By convenor |

Autism Aspergers Advocacy Australia (A4) is resuming a regular newsletter. It’s been a while - we stopped back in 2010, when the Helping Children with Autism (HCWA) package was in place rather than the National Disability Insurance Scheme.

Since then, support for autistic Australians has changed significantly. The NDIS is a big focus for the disability sector, but it is far from the only program that needs improvement. 

Also, over the past 10 years, we expect many members’ contact information will have changed. Feel free to update yours on the A4 website when you get a chance.

A4 renew and refresh - your invitation

Next year will be A4’s 20th year. And we still need your input.

A4 aims to represent you, autistic Australians, their families, carers, and associates. This is tricky because autistic Australians and others in our autism community are not unified: we do not have a single view of what is needed or how best to achieve our goals.

Advocacy for autistic people is challenging. To represent our community, A4 says to government that some autistic people want A, some want B, and some want C. Our community is not united. And some who want, or advocate for B or C think A is completely wrong. A4 can only advocate successfully if it respects the variety of people’s informed choices and preferences[1].

A4 needs input from the autism sector so it can represent autistic Australians and others in the “autism sector”. A4 relies on its community to keep it informed about issues; about what needs improvement and whether efforts to improve outcomes are working. A4 needs your help, or at least your input.

A4 is undergoing renewal and a refresh. We are keen to get new leadership and volunteers. Please, if you can help improve the lives of autistic Australians then get in touch - find out what A4 is about (contact convenor@a4.org.au). A4 has a small Management Group that is advocating for autistic Australians. The group is too small (and needs to be bigger). The current group has an autistic majority, and all of them are neurodivergent.

Please get in touch if you feel you can help.

At present, A4 is a organisation run as professionally as we can on volunteer effort. A4's Vision and Mission are on our website.

We are upgrading A4’s website. We expect to add new sections to the website. We’d appreciate constructive criticism and help (email web@a4.org.au or editor@a4.org.au).

A4 is a member of the Australian Autism Alliance, the Australian Federation of Disability Organisations (AFDO), a member of the Disability Australia Consortium and the Federal Department of Social Services includes A4 in its list of National Disability Representative Organisations.

Regrettably, A4 has not succeeded in its mission to fix everything. Ideally, A4’s advocacy would change everything so that the need for A4 no longer exists. Sadly, progress on A4’s mission has been limited: outcomes for autistic Australians in education, employment, health, and so on, have been insufficient.

However, there have been improvements, for example:

  • Many autistic people are better off with the NDIS compared to supports provided beforehand, 
  • More autistic people are now diagnosed (which mostly means they get better and more appropriate support), and 
  • Diagnosis of women and girls has improved (the female to male ratio changed from over 1:4 to 1:3 and lower).

While there has been progress, many improvements are still required.

Autism and COVID

A4 doesn’t have much autism-specific information about or help with COVID; our volunteers do not have expertise. Instead, A4 gets advice from and shares experience with the disability sector generally. We suggest autistic people may find some autism-specific information in articles (e.g. article here) or look for general and disability-related information from state/territory and federal government sources.

Autism and the coming election

We expect a federal election in May. April, which is usually Autism Awareness Month, may be especially political this year.

A4 raised our concerns over the Government’s War on Autism with the Prime Minister. In our letters, we spelled out our justification for using this phrase. He ignored us.

A4 has initiated its campaign asking people to

Get serious about autism

A4 is about advocacy, so we will be encouraging people to do their own advocacy. We’ll provide material, motivation, and suggestions about what you can do if you so choose.

A4 wants government with proactive policy and programs for autistic Australians in:

  • Employment
  • Education
  • Health, and
  • Disability services and supports.

A4 asks that these all be part of a National Autism Strategy.

The Australian Autism Alliance has released its Shifting the Dial on Autism campaign.

These similar campaigns are about getting better outcomes for everyone: both for autistic Australians and for the Australian community generally.

Recently, Federal Minister for the National Disability Insurance Scheme and for Government Services, Senator the Hon. Linda Reynolds CSC, raised concerns about autism and NDIS sustainability. A4 is also concerned but for different reasons. A4 sent the NDIS Joint Committee a submission on the subject.

The NDIS is only part of what is needed. Other parts of government need to act to improve outcomes for autistic Australians in employment, education, health - diagnosis, mental health, generally, … All this will be spelled out in our election material.

People in the autism sector should be aware that no federal disability minister has met with A4 to discuss the needs of autistic people since the LNP formed government in 2013. Our requests to meet have all been denied. A4 has been part of groups that met disability ministers, but those meetings did not discuss autistic people and their outcomes specifically. 

