Select Committee on Autism,
Department of the Senate,
Parliament House,
Canberra, ACT 2600.
To the Committee,
I’m a 50 year old autistic woman with four children aged between 7 and 22 years of age, two of whom have diagnoses of autism, two of whom are seeking assessments for autism or similar disorders. My submission is mostly descriptions of personal experiences, observations, and occasional suggestions. I regret that I imagined that the deadline was later than it is, so this has been hastily written, inadequately edited, may be overly long (as prolixity is one of my autistic traits), and cites no sources. I hope that reading it is as edifying for you as writing it has been cathartic for me. Probably not, but I can hope.
I’ve underlined or italicised or bolded my suggestions and key points. Sometimes all three. I hope that helps.
Contents:
A: current approaches and barriers to consistent, timely and best practice autism diagnosis;
I have opinions, stories, insights and suggestions.
B: the prevalence of autism in Australia;
At least we’ve noticed the tip of the iceberg.
C: misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;
Can confirm. Women with ASD are still expected to shoulder the whole load.
D: international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;
E: the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;
F: the interaction between services provided by the Commonwealth, state and local governments, including:
health and mental health,
education,
employment,
justice, and
Housing;
The Referral-go-round. It’s a hell of a ride.
G: the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people;
Leaving highschool - did they jump or were they pushed?
H: the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:
i: Autism understanding within the NDIS,
Memo: articulate =/= competent
ii: the utility of the Early Childhood Early Intervention Pathway for autistic children,
Yeah about that…
iii:the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings, and
iv: the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services;
Buckle up.
i: the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;
J: the adequacy of funding for research into autism;
Bonus tangent.
K: the social inclusion and participation of autistic people within the economy and community;
It’s not only about reducing our suffering, but about gleaning the unique potential that our differences enable.
L: the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities;
Um. Yes?
M: any bill that relates to matters within the scope of this inquiry that is referred to this committee; and
May the odds be ever in your favour.
N: any other related matters.
So, here we go.
A: current approaches and barriers to consistent, timely and best practice autism diagnosis;
As a woman who was diagnosed at the age of 42 after a lifetime of coping, and failing to cope, with autism, I have… opinions… about the benefits of timely diagnosis. Especially in women and girls.
As a mother of two children who have been diagnosed with autism in their teenage years, I have … opinions about the benefits of educating educators to identify children who have autistic traits. Well tuned screening programs might streamline this process.
As a parent who has had professional educators and counselors try to discourage me from seeking assessments for my children because they are horrified of assigning a child a “label” and associated stigma, I am very, very keen for educators and counselors, and people in general, to learn more about the benefits of diagnosis and early interventions, supports, and understanding of the traits, frustrations, and gifts of autistic children. Diagnosis, compassion, and encouragement to engage in building workarounds for the impairments of autistic children will avoid some of the intense early trauma otherwise, and in existing systems routinely, caused by trying to force square pegs into round holes.
As a parent of two more children (I have four kids) who have not been assessed for ASD or similar, I have … a lot to say on the topic of access to competent and affordable assessment.
I am currently walking my 19 year old through the telehealth parts of an ASD assessment with a provisional psychologist through the in Melbourne. The assessment didn’t happen when she was a minor (and eligible for a taxpayer funded assessment program) because I trusted that if she needed an assessment for an ASD, the teachers and mental health professionals who were engaged in her care would identify that fact, and make the assessment happen. I was wrong.
As an adult, she still needs an ASD assessment, but the cost is prohibitive - more than $1000 to see someone locally, and more if, as is too often the case with people who have executive function impairment which is common for people with ASD, you forget appointments and have to pay the extra penalty for not showing up.
So we are using the services of a provisional psychologist at a university which is a four hour round trip from our home when we get to having in-person sessions, as is absolutely required by the assessment process.
The point being that; even when an ASD assessment is “cheap”, it’s expensive.
And too often, as people with undiagnosed ASD’s inherent impairments, and the lifelong compounding trauma of being judged by everyone around you as somehow bad and wrong regardless of how hard you are trying, are likely to have the lowest of low incomes. And there is no medicare rebate for ASD diagnosis. The expense is a major, and often unsurmountable, obstacle to people who are seeking an assessment. Often, once one family member is identified as likely to be autistic, it shines a light on the whole family, as they have similar traits and issues, so multiple children and also parents may need assessment all at once.
