Let’s look at the Draft National Autism Strategy

So it was Autism whatever day yesterday, so the government got to announce what they’re gonna try to do to make sure there’s no immediate Autistic Uprising. One of those things in Australia was announcing the Draft National Autism Strategy, which I’m going to read through and react to here.

Before I read it, what do I want?

  1. Timely, affordable assessment and diagnosis of Autism and related conditions like ADHD. Ultimately free to the person being assessed, paid for by the government in full, not by crowdfunding. Preferably without an upfront cost that needs to be claimed back. I ‘member the olden days (early 2000s) when kids could get assessed and diagnosed free, and sometimes even adults could.
  2. Support for teachers and schools to include Autistic kids how they need to be included to learn. The feds will palm this off to the states, but schools need to be supported to include all kids in their local schools. They should be provided with the staffing and physical resources needed – space, suitable classrooms, flexibility in policies around attendance and “discipline”.
  3. Family support. Why is everything such a struggle? Recognition that Autistic kids probably have Autistic/ADHD parents and siblings. Whole family approaches to providing supports and funding, not making it a fight for everything, trusting that people know what help they need, but also presenting them with options if they’re not sure where to start – NDIS is too gatekeepy with new families having to ask for specific things that they need but don’t know exists or that they’re allowed to use their funding on. I miss the early intervention social workers I worked with in Canberra who knew every support available and how to get families into these.
  4. Mental health supports across all ages. Basically unlimited psychological supports that people can move in and out of as needed and not just when there’s a crisis. Suitable crisis care – crisis care that actually acknowledges Autism provides guidance on how to get support for that as an underlying thing, rather than just treating the apparently borderline personality disorder, eating disorder, suicide attempt or addiction.
  5. Support to get financial security. Money to start businesses because we’ve probably got good ideas, support to learn how to do the business parts so those ideas can be sustainable. Mentorship – whether in large and small workplaces or in our own ventures. Requirements for government agencies and businesses to understand us and accommodate our needs, and that that is different for each person. You think we’re the rigid ones? We just tend to know after awhile what works for us. Of course I’m gonna say welfare payments above the poverty line, because things don’t always work out and a true financial safety net means not starting from scratch if we go into burnout or have a mental health crisis.

That’ll do for now. *saves draft* let’s look at this thing. Commitments The commitments relate to areas of Australian Government responsibility. Feedback from the community on issues relating to states and territories has been shared with state and territory governments. In any areas of joint responsibility between the Commonwealth and state and territory governments, the Strategy will guide the Australian Government’s engagement with jurisdictions. Social Inclusion 1. Improve understanding of, and change attitudes towards, Autistic people across all of society, through: a. Greater public education and awareness including a better understanding of autism within workplaces, and with a focus on health, education and the criminal justice system. b. Increasing visibility and representation of Autistic people in the media, sports and the arts. c. Increasing accessible and sensory-friendly public and online spaces. d. Increasing the capability of advocates and advocacy organisations to challenge and reduce stigma of autism. 2. Increase opportunities for social connections and peer support. 3. Improve Australian Government service delivery, communication, and information to meet the needs of Autistic people. 4. Ensure consideration of the needs of Autistic people in future amendments to or reviews of the Disability Discrimination Act 1992 (Cth) and associated disability standards. 5. Improve the safety and welfare of Autistic people through the reduction of all forms of discrimination, violence, abuse, bullying, vilification and exploitation.

Of course it starts with reminding us it’s only about what the Commonwealth government wants to do and that while they’re gonna put more responsibilities back on the states, they won’t make them do particular things in return for funding and good luck to you.

Social Inclusion: Ooh good it includes the criminal justice system as needing to better understand Autism. Obviously we want help before that stage in education and school.

Visibility in media – so more characters on tv, or actually autistic actors or exploitative ABC reality shows? I’m curious about how that one about the ACCR autistic journalism cadets is panning out :/

Sensory friendly spaces – I SWEAR the Services NSW has their radio up  deliberately loud outside the quiet hours. Can we just ban commercial radio in public settings? And have Coles radio on low enough that it isn’t painful? more benches in quiet places where I can sit with my shopping til it’s bearable to go back.

Capacity building for advocates – um, fund advocacy organizations, an not just the ones who tell you what you want to hear? And not just around stigma, but about supporting people to access your services, get your funding for therapy, fight your tribunals. And fund legal aid.

Connections and peer support – how we want it, give us the money to run lego and minecraft and flower arranging and train spotting and and anything groups, don’t give it to neurotypicals to babysit us. Train Autistic audits to support younger Autistics and run peer support.

