Five days earlier than I thought they would, the Senate Select Committee on Autism has tabled it’s final report. It was due on the last sitting day of the Senate in March (March 30) and with March 29 being the day of the federal budget I wasn’t expecting it any sooner. Mind you – it may have been published but it’s tabling may simply be ratified next Tuesday anyway just for completeness.
My name appears in the report eight times. Six of the mentions are in the page notes, one is in the main report and one is simply the note that I made a submission. The now defunct Spectrum Labor scored a total of forty mentions – thirty four in the pages notes, five in the main report and the note of the submission per my personal submission. The spot where my name was mentioned in the body was a reference to my experience with Victoria’s Housing Commission with regard to the shift in preferred location from the Grampians office to the Loddon office (ie from Ballarat to Bendigo).
I have reviewed the recommendations briefly. There are 81, and none of them are objectionable although some do have some riders. For example, Recommendation 6 is great but it is limited to actual participants of the NDIS. It should be expanded to everyone who should be covered by it – and that of course means the whole of Autistic community who needs assistance. Recommendation 11 is also great, but the term awareness should be replaced with acceptance – or both should incorporated. Recommendations 33, 39 and 50 are directed to the states and territories, which honestly should not be in the committee’s direct jurisdiction. Recommendation 44 is right, but we already have a one stop shop for appropriate service referrals in place. The NDIS. It should be used as that.
I have a particular interest in Recommendation 43;
The committee recommends that the Australian Government commit funding to quality research to continue addressing gaps in the evidence for early intervention approaches.
This research option could be the open door that is needed to fully investigate my theories relating to sensory overload and the behavioural base in Autism’s genetic identity. So an acceptance of this recommendation of the 81 is the highest priority for me personally.
The only issue I have with the report lies in what was not there. It would take too long to go through everything, but one has to note that there is wriggle room for a lot of it to be the next step beyond. That means that this report is intended to lay a firm base, which can only be a good thing. There is one exception – the lack of reference to the issues of hate speech in my supplementary submission. I will be following up on that as part of the election campaign.
I have to speak about the dissenting report – not from Labor but from the Greens. It was pathetic. The claim that the report is based in the medical model of disability is ridiculous and paranoid. The claim that this was an opportunity missed gives no credit to the base. This is reflected in his five recommendations – of which only the fifth is okay and I would assume done as a matter of course anyway. The rest smacks of reverse ableism. An assumption is made that all Autistics can communicate – that is not true. Many Level 3 Autistics can not communicate effectively. Recommendation 4 is particularly guilty of this. Anything else outside of that is the wriggle room of the main report’s recommendations. Much has been made of the bullying within the Liberal Party and the Labor Party in the media. The reality is that the Greens have this issue too and unlike Labor who are aware of it and act, the Greens do not. Senator Steele-John demonstrated with this dissent that he is a part of the problem and not part of the solution.
It should of course be noted that this report would not have taken into account the recent issues with the NDIS so any commentary in that regard should be avoided in responding to the Committee’s report. But the wriggle room I mentioned can incorporate the needed response to that issue.
The whole report is 439 pages (including blanks and what not) and carries an important roll in dealing with Autism going forward. It is useful and should not be degraded or nit picked. The bigger picture needs to be observed, based in the recommendations in the main report. We need to work from that.
This is bloody minded to say the least. On the back of the issues I spoke of in the last blog entry, now we find that almost $22 million is being wasted in legal costs as the NDIA try to force users of the NDIS to do things their way instead of making rightful complaints to the Administrative Appeals Tribunal.
Not only do we have a poorly funded NDIS, we also have legal practitioners profiting from the NDIA’s clear desire to get away with what they are doing wrong. This now strongly suggests that the NDIA needs to be stripped of it’s senior personnel. The minute an agency decides to throw lawyers at an issue instead of mediating it and listening, that’s when said agency has totally lost control of the job they are supposed to be doing.
A quick look at the list of AAT decisions reveals thirteen involving the NDIA in 2022 alone, and it’s only February. The results are irrelevant because they shouldn’t be in there in the first place.
The ABC link is brief. There is also a story over on the Sydney Morning Herald website but I can’t get to that without subscribing.
If it wasn’t for the fact that we have an election in the offing, I would start a petition on this one – calling for the sacking of the whole board at the NDIA and replacing them with professionals who actually understand the sector and can respond appropriately to issues. But as I can’t (and neither can anyone else because it won’t have time to be presented before Parliament is prorogued for the election) this has to become an election issue instead, on the back of the state of the NDIS as reflected in the previous blog entry.
