequent employment. Current legislation does not ensure that people with disabilities are not discriminated against by employers, and it is difficult to obtain any real assistance that would provide an income that can support treatment. We don't simply inherit a condition, we inherit a socioeconomic cycle of despair. Does a blind or deaf person have funding and support discontinued after early childhood? Would I receive more assistance if my brain dysfunction had been an acquired brain injury? Something to think about (logically);

4. The continued strong focus on funding for early intervention reinforces the general misconception that this is a childhood disorder only. This further stigmatises and marginalises teenagers and adults on the spectrum, who are commonly bullied in social, educational and employment environments. This then prevents older ASD from identifying as ASD, and this has a knock-on effect for researchers, medical practitioners, educators and policy-makers. How will we ever know the truth about autism if people are too stigmatised to come forward? How can we ever achieve any meaningful results when society is entrenched in many practices that are ableist in nature, and preclude ASD from advancing and engaging in more self-determined and self-funded treatments?;

5. In extending point 4, most non-ASD practitioners and professionals suffer from a lack of sensitivity similar to cultural insensitivity. Many make assumptions about the level of knowledge that parents have regarding their ASD children when compared to their own professional knowledge, and seek to over-ride or discount any information or discourse offered by adult ASD and/or parents. For any professionals reading this, please hear this loud and clear - we are not stupid and we actually have much to tell you. Do not rely on your current knowledge, which is also very male-presentation oriented. Update your knowledge almost daily as it is emerging at lightning pace now. ASD is so individualised that you cannot afford to assume and generalise. Neither can you expect to be informed if you merely attend the occasional conference or workshop. Listen to what (and how) we are trying to communicate with you, be empathic not sympathetic, and don't assume or patronise.

6. For those of us who do not maintain our ASD knowledge, my recently conducted, but informal, meta-analysis of diagnostic statistics as reported in scientific articles evidenced that, even without correct diagnostic criteria for ASD females, this condition is rapidly approaching a prevalence rate of 1% globally. It is important to note that most educated researchers do not consider this as an epidemic, but as a reflection of social and medical changes that make ASD more noticeable and marginalised.

I was pleased to see the funding, but also saddened. Hopefully it will not be just another opportunity for a select group of practitioners to benefit financially while those who really need the assistance remain trapped in hopelessness. on!

We are like minded.

I am a mum (3 kids/teens - ASD), relative, colleague and friend to many persons on the Spectrum. And......a Professional (Counsellor ASD).

Your blog piece, above, is articulate and concise.

Enlightenment and true understanding of the Autism Spectrum comes from lateral thinking, experience, genuine empathy, caring and the sharing of information from people who live (are autistic) with or love/care for someone on the Spectrum.

"Let us be guided by their intrinsic selves

Let antiquated beliefs gather dust on the shelves

Let the colour of their soul be untainted

Let them shine in the colours nature has painted."

(second verse of "Autism and We" by (me) Louise Page 2008)

 Professionals (who don't already), government reps and others need to listen to the parents of children/teens/adults on the Spectrum. Those who are autistic must be listened to equally too. So so much can be learned from this community.

A holistic response to the needs of autistic individuals and their carers/parents, is the only way to go. To propose one way or another (as some tend towards) as being the 'only way' to assists these individuals/groups is inhumane, in essense, and unprofessional and/or uncaring - let alone displays a lack of true understanding of the needs of those on the Spectrum (and their families). 

Louise ;)

FaHCSIA has increased the age limit to 7. Around school age, funding streams for ASD- Enhanced Primary Care (5 per year), Better Mental Health Care Outcomes - 12 Psychologist visits per year plus 6 OT visits, 20 medicare services for 0-to 16 plus 4 if children need to go through diagnosis, two day training for parents and teacher training.



Thanks for that information, mdoma4. Would others like to contribute the reality of paying for the gaps that are not funded. I pay a gap of over $100 per psychologist hour, even though I am entitled to 12 visits per year. Do you think I get to utilise all 12 visits? $1200 is alot of money for someone who is unemployable by social standards. Or do I put my children first? How do I cover gaps in funding and services for my children? How many psychologists specialise in ASD, in both children and adults? Not many. Do any provide a no gap service? (Please let me know). I am yet to have anyone explain my entitlements to me in full. How does that happen? Who is responsible for that. Apparently me, despite my social isolation and niche interests. Am I stupid? Far from it. I simply operate and function differently to the majority.

Two day training for parents and teacher training? Is this adequate. Diagnoses funding - that is ok providing the diagnostic criteria were accurate and everyone was correctly diagnosed. Diagnoses are still driven by misconceptions of generalised symptoms not shared by very diverse and individualised presentations.

People with disabilities should not have to covet the amount of energy and funding directed to others with more visible disabilities. The reality is that autism is a disability that only the wealthy can afford to have, and we do see disparities in funding across the disability sector. This is why I believe that the proposed National Insurance Scheme for disabilites should be viewed from a more empathic and realistic perspective. We are expected to try to be normal, to conform to 'normal' social functioning with its rules and values, and to do our very best to contribute to society in meaningful ways. Yet we are also expected to do this without the privelege of resources owned by the able minority, and within an Able-ist system. Resources include financial, educational, and social.

The way society treats the "disabled" is a disgrace, and I remain disenchanted by the focus on early intervention as being misguided and wasteful in its current form.