Submission 155 — Name Withheld — Select Committee on Autism

Introduction:

My name is                                          I am 22 years old and  I came to the

QLD at the age of 12 from the United Kingdom. I am currently a Dual British Australian Citizen but born to Portuguese Parents. I currently hold a Diploma of Social Science from (University A) due to early exit from the Bachelor of Social Science program to transfer to (University B) where I am now currently undertaking a Bachelor in Government and International Relations Majoring in Politics and Public Policy. I am also a member of a Political Party; Politics is a part and parcel of

my  life and my personal  Identity being  self-codified as a  centre-left  Social

Democrat. Apart from politics I have a range of self-absorbed restricted Interests

and  obsessions  which  include  Modern  history  (especially  military  history),

Geography, Planes, Cultural and Patriotic Relics around the world (Particularly form

the Soviet Eastern Bloc era), National Formalities, National Anthems and Patriotic

songs, learning about effective policies around the world and of course Grand Strategy Computer Games (And Video Games Generally). I’m also very Intrigued by Healthcare Policy my Personal Favourite and I watch YouTube videos by a Channel called Healthcare triage which talks about different Universal Healthcare Systems around the world and how well they perform. Apart from my restrictive and obsessive traits as well as obsession for self-discovery, questioning and getting to terms with being Autistic and having two plus my potential Portuguese Nationality despite never living in Portugal or knowing the Language as the Doctor advised my parents not to teach both Portuguese and English as it would confuse me during my developmental delay. However, despite my adversaries I had to face such as

adjusting  to change and  learning the new  ‘unwritten  rules’ when coming  to

Australia.  Nevertheless,   I  consider myself a model  Australian  Citizen. Since

swearing my oath of Citizenship of the Commonwealth of Australia I actively shared its Democratic beliefs as pledged under the oath, I have become increasingly involved and intrigued by the Liberal Democratic framework by the writing of this very Submission and finally taking it as an opportunity to help contribute to the Australian Community. My Dream is to do something one day bigger than myself perhaps be an Electoral Officer, a Policy Officer in the Public Service, a Diplomat or even an MP, a role that serves the Nation. I don’t want to be a Burden on Australia I want to have Successful Career in the long term and be a contributor a Taxpayer not a ‘Taxtaker’ but I believe that Good Quality Public Services and Systems are needed to serve as ‘foundational Infrastructure’ to help make that happen and help Autistic people like myself reach their ultimate potential whatever that may be and wherever Destiney takes them.

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Health and Mental Health F1 (supplementary submission! attached!): Both from my experience and my research into this topic, the mental health system is broken for both neurotypicals (NT) and people with Autism. Firstly, evidence critically shows that both from research and my experience that 10 sessions is woefully inadequate, at bare minimum evidence has shown that 20 sessions is needed for a sound therapeutic alliance to be established as well as chance for therapy to be effective (APA, 2017). In addition the Lack of time rebated per session

is a problem  especially  for some  Autistic people  like myself who are  very

expressive, have a lot of thoughts and feelings to unpack or in my case a creative level of high end sociological thinking and passion due to the ‘double whammy’ effect of my Autism and stark personality which I cannot help. Therefore, for me and possibly many other Autistic people, 50 minutes to an hour is far for enough for me to unpack my thoughts and feelings in a therapy session and I’m sure many autistic people feel the same. Therefore, I think at the very least People with ASD should be allowed 40 Sessions with at least 1.5 hours allowed per Medicare rebate able session. This also serves as a safety net for people with autism not eligible. In

addition, as a staunch Social Democrat  I believe  this also helps enforce the

simplicity and Universality of Mental Health care serving as a one-stop shop style system for mental health treatment. Other OECD Countries spend a much higher proportion of their health Budget on Mental Health care for example Australia spends 7% as opposed to its Commonwealth Compatriot the United Kingdom at a rate of 14% (ABC, 2019). In addition, Germany has a much higher limit despite this, there is no report of an overdependence on the Statutory Health Insurance (SHI) component of the German Healthcare system. From an experience I read from a Psychologist who practised in both Australia and Germany, In Germany about 50% used 25 or less sessions (Breuer, 2018). Therefore, there is no reason to feel this would be a cost issue in fact the cost of doing nothing would be much worse due to more people ending up in crisis and eventually in hospital.

Another Reason why this is also Important for me is this is the only program I knew how to access due to being new to the country at the time and the only thing my GP knew about. The first time a saw a psychologist was in 2011/12 which was helpful at the time. However, in 2012 something went horribly wrong. A terrible complex chain of events happened were a breakdown of communication occurred between my case manager and the psychologist, the onus was on me to follow up with her about something arranged between the psychologist and myself. One day when this was supposed to happen the case manager didn’t appear and I looked all over for her when I found her, she shouted at me and when I tried to explain she blamed me and accused me of Interrupting and nosing into things when I was simply trying to explain what was happening yes she was very flustered and had a lot on her plate, but if there was better staffing this wouldn’t happen in the first place. Also, after that 2

I as an outburst admittedly said “This teacher should be sacked” now I don’t recall

what time  I said  it but the truth was  I said  it and Admittivity  I shouldn’t and

apologised but instead the school mainly focused on this issue and I got into trouble with my parents not believing my story. Although bygones are bygones a thing got

much  better  for me Year 10 onwards Recounting  this  story  for me upends

previously healed yet tender scars. As a result, my parents unfortunately were not very supportive as they were too busy dealing with stress of their own and I had no voice for many years. This impacted my Mental health and just when I needed it the

most,  I  returned  to my Psychologist next time and although she was very

empathetic she then left this was very distressing at the time when I need her the most, I was angry and spiteful fuelled with vengeance and anger. To make matters worse when I asked my parent s why I couldn’t see another Psychologist they said you ran out of sessions. To make things worse I eventually had a meltdown as of recent getting angry at my parents through their absence through this complex time. I only found out in a crucial bout of confusion that my parents couldn’t take out private health insurance I wasn’t aware of this at the time immigration was such as confusing time for me as what I thought was going on wasn’t what I thought it was. I was therefore trapped in a situation I had no say in or anyone to talk to, when I think of this, I say to myself “how did I get into this situation in the first place?”. In note of

this   I understand  that  Australia has a  Multi-Payer System and  Ideologically

speaking isn’t the same on Healthcare as Single Payer/Nationalised systems such as the NHS in the United Kingdom. Unfortunately, Many Autistic people and their families cannot afford to take out Private Health Insurance especially considering that Many Autistic People are Unemployed, and many are on some sort of welfare payment. If the government wants to promote Private Health Insurance Uptake

(Although Expanding Medicare  Particularly  for  Autistic People  is much more

Important) Instead of giving tax cuts to the Rich for taking out Private Health Insurance give out subsides and discounts for Vulnerable to Buy a Policy of their Choice that suits them. Give them a subsidy or voucher system style credits that they can use to buy Health Insurance Including Extras such as Dental or even Private Mental Health Care. It could be needs and means tested based so poorer families or poorer Autistic People and with greater needs attract a bigger subsidy allowing them to buy a more Intense Policy with greater coverage. Stricter Minimum

requirement laws should also come  into  effect especially  for Autism  specific

Interventions, Treatment and Diagnostics as well as Mental Health, The Dutch Healthcare system works in a similar fashion. In the Netherlands Dutch Citizens are required to undertake a Private Health Insurance Policy however if they cannot afford a policy the Dutch Government gives out a subsidy used to Purchase a Private Health Insurance Plan, Please keep in mind though that the Private Health Sector in the Netherlands is a highly regulated and well managed system unlike our

Private Health Insurance  Industry here. Therefore  I have  offered a  suite  of

Pragmatic yet evidently effective recommendations that is Ideologically flexible

although  I will admit as a Social Democrat  I will always favour expansion of the

Public Healthcare component  of our Health care system and  I think we can

multilaterally agree from the evidence and arguments  I have presented  that

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regardless of which path the government choses wither way Medicare especially for Mental health will have to be expanded particularly for Autistic people to a certain degree.