I simply have to arrange to meet the new Amaze (Autism Victoria) CEO Jim Mullan soon.
He was on ABC morning radio yesterday with my fellow Donvale High student Virginia Trioli (in the year behind me) pretty much making the case as to why the Productivity Commission totally ignored the AEIOU study from 2007 that I gave them in 2011 when they were inquiring into it’s creation.
Pretty sure I’ve said this before but I’ll repeat it – AEIOU identified in 2007 that the whole Autistic Spectrum cost everyone involved a total of $5.8 billion a year in Australia averaged out. Or an average of $29,000 each (less for those at my end of the Spectrum and more for those at the other end of course). This is the core reason why the funding model was wrong from the get go.
Now the fact that we even have it to begin with is a credit to Julia Gillard and Labor. But since 2013 it has been made into what Jim Mullan described it as – “too focussed on costs over people’s needs”. Putting the buck before the person. That is not on. The NDIS is supposed to be about giving members of the disabled community (Autistics included) dignity. How can dignity come from this sort of blatant capitalism?
The funding bucket for the NDIS is too low. At last count it was something like $25 billion after the rise in the last budget – done purely because of the COVID-19 pandemic and for no other reason. That is nowhere near enough. When it was around $20 billion I said it had to be doubled – at least. And that still stands. Heck, it was pointed out on Amaze’s Facebook page that Autistics take up a third of the funding! Now that’s even worse that the $5.8 billion I was talking about – and people like me aren’t even included! That means that the average put out by AEIOU in 2007 has blown out to something much bigger.
If that’s the case then never mind doubling the budget at minimum. A third of the $25 billion which would be about $8 billion for only a portion of the Autistic community so it’s clear that the NDIS budget has to be TRIPLED! I’m serious! TRIPLED!
This talk about “value for money” means that the NDIS and the NDIA needs a total revamp on top of the funding increase. There should not be any cost cuts – at all. Jim was right – the assessment process lacks insight and understanding into disability and it’s requirements. Even minor ones like mine when compared to those at the other end of the Spectrum who sure as heck need it a whole lot more than I do.
The federal government’s counter claim that “overall funding for the NDIS has increased by $26 billion” is a blatant lie. The budget to begin with was a number that I can’t find but with a current budget of $25 billion…..where is that extra billion huh? In Josh Frydenberg’s back pocket?? Give me a break!
This is another reason why we need a Labor government in Canberra. Funding needs to be increased to invest in the future and help the present. And that includes people like me who can’t work.
This morning on Facebook, Autism Awareness Australia shared a story from the ABC website that irritated me big time.
This story from mid last week spoke about how no consideration was being given when it comes to the rapid antigen tests in schools for those on the Autistic Spectrum – especially those who have trouble with them. Nicole Rogerson was quoted as saying that this process was “completely inappropriate” (explaining calmly to the child why this is needed and so on). Nicole’s right. What if the Autistic child has issues with sense of touch? Quite common in Autistics – I have some myself but they aren’t big for me to the extent that I couldn’t cope with an RAT or a PCR come to that. The child in this story also has Sensory Processing Disorder so in his case it just can’t be done. Full stop. He can’t cope with being touched. Telling all about why the test is needed will make absolutely no difference to this!
On my podcast back in August 2020 I mentioned an issue concerning masks and Autistics. Now this was from America admittedly – and for the record told by an enemy of the Autistic community in John Best Junior. But on this rare occasion he was right. He wanted his low functioning Autistic son to get a diabetes test, but the person doing it refused because the young man wasn’t wearing a mask. An Autistic at that end of the Spectrum can’t wear a mask!
Nicole did acknowledge that the plan had to be put together quickly – and I agree. But I also agree with her when she says that those with special needs have to be taken into account. There are those who can’t follow the procedure for wholly acceptable reasons. That goes for all the needs relating to COVID-19 including vaccines. I should point out though that certainly in the case of vaccines it should not be used as an excuse not to vaccinate against COVID. One must take advice from your GP in consultation with a well versed in Autism psychologist. A diagnosis alone is not enough to just say no.
This is just another example of how far we still have to go when it comes to community understanding of Autism. We won’t get that with “Autism Awareness”. We will get it with “Autism Acceptance”. We are part of the wider community and we will not be segregated from it – certainly like this.
Those who are trying promote Autism as something to fear had another win last month that has just come to my attention.