The more heavily effected an independent ASD person is by their ASD traits, the less likely they are to have the means to pay for assessments.
Independent ASD parents may have to pay for assessments for multiple children as well as themselves. Consider the rate of Newstart and imagine trying to find three or four grand to pay for three or four assessments in a timely manner.
Please please please please please work out some way to have ASD assessment covered under Medicare?
I will also note that lack of an assessment is a drastic impediment for many ASD people because we can be very rules oriented. For my 19 year old daughter, she is utterly stumped by online university applications which ask something like “Do you have a disability or health condition for which you may need assistance?” and if you check the “yes” box, it drops down a whole form asking you to attach the documents describing and verifying your diagnosis. And she doesn’t have that, so can’t proceed with the application. And she can’t feel okay about
checking the “no” box, either, because that’s a) inaccurate and b) unhelpful for her as she will need special consideration for some aspects of study.
Autistic people without a formal diagnosis hesitate to participate in resources intended to help autistic people, because they don’t feel entitled to it without formal diagnosis.
People with an ASD who want a diagnosis, need a diagnosis. Some say it’s a “label”. I say it’s also a shield, and a licence. A shield to protect you from other labels like “lazy, thoughtless, selfish, antisocial, stupid, etc” and to protect you from, say, a cynical phys-ed teacher (and in Victoria, a mandatory phys-ed class) requiring that you must participate in ball sports with aggressive, bullying classmates, when what you really need is to spend that time practicing your occupational therapy exercises so that you might, one day, be able to even catch a ball.
It’s a licence to forgive yourself if you can’t do things as well as others. It’s a licence to stop punishing yourself by incessantly trying to learn to do trivial things that other people find simple, and cut straight to identifying a good, practical workaround. It’s a licence to do things differently if the usual way doesn’t work for you. It’s a licence not to be so down and depressed when you’re out of energy before you expected to be. It’s a licence to view other people’s struggles with compassion, because hey, if I’ve got a licence to struggle, I need to cut them some slack too. (and that can be hard for strongly rules-based autistic people).
I’m sure that people assure themselves that school systems have consideration for ASD kids in hand. From ground level, I can assure you that they really, really don’t. Because well-masked, undiagnosed autism can look very much like recalcitrance, laziness, sloppy disorganisation, antisocial behaviour - the kind of behaviour that needs to be punished. And if the punishment doesn’t work, they don’t look for deeper explanations, they double down and punish them harder lest they lose their authority in the eyes of others. It’s not how it should go, it’s stressful for the school, horrific and damaging for the ASD student, and bad for society in general. Educate educators. Screen students. Fund schools. Stop rewarding schools for filtering out low-performing students.
I’m also going to tell you about my youngest child’s need for an assessment. When she was four, I started the process of trying to get her an assessment. Last week, I got a phone call from the organisation who is supposed to be providing her with an assessment saying that the waiting list has blown out so that the very soonest she could be getting an assessment is next April. She will be eight years old. And here’s the kicker - most “Early Intervention” programs are available for children under the age of seven. And almost every Autism resource I find is heavily or solely focused on young children. They wax lyrical about how “Early Intervention is Key” … but they forget to mention that the key is made from solid 24 carat gold, and is therefore only available to families who can afford it. And that’s not my family.
See, we have lots of ASD in our household, and consequently we are a) very low income, and
b) highly likely to have children who have need of “Early Intervention”. There are supports available, we just can’t access them for our children unless we can produce a costly formal diagnosis.
The key to accessing this crucial “Early Intervention” is:
-
a thousand dollars or more
-
the executive function skills to navigate the tangled web of websites and phone calls and the referral-go-round and remembering appointments to get the child to the assessments
-
the education and perspicacity to identify that the child may need an assessment for an ASD. Which is an unrealistic expectation for too many families given the odds that children with ASDs will have parents with ASDs.
B: the prevalence of autism in Australia;
I’m just going to say that I suspect that there’s a metric f-ton more people out there with autistic traits than are being acknowledged. Male and female both. Males often get by without being identified as autistic because so many of the tasks that autistic men aren’t good at are coded as “women’s work” and society accepts that “men are just like that”. Less so as gender stereotypes are challenged and diluted over time. Being free from organising one’s own Christmas Card List isn’t a masculine trait. It’s an autistic trait.