National Autism Strategy

Last year, the government released its Australian Disability Strategy 2021-31 (ADS). Like its precursor, the National Disability Strategy 2010-20 (NDS), it aims to help people with disability generally - check the website for its lofty goals. 

Sadly, the NDS has been criticised for failing to deliver many identifiable outcomes. The ADS, like the previous NDS, fails to recognise the emergence of autism as a major part of the disability sector and that government needs to be deliberately proactive in developing services and supports. The AEDS is failing autistic Australians.

Since the ADS is failing the autism sector, the government needs specific plans to address chronic shortages in service and supports for autistic people, and people with cognitive disability generally.

The autism community asked the Senate Committee on Autism for such a strategy. We eagerly await the Committee’s response.

Autism in Australia on the rise

The number of Australians diagnosed autistic continues to rise. Various reports indicate that over 3% of Australian children are autistic.

Dataset

Age range (years)

Autistic (percent)

ABS SDAC 2018

10 to 14

3.2%

Carer Allowance (Child) 2021

9 to15

3.1-3.5%

NDIS - 2021

7 to 14

3.1%[2]

Just over 33% of NDIS participants have autism as their primary disability type. Autism surprised the NDIA and the Government by emerging as the biggest distinct primary disability type in the NDIS. It rose from 29% back in 2018 to 33% in 2021.

Diagnosis rates for autistic adults are much lower: under 0.3% above age 30 years. The reason for this 10-fold difference between diagnosis rates for children and adults is not known. A4 expects that under-diagnosis of adults is a substantial part of the reason. If this is the case, it means that most autistic adults are undiagnosed and do not get appropriate services and supports. This systemic failure is likely to be 3 times worse for autistic women.

Note that government efforts to identify significant misdiagnosis or over-diagnosis of autism (see this article) found that clinicians rarely diagnose children as autistic, with ASD, unless they are sure the child is autistic. Politicians and bureaucrats choose to believe increasing autism diagnoses are of people who have little or no disability. The data says the opposite: even with substantially increased diagnoses, most autistic people have severe or profound disability and have very poor education and employment outcomes.

At present, there is substantial growth in the number of autistic school leavers. Employment prospects for autistic school leavers are abysmal. And the government has no discernible plan to address the issue.

Employment outcomes for autistic Australians are abysmal because education systems in Australia fail autistic students. They leave school unprepared for employment. Some of them leave school without the skills they need to fill their day outside a school program, so they are very difficult (expensive) to support as young adults.

NDIS and autism

The National Disability Insurance Scheme (NDIS) replaced John Howard’s Helping Children with Autism (HCWA) package. The NDIS is an improvement in several ways.

  • Substantially increased funding for early intervention
  • Support until age 65 years of beyond
  • Many autistic people got substantially improved disability support through the NDIS, some of them got disability services and support for the first time.

The number of autistic NDIS participants has surprised the government: 33% of NDIS participants have “autism” as their primary disability. Mostly, these are people aged under 25 years, with a very high proportion of school-age NDIS participants being autistic.

The NDIS still has a long way to go to meet its potential. The NDIS:

  • Massively underestimated the number of autistic NDIS participants, and now regards autistic participants as a major risk to NDIS sustainability
  • Lacks understanding and expertise in autism - too many NDIS officials have negative and prejudiced attitudes to autistic participants
  • Needs better planning process for autistic NDIS participants
  • Needs to respect informal carers, especially those caring for autistic NDIS participants
  • Needs to respect clinicians: the NDIS’s so-called Independent Assessment debacle resulted from the NDIA’s prejudice and disrespect for clinical professionals
  • Must restore the essential HCWA autism advisor service that it annihilated as it rolled out
  • Cuts off early intervention too early for most autistic children
  • Under-funds early intervention for autistic children
  • Resists/avoids real engagement with the autism sector
  • Needs to improve its policy and programs for developing and monitoring the disability sector workforce substantially, especially in relation to service and supports for autistic people
  • Needs an Information Linkages and Capacity Building (ILC) program (or NDIS Tiers 1 & 2) that works for autistic people
  • The complaints process is ineffective so a waste of time for everyone
  • The external/independent decision review process via the Administrative Appeals Tribunal (AAT) can be improved in many ways
  • The Quality and Safeguards Commission is not effective
  • The intersections with Australian’s health, employment, education, and injustice (legal & penal) systems need substantial improvement
  • Needs to listen to advice about autistic participants. It needs a functioning Autism Advisory Group and genuine voices for autism in its Independent Advisory Council and its Board.