Back on topic, This is just the tip of the ice berg, another problem with the mental health system is its typically unholistic nature a good mental health system should encompass and take into consideration all social detriments of mental health this includes family situation, income, housing, employment (or lack of), geography, education etc. currently this need is barely met by the mental health system and the

system  is poorly co-ordinated, organised and fragmented!  (I have attached a

supplementary submission on Mental Health!). In Addition, I believe the Better Access Program should be upgraded perhaps a separate Item to also allow a multidisciplinary team approach if needed to deal with these issues in a holistic nature. To be frank the system needs to be clear, united and serve as a one-stop shop entry point for someone with Autism to go and is well equipped to refer someone to another provider that can help if that cannot happen within the system. This is also important as GPs serve as a central advocate for people with ASD within the greater context of the Australian Healthcare system. I would also like to comment that the recent changes to MBS that means that someone must rebook an appointment with a GP if they are dealing with an issue different than their initial appointment very disappointing and potentially harmful for Autistic people.

In addition, this could be met by the hub model of Mental Health. An example of this in Action is headspace, however although a good set up its not performing for its value of money and doing little to minimise distress for the NT population let alone people with ASD (ABC, 2019). However rather than abandoning such services I believe such services should simply be met under more scrutiny and accountability for example establish a democratically consumer driven Mental Health authority to monitor the effectiveness of such services to drive improvement, additionally and crucially such services I think should be upgraded. Labor had a proposal for a headspace plus which I don’t think is a bad idea and can be used as an opportunity to make mainstream services such as headspace for inclusive for people with ASD, the government should work with Labor and other parties for this idea to happen in a bipartisan manner (Bill Shorton MP, 2019). However, the current headspace I feel would not meet my needs or the needs of other Autistic young people due to us being deemed by such services as being in the “too hard basket”.

In addition to my story in 2015 due to issues  I cannot explain  I needed to see a

Psychologist again luckily, I was recommended to perhaps the Best Psychologist I ever had in my time living in Australia. However, to this day I feel like I hated myself because I felt I didn’t try hard enough and I felt years self-questioning are my issues due to my Autism, my personality or simply trying to adjust to a new country, this

complex  nihilism  pains me  living  without an  answer  everything  tossed  to

interpretation depending on the myriad of sociological, socio-lower-case-P political theories, philosophies, etc. my whole life was a living world of confusion so I would

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have to constantly distract myself with hobbies, Interests and friends, exercise not to think about my sociologically and chronic complex situation. Sometimes I wonder am I over exaggerating, over worrying or thinking it or have I got wrong all along. I would struggle with the session on how to explain myself I tried so hard it was so hard and tiring and frustrating and I would end up gorged in a pile of frustration and exhaustion like fighting a wave to nowhere. I was then angry to discover that I had communication issues and expressing myself and that I needed an Agenda I got very angry thinking I wish someone told me earlier I also worried if my parents got it wrong. One day for my Centrelink ESAT I needed to collect my reports including my psychologist report form 2015 the part that triggered me was “the complexity and

chronicity of the situation”  I thought to myself oh no my parents lied to me  I AM

COMPLEX OH NO OH NO OH NO…… However, I didn’t know If I read things the wrong way. I don’t know how to explain things regarding my personal issues except via example.

Primary Healthcare is also a good place to start, GPs should and need to be trained in ASD Awareness not just on dealing with children but adults too and make sure they refer people to the right services. GPs should and must be equipped with the tools, advice and knowledge to help them deal with patients with ASD. In addition, there role could be supplemented by the expansion and facilitation of the My Health

Record System  to help improve healthcare communication and  co-ordination

between different healthcare providers not putting onus on the ASD Client to repeat their story all the time. However, for such expansion and encouragement to occur this should be done with consultation between Healthcare providers and the Autistic Community to ensure this essential healthcare enhancement truly helps facilitate a truly social model focused healthcare system (Hemsley, 2016). In addition to facilitate uptake form this group the government could create a program where they send letter to all People with Autism (with data gathered from Medicare, Centrelink, NDIA or a soon to be established Disability/Autism Register). To People with Autism, their carers/Parents/Guardians etc. as well as their GP to book an Annual Appointment to discuss their needs, about their Autism what’s been going lately etc. to update information about their condition or how things affect them etc. e.g. what triggers them to put on a shared healthcare summary so just in case they need to see a specialist such as a Psychologist, Counsellor in a low Intensity Community setting right through to an Mental Health or Physical Health Emergency Better care is ensured just like what we do for Bowl Cancer Testing or Annual Pap Smears the same attention should be given to Autism and Mental Health.

Before I move on, I would like to stress that Even though I support the Social Model of Disability this doesn’t mean I reject the Medical Model, in fact I fully support the Medical Model and Acknowledge that treatment and Early Intervention is needed. In fact, I myself benefited from such early Intervention when I was very young such as

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Speech pathology, Occupational Therapy (at school) and other treatments that unfortunately I cannot recall. This was all funded the British National Health Service (NHS), if it weren’t for this help, I wouldn’t be doing what I am doing today or maybe even writing this Submission! Therefore, I believe the Medical Model and the Social Model need to work in a ‘united’ fashion.

I am also aware that under the MBS/Better Access Scheme Professionals such as Clinical Psychologists work on an Individual Private practice style. This concerns

me because   it  Individualises and  dare,  I say  ‘Neoliberalise’ Healthcare. For

example, the 2nd Counsellor (Clinical Psychologist) at University A (Which I will Later explain in the Next Subsection) responded to my email questioning the training Individual Practitioners have regarding ASD Awareness. I was told that they

learn ‘a  bit about everything’ whatever that means but  its up to the Individual

Practitioner to take on further professional development into a certain field as relevant. He did not undertake Professional Development in ASD but did say at any

one time have 1-2 clients with ASD. This concerns me as  it leaves  it up to the

Individual and this creates a patchy inconsistent mental health system which limits Autistic people’s healthcare choices. Perhaps a solution could involve the PHN working together with local providers to network and offer free Autism training and development. Although I believe all provider should be trained, I understand some provider due to having exposure to many Autistic clients may not bother in such

training or are too bogged down  specialising with other types  of  clients e.g

Schizophrenia but Mental Health Providers need to be aware they could be dealing with Mental Health clients that may also be Autistic at the same time i.e an Autistic Person that has a co-morbid diagnoses of Schizophrenia. As a result this training means that if all providers are prepared Autistic people don’t have to do the guess work in which provider is the most suitable narrowing down options combined with having to be narrowed down even more e.g due to cost, location and travel time. Each PHN should perhaps conduct research in their local areas and Find out which areas have the most Autistic people, collect data from all the providers in each Area to find out which one’s had the most contact. This could help because if say many Autistic people turn up at a specific provider say because it has close access to Public Transport and its not very costly. However, they may have poor outcomes with that service or even turned away because the staff are not trained in Autism. As a result, the PHN could learn about this through collecting data or information through surveys by Autistic consumers and they could agree to offer an Autism training and development package/program for that provider. This is just one of the many pragmatic ideas that could help Improve Healthcare for all Autistic people.