Legal stuff – enforce the antidiscrimination laws we already have, actually penalise people and businesses if they break those laws. Stop letting them please financial hardship – start with government agencies hey?Economic Inclusion 6. Increase meaningful employment opportunities (including business ownership, self-employment, entrepreneurship and social enterprise) for Autistic people. 7. Support employers to hire and retain Autistic employees through improving the accessibility of recruitment processes and fostering workplace environments that are safe and inclusive for all Autistic people. 8. Improve the supports and services available to Autistic people to ensure they have choice and control over their education and careers. 9. Increase representation of Autistic people in senior and board positions to promote people as visible role models. 10. Improve inclusive practices and the quality and accessibility of advocacy resources for Autistic students across all education settings, and their families, carers and support networks. 11. Build on commitment 5 Improve the safety and welfare of Autistic people through the reduction of all forms of discrimination, violence, abuse, bullying, vilification and exploitation to specifically focus on Autistic students in all levels of education.

Economic Inclusion: All great ideas. But they all need enforcement when they are legal requirements. ACAB, but perhaps an Autistic-led way of enforcing the antidiscrimination laws and educational requirements and so forth? They also just need to give us more money and trust that we generally know what we wanna do with it. Welfare above the poverty line as a true safety net. The right to housing. The right to education. Human rights.

The first one about supporting Autistic people to have their own businesses. It needs to go further than a year of the NEIS Centrelink solo business program that doesn’t actually give you any money to start your business. Grants for Autistic people to start businesses, to employ others. Sometimes we just need to be supported to include each other.

iagnosis, Services and Supports 12. Consider the use and consistency of current identification screening, outcome and diagnostic tools. Work with relevant professional bodies to develop a set of standardised co-designed training/professional development and resource materials to support professionals involved in the identification, assessment and diagnosis of autism to improve the experience, and quality of this process for Autistic people and their families and carers. 13. Develop a set of best practice resources to support Autistic people and their families, carers and support networks through the identification, assessment and diagnosis process. 14. Explore ways to improve access to primary care, including through the Medicare Benefits Schedule (MBS), to: a. improve quality health and mental health services for Autistic people, with a focus on continuity of care, and b. explore ways to make Autism diagnosis and assessment processes more timely and accessible. 15. Consider early screening and identification arrangements, and improved access to health professionals.* * Consideration is to be given to how this commitment links with joint work being undertaken by the Australian and state and territory governments as part of Australia’s Disability Strategy 2021-31 and in response to the Independent Review of the NDIS. Details on work to meet this commitment will be developed in Action Plan/s. 16. Improve access to quality, timely, neurodiversity-affirming and equitable supports and services for Autistic people, including for people living in rural, regional and remote areas. 17. Encourage greater representation of people with lived experience in delivering supports and services to Autistic people. 18. Develop a set of best practice training and resource materials for people providing services and supports to Autistic people. 19. Explore the feasibility of a decision-making tool to empower Autistic people to make informed decisions about all areas of their life. 20. Work with states and territories to improve service integration between the NDIS, foundational supports and mainstream services.

Diagnosis, Services and Supports: Make Autism assessment free somehow – whether through brining back the government assessment teams or directly funding assessment by private providers through bulk-billing Medicare items at adequate rates that mean the providers can provide them on demand. Rebated Medicare items lead to people who can’t front the money missing out, and guess what, Autistic people and their families don’t have the cash lying around.

There’s a LOT of resources out there on what is best practice. Scrap funding for ABA. Funding for services beyond the capital cities and major centres is still lacking and a constant difficulty for all disability and health services – more funding through the education services might be a way to reach out to more places, trained teachers in mainstream early childhood settings and schools who can liaise with “specialist” supports and know where to get support.

“Greater representation” of Autistic people / lived experience – this needs to go back to workplaces and training programs being safe for Autistic people and accommodating, they need to accommodate us at the undergrad level of teaching, speech pathology, occupational therapy university programs. It needs to be okay to be neurodivergent in University and TAFE. It needs to be safe to disclose at those places or in workplaces and to have bad days as a therapist. Mask on or off, we need to be supported.

Supported decision making support is lacking across the NDIS. People are being blamed for their providers taking advantage of them where they should have been supported to make their own decisions around support and purchases that affect their lives.

Governance 21. Develop a governance framework to support: a. strong accountability mechanisms, b. co-leadership and active involvement of Autistic people, as well as parents and carers, and professionals within the autism sector, and c. whole-of-government, cross-sectoral and coordinated approaches to implementationResearch
22. Explore how autism research can best be fostered and applied to policy and service delivery and
underpinned by the Strategy’s Guiding Principles.
Evidence
23. Develop a National Autism Strategy Evidence Framework, including a Theory of Change,
Program Logic, Outcomes Framework, and Evaluation Framework.
Evaluation and Reporting
24. Develop a robust Evaluation Plan and reporting mechanism, co-led by Autistic people and the
autism community, for the National Autism Strateg

Governance, Research, Evidence, Evaluation and Reporting: OMG ACCOUNTABILITY. Please stop saying you’re going to fix something, ask opinions on things, consult with people and then never follow up, or hold yourselves accountable. Closing the Gap, for example. It’s just a report each year on how much worse things are getting for most First Nations people, rather than a review that you act on to change what you’re doing.