And women? More women are finding that they are free to eschew ill-fitting feminine stereotypes. It’s no longer the primary objective to aspire to be a “good housewife”, so rather than struggle to maintain a pointless seeming Christmas Card List, they bail. They don khakis, and hat, and lumpy boots and become career geologists who bore the heck out of everyone everywhere except at geology conferences by continuously talking about rocks. It’s not a masculine trait. It’s an autistic trait.
The “increase” in autism is regarded to be some combination of increased recognition of the condition due to awareness, reduced stigma, more testing, and I believe that diminishing rigidity around gender stereotypes is also contributing.
C: misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;
Yep. Can confirm. See the tale of my 19 year old daughter who was medicated for ADHD and major depression throughout highschool, routinely suspended for having meltdowns, but was never considered to need an autism assessment.
Girls and women just fly under the radar of people who would see the same behaviours in a boy and think “Hmm, maybe that kid needs to be assessed for autism.”
Re gender bias in support services: See also my issues with being tasked with the “mental load” and “emotional labour” involved in - not just a household with children - but a household with autistic children who need access to and interaction with the NDIS. All organisations, policies and people I interface with about these issues operate under the default assumption that there is a competent adult in charge. But there’s only me. Trying to cope is progressively damaging me, making it harder to cope, and coping more damaging. I’m terrified that I will burn out entirely and not recover. If that happens, and I don’t have NDIS access, I will be invisible to the system. How many other people have the same problem? How would we even know?
Oh, and I’m fairly certain that if I were a male sole parent with three kids, and asked the same organisations for assistance, I would get more active help, and less assumptions that it’s okay to bounce tasks back to me, for me to do unassisted.
F: the interaction between services provided by the Commonwealth, state and local governments, including:
- health and mental health,
- education,
- employment,
- justice, and
- Housing; Ooh. Let me tell you about the referral-go-round. That’s where someone (counselor, GP, friend) tells me that I can access something helpful from a certain organisation, and when I call that
organisation, they tell me that they can’t help me but they can give me the number of an organisation that can. And when I call that organisation, they tell me that they can’t help me but they can give me the number of an organisation that can. And when I call that organisation, they tell me that they can’t help me but they can give me the number of an organisation that can. You get the picture.
Sometimes, I call a number I’ve been given, only to find that I’ve come full circle, and I’m speaking to the first organisation again. Because phone calls are very hard and draining for me, I may find that I have spent weeks of mental energy on a circular exploration in which every organisation has ended the call satisfied that they have genuinely helped me to address my problem - a job well done - but my problem has not even remotely been addressed. It’s kind of mind-bending when you’re having problems with anxiety, depression, or both.
More frequently than I think is reasonable, I’ve been told to call numbers that are disconnected, or to ask for practitioners who retired years ago. In fact, more than once, organisations that intend to help have sent me “helpful” lists of phone numbers that, when called, are mostly outdated: irrelevant because the number is not in use, or belong to a different organisation, or the person has, once again, moved on and become unavailable.
I really, really struggle to do the phone call thing. Something that upsets me about the assumption that everyone can “just make a phone call” is that for all my issues with it, I actually am more capable than the handful of friends or family members I know whose impairments fall so precisely in this area of communication that I make these phone calls on their behalf.
And while we talk about the blind leading the blind, what of the blind who have nobody to lead them? I’m certain they exist, but I suspect we don’t talk about them because they are dead, homeless and voiceless, or otherwise invisible to the system.
So what I’d ask for is adequate funding for organisations that are intended to help people with autism, so that they can keep their lists of phone numbers up to date, at least. And preferably, well funded enough to be of greater help than harm for people who come to them for help. Maybe if there were more funding, there’d be more people implementing the much needed logistical supports, and fewer referring them on to other organisations?
G: the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people;
I get the feeling that my autistic children are among children with below-average grades who are being encouraged out of late highschool. Maybe it’s just my children’s highschool, but due to school ranking systems, there appears to be a built in incentive for schools to handball poorly performing students on to other schools, or out of their school by any means. Vulnerable autistic children who have not responded well enough to the supports and strategies provided in a given school will be among those who are likely to have poor or inconsistent grades, and are likely to be easy to bully into having a breakdown or ceasing school attendance due to anxiety and mental health issues. Autistic teenagers who are struggling with year 11 and 12 are also more likely to be confused and distressed about the outlook after highschool, so lack firm plans to go on to higher education, apprenticeships or other pathways to a lifetime of employment. I cannot express how critical it is that autistic students who may even be excelling academically but lagging in their social development be given more time to mature - maybe an extra 2 - 4 years with some background support as a bridge past the yawning chasm of depression and unemployment that lies in their path at the end of highschool. For so many, this will be the difference between an autistic kid being an ineffective manual labourer or retail assistant who can’t keep a job, and a kid going on to successfully fill a role that they have true aptitude for.