The biased Autism Science Foundation – run by erstwhile hate merchant Alison Singer – is now promoting the term “profound autism”, and to my annoyance it is in combination with respected medical journal The Lancet. Singer’s actions anger me, but it’s The Lancet’s conduct that is the bigger danger.
Adding over emotional adjectives to Autism (profound, severe etc) promotes Autism as a disease – AND IT IS NOT!!
Descriptive adjectives are far better if they have to be used. This is why – for now at least – I prefer low functioning and high functioning (and variables also involving mid functioning). It puts the emphasis on the noun “function” instead of Autism. Now it is also true that a lot of parents hate the term, and I can understand that. But what’s a better and more accurate description? If the choice is between “profound autism” and “low functioning autism” it has to be the latter.
But we do need something better still – and right now I can’t think of anything that is as accurate and yet less emotional. That latter criteria is the most difficult.
The first priority has to be to get rid of this notion that Autism is a disease. The Lancet shouldn’t even be involved – and this boils back to the hateful notion that Autism is a medical issue. It’s not. I’ve said that before. It is a psychological issue. Medical issues – when they exist and are co-morbid with Autism – have to be treated as a separate issue. Like it or not. We will get nowhere properly if we don’t, and in some cases make things even worse. THAT is the biggest threat.
Calling Autism a disease in any way is hate speech. Fact.
I was delighted to read this morning the story on the ABC website from last Friday.
I have long known that diets like the Gluten Free Casein Free diet are not worth the paper they’re printed on. They certainly don’t cure Autism. They never have. I have always said that gut issues were created by other means and not by Autism itself. Sometimes the diets may help with said gut issues, but because the intent is to cure Autism it is hit and miss when it comes to dealing with the actual issue in the gut itself.
The study quoted in the story makes it clear. The microbiome that was held to be a cause of Autism and the gut issues as a consequence is in fact created by Autistic symptoms – further supporting it’s true genetic base. Here is the study;
I do take one issue with it;
Autistic traits such as restricted interests are associated with less-diverse diet
This is ignoring (maybe) the issue of sensory sensitivity – which I can speak personally to. If my sense of taste reacts badly to something, I’ll avoid it no matter what. I have a history of this in childhood to most cooked vegetables (pumpkin, peas etc). Bad experiences also have an effect (I had one with cantaloupe).
It is my intention to try and contact Chloe Yap – the lead author of the study – about this. I am however so busy at present this may be hard to achieve.
However I will say this. There is value in the argument about the need for nutrients growing up. With Autistic children that means a visit to a nutritionist is essential in order to get around that. Don’t (metaphorically speaking) force feed Autistic children because that will cause meltdowns and needless distress. Educate and widen the horizons, especially if there’s sensory sensitivities in the sense of taste. That can not be changed outright. It can however be adjusted (something that I have tried to do but it’s not easy as it does push the food bills up) and that adjustment – like every other adjustment in the Autistic community – is essential.
So forget the fad diets. Get proper nutritional advice – and stop trying to cure Autism. It’s impossible.
Back in 2018 during the Victorian state election campaign, Amaze (Autism Victoria) held an event designed to bring the subject of Autism to the attention of politicians. During the Q and A session, several people queried the state of the education system in handling issues with Autistics. This was annoying to hear at the time (I was there, representing myself and the now defunct Spectrum Labor) and comments were made as high as the Department of Education.
Fast forward to yesterday. In the Daily Telegraph in Sydney, a story was published by Jane Hanson (see the news page). I could only see the blurb because you have to subscribe to read the whole thing – but the blurb said way too much for my liking!
A mother has revealed her son, 6, who has autism spectrum disorder has been “pushed out” of kindergarten up to 20 times, as data reveals 424 kindy kids were suspended from school in the first half of 2021 — with 80 per cent suffering a disability.
And likely a large number of them are Autistic!
Now as I can’t read the story I don’t know if there were numbers given for the whole education system in it or not – or if the numbers are just New South Wales or Australia wide. Either way – that is not an acceptable number, and more importantly the kindergartens involved are the places that need to adjust and understand. Suspending once is bad enough, but in the case of this child – 20 times says to me that the kindergarten concerned needs to be hauled over hot coals! They had to be doing the wrong thing and putting the child out of their routine – especially at the age of six – is unacceptable. At that age one assumes that education has already been delayed by a year and that’s a problem in itself.
Many kindergartens are privately owned and are therefore a little harder to control by government. But it can be done. This particular kindergarten needs to be investigated and the child’s needs have to be taken into account. If the kindergarten refuses, consideration should be given to the closure of it. I don’t suggest that lightly, because a wrong attitude to pre school education can affect all the children, not just the Autistic one in this case. All educational facilities need to be flexible.