You’ve on page 8 “Nothing about us, without us”. You know that means more than just consulting? It means actually implementing our ideas and not saying that you can’t because it’s too hard or expensive for the neurotypical and non-disabled people. I need to look at who you have on these committees but I trust in the Autistic members to unmask and tell it like it is. You may be uncomfortable, but when the Autistic people who can’t speak up for themselves are still being abused and neglected and the systems are upholding the abusers rights through funding them or listening to them over us, we get angry and you’ve given us a chance to fix that, so you’d better change things.

It’s not a completely terrible read, so read the plan if you’ve time, but again if they don’t follow through with action and funding why bother?

Listen to us, give us money to do the things we need to do to live, fund our supports, teach us how to identify our needs, trust us.

Spoiler alert: My GP didn’t go back to bulk-billing

Like, I wasn’t actually EXPECTING them to go back to bulk-billing pensioners, other concession card holder and children despite Labor members spouting on about the triple bulk billing incentive and how they were saving medicare and bulk billing and helping disabled people in this cost of living crisis. Or wait, they didn’t actually say disabled people, they only talk about us when it’s about us being all diagnosed with Autism and getting on the NDIS. 

So, I am again just before pension day with less than $20 to my name, because I had to hand over $69 this morning for my GP. Who is unfortunately moving to Queensland next year. Like, this might be a chance to attempt to find a bulk billing doctor near my new place, but ugh, I hate trying to suss out new doctors and feel like they actually want me there. 

We’ve been super stressed here with the move to, I was worried I was gonna take too long with the doctor today and have to pay for a level C consult, but fortunately we realised he could only give me my scripts, reassure me that things will be easier after the mood, and tell me it’s okay to take a little more Quetiapine til the move’s done since I’m so agitated.

I just wish it was all easier. And cheaper hey?

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Growing up Neurodivergent in Newy

So, Black Inc Books went and pathologised Autism and related conditions and tried to uphold the medical model and delegitimise self-diagnosis in a world where diagnosis costs thousands of dollars and the trauma of reliving your childhood to get a label you already identify with so you can access NDIS and DSP and other supports. But go off. Click through to Twitter if you want to know how well that went with the Actually Autistic Aussie community there. Apparently they’re owned by a Zionist anyway, so whatever.

I’ve had a huge week, two days at the Sydney World Pride Human rights conference and my Nanna’s funeral and just surviving in between. I’m tired, probably sick, but always up for a rant.

The conference was amazing, 1800 delegates from around the world coming together to reaffirm the fight for our human rights as LGBTQIA+ people and wondering beings. The first session started late, about 45 minutes, which had me cranky since I’d been up since 4.30am to get there. They also had lunch scheduled in for times like 1.45pm…. I know it’s only 15 minutes later, but I feel like lunch should never start later than 1.30pm, Preferably no later than 1,

There were cookies. Many cookies. I feel like I need to learn more about Intersex people and the issues that affect them, and also about how gender is described in Indigenous populations and I need to step back more as a cis white woman and stfu. We need to decolonise at every stage, We need to look at who is not in the room and see how we can bring them in. I was there on an “affordability” ticket that I had to apply to get based on being a concession card holder. It was still $120, so well out of reach for most people I know living on welfare in this country, I put it on Zippay, so it’ll be paid off at some point. There was a panel on economic inclusion which talked about offering training to people to start their own businesses, but it all came down to there needing to be capital, start up funding and grants and microloans. Queer people will continue to need to crowdfund to get their dreams.

There was a roundtable on Thursday about Autistic and Queer identities but I had to miss that for my Nanna’s funeral. It was probably for the best I didn’t travel to Sydney three days in a row, anyway. I got to nap on the trips down which was helpful. I wish the coffee stations were open before the first session! But I guess they want everyone to buy from their cafe. The funeral was fine. I got impatient with an old lady who was asking my father where some other relative was living and I’m lady talk to us at the wake, not right now right after the service. I may not get along great with my father but I’m protective of him. Rah. It’s like when my Aunt died and someone was going off on him on the phone about something and I made my mother take the phone and tell them to kindly leave him the fuck alone.

I look at my family I’ve come from and the one that’s developing. I have queer and neurdiverse niblings on my side and Bruce’s, who’ve come out into this world and what it offers and threatens. I’m here to help them how I can to protect them and celebrate them. I’m going to become a step-grandmother this year, which I’m aiming to embrace and celebrate.