Mental Health Support in Tertiary Education (Partial Relation

to F2):

Although this could be considered part of education it was regarding my experience of the counselling service of my previous University therefore, I deem this under the Mental Health terms of reference (code f. 1.) in order to separate the waters. 3

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years ago, I was having some family issues and one day I was in an awful level of distress and contacted the University text crisis service (I had no privacy at home at the time) only to be met with no response exacerbating my distress. The next day When my distress was at boiling point with no idea what to do as a new student at the time and being in distress unable to act rationally, I went to the health clinic where the counselling service was located. This was the beginning of things to go downhill for me as when I came in admittedly in what would be considered by NTs as weird and awkward to the reception staff asking for an appointment I had to wait

5 weeks in addition  I was teased and laughed at by reception  staff. When  I

complained about no response, I did get a kind phone call from the manager and

me lacking assertiveness at the time mentioned  it briefly however  it made  little

impact. Additionally, when I explained my ASD to one of the receptionists when I bumped into her this didn’t happen again with her. However, the other one when I didn’t have the time to explain talked to me as if I was difficult, I observed from a distance how she spoke to other people as opposed to myself and there was a gross difference in treatment. Therefore, I think Universities should by law or part of their Disability Plans be required to train frontline staff in Autism Awareness and perhaps a flagging system so that when students call, they don’t feel afraid of being misunderstood thus having bad outcomes. To me and to many others just a rude or misunderstanding receptionist enough to prevent people with ASD from getting their foot on the door for help! To make matters worse it didn’t end there. Although I had a next day appointment to compensate for the suffering caused by that as well as the crisis line incident, the counsellor (Clinical Psychologist) was nice to me on the first day things but then things went downhill quick. Firstly, she tried pushing me to see the Chaplin due to her admitting they were not coping with the demand I asked her if they tried pushing for more funding she admitted ‘we wish we could do that but unfortunately we can’t. Although my concern might be about the mental health system at university in general, I have no doubt students with ASD are even more vulnerable to underserving by the generic mental health services at Universities, TAFE’s and other educational institutions, as they are less likely to have the coping mechanisms to cope whilst waiting as there NT peers. To corroborate my opinion, I found a study by Orygen youth health stating that one Higher Educational Institution meets the minimum counsellor student ratio recommended by Orygen (Browne, 2017). In addition, what is seriously lacking from these studies or talks about Mental Health is about in relation about how they interact with Students with ASD, this means we are left out as if we don’t go to University in the first place! There needs to be a measurement tool that all Institutions should adhere to that records and openly publishes how many students with ASD interact with Mental Health services in such institutions to help researches learn more about this underserved issue and help construct policy regarding this issue. 7

In addition one crucial topic I would like to add that is very important particularly for people who have transport difficulties for whatever reason should be a separate Medicare item that allows either Therapy at home or in another Safe, Comfortable and Private space such as a nearby bookable office closet to the persons home. This is especially for people who cannot drive, live in a rural area etc. It also serves as a safety net particularly for those who can’t get NDIS Transport support because they don’t have the mental energy to fight them particularly if they are having Mental

Health Issues in the  first place. One day  I had issues regarding work and my

Disability Employment Service (DES) and this was causing me anxiety, I booked an urgent appointment with her immediately after seeing the Disability Officer over

something completely different.  I explained about the issues  I was going through

work and how I was upset my Job provider at the time couldn’t support me over the issue, Instead of letting me explain how I felt about job providers and how as an Autistic person this was upsetting for me in fear of becoming an unemployment statistic at the time (Its demeaning enough being told by a piece of paper because

of  something you  cannot  help  you  are more    likely  to be  unemployed).

Unfortunately, the relationship collapsed with this counsellor and things took an even greater turn for the worse. On my last meeting with her she told to see another counsellor with no transition plan, when I asked questions and expressed my

concerns keen  for advice on how  to  transition  to another counsellor  I was

stonewalled, to sink  it even lower  I asked  if  I could book another appointment to

discuss transitioning to another counsellor she shut me down saying ‘that’s not appropriate’ in a condescending manner. Then I called the Crisis line and asked what to do, they promised an appointment the next and by sheer bad luck I didn’t get again. I then contacted the manager, and this led to a complex maelstrom of event’s including a combination of unforeseen circumstances that occurred severely

delaying  what  would become  a  lukewarm  resolution.   I made  a  host  of

recommendations  which  included  reformation  and   clarification  and  better

communication   of   University   Crisis   Line  Procedures   including   clearer

communication of rights and responsibilities and Disability Awareness Training for all staff at Clinic/Counselling Service. All I got was a confirmation in writing and a compliment for my suggestion however I have not since been informed about the potential implementation of such recommendations. This made me feel angry and in pure disarray in angst I contacted the Advocacy Service and they said there was nothing they or myself could do to enforce, monitor or press them to do so. I was heartbroken, disgusted and angry feeling like a person who went through a gross injustice never having the taste of compensatory satisfaction. In the end this caused so much hurt and Trauma for me that could have easily been prevented that this combined with my shocking research and revelations by the Victorian Royal Commission into Mental Health as well as the Productivity Commission’s draft report on Mental Health that I have permanently lost trust in the Mental Health System. I am now too afraid to see my Doctor regarding Mental Health Issues. Just picking up the phone to call reception feels like a million steps away, just getting a foot in the door seems like a Dangerous tight rope exercise where 90% of the time is fighting and the other 10% is actual healing and therapy. It also served as a

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traumatic double whammy how I coincidently got into contact with the 2x

counsellors due to the very same reason not getting a call back from the Crisis Line. I think this was what also cumulated to a therapeutic relationship failure with both counsellors due to both being last minute emergency appointments due to me being mishandled by the University Crisis Line.

I  also  think  staff  in  all  Mental  Health  settings must be aware how such

disorganisation and lack of resolution and clarity of such situations and how they can trigger meltdowns and high levels of distress. This is particularly to avoid misjudgement and negative and casual ableist remarks and attitudes by staff

particularly by  reception  staff as  well as management and  the  counsellors

themselves,  If this had happened  I feel  I would have been understood and the

people would have known how the experience wouldn’t have felt so isolating. For

example the worst session  I had was when I saw my counsellor  I was obviously

exhausted had dark rings in my eyes and by the stuttering of my speech clearly

looked traumatised and distress,  I was clearly expressing my desperation  for

sympathy panting and flustered after the chain of events trying to explain what was

going on,  I was obviously struggling due to my obvious sheer exhaustion and  I

clarified what was going on in. I was clearly needing an empathetic response like “Gee wow it seems like you’re going through a lot right know I’m sorry to hear this I know how you feel I’m sorry to hear that but together we can work through this and draft a strategy and how to cope.” Instead I felt like I was talking to a brick wall he didn’t say anything no response and just looked to the floor stomped his feet and looked out the window for a millisecond (Sorry for these weird explanations but I

cannot describe things any other way and how  I feel about them).  I thought to

myself HELLO WHATS THIS? ARENT YOU GOING TO SAY SOMETHING? ITS

LIKE YOU’RE THE COUNSELLOR DO SOMETHING! In addition in Response to my email he said “I can see how hard it is for you with ASD to do our sessions” I was maddened and thought to myself in a panic attack “OH NO I HAVE ISSUES

AND MY PARENTS DIDN’T RECOGNISE IT THIS IS A DISASTER THERE

REASSURANCE WAS ALL WRONG THIS IS A DISASTER” In addition this also triggered me as the other counsellor said that “Autistic people have difficulty with

communication” Which   I  found  offensive  as  just  because   I have  difficulty

communicating my complex circumstances which is again not my fault but also

something  I landed up  into which could have been prevented but also quite

generalist and lazily said but also I thought to myself HELLO YOU KEEP SAYING

THAT BUT DON’T DO ANYTHING PROACTIVE TO HELP ME WITH THAT. I also

think the problem with University Counselling services is they are built assuming that we are independent capable people and thus I felt the onus was on me for everything to follow up and press, the bureaucratic nightmare is grossly unfair and 9

futher perpetuates stress on top of other commitments such as study time. In

addition,  perhaps   University  Counselling  Services  should  be  open   to

communication form the GP (with students’ permission of course) or communicating to the Autistic Student’s Parents of third party (when applicable). Of course these

are  just suggestions and  I’m not sure   if  University Counselling services are

appropriate for Autistic students in the first place but it would be great if they were equipped to be so people with Autism don’t have to feel like second tier students who are not included in all aspects of University life. It is more helpful as Students with Autism wouldn’t have to commute far and could access counselling support on the same day, they have classes meaning less time commuting especially if they lack transport options as well as being more in line with University life. In addition, these counsellors are more understanding about University life thus Students with Autism don’t have to waste Mental Energy explaining University specific problems.