Having said that, some Autistics can have issues whereby the general educational environment isn’t appropriate. Now I don’t know (again, I can’t read the story) if that’s the case here or not. But that’s why the whole thing needs to be properly investigated.
On the wider issue of suspensions, 80 percent of 424 is just under 340. Now there are other disabilities that could be subject to suspensions. But it doesn’t mean it’s acceptable. It means work needs to be done at the kindergartens concerned. They should not be blaming the child (or the parents for that matter and I know all about that from when I was a child!) because that is a cop out. Education must be available for everyone – pre school, primary school, secondary school and university. And it’s not. And in the case of university I know that personally – the environment is wrong for Autistics unless certain conditions are met. For some this may be possible but for others it’s not – and that’s wrong.
We still have a lot of work to do if this story is anything to go by. New South Wales didn’t have representation in Spectrum Labor so there was no way to keep track of nonsense like this from anyone who is there at the coal face. I just hope this isn’t happening in Victoria – or in any other state come to that. I need to find out and I will see what I can do in that regard. It won’t be easy alone, but I can at least try.
Kerri Rivera is the disgusting peddler of MMS (Miracle Mineral Solution) as a cure for Autism. I’ve known about her for a number of years and have pressed in the past for MMS to be banned in Australia. The present state of play is that the TGA (Therapeutic Goods Administration) put out a safety advisory about it, confirming that it had not been approved by the TGA back in May 2020 – in response to Rivera’s claims that it treated and cured COVID-19. It doesn’t. Nor does it cure Autism. It doesn’t cure anything.
To quote the TGA advisory;
MMS is often marketed as water purification drops and may be offered under different names, including Miracle Mineral Supplement. It contains a high concentration of sodium chlorite, which is a chemical used as a textile bleaching agent and disinfectant. Products containing high concentrations of sodium chlorite pose a serious health risk if consumed by humans and should be labelled with the appropriate warnings.TGA Safety Advisory – May 8, 2020
I got an email this morning as part of the Quackwatch mailing list, providing details of a story that Rivera had been raided by German police. Apparently she had moved from Belize, a small country that borders Mexico and Guatemala, to Bremerhaven, a city slightly larger than Ballarat and Bendigo and on the north coast of Germany between Denmark and the Netherlands in 2019.
From what I can tell from what I read on Quackwatch (attributed to an article that derived content from Rivera’s Telegram group), Rivera posted a three minute video in January 2020 – around the time COVID-19 first started becoming an issue causing the World Health Organisation to put out it’s first advisory on it. This was where her claim that MMS treated COVID first came up. Now apparently someone took the advice and as a direct result, a child was harmed. This has happened before – in instances of children being “treated” for Autism. But nothing was done or Rivera bailed to avoid prosecution – as she did when she fled originally to Mexico and then to Belize. In Germany there was a government investigation that she admitted to, but she also intimated that five weeks prior (in June 2021 presumably) that the government wasn’t proceeding. Then on July 13, 2021, she was apparently raided.
The government might not have been proceeding, because it switched to a criminal matter. Rivera’s electronic equipment and her medical supplies were taken apparently, and the police did have a search warrant. Rivera called this (through another person on the group as she couldn’t access it herself directly) a restraint on freedom of speech.
This has been a long time coming. This woman is a harm merchant and she doesn’t care. One hopes that the computers carry everything German police need to press serious charges against her. Her claims that she never saw anyone in person is irrelevant, particularly now in COVID-19 restricted jurisdictions where online communication has became as important as face to face. This is a victory (so far) for common sense medicine. There is no cure for Autism and there is no cure for COVID-19 yet. The vaccine is a preventative, not a curative. Rivera should be in jail and hopefully that will finally be happening.
Side note – the email I read also noted that Fiona O’Leary was in trouble for pursuing an ultra-conservative religious group in Ireland for anti-Semitic conduct. Key word – pursue. She always went too far in those things and karma is about to hit her. She should have just reported it and left it at that. She’s a liability to the Autism Rights movement.
I came across the following link this morning (which I haven’t added to the news page because it isn’t about Autism);
The reason I am posting this entry on my Autism blog is because it brings up an issue that had me at loggerheads from the start with the National Council on Severe Autism in the US, and the main reason Amy Lutz joined. They are pressing that guardianship is a requirement for Autistics. Or as some states in the US call it – a conservatorship.
