Autism diagnosis and support needs impacted by proposed bill (Participant experience) | External submission

Submission 2806

I am an NDIS participant. I spend a lot of time in community with other disabled people and advocates, and have done work in the sector.

My experience, that of my friends, people I talk to in community, and what I’m seeing from other advocates online, all tell me that this process is not accessible. This submission does not cover all I want to say, or all that needs to be said. It’s taken a good deal of support from other disabled people (who are already at their limit) for me to be able to put together what I have. My friends who are at even greater risk from this bill and the associated cuts have not had capacity or support to have their voices heard. Disabled people have not been given enough time to understand or provide feedback on changes that will leave many of us without support, and dramatically harm others’ quality of life.

The NDIS changes are not all about autism, but Autistic people have been so centred in the discourse, and our needs are routinely misrepresented and misunderstood, so that is what I’ll focus on here. I know there are people who believe that the NDIS wasn’t built for us, and that we’re not disabled enough to deserve the support. Frankly, this demonstrates a lack of understanding: both of what autism is, and of the intersectional nature of disability.

I have level two autism, and people don’t understand my support needs. I’m disappointed that it needs to be said, but autism is a very real and signiﬁcant disability. Support needs show up differently in each Autistic person, which means our care cannot be standardised. Autism also has a high rate of co-occurrence with other disabilities. I’ve spoken to a disturbing number of physically disabled Autistic people who already can’t get their essential mobility aids funded; I hate to think how much worse things will get if this bill proceeds.

Compared to many in the Autistic community, I’m relatively well placed to advocate for my needs because:

I’ve had the opportunity to make sense of my disability, and have been unpacking my support needs and my ableism over many years (many of those advocating for our community are still working through this, and they often aren’t ready to admit to more stigmatised support needs, particularly those that could impact on their social standing or perceived employability)
I’ve spent a lot of time in community, and intentionally seeking diverse voices and experiences (who are often excluded from advocacy spaces and processes like this)
I have the advantage of a tertiary education (and the analytical skills and language that come with that)
I trained as a psychologist, including brieﬂy facilitating a social skills program for neurodivergent kids (which I reﬂect on with complex feelings now that I understand more about autism and the severe harms that masking and ABA therapy cause so many in our community)
I used to work for an autism peak, doing work relating to access, inclusion and evidence All of this to say, I know a lot about autism. I know a lot about my needs (though I learn more all the time). I have the language, and sometimes the energy and conﬁdence to advocate for my needs. Thanks to layers of privilege, I’m more likely than others to be listened to and yet, so often I am not heard.

Submission 2806

I am constantly astonished at how the people and professionals who should understand my needs seem unable to. I have to educate my doctor about autism. I have to educate my psychologist about autism. I have to educate my support workers, and support coordinators about autism. I have to educate everyone in my life about both autism and my needs, but many still ﬁrmly believe that they know better. There are so many misconceptions about autism and Autistic people. People so often think that we’re just being fussy or don’t believe us when we raise access issues or individual support needs. Many doubt that we’re disabled at all, because they can’t see it.

I believe this is partly because our access needs are often other people’s “access conveniences”; non-disabled people, or those with lower support needs are often bothered by the same things that I am… but what might seem an irritation to one person, can be an access barrier that prevents my participation entirely.

Confusion can also stem from Autistics being able to do certain things sometimes. Sometimes I can manage, but it’s always at a cost. My whole life is spent pushing through barriers, and layers of discomfort. Imagine going through your life with a constant buzzing in your ears and rocks in your shoes: the more discomfort and demands that get stacked on top, the harder it becomes to do anything. It’s exhausting. It makes each individual task harder, and sometimes impossible. The cumulative load means I often get to the end of my days unable to sustain a conversation, or even to access my kitchen to make food (and meal prep has been taken out of my NDIS plan). Sometimes that’s how I start my days too.

I’m now too disabled to work, and like many disabled people, I live below the poverty line. I share my house with three other people. Two of them work with neurodivergent people. You might assume that a neuropsychologist and a teacher/ aide to Autistic kids would be a good ﬁt. I did. Unfortunately, I’ve discovered that these disability professionals are unable to grasp basic concepts like sensory sensitivities, executive functioning challenges, or variable capacity. Since my energy levels and capacity often keep me at home while they’re busy working long hours, they expect that I should take care of the bulk of the housework and administrative tasks that are fundamentally inaccessible to me.

My time, my life, and my needs are seen as less important. On the infrequent occasions that I raise my access/ support needs, I am treated as if I’m simply being difficult or weird. It’s outrageous that people with such ableist views and total lack of understanding are employed to “support” disabled people, and yet these are the attitudes that I’m met with in all areas of life. I worry these attitudes are also embedded in this bill and in disability reforms more generally.

I don’t feel safe in my home, and with the ongoing housing and cost of living crisis I’m afraid I won’t be able to ﬁnd anything better. I keep hearing stories of real estate agents rejecting applications even for people trying to sign onto existing share-houses: simply because they’re on Centrelink payments. People I know are experiencing, or on the brink of, homelessness. I’m lucky that I have a good support worker who can help me with the planning, packing and details of ﬁnding and moving to a new home. Without their help I would be at incredibly high risk. I’m still at high risk. Reduced funding for social and community participation/ reducing my access to support work would place me in a very scary situation.

Submission 2806

I’m also deeply concerned about the potential of NDIS participants being cut off for being deemed “non-contactable”. Phone calls in particular are often a struggle (or completely impossible) for me because of my disability. During periods of high demand or low capacity I can stop being able to effectively process and communicate information. Sometimes I am unable to speak. Sometimes I am unable to string my thoughts together cohesively, even via text. And I need processing time. I have several other friends on the NDIS who are ﬂooded with panic whenever their phones ring. I keep hearing from both my friends and others online that the NDIA routinely ignores their communication access needs (even those listed in their systems e.g. calling when email is the stated preference, even if that person happens to be Deaf). This proposal seems likely to remove people’s supports at the times when they are most needed.