Crisis/Help Lines: Crisis/Help Lines are a fundamental component of Mental Health support in times of need especially when you need someone to talk too in distress and its after hours and you have no one else to talk too. My experience with Crisis/Counselling lines particularly Lifeline and/or Kids Help Line has been mixed and ranged from being supportive to making things worse. For example some of the staff at lifeline act in a very scripted matter, I saw a submission stating that the scripted conversation crisis line conversations don’t work on Autism, some of the nicer Lifeline telephone operators (although I didn’t asked) say they don’t use a script however considering what this submission has said and looking at my past experience I suspect they do but don’t want to tell the callers to avoid people committing suicide because they think ‘well if they use a script they don’t genuinely want to help me it doesn’t come from the heart’ and thus dare I say protecting themselves and avoiding being sued for breaching duty of care etc. Another Problem I had with some Operators as well included some would just Listen and not say anything When I asked why the lady talked with a raised voice “WE JUST LISTEN” in a defensive manner she was losing patience with me when I asked things for clarification, Also when I was just about to clarify things the Operator just hung up on me with no warning. I know sometimes I can linger on things and sometimes I get side-tracked with time but all I need is polite reminders that time is running out. Another Incident was when I was on Lifeline’s text line and as the conversation progressed the Text operator misread my texts and misunderstood my texts which was very frustrating and I also tried to linger on and explain more what was going on The Texter seemed less and less Interested and acted like she didn’t know how to help eventually for the first time I said something I never had the courage to tell any counsellor when I felt down and in distress. “I Wish you were here I Wish I could give you a hug” then Suddenly I got

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an automatic text saying the text session ended. I was Heartbroken as the Text operator hung up on me, I didn’t intend to say this in a Sexual Manner, now I know this could have been interpreted as a sign of Inappropriate intimacy but that’s not what I meant. In addition, this was a raw time for me and many thoughts were going through my head did she feel uncomfortable about what I said? was she just simply busy due to high demand and had no time to warn me about time?. However, I believe this was an Interpretation of an intention of inappropriate behaviour from her side. In addition, anyone who knows me well that I’m a sensitive human being that has no Intention of Infringing people Inappropriately but admittedly I always would

hug my mum for example  if  I was very distressed and  I felt like doing this many

times with my Counsellor in 2015 as well but I held back in fear of being judged as inappropriate and I never knew why I was like this I always thought to myself is it my condition, my culture, my ethnicity or simply habitual of family upbringing. Another Case Included a hostile and aggressive crisis support operator of the University Crisis Line for University A His name was Warren (Not Real Name) and one day I used the text service and got no reply I then phoned and ended up with him and I told him I was upset I didn’t get a text back then he immediately went on the Defensive and Said “ … It’s not my problem your having

technology issues…. What’s  the reason  for  your  call?”  in  the  rudest most

unempathetic and hostile manner. After my trauma induced Paranoia and self inflicted research about Healthcare rights and (there lack of) regarding Crisis Lines One day phoned the Crisis Line Again and landed up with Warren and my mind was addmittly fuzzy that day I couldn’t put words into why and how I was feeling that day. As a result, I couldn’t convey my thoughts and feelings well that day and my head felt like a pile of sludge. In addition, he was bombarding me with questions and his voice grew with impatience. I was overloaded by the constant barrage of questions and eventually I had to yell at him to stop due to sensory overload stopping me from thinking effectively. In Continuation of the conversation Based on my Paranoia of the previous traumatic event which I explained to him I asked him some questions he then answered rudely “This isn’t Long term support this is a crisis line!!!” I then asked a question regarding the difference just to get clarity and a grasp of the boundaries I just then Simply kept answering “It’s how your feeling now” which was a very Obscure and Vague Answer especially for someone With Autism like myself. This one worded vague answer was evidence of a scripted conversation further reinforcing my suspicion of the scripted nature of such services supplemented by the Comment by one of the submissions. At the heat of the climax I admittly asked a question that one may deem perhaps inappropriate, but I asked what Mental Health Qualifications the operators have. He then answered awkwardly answered “you know Students don’t ask that question” I thought to myself WHAT?… as in that’s a very irrelevant and confusing response but If he said “I am not allowed 11

to answer that sorry” or something similar I would understand. I then Persisted

Politely and said, “So I am not allowed to ask that question?” and then he replied with the same response it felt like talking to a frustrated robot. I then added that I asked Kids Help Line and Lifeline Before if they were volunteers with a basic certificate training or university accredited Mental Health Professionals (such as Psychologists/Social Workers etc.) And they were happy to respond. He then got angry and said something along these lines “I know lifeline VERY well and they would NEVER tolerate something like this… im going to end this call” I was hung up, my heart sank, and I was totally shocked. I then one day tried BeyondBlue and I was greeted by a very Stroppy Lady. I acted calm and thinks progressed very slowly we took turns in a frustratingly slow manner. I then asked questions about how BeyondBlue works and although she answered many of them, she then responded impatiently “ahhh gee looks like you have a lot of questions” in a very passive aggressive manner which I felt was offensive behaviour and completely inappropriate. In addition when she asked what my problem was at the time I said I had renumerating thoughts (Over thinking) and all I can recall from her response was “hmmm well you know what we are not going to get that fixed in 30 minutes that’s IMPOSSIBLE!” in an abrupt and crude manner. In continuation I asked her the same question as Warren she reacted saying again in a crude manner “I’m not going to tell you my qualifications” this time Learned not to push the boundaries that some of these crisis/mental health phone operators seem to have a complex about, however she did confirm she got years of accredited Mental Health training and trained further by Beyondblue. In addition, she asked me what coping mechanisms I had, I said getting involved in the community through my political party and I talked about being a ‘neurodiversity’ voice within the party. She then asked in a lower

frowned term what does  ‘neurodiverse’ mean  I simply  replied being on the

Spectrum she replied “on the Spectrum right” in a perplexed manner. It’s sad to see so much Ignorance in the Mental Health realm once again. I then went on to explain my story about the counselling incident regarding University A I commented how poor Mental Health services are these days and then she denied it and said there were plenty of therapies out there in a telling off Primary school headteacher like

manner.  I was made to feel  it was my fault for simply not navigating the system

properly.  I then decided that  it was time to end the call as  I could foresee that  it

wasn’t a productive conversation at all. I then politely declared “I’m sorry no offence but it seems I’m not Having a good therapeutic relations I just think we don’t click”

she even admitted  like ‘yep  I can see  that’ sort of response and  I positively

retreated from the call all cool and calm no hard feelings sort of thing. This was perhaps the most takeaway from this experience because for the first time I learned more about myself and what kind of therapists personality suits me and I developed a new strategy where every time I call such lines or engage with such people and 12

get into contact with the “bad eggs” I use the safe phrase “I’m sorry but no offence

but  I don’t have good therapeutic relationship with you so  far  I do not  feel

comfortable progressing is it ok if I end this call?” or similar. For Your Information I have informed all Operators in all the Instances as well as described and disclosed my Autism and none of them have behaved appropriately as If I never told them, it shows you the Ignorance, casual Ableism and lack of understand there is in the Mental Health realm especially with Crisis Lines/Mental Health lines, now I consider myself a reasonable person that’s able to pull himself together and seek support elsewhere, But imagine someone in a much more critical situation than me who is Suicidal and an Autistic person calls these lines gets these sort of people on the phone. There needs to be proper training and awareness and understanding about Autism for ALL Crisis Support/Mental Health helplines and services as well as