The article makes a very valid point about the need for middle ground – something that the NCSA opposes. They are focussed on total guardianship for Autistics at the lower end of the Spectrum, but make the error of applying it to all Autistics. This is plainly wrong.
Jenny Hatch is a hero for those with Downs Syndrome. She set the precedent for the middle ground – the same middle ground Britney Spears is seeking and gaining a huge amount of publicity and public support. And Britney should get it – and thank Jenny for the precedent. Britney has issues. She admits to that. Jenny has issues as well. There are many things a person with Downs Syndrome has to cope with. Both deserve the chance to adjust and a middle ground guardianship/conservatorship achieves this.
This is such a key word in everything, and it certainly applies within the Autistic community. Adjustment is crucial. I know. I have adjusted – and I continue to adjust. There are things in this world that one just can’t control, and are not done just because one is Autistic. The obvious example right now is COVID-19, and adjusting to lockdowns and restrictions and what not. We all have to do it, and it’s why I get really angry at those who refuse to adjust and put everyone else in danger.
Adjusting as an Autistic to anything and everything one can’t control is critical. Public spaces change their arrangements for everyone. It’s called progress. It’s called jobs. It’s called a number of other things. There is always a reason. And if there is a negative effect – there is middle ground. The world is not black and white. It is multicoloured. In a way – those who discriminate against the Autistic community are engaging in Autistic behaviour to get their way. They don’t want to be flexible, when they actually can be and should be. But at the same time one can’t go too far the other way. Hence the middle ground.
This is why I see reverse discrimination as just as much of a threat as discrimination itself. It’s black and white. It’s even dark grey and off white. The perfect result is grey. Smack in the middle between black and white. That is where we all need to be. Jenny Hatch got it and good for her. Hopefully Britney Spears gets it. I for one in the case of the Autistic community wants to see it there too. And I’ll get it – by doing what I’m doing behind closed doors (for now) in order to achieve the balance we need, and shut down both the haters who want us cured and wrecked, and those who seek everything beyond what is reasonable and fair to all. The NCSA is dark grey. Neurodiversity 2.0 is off white. We are all in this together and we need to meet in the middle.
I kept my mouth shut a month ago – until now – when Facebook identity NeuroDivergent Rebel (AKA Lyric – formerly Christa – Holmans) originally delivered this statement;
“I am formally diagnosed but will always advocate for Autistic People to be able to self identify, because I understand how much privilege and luck was involved in discovering I was Autistic at the age of 29.”
“In addition, poor and multiply marginalized Autistic People (a large percentage of Autistics) face more barriers to diagnosis. Just another reason that, despite having a formal diagnosis, I support self identified Autistic People. I want that for all Autistics. Gatekeeping helps no one.”
Sorry, but that devalues the diagnosis and in the process gives the haters within the Autistic community their way. They insist on dividing the Spectrum up (reverting to the DSM-IV criteria except totally separating each identity) so as to put 100 percent focus on those at the lower end of the Spectrum and totally ignore those at the higher end of the Spectrum as relevant. In effect – our diagnosis would be taken from us by our enemies, wrecking all the research on Autism that has been done as a result. Not only that, services that are needed will not be covered by the insurance system in America as an example and would be denied. A similar thing would happen with the National Disability Insurance Scheme (NDIS) here in Australia.
That can not be allowed to happen, and that is why gatekeeping – as Lyric put it – is essential.
Haters within the community will always demand to see an Autistic’s formal diagnosis and until they see it they will deny the Autistic’s identification. This is anti diversity and it hurts the targeted person. I’ve seen it. Well known hater Jonathan Mitchell did this to IACC member Samantha Crane (who has a formal diagnosis). There are also those who self identify in order to use it as the proverbial “get out of jail free” card. The recent entry I re-published on this blog about Don Burke is a perfect fit for that.
Now Lyric does make a valid point about “privilege” – however this is talk from an American point of view. I have always said that the mental health system in the US is a joke and an insult. The solution is not self identification being allowed. The solution is to free up options and the ability to get a formal diagnosis. One has that right and it should be pursued for validity. Lyric got it. Back in 1997 I got it. In Australia getting a diagnosis is easier than it is in America. I’m not going to sit here and say there aren’t issues of course, but it is possible thanks in part to our public health sector – a factor that slaughters the US.
A diagnosis on the Autistic Spectrum is not a privilege. It is a right. A right that can and should be pursued. Bailing to a self identification devalues the diagnostic process and therefore the identity itself, and provides avenues for further anti diversity behaviour and anti equality nonsense. Those avenues have to be closed – and it requires a gatekeeper to supervise it.