H: the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:
i: autism understanding within the NDIS,
Can someone please send out a memo to tell NDIS staff not to assume that a person is competent in all ways just because they are articulate in a planning meeting. Do not assume that they will be able to make multiple phone calls. Do not assume that they will remember anything much from the meeting at all. Do not assume that they won’t go home and collapse in a darkened room for three days to recover from the meeting.
ii: the utility of the Early Childhood Early Intervention Pathway for autistic children,
This would probably be of help if kids could get assessed in time to participate in it. But I guess I will never know.
iii: the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings, and
iv: the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services;
I start to cry from anxiety whenever I see the NDIS logo. I wasn’t always like this, though.
Back before I applied for the NDIS five times, I used to be able to see that logo and not even balk. But after applying three times on my own account, and once each for two of my children, and dealing with deeply unmanageable amounts of conflicting information and unhelpful “advice” from an assortment of NDIS sources over the last few years, the NDIS logo causes me to cry. I don’t even have to feel sad, the tears just come out. It’s a kind of Pavlovian response, I suppose.
Two of my children have had access to the NDIS for four years, and only in the last 12 months have we been getting significant use from the supports that are funded. For the years prior to that, the lack of support coordination was a huge impediment - my eldest child needed it and didn’t have it, and my son had it, but didn’t need it.
People kept telling me that my children’s Local Area Coordinator would be sufficient. Heck, my Local Area Coordinator told me that she would be sufficient. What that meant, though, was that I was expected to coordinate the supports of my children, despite not being qualified to identify what supports were needed, or to identify what supports were available. I had no hope of putting those two things together and making good use of their funding. None. And the LAC let it ride for three years - three plan reviews, and would have let it go for another, and probably indefinitely. And every time I asked for help in locating a suitable support service, she’d handball the task back to me, essentially telling me to Google. Or googling and sending me the first page of results as an email. Or a list of phone numbers to call, none of which were for organisations that provided the support or service I needed. And she refused to ask for a specific support in my daughter’s plan Three Times, because she said that the NDIS didn’t provide that kind of support, despite it being a line item in the price guide (in the last meeting, my newly coopted advocate insisted it be asked for “just in case” and lo, it was granted in this plan).
But eventually a competent Support Coordinator recognised that I was way beyond my ability to cope, and heading for a breakdown, so she volunteered to advocate for me, and Things Changed. Now we are getting the help and support we should have had all along in dealing with the NDIS. My children finally have appropriate supports, and I’ve finally been granted NDIS access (So exciting! My planning meeting is next week). So (of course), the NDIA have cut one
of my children’s funding way back for no logical reason, and I will have to apply for more funding so he can have any hope of achieving his agreed goals.
I’d ask that, for people who have been granted access to the NDIS, funding for Support Coordination should be the default, no ifs, buts or maybes. Especially for people who have not had supports in place prior to their NDIS access.
Hooboy. This is long, but I would like to point out the mind-bending catch-22 of being an adult who just barely scrapes by in life with autism, can’t hold a job, can’t finish a course of education, anxious, depressed, a social life that’s just a desolate plain dotted with scattered dumpster fires. Not able to seek help beyond occasional exhausting counseling sessions, not able to get other help, just falling through every crack there is, all the time. Finally you notice that a few other people with conditions similar to your condition are getting actual, useful assistance from the NDIS. Heck they aren’t even as heavily impaired, so you should easily qualify, and they are getting really helpful supports - the kind of supports you can see would make a huge difference for you and your family.
And then you look at the NDIS application form, and it has assumptions that are laughable for someone in your situation: “your regular doctor” and “your regular specialist”. And… you don’t have a regular specialist. If you could afford one, you might be seeing a psychologist who is of some use. You might even have been seeing them for the two years that the NDIA indicates is required to meet their standard for providing evidence of impairment. And you might have seen them more recently than the six months which is the maximum age of the reports they want the applicant to provide. But no, the cost is beyond your means.