understanding about how we need patience and  clarification  especially  with

boundaries and specifics. A course of action needed is a charter of rights and responsibilities supplemented with universal standards for helplines and that is easy to read and understand so Autistic people can know there rights in dealing with Mental Health Helplines, how to make a complaint and of course which relevant Independent Body to take it up to if needed, an independent Quality Assurance and Protective Watchdog should also be established to hold such helplines to account and be equipped to deal with Autistic people who need to make a complaint. In addition, helplines I find are often overstretched or rationed on quality, this leads to underservicing of users by not giving them enough time or making them on hold for far too long. For example, When I used to call Kids Helpline I waited on average 45 minutes and has gotten progressively worse over the years, Lifeline although quick

sometimes lead  to poor  quality sessions or not being given enough time  to

articulate myself and at worst cut off. BeyondBlue when I used them twice pushes so much into the ‘seIf help’ model that erodes any notion of empathy and pushes the Problem to the Individual and don’t give you enough time to speak. I have

concluded there  is a lack of awareness of Autism  in Mental Health Helplines

including crisis lines and I also think following up Mental Health professionals are not aware of the impact of poor outcomes with Crisis Lines on Autistic People such as myself. In addition, I think this is an Issue that is under researched and there needs to be more research on how people with Autism interact with such telephone services and how poor the outcomes are and what can be done to Improve. Additionally, the level of quality control of such services are very poor and need to be increased, I have concluded that the Mental Health System as whole is Broken! And I don’t think such poor standards of care would be tolerated in Physical Health.

Education F2: 13

At Face value I was a popular likeable and well admired youngster in High School especially in my senior years, I had exemplary grades for Effort and Behaviour and my Academic Grades were at a very good standard more than enough to enter my Desired Degree. That doesn’t mean I didn’t have challenges however as I was at war myself ensued in a confusing Identity Crisis that had subtle yet eventual impacts on my Mental Health in my final year, However I believe this was more due to my extenuating circumstances than my Autism but it Most certainly impacted how I viewed and reacted to them. However, what startled albeit disturbed yet heartened me about my unintentional popularity was that I didn’t try to be popular I was simply being my quirky self. People were intrigued by my personality and the quirks I gave out due to my condition, so people reacted with awe and curiosity like I was some rare yet loveable specimen in a freak show. Don’t get me wrong perhaps this is a pessimistic and ill though out perspective, but it reveals a sad of society that being kind and saying hi to people in High School makes you popular like it’s not normal behaviour. As a result, and in supplement to my perhaps insightful yet pessimistic theory is that I think Autism awareness would be taught at schools to all children and young people and as people develop in high school they should be taught about the social model of disability that way we can create more socially conscious citizens which is exactly the purpose of modern day education so in fact it would serve as a ‘double benefit’. In addition people with hidden disabilities such as young people with Autism should be invited and offered the opportunity ‘with permission of course’ across the spectrum to present and educate students about Autism so that when they enter the real world they are at least aware of the social diversity of citizens that populate our society. An enhanced and integrated version of such universally applied events can be integrated into Career talks that Year 12’s get exposed to perhaps to sow the seeds of Interest in working with people with Autism or people with disabilities and Mental Health Conditions generally perhaps as Social Workers, Psychologists, Occupational Therapists etc. This could potentially also help to indirectly fill the skills gap in the health and social care sector.

Firstly, what was challenging for me was the lack of one and one emotional support at my school, I had a case manager but the only time I could talk to him/her was Lunch time which was very limited and felt very rushed. In addition, I almost had a

change  of case manager every year which  I  felt disrupted any one  to one

understanding between myself and a person to lean on when I needed it. Also what I found was unfair more on the Case Manager than myself was that he/she had a high case load and was also a teacher/carer and teacher aide at the same time, This is unacceptable because If I needed her its likely she would be too busy, I think States should be forced to allow enough funding for a Case manager to be a separate role that has no other responsibilities so they have time to devote to the

Individual and  tailor to a student’s needs. In addition  I think we need proper

Qualified Counsellors at School, I was told that guidance officers are just teachers that took a short course in counselling, this is wrong what we need is proper Mental

health  Professionals such as Counsellors, Psychologists and  Social Workers

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supplemented with additional training in Autism and that collaborate with the

Special Needs Unit. In addition, more emotional support needs to be given to Students with ‘hidden’ disabilities such as mine that might be performing well and behaving well but need extra one-to-one emotional support especially if they have complex circumstances at home.

In addition, I think Autism Awareness training for staff at school would be an important and positive step forward.

Tertiary Education:

I Must say that things have been OK for me in Higher Ed however things could be much better. For starters a great Idea should be that Universities are required by a Potential NAS to report anonymously of course the numbers of Students with Autism enrolled. In addition, like High School the Academics was no problem rather it was the administrative side of things that was challenging. For example, when I was Transferring from University A to University B I had to go through an Arduous process of applying for a credit transfer, I was told one thing only to find out last minute that the information I was told by someone from student admin was wrong, this really upset and distressed me. Originally I would have had to matchup the subjects I did in University A with the potential subjects for University B, this makes access to education or being able to change courses when one decides that its not

for them which may  I add  is a natural thing when you’re at University almost

impossible for Autistic people like myself. I had no support to help me through this process, it was only when I was at my request put to the manager did, he tell me which subjects to match up. As a result, there needs to be more recognition how navigating the administration side of University can make Education potentially inaccessible for people with Autism this is something that’s never talked about and it feels isolating like you’re the only one suffering through this problem causing me to not go to University B a few years back when I couldn’t cope with the stressful administration issues. I think this is indirectly discriminatory and a solution should be that a nationally accredited independent body with a database of all Tertiary Education Units Offered Across the Nation should be charged with matching up subjects rather than leaving it to the belaughed student. This would also prevent a lot of Mental Health Issues form flaring up. In Addition, a NAS should encourage Higher Education Institutions to develop Neurodiversity plans to tailor specifically to Neurodivergent students’ needs such as adjustments to Administration, a flagging system so that when people like myself contact student services they are not misunderstood by staff leading to poor outcomes between staff and students which has happened to me on a few daunting occasions. This brings me to my next point I raised these Ideas with the disability officer in the first meeting to register with disability services for adjustments and I talked about my experience with student services over the phone when dealing with the credit transfer as well as my opinions and Ideas. He responded and may I say well-meaningly “Have you got any 15

strategies to cope with this?”. Now this triggered a thought that this relates strongly with the medical model of disability that it’s me that must learn how to cope, whilst there is an onus of truth to this it also dangerous let me explain why. It exerts the notion of accountability away from the establishment to accommodate the needs of the Individual draining any notion of responsibility away from the Institution needing to adjust to the individual thus extinguishing the social model of disability. Imagine if it was not socially accepted that public buildings should have wheelchair ramps rather that it’s the responsibility for people in Wheelchairs to somewhat walk again. On another topic another thing I felt missing was the lack of stories of successful ASD Graduates or students on the website of University B there are many success stories of people with disabilities but people with ASD are left out. In addition I feel left out being a student with ASD in a field (Government and International Relations) that under the eyes of society doesn’t fit within the stereotypical construct of the STEM Grad working in an IT firm or Scientific Facility, these stereotypes need be challenged and education is the way to change that! I also believe that Universities should create disability clubs and spaces where people with lived experience including those with Autism can safely discuss disability related issues as seen with LGBTQ+ Groups at University.