Additionally, the proposed three hour interview is an inaccessible concept. Three hours is simply too long for many of us to focus, and while I have heard that there will be options to split the meetings up, this would rely on participants both recognising that need and feeling conﬁdent enough to ask. There are a host of reasons why people may be unable to do this, including common difficulties with monitoring the internal cues needed to recognise when energy and attention are ﬂagging (at which point it also becomes harder to self advocate). Additionally, many of us need processing time, and the ability to add important information when we think of it later.

People don’t often discuss how understanding (and advocating for) your access needs is not innate. When I joined the NDIS I thought that I’d meet professionals who knew how to “ﬁx me”, while they expected me to know how I was different and how their speciﬁc (and unexplained) expertise could support me. Nobody automatically knows what they need: it takes a lot of time, exploration, and support to understand that. Many of us experience a huge amount of shame too, which means that many people underestimate their support needs, and if they do recognise the challenges in their lives they often attribute those to personal moral failings and laziness. Even for people who do recognise their support needs, there is a huge difference between knowing and being able to voice them to someone else. It is therefore not reasonable to expect people (especially those with a new diagnosis) to accurately report on their support needs during the proposed interview process. There must be scope for our health teams to feed into the process.

Narrowing deﬁnitions of functional capacity seem likely to ignore that many of us have ﬂuctuating conditions and limited capacity which necessitates energy accounting e.g. a person may technically be able to do all the individual activities of daily living unassisted… but only individually. Removing support for one thing could prevent them from doing another. This means that instead of being able to work and have some measure of independence, many people will use up all their energy trying to meet their basic needs, while others will use their all and still not manage to meet their essential basic needs. This is a huge, looming fear, and I have heard people in my networks mention discussions of assisted suicide if this goes ahead.

The context of these changes is important too: not just the housing and cost of living crisis, or the growing normalisation of ableism and bigotry. The disability community has been getting pummelled for the last few years, with constant changes and calls for consultation that have not been accessible to those whose perspectives are most needed. The disability sector keeps having funding slashed while workloads increase exponentially. Consultations for Foundational Supports happened while the community was reeling from the devastatingly lacklustre

Submission 2806

response to the Disability Royal Commission, and before anyone knew what the changes to the NDIS would look like. We still don’t really know. So how could we be expected to suggest what should ﬁll the gaps left behind?

For the Autistic community: although there were some fantastic people working on the National Autism Strategy, and the Roadmap, they clearly weren’t resourced to make the accessible resources or to build the relationships necessary to enable representative consultation. The majority of Autistic people in the community were not aware of the consultation and feedback processes happening. Some of the most vulnerable members of the community, and the most important perspectives were not able to be included. The support wasn’t there. The ongoing changes across the disability sector seem largely to be ignoring what’s laid out in those documents; but assuming that they will genuinely be used to guide what Foundational Supports are rolled out for Autistic people in future, I have to question how they can support the needs of the community who have not been consulted. This brings me back to the ongoing need for supports from the NDIS that are guided by the needs of the individual and the guidance of our health teams.

Autistic people have incredibly diverse needs, which necessitate individualised supports. But it is common knowledge that most Autistic people need:

extra support with change and transitions
clear and explicit communication
processing time Currently these needs are being ignored en masse. Even with the brief extension, the feedback period for The Bill has been insufficient and, though I understand there are now easy read versions ﬂoating around, the folks who needed those were given even less time to process and respond to the information.

Not supporting the needs of the Autistic community through changes to the NDIS is discrimination, and will cause harm to many more people than the 40% of participants with NDIS support for their autism. This conversation should not be about money; it should be about human needs and dignity. However, since cost has been so heavily centred in the dialogue, let’s not forget that, despite the volume of Autistic people who have demonstrated need for NDIS supports, we only make up 21.4% of spending.

Regardless of the government’s intent, public perception is that Autistic people are being targeted for removal from the NDIS. There is no clarity about what Foundational Supports might replace them. What is known about Thriving Kids is regarded by many Autistic people as alarming and there are signiﬁcant fears that the program will cause harm to the children who participate in it.

I am terriﬁed for my community. I’m scared that we will lose our supports. I’m scared for all the Autistics who won’t be able to sustain their employment when supports are removed, and for the ones who won’t be able to sustain their living situations. I’m scared for all the Autistic people who will become homeless, or become increasingly dependent on partners (noting that Autistic women are already at signiﬁcantly higher risks of experiencing sexual assault and intimate partner violence). I’m scared that a generation of Autistic kids will be taught even more shame than society already jams down our throats for experiencing and existing in the world

Submission 2806

differently. Even if none of those fears come to pass, I am afraid that the stress of not knowing, and of the horriﬁcally ableist discourse will lead to loss of life.

Every Autistic person that I speak to is afraid. Those who need supports that they can’t access are deciding there’s no point even trying because of what they hear about the NDIS from community and the media. Many of those who are NDIS participants are checking out; they are too distressed to listen to the news, to try to understand what these changes are, let alone to write submissions.

I feel like I’ve been metaphorically talking people off ledges for months, but they’re close to the edge. It’s also well known that Autistic people have signiﬁcantly higher rates of suicide than the general population; the way these changes are happening will only fuel that. More care must be taken. The Bill should be withdrawn and redesigned in genuine partnership with disabled people and our representative organisations, consistent with the principle of “nothing about us without us”.