And while you know you can get a Mental Health Plan from a GP, the GP has to be prepared to do the plan. And as you just see whichever random doctor gets you at the walk-in clinic, they don’t always want to fill in your Mental Health Plan, so you decide to come back and play Doc-lotto again some other time. So getting a Mental Health Plan is hard.
Working out which psychologist to see is also hard, I use the “throw a dart at a phone book” technique (which is really hard on my computer monitor). It takes a few appointments to work out whether they are going to cope with you, and you them. And if you need to start afresh, it takes another few appointments, another few months, (because you want to space out your appointments and make them last the 12 months until you can get a fresh plan). And then, because you have really poor executive function as part of your autism, you miss an appointment. The psychologist might remind you, but your social anxiety causes you to forget rather than feel the horrible anguish of having missed the appointment. And then you feel pathetic that you can’t even make a phone call. So you forget.
Months later, you have a bit of a crisis and need counseling, so you pick a fresh psychologist and start again. Why, they ask, don’t you take anti-depressants? You tell them that you can’t afford the down time that it takes to adjust to an antidepressant, you can’t risk having a bad
reaction to an antidepressant (as happened with your father and late husband), and you can’t afford the loss of motivation and productivity (as happened to both siblings when they were on antidepressants). You have kids to care for, a household to run on a tiny budget. You are too crucial, too stretched, and too fragile to take the risk of anything going wrong. And you’re not actually suicidal. You’re just suffering the natural, whole wheat, 100% organic, acute on chronic stress of living, unassisted, with autism.
You’re sure there are therapies that might help, but you can’t afford them. So you live with the consequences of not having therapies or treatments. There are supports that you could use if you had the money to pay for them. So you live with the consequences of going without supports. As an articulate, intelligent, conventionally presenting person, any attempts to find anything, anyone to help you is just an exercise in finding still more cracks to fall through.
NDIS preparatory material asks prospective participants to describe their “existing supports”. There are two options - you either have existing supports because you need supports, or you don’t have existing supports because you don’t need supports. There is no checkbox denoting that you don’t have supports that you need, and as a consequence, your life is several kinds of daily hell. There is no acknowledgement anywhere in that material that a lack of reasonable and necessary supports has consequences that, until the NDIS provides those reasonable and necessary supports, prospective participants live with, and which hurt and harm us.
I’d ask that these NDIS materials be modified to include acknowledgement that “more support is needed” is even an option. It’s implicit in the very existence of the NDIS, but it is explicitly lacking in the planning material.
And things get worse. Your productive potential leaks away, day by day, as the consequences crush you to angry, depressive pulp. You need help, but there isn’t any. Because the NDIA need that paper trail. That counselor you last saw? That was years ago - too long ago to provide supporting documentation. No specialist. No “regular GP”. No decades long history of taking antidepressants. The diagnosis you have is a one-page hand-scrawled note from a decade ago under the old DSM IV, and it just states the diagnosis as “Asperger’s Disorder”. The NDIS want a four or five page report with an autism severity rating of 1, 2, or 3. But that’s going to cost over a grand, and … I have kids who also need assessments. If I had a grand to spend on an assessment, it’d be used for one of my kids.
Hilariously, I’ve had NDIS employees tell me when I’ve said that I can’t get access because I need more assessments, that “of course if you need assessments, the NDIS will fund them once you gain access”. I think they thought they were being encouraging, but it fair broke my brain.
I understand that the NDIA began a pilot program of Independent Assessments to assist people to get assessments and reports to use when applying for the NDIS, but it was subsumed by the Covid 19 response. It is still needed. And if anyone asks, no, Carer Respite services isn’t
providing funding for assessments, because according to them, the NDIA are doing that now. (no they are not)
A note about the impacts of the assessment process: in order to obtain a psychological report for an NDIS application, it is necessary to see a psychologist, psychiatrist, clinical psychologist (or similar) for multiple sessions of assessment. This process requires that we expose our weaknesses, probe our unhealed psychological traumas, and examine our impairments in the cold, hard light of day. This in itself is traumatic, and can be damaging and hard to recover from.