NDIS H1 and 4:

I cannot comment too much on this topic as I have no experience however, I can comment on some common theme I heard from anecdotal reports. Firstly, there is little to no knowledge of Autism within the NDIA as well as the Planner, LACs etc. This can lead to incompetent assessments and planning reviews. In addition, the eligibility criteria are rigid and grossly unfair especially with the Ill thought Idea to review and harden eligibility for Level 1 Autism this should abolished right away. The government needs to understand that spending on us is not welfare its an Investment that helps us grow and succeed.

In addition,  Eligibility should also take  into consideration the social factors  in

people’s lives not just the diagnoses. For example, family issues, escaping from Domestic Violence, Trauma, Housing issues, Drug and Alcohol issues etc. In addition, there needs to be better support to help people with Autism not only apply for the NDIS and other activities such as gathering evidence but also on planning and on how make the most of their NDIS plan. I heard many Local Area Co ordinators are lacking this way. In addition there should also be extra training for LAC’s on Autism awareness as well as creating an empathetic workforce that know how to help and be empathetic toward people with Autism like myself who would find even setting foot into the NDIS Process anxiety provoking and distressing. Basic Mental health First Aid should be required for all LACs and NDIA staff.

Employment and Social Security F3:

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I have attached a supplementary Submission which was an extract from my

University Regarding a  Positive  Equality  stance  over  Disability Employment

Generally. However, although It talks about Disability Employment Generally some

of the common themes and core solutions resonate  in  solidarity with Autistic

People.

Although not a part of my personal Experience as of writing I am gainfully Employed albeit slightly below my Benchmark hours At the Moment due to COVID-19, I believe current Mutual Obligations are not compatible for people with Autism who end up on the Currently renamed Jobseeker Payment.

Instead I believe instead that all Standardised Mutual Obligations such as minimum jobs applied each month should be abolished. Instead the Mutual Obligations should be based on individual needs taking into greater consideration of the holistic whole of centre needs to the Individual with Autism. For example Instead of forcing someone with Autism to apply for 15 Jobs a month if below the Benchmark hours could to allow the Individual to meet there Mutual Obligations through other means

such as a combination of Work, Volunteering, Study (Especially  if  it included

University internships) etc. Non-Vocational goals should also be allowed to be part of this new flexible mix of tasks that can be allowed to form a part of one’s Mutual

Obligations.  For example,  Travel  Training,  learning how  to  drive,  attending

counselling  or  rehabilitation  (including  for AOD  issues) and undertaking any

capacity building activities such as learning new independence skills. In addition, I must add that I disagree with one of the Submission’s suggestions to end Disability Employment Services (DES) and in fact as someone not eligible for DSP and doesn’t have the support or capacity to apply for NDIS support this would leave me on the dark and also ruin the safety net for many other people with Autism unrecorded by the system who are in the same situation as myself or similar. Also, I also believe this serves as a stern caution not to ‘muddy the waters’ between mainstream services such as Healthcare and Employment. For example, the Social Democratic States that have disability rates above the OECD average such as Germany, France, Denmark and Austria all stringently separate the Waters. For

example, the Public Employment Service  in Denmark (PES)  or the German

Bundesagentur für Arbeit (Federal agency for work in German). In fact, according to an article in the Australian parliamentary library The Social Democratic Model as found by the OECD has found to be the most effective at Labour Market Integration for PWD’s (Matthew, 2011). Of course, I’m not asking for a carbon copy of this model, but we can learn from the Social Democratic model and implement within its means and in a unique type of Social Democratic Labour Market Integration Model

that’s  uniquely  Australian and adapted  to  Autistic needs.  Extra  training  for

Centrelink staff including Assessors should also be enforced. Additionally, many people with Higher Functioning Autism are most likely trapped into the unacceptably below Jobseeker payment (formerly Newstart) I recommend that because people

with Autism are  at increased  vulnerability  of poverty  especially due  to high

unemployment. Therefore, I recommend that a separate ‘Disability Supplement’ of

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$125 a fortnight is created to help create a ‘safety net’ for the approximately

289,489 Disabled people on what  is  currently  called Jobseeker payment.  In

addition, all Autistic people should be automatically eligible for this supplement. In

addition,  all Autistic People should be Automatically eligible  for the Pensioner

Concession Card (PCC) regardless of Income. This would entitle them to things such as discounts on transport which is important as some Autistic people don’t drive due to not being confident or just simply being unable too, therefore to

compensate  for there lack  of transport freedom they should automatically be

entitled to this card to ensure they get the concession rate regardless if they are in or out of welfare payments. In addition, it would also reduce the cost of healthcare for this Vulnerable population and ensure better maintenance and good outcome of health in the long run.

In addition, although I have had a positive experience so far regarding Provider B thanks to the freedom of choice reforms in 2018 and with my second Employment Consultant (EC) in Provider A, this does not mean that DES is in need of major Upgrades and reforms especially regarding dealing with people with ASD. For example, I feel that appointment times are sometimes way to short especially with the first EC in Provider A, the first EC however had a good Initial appointment since then He kept ‘brushing me off’ to put it nicely. This was at a vulnerable time when I finished High School and due to reasons I cannot explain here without getting side tracked my parents didn’t know anything about any system and thus couldn’t help me and didn’t have the mental energy to investigate how to do so. For example, when I went to my first appointment, he didn’t take into consideration that I couldn’t study that year and forgot things, he became clumsy and forgetful and unmotivated from his Job. One day he said I think we should arrange your time you and your parents and myself can meet which I also thought was a good idea. When I later raised this he said “NO NO NO NO” along those lines he was very impatient and couldn’t handle my admittingly non-relaxed habits for example phoning him when he was 5 minutes late for the appointment (He was late a lot one time he was even 20 minutes late) in short it was a waste of time, eventually I found out the reason for his behaviour was he was eventually leaving to a new Job at TAFE, he gave me very little warning and passed over no Information to EC B at Provider A in fact as corroborated by EC B’s comment “that’s how much he cared about your case!”. I then found out that there is usually a high turnover in the DES Industry this is a problem especially for Autistic people who struggle with change!

Also after this incident I have done research into DES Providers and heard alarming stories particularly now in the advent of the COVID-19 Crisis of Providers pushing clients (I have reason to suspect Autistic clients included) in to apply for unsuitable jobs or pressure them to apply for the maximum of 4 jobs a month despite the Jobs crisis due to COVID-19 as well as the activation of such Mutual Obligations (as of 18

writing) before the 4th August 2020. In addition, more stories have pilled up even before the COVID-19 Crisis of DES providers threating to cut off client’s welfare payments breaching their rights and not informing clients of their rights when dealing with a DES Provider. Such trickery and coercion is used to also make people do things there not suited for just so they can ‘tick off’ there KPI’s and get a bonus. However rather than abolishing DES there needs to be a formal review of the Program and it needs to be upgraded and substantially improved. In addition, there needs to be more stringent rules and regulations to protect Autistic clients form potential abuse and bullying from providers and upgrade and better equip the watchdog (the CRRS). Also, potential Renationalisation of DES into a new Disability Commonwealth Employment Service (DCES) could also be something on the cards

for consideration but  if the government doesn’t want to go down that path  it must

improve existing services substantially. Another recommendation is to abolish Large

For-Profit Providers  that have been known  to  rort the system and only give

contracts  to Local  Non-For-Profit  or SME  providers  that are  generally more

passionate and connected to the community. Such localised small-scale providers are also more likely to know the community needs better and are probably also

more  in  touch  with  the  local  labour  market, employers,  schools and  other

community services within the civil society.

A case for recommendations I have is to improve the funding arrangements for DES and expand the training requirements for DES EC’s specially to have Autism specific training as well as Mental Health First Aid Training. In addition, a good Idea would also be to promote a diversity of workers in the DES landscape for example most EC’s have a Business/HR Background a good Idea would also to promote or even require to have DES Provider to have some EC’s to have a background in Social Welfare i.e Social Work this can marry both the Business and Social Welfare skill sets making DES Providers work better as a team particularly to help the more vulnerable clients particularly people with Autism.