The challenge for the autism community is to have politicians, bureaucrats and the wider community understand that in its current form the NDIS is just a beginning, and that it still has a very long way to go to achieve its purpose.

The NDIA made numerous major mistakes in how it approaches autism.

  • A while ago, it tried to exclude level 2 autism
  • The so-called Independent Assessments were meant to exclude the mythical mild autism cases
  • Their funding caps on early intervention for autistic NDIS participants

The NDIA is untrustworthy: it squandered the trust and goodwill of the disability sector. The NDIA wants to rebuild trust, but its efforts so far have been inadequate.

A4, with much of the disability sector, is still deeply concerned about proposed changes to the NDIS legislation.

If you ask for an internal review, the next format step is to ask the AAT to review the NDIA’s decision. Little or no support - against NDIA’s apparently infinite legal resources, as this article shows.

Health support for autistic people

Health outcomes for autistic Australians are especially bad. How bad is not known because “the current health care landscape in Australia is one of lack of preparedness for the needs of people with developmental disabilities”[3]. Health outcomes for autistic Australians are at least as bad as health outcomes for people with intellectual disability.

The Health Department created a National Roadmap for Improving the Health of People with Intellectual Disability. It recognised people with intellectual disability have particularly poor health outcomes and that their health outcomes need to improve substantially.

But the Health Department has yet to recognise and address the health needs of autistic Australians: it has done little or nothing, and has no plans, to recognise or improve health and mental health outcomes for autistic Australians. Health officials are inclined to cite outdated claims that 70% of autistic people have an intellectual disability. They use this to excuse their inaction on autism; they imply that addressing the needs of people with intellectual disability addresses most of the needs of autistic people. And in their view, the other 30% of autistic Australians (who are without ID) are not really disabled, that is their autism doesn’t matter.

People in the autism sector are more likely to suggest that 30-50% of autistic people have intellectual disability.

Both the DSMs and the ICDs regard autism as the primary/major diagnosis when an autistic person also has intellectual disability. Addressing needs relating to intellectual disability, for autistic people with ID, simply fails to recognise and address their autism-related needs.

For many autistic people, the health system does far worse than denying them the services and support they need in relation to their autism. Too often, the health system fails autistic people (see Caleb’s story for example).

Mental health seems to be especially problematic for the Health Department at present, not just for autistic people. Frequently, mental health services simply refuse to treat autistic people with mental illness.

Health’s neglect of the health needs of autistic Australians is disability discrimination, but it may be “lawful discrimination”; that is, the type of disability discrimination that Section 45 of Australia’s Disability Discrimination Act 1992 protects and promotes.

The Federal Health Minister retires at the next election. Unless he acts quickly, his legacy will be Australia’s health system’s failure/refusal to recognise and address the health needs of autistic Australians.

There is some hope. A4 has started dialogue with some health officials:

Who is listening?

Currently, the people of influence who seem to be listening best to people with disability and to autistic people within that broader sector are:

  1. The Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability 
  2. The Joint Standing Committee on the National Disability Insurance Scheme 

These are the people who have recognised distinct issues raised by autistic people and people representing the autism sector. They have recognised that disability is not homogenous, that the increasing number of autistic Australians have distinct needs. They have appreciated that autism is a distinct disability that is not addressed entirely by wheelchair ramps, accessible buildings, and the usual responses to “disability”.

We will be interested to see what the Senate Committee on Autism does with the information that autistic people provided to it.

If you want to say something to the Disability Royal Commission of any of the other organisations, but are not sure about it, or if you need help, please contact A4 (email to convenor@a4.org.au is usually best). We have experience and are here to help you through the process. 

Finally …

Please share this newsletter and let people know about A4’s advocacy and representation. We want to hear from autistic people and from people in the autism sector. 

People are welcome to sign up on A4’s website which puts them on A4’s newsletter and contact list and gets access to more functionality on A4’s website.

You get more than what you pay for - A4 is free.

[1] Which we don’t always succeed in - we have boundaries such as not supporting anti-vaxx and anti-science positions.

[2] Over 3% of Australian school-age children are NDIS participants with autism as their primary disability. Many autistic children are not NDIS participants, so the diagnosis rate is substantially higher. Also, some autistic people list other disability types as their primary disability.

[3] Statement of Professor Julian Trollor’, 11 February 2020 at [15]; DRC Transcript, Professor Julian Trollor, Public Hearing 4, 20 February 2020, P-169 [11]– [25].