I assume that we know that autistic people, especially autistic women, “mask” in order to avoid negative attention in public. We “act normal” in order to assure other people that we are not a threat, and not a potential victim. However, we also “mask” for ourselves - internally masking so that we can assure ourselves that we are okay. It’s not so bad. We will get through this, because we have ways of coping, and we always get through this. (even if we don’t, we pretend we do) Because looking at ourselves objectively can be depressing, confronting, upsetting definitely unpleasant. We mask for our own benefit, in much the same way that everyone manages to ignore normal existential angst.
But getting a psychological assessment strips away the carefully constructed and maintained mask that we rely on for emotional stability, confidence, and self-soothing leaves us in a pretty tragic state. I don’t know anyone who has submitted an NDIS application for an ASD who wasn’t shaken to the core by the exposition of their flaws, frailties, weaknesses, f… stuff-ups, and related traumas. Things we’ve live with and which we’ve put away where we don’t look at them, we’ve invested a lifetime of effort in avoiding acknowledging exactly how broken we are, but to access the NDIS, all that psychological wound dressing and prosthetic cover has to be stripped away. In my experience, the “normal” response for ASD people is to experience a depressive response, of significant depth and duration.
We only put ourselves through this because we need that report so that we can qualify for the NDIS and get the help that we need. And with that help, hopefully we will be able to reconstruct that comforting mask, because even with NDIS supports, we will still need it.
I would like the NDIA to be aware of what they are asking of applicants when they request “more documentation” of our condition. They are asking us to re-traumatise ourselves. Perhaps there are subtler, less damaging ways to gain the same information?
Furthermore, please consider the people who go through the assessment process and are declined access. They are not okay. People don’t apply for NDIS access for fun. They are people who believe they require supports from the NDIS, and who have gone to (sometimes extreme) expense and effort to apply. Declining access to the NDIS does not make their disabilities go away. And it certainly doesn’t help them to recover from the soul-baring introspection and reality-checking done in preparing an application. I suggest that checking in on people who have “failed to meet access” be implemented, or if it exists, beefed up somehow.
The people who applied for NDIS access and didn’t get it, in the absence of needed supports, will just keep on deteriorating (like I have) until their condition is severe enough that they will qualify on some grounds or other. It’d be more cost effective to give them access sooner when they can be maintained, rather than later when they need a complete overhaul and may never be as well as they were when they first applied.
If an application fails on a technicality, it should not be on the disabled applicant to chase that up alone.
Oh, and please fund disability advocates - they are scarce and overwhelmed. The notion that they would help me with an appeal of my NDIS rejection was illusory. They just didn’t have the staff to cover it. I get the feeling that disability advocacy partly still exists to salve the consciences of people who never expect to need a disability advocate.
i: the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;
J: the adequacy of funding for research into autism;
Tangential, but I’m going to bung this in here anyway: We all know about hyper-focus in autistic people. I don’t hear anyone talking about hypo-focus. If focus is like two magnets, we can describe hyper-focus as having the opposite polar ends (which attract each other) stuck together. It’s natural for the magnets to cling together that way, and difficult to pull them apart. They “want” to stick back together at every opportunity. Hypo-focus is like trying to force the opposing ends of the magnets together - they resist, they push apart, and if released they whiz away from each other to absolutely anywhere else they can be. It takes a lot of effort to push them together, and it has to be sustained the entire time the magnets are in contact, and the slightest disruption loses that contact.
I’m wildly guessing that in this analogy, people who aren’t autistic or who don’t hyperfocus are less powerful magnets - they can engage in things they are interested in, and tear themselves away reasonably readily. With a bit more effort, they can engage with things they are not that interested in, and disengage with a mild sense of relief. In this analogy, autistic people are super-strong magnets. We are lauded for our ability to hyperfocus, but some respect for the effort it takes to engage with topics we are hypofocused on would be helpful, especially with children who are in learning environments where the inexpressibly huge effort required to focus can so easily lead to unwarranted punishments instead of encouragement and reward for the
attempt, however brief. I will also note that forced focus can sometimes lead to a topic becoming a special interest, and with a quick polarity flip, a topic of hyperfocus. Not always, but sometimes the effort pays off just like that. Gently gently, though.