The Case of Autistic Keysianism: One day I came across an article on the Atlantic it was about a special cyber unit in the Israeli Defence Force (IDF) named Unit 9900 that recruits and trains Autistic people of conscription age (Mandatory Conscription is Mandatory in Israel). The IDF

has reported  positive outcomes with  this Program (IDF, 2014). However, the

benefits have not simply remained in the Military there has also been benefits for the Individual particularly in increased confidence as well as increased employment opportunities. This is a program we could learn from and implement Nationwide with the ADF (I am aware the Dandelion and Specialstrine program exists), I am always in favour of New Deal style employment programs that create not only Jobs but meaningful careers for Autistic people.

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However, I must stress that the major danger with these programs although how great they are is that they only focus to quote Bob Buckley an ‘elite’ group of people with ASD. This also doesn’t benefit people like myself who are in other fields in my case being Government and International relations. I think we should expand these styles of programs to other fields and Industries such as Health, Government and Policy, Social Sciences, Education, Business, Finance & Commerce etc. A good Idea is to fund Internships work with universities/TAFE’s their respective disability offices and other affiliated programs such as the Australian Network on Disability’s

Stepping into program, University Specialist Employment Partnership (USEP). This

is a starting point for a de facto Universal Jobs Scheme for People for Autism which brings me to my next point.

As a student  of the Government and International Relations  field  I think the

government should dare I say artificially create ‘Public Sector Style’ roles for Autistic people that revolve around Autism specialist policy and should be encouraged within all three levels of government. Some Ideas that come to mind include Autism

policy  officers  at  federal,  state  and  Local  level,  Autism  ‘Neurodiversity’

ambassadors particularly appropriate in Primary Health Network (PHN) Settings such as Headspace, R U OK Day events, Universities etc. Such Institutions have paid positions such as LGBTQ Liaison officers, youth workers and Social Workers many with lived experience. Another good Idea that could form a part of this new deal is to make Social Welfare degree and qualifications to have an ‘autism specific’ stream targeting people with lived experience and creating roles for Autistic Social Workers, Youth Workers etc. this not only helps plug in an employment gap but taps into the enthusiasm and energy of Autistic people who have a passion for social justice and awareness raising in due of their own lived experiences. In addition, creating a peer support workforce would also be a great Idea, there are Mental Health Peer Workers so why not do the same for Autism? In addition, the same concept could also be created with a VET Qualification pathway such as a Cert IV or Diploma. Another Idea is to ‘Artificially’ create jobs that suite an Autistic persons Special Interests and Obsession like me for Instance I’m obsessed with politics, electoral systems, I can name a number of electorates from the back of my hand, whenever they are safe seats or marginal for Liberal or Labor etc. You could say I’m a young Anthony Green (who I am a big fan of) in the making. Special roles created for people like me within this special interest group could include creating a

Tour Guide Job for Parliament House, a Hansard Cleric, History Museum curator,

Politics Tutor/Lecturer at University for PASS Classes etc. (at minimum wage).

In Addition these artificially created roles can be facilitated by the Model mentioned by the ‘elite’ yet successful programs I have mentioned to encourage mentoring, network building and serving as an access point to these roles that fits the Autistic’s Person special Interest who struggle to gain employment through Traditional means such as Interviews, this way we can integrate what has been shown to work in other

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Autism specific employment program models and use it for other Industries not just the IT and Cyberspace industry.

I like to coin this idea “Autistic Keysianism” because it involves heavy government Intervention hence John Maynard Keynes “Invisible Hand” within the free Market to Tap into the potential that a diverse range of Autistic People have (Even people with so called Level 2 and 3 Autism with the right level of support) to be productive even Taxpaying members of the economy and having increased levels of consumable Income which they Spend thus stimulating the economy Thus again helping them reach their full potential. Of course, not everyone is suited for open employment and not all people with Autism will go on and live independent lives. But those who can’t still have the right to an equal opportunity of a decent meaningful life, and this is where the welfare state kicks in. But even then, Autistic people who are in this

situation should  still not be barred  to  right  to work and  to gain meaningful

employment even on a part pension if their work does not erode the provision of the welfare state. I also believe that the taper rates for welfare payments Inc. Jobseeker and the DSP should be reviewed so people with a disability or partial capacity to work are not ‘locked out’ of their benefits for simply working too hard and actually ‘punishing’ hard work. This would help to help provide a safety net for those who are too severe to live interpedently e.g. need NDIS housing support in the long term etc. but capable of open employment part-time. However, being on a part pension part working is still optimal as compared to not working at all and many Autistic people in this Situation would agree themselves. We need a plan that works for the many not the few! On a side note I would also like to briefly mention the topic of sheltered employment. Although Open employment is preferable I do not condone the closure or slander of such facilities as closing them because they do not pay the ‘minimum wage’ rather that the sheltered employment system should be reformed and they should perhaps receive more government assistance to train and upskill workers as well as to pay the workers better wages. In addition, I believe such workshops could serve as a ‘halfway house’ between unwaged and waged open employment. Perhaps integrating or giving extra funding for DES Providers and creating services to help people to transition from sheltered Employment into Open Employment should be touted as an Idea.

Police/Justice F4 (Note some may relate to F1): The justice and policing system are in need for reform for people with Autism. There needs to be the establishment of a community policing approach in order to build

rapport and mutual  trust between  police, the community and  Autistic people

themselves. Unfortunately, around the world there are unfortunate incidents not only between Police and Autistic people but also with people with other disabilities and mental illnesses.

However, there are solutions as particularly noted in the UK (Particularly with the

Mental Health Street Triage Program in the West Midlands Police Area and Thames

Valley Police area) and the San Antonio Police District, TX U.S. In the UK Program,

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when police are called to deal with someone in a Mental Health Crisis they are accompanied by a psychiatric Nurse and a paramedic meaning they can make a decision ‘on the spot’ to take someone to a place of safety such as Hospital

preventing unnecessary detention  in a police  cell  (this usually happens under

section 136 of the Mental Health Act in the UK) (Birmingham and Solihull NHS Trust

Foundation,  2015). As a  result,  there was a  reported drop  in unnecessary

detentions. This would especially prevent added distress for Autistic people if they ever ended up in a Mental Health Crisis which I’m sure many do as reason by the information in section F1 is unfortunately very common. In addition, there are also plans to Introduce Autism Awareness training for Police officers covered under the

National Autism Strategy this combined with a Potential Mental Health Street Triage

Program as well as Mental Health Awareness Training for officers and being accompanied by Social/Work mental Health staff we can not only ensure better outcomes for Autistic people but even Police and the Justice system. May I also add although possibly not relevant to the terms of reference but the UK has a strong focus on community style policing especially with the staffing of Police Community Support Officers (PCSO’s) which helps with outreach to vulnerable groups are more likely to have bad outcomes with police or become Victims of crime they can also organise ‘day out with the police’ days so children and young people with Autism can have a taste on what the police are like so they do not fear the Police and the Police do not misunderstand them.