I want people who deal with policy and strategies around autism to be aware that hypofocus is part of autism which might explain a number of autistic issues. Reluctance or inability to engage or stay engaged with certain tasks or topics isn’t just wilfulness any more than getting deeply absorbed in a book is wilfulness. People seem to understand the case where someone is deeply absorbed in reading a book, but not the opposite - struggling to even look at the book. It takes a huge amount of sustained effort to focus on something that has the wrong “polarity” for you. I believe there is some merit in working out what repels different people, as well as what attracts them. There might be some useful pattern to be found.
K: the social inclusion and participation of autistic people within the economy and community;
Please establish multiple and timely means to identify autistic people. Please spend some time and effort educating the public about autism in adults (ie: it’s not just a sad, tragic, please-donate-to-our-charity thing that happens to children). Help to diminish the stigma. Please spend less time trying to force autistic people to do things we can’t do, and more time assisting us to do the things we are particularly good at and interested in.
It’s not only about reducing our suffering, but about gleaning the unique potential that our differences enable.
L: the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities;
I suspect that a whole lot of the people who are involved in this kind of policy wonkage are already representing the autistic community, even if they aren’t aware of or diagnosed with the
condition. There are so many gifted autistic people that without the insights of at least a significant number of them, a venture to represent their interests would be folly.
M: any bill that relates to matters within the scope of this inquiry that is referred to this committee; and
I want to mention that back when my children and I applied for the NDIS, it seemed quite straight forward. Now the form is even online. It’s basic: the usual name, address, age and other details, a few questions about basic eligibility, then “your usual GP or specialist” can fill in the details of your disability; what sort, how it impacts your life etc. Or you can attach a suitable specialist report that has that detail in it. Degree of difficulty: Centrelink form.
The second time I applied, I’d been advised that I needed a report from an appropriate specialist, like an Occupational Therapist or a psychologist. So I used all my savings and saw an Occupational Therapy Psychologist for long enough that he was comfortable to write some reports which I could use to apply for the NDIS. My application was declined, despite it being obvious that I do meet the benchmark of “has a disability that impairs my ability to participate economically or socially”. Even Centrelink (who I sometimes feel would exhume dead people and send them to the job network office if they had to pay them benefits) has acknowledged that I am not able to work many hours. And if I can’t hold a job by that stringent definition, who is the NDIS to say that my disability does not impair my ability to participate economically in our society?? But they did. Degree of difficulty: A really hard team university assignment where the other people in the team are as flaky as really good filo pastry.
So I wept all over some disability advocates - the only ones who said they could take me on were VIMIAC mental health advocacy people, and they pointed out that the NDIS seemed to have developed an allergy to people with autism, and advised that I apply again with psychosocial impairment as my primary disability. On reflection I realise that my deteriorating mental health as a result of striving for NDIS access, and dealing with the NDIS actually had overtaken my autism as the major impairing factor in my life. It had worn me down to a gibbering wreck. So I eventually got a mental health plan, found a clinical psychologist and … started over. After some months, but less than the two years of seeing a specialist that the NDIS states is it’s standard, my psychologist sent me a report to submit with my application. I found that a doctor I’d seen a couple of years ago was back at work after maternity leave - she was nice, and doing telehealth consultations. I provided her with copies of all my reports and documents, and she wrote me a “letter of support”. None of these new documents looked very compelling to me, and I did not expect to gain access to the NDIS, but it felt like I was amassing evidence for a murder defence. I took part in a three-part online seminar with AMAZE about applying for the NDIS as an adult with autism. They advised me that I’d be best to get a complete autism reassessment from scratch to fulfil the NDIS requirement for a “functioning level”. I’m sure that would have worked if I could afford and access such a thing, but it’s not affordable, and not
accessible. Especially now that Covid 19 has reduced the availability of the very few specialists who will assess an adult for autism.
I consulted AMAZE to ask whether I needed to submit yet another form (which I’d discovered on the NDIS website at the last minute) and they told me, no, that’s for a “second wave of documentation after your initial application”. I was gobsmacked and panicking a bit - what had happened to the simple “Fill in this centrelink form and attach your specialist report” thing?
Why is the process so hard? Has it gotten harder? Professionals in the field say that it’s less easy, if only in that there is so much conflicting information out there now. And especially difficult for people with autism. I would be fascinated to know what the rate of acceptance/rejection of NDIS applications from people whose primary disability is autism looks like over time. Has it changed? Has it … maybe, diminished in the last year or so? Are adults with autism being bounced by the NDIS for the sake of caps and limits, or on the merits of their applications?
N: any other related matters.