J Autism Research: There needs to be far more funding for Autism Research especially in Social Research such as how to improve public services. We also must not repeat the same mistake the UK where Autism Research Funding does not reflect the

Research funding  priorities that Autistic want. In the UK Research funding  is

distributed by the following: 56% Biological, 18% Treatment and Interventions, 15% Causes, 5% Diagnosis and Symptoms, 5% Services and 1% Societal Issues (Thomas et. al., 2018). However, studies have shown this does not meet the views held by the participants surveyed on research funding priorities (Thomas et. al.,

2018). Suggestions  to prevent  this case happening  in Australia  is  to take a

community development approach by consultation of Autistic people themselves, take into consideration their views, perspectives and lived experience. There is especially a lack of funding regarding Research in my opinion of Societal Issues and Public Services. A possible suggestion is to establish an Independent Autism Reference group staffed by people of lived experience to consult their needs and wants. 22

In my opinion there also to be greater research into novel topics such as Autistic people from CALD Backgrounds, Autism and Immigration and to know exactly how people are interacting with Social Services and the Social Security System. Exactly how many people with Autism are left behind? exactly how many are on payments other than the DSP? e.g Jobseeker, How many are in DES, How many in ESS?, how Many in DMS?, How many falling beneath the cracks?, how many are wrongly put into Jobactive because of a wrong ESAT Employment Services Classification?, How good are the ESATS?, Do the ESAT Assessors have a good understanding of Autism?, How well qualified and trained are the ESAT Assessor in regard to Autism?. These are the burning unanswered questions that Research priorities I believe are out of touch to the needs want and priorities of the Autistic Community. Yes we need much more funding but not only the same things we are focusing on today but also new unchartered priorities such as the burning questions I described above.

L. Advocacy and Awreness: There are no Autism specific advocacy/Legal services that can assist people with

Autism  e.g.  assist  with  Centrelink  issues, NDIS  Appeals,  Public  Housing

Departments, dealing with government bodies etc. As a result, Autistic people are left to depend on generic Disability Services which are understaffed, overburdened and overwhelmed and possibly ill-equipped to deal with Autistic people/people with Autism.

In addition from my experience  I have  felt  let down and disappointed by my

University  Advocacy  service  in  refusing  for  instance  to  investigate   if my

recommendations for the counselling service at University A was investigated (Ill admit it was my fault and I hated myself over it as in some parts of the Investigation I didn’t want them involved as too many people getting involved was overloading me). In another disappointing experience I needed assistance with the Financial and wellbeing student advocacy officer at University B they gave me conflicting advice regarding Centrelink during the COVID-19 Pandemic. In addition, when I asked information about Disability Related Issues regarding the payment, they had no Idea on how to help me and didn’t know any services in my local area to refer to, a poor predicament for an Advocacy service. I complained about this and was referred to the Manager for Disability, Equity and Inclusion and I had a conversation giving feedback how I feel this is wrong as this represents the unholistic nature of

advocacy services at University.  I also added  it was essential that such services

‘smart up’ on disability related issues especially Autism as it makes a dangerous assumption that People with Autism have ‘Mummy and Daddy to look after them and advocate for them’ (I do not mean this in a demeaning way) and live or are able to successfully access the DSP due to the tightening of eligibility criteria. Therefore,

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many Autistic people are left with nowhere to go.

Autism Specific Advocacy Services must be created both at a Citizenry and Peak body level. These services must be broad spectrum and be nationwide and well known like the headspace model used for Mental Health care. These places should be one-stop shops that cover advocacy needs regarding health, legal, NDIS, Centrelink, Housing issues etc. To help be more Justifiable and efficient for the government they should cover all disabilities but have Autism Specific Advocacy Service Staff/Services within them, a bit like how some headspace centres have the youth early psychosis program. They should also act as a Citizens Advice Bureau distributing and spreading information through mediums such as through leaflets or social media about things such as “what are your rights when sectioned in the Mental Health System” or “How can I appeal an NDIS Decision” there should also be Autism specialised advocates and advisors within these hubs that can do things such as help plan for the NDIS, set goals, go with them to assessments etc.

I also Think there needs to be a permanent awareness campaign on Autism as evidently being done in Victoria in response to their Autism State Plan. Sadly, the reason why is because we may appear invisible and may look like why we may not deserve help or extra support, extra education and public awareness is especially needed so people especially when voting for governments do not forget about us and leave us of out of the equation when voting for specific governments and political parties. I’m not trying to change the way people vote rather that people can still vote the party the feel represents themselves the most but if that political party wants to make cuts for services and support people with Autism depend on, they can pressure that political party to change their policy on that because they are educated and aware. I also think that although this would be a great step as well they must not just leave to other people to speak on Autistic people’s behalf’s on such campaigns, Autistic people themselves should be allowed and encouraged to be the forefront of the campaign and feature in Ads and campaigns telling people about themselves and their stories directly. Although I understand this may be uncomfortable and distressing to some Autistic people therefore Autistic should be supported and given Mental health support when dealing with this as well as being supported to express themselves in a safe and comfortable manner when self advocating.

G.  Cost  of  Failing  to  implement  recommendations

regarding Support for Autistic people: The consequences for failing to provide not only quality support but also bespoke policy development and change into place is not only monumental in scale but also has many indirect effects. For example, the cost of not improving the services for people for autism would mean higher unemployment rates leading to increased welfare dependency across the board. Poor educational outcomes due to bullying

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and harassment from peers and staff can have profound mental health effects and

missed opportunities  for  further education and  training.  All these poor  social

outcomes lead to poor healthcare outcomes especially Mental Health concerns. As a result, the burden to the healthcare system both financially and resource wise would be placed under additional strain and burden. The poor outcomes do not end here, when due to all these poor social factors that cause an Autistic person to have poor health, they then must face a healthcare system ill-equipped to deal with them

exacerbating poor health.  In addition, Poor Healthcare outcomes can lead  to

increased deaths, physical and mental co-morbidities as well as increased deaths especially due to suicide.

In addition, the Consequences dangerously do not stop there. If parents hear about

or see  Autistic people having poor  life outcome  in general e.g poor  health,

employment, poverty, suicides etc. the ‘Karens’ dare I say would capitalise on such a predicament and use it to justify and spread their anti-vaccine agenda. They would exploit the feelings of parents of Autistic children and their friends, this would threaten the progressive change we made away from the medical model to the social model. It would also endanger Autistic people themselves as by fuelling toxic attitudes that Autism is a medically orientated disease. As a result, this would lead

to more  discrimination towards  Autistic people as  well as dare  I say again

‘Neoliberalise’ and Atomise the situation by making Autism an Individual Problem rather than a social issue. This is Dangerous because this is like saying we should focus on fixing people on Wheelchairs over making places wheelchair accessible

reducing perceived value  of Disabled People Including  Autistic People Within

Society. It also creates a so called ‘Health Guru Apartheid’ Situation where so called Health nuts could brag ‘my kids natural and healthier than your unhealthy meltdown autistic because he has thermasol mercury in his veins’ attitude further stigmatising and shaming Autistic people ironically making them seem inferior for being their natural self’s.

A  further more pressing  point  I would  like  to make regarding the  potential

consequential growth of the Anti-Vaccine ideology falsely and immorally capitalised on overserved poor life outcomes for Autistic People is something I hope raises eyebrows for the likes of Greg Hunt and Peter Dutton, the threat to Australian Biosecurity. We are already seeing dare I say domestic threats to our nation are these ‘anti-maskers’ during the COVID-19 Pandemic Imagine the threat to our

nation  if people refused a potential COVID-19 Vaccine,  all because of Autism.

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Therefore, ensuring good outcomes for people with Autism by providing not only a strong safety net but creating services that help them be successful and fulfil their potential is indirectly important for the wellbeing and security of our nation. Conclusion:

I hope my submission has been highly resourceful and insightful upon presentation to the Committee. I would like to Thank everyone including Hollie Hughes for the establishment and operation of this Committee. This Committee has helped me articulate my views, ideas and anecdotal experience with Autism as well as serving as a bipartisan space for all of us to work together of all political colours to help make a better more Inclusive Australia. I hope my Submission has provided some progressive yet pragmatic recommendations and Ideas as well as other Information that help shape future Policy for Future Generations. I also hope my submission has been comprehensive by nature.

Warm Regards

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