I’ll leave you with two book recommendations of amazing neurodivergent women. First is Anna Spargo-Ryan’s A kind of magic and second Amy Thunig’s Tell Me Again. Two women of around my age growing up in Australia with brilliant minds but fighting their own and their family’s demons around mental health and addiction. So much from both books resonated with me. You never know what people are going through.

I’m two years sober from alcohol. And I’ve done two months straight daily Japanese practice. I like numbers.

Borderline Personality Disorder (BPD) Awareness Week 2022 – See the person

Hey, it me!

Let me preface this post with I’m not an expert on anything other than myself and I’m still learning bout her too. This is not medical advice and I’m sure you can argue against any of my points, but this is how I currently see the fun world that is having Borderline Personality Disorder and it will likely change again over time, come back to this post for next year’s BPD awareness week and shudder at my naivety!

See the person is the theme for this year’s BPD Awareness Week here in Australia.

People living with borderline personality disorder (BPD) often find that their diagnosis is the first and only thing other people see. The 2022 BPD Awareness Week campaign encourages everyone to see the person alongside their BPD diagnosis, symptoms and survival actions. We’re all complete and unique individuals, each with our own strengths and challenges.

The growing body of mental health knowledge recognises the diversity of life experiences: the role genetics can play, experiences of gender identity, sexual orientation, neurodiversity or trauma can all contribute to our well-being. It’s a universal experience to be assigned various labels throughout our lifetime – and many people living with a BPD diagnosis experience stigma. We all share the fundamental need to be treated with respect and dignity, free from stigma and discrimination.

This year’s message reminds us to look at the person alongside the labels, ask what their experiences are and how they continue to make sense of the world. For carers, family, friends, supporters and clinicians it’s a reminder that underneath negative or harmful coping behaviours a person can often be struggling. Let’s celebrate the person they are alongside their diagnosis, acknowledging their strengths, resilience and courage in order to SEE THE PERSON !

This campaign is informative and educational, having been co-designed and co-produced by the strong voices of people with lived experience to promote recovery, positivity and hope.

So, what is Borderline Personality Disorder?

Borderline Personality Disorder (BPD) is a complex mental disorder that is often misunderstood. People with this disorder are frequently discriminated against and stigmatised.Symptoms for people with this disorder may include emotional distress, self-harm, difficulty relating to others and the world around them. This can be very distressing for the person and for people close to them.Currently between 2% and 5% of Australians are affected by BPD at some stage in their lives. The symptoms of the disorder usually first appear in mid to late teens or in early adulthood, with women three times more likely to be diagnosed with BPD than men.The causes of BPD are not fully understood. They are likely to involve biological, social and/or environmental factors. For some people these factors may relate to childhood experiences of trauma or neglect.Contrary to common belief, people with BPD can recover! With early diagnosis, appropriate treatment and support the prognosis for people with BPD is positive.Having BPD is not deliberate; it is a disorder people do not choose to have. People can recover!”

Well, you can get a diagnosis of BPD when you meet 5 of the 9 diagnostic criteria.

  • frantic efforts to avoid real or imaginary abandonment
  • consistently intense and unstable relationships with other people, alternating between idealising them and devaluing them
  • persistently distorted self-image or sense of self
  • at least 2 impulsive behaviours that are potentially self-damaging
  • ongoing self-harming behaviour, suicidal behaviour or threats
  • intense feelings lasting hours to days
  • long-term, chronic feelings of emptiness
  • difficulty controlling intense and inappropriate anger
  • feeling disconnected from reality, or having paranoid thoughts

It doesn’t matter which ones, and the ones you meet can change over time, and you can have only 4 and technically not “have BPD” but still be suffering. You can go back to meeting the criteria after “Remission”, because while therapy and medication have their place, BPD is not a simple “chemical imbalance” you can fix with the the right medication regime, and DBT and other therapies can have a huge impact on your life, but again it’s not a one-size-fits all thing, as you can imagine being such a variable diagnosis. Since you only need 5/9 to meet it, it’s possible me and my friend with BPD only share one of the criteria, and so present extremely differently.

Why people come to be diagnosed with BPD is also such a varied path. This might seem a little reductive, but I’m starting to notice to main streams in the people I’ve met with BPD, which overlap many times. There’s the group that have experienced clear, pin-pointable trauma and those who struggled to regulate their emotions and interactions with the world for as long as they can remember and then they get to teenagers or adulthood and can’t hide it any more and it gets messy. Of course they overlap, with the second group unfortunately finding themselves vulnerable to mistreatment and abuse that leads to trauma, but they seem to be the two main “paths to BPD”. Many of the second group look back into their childhoods and realise that they may have been living with Autism or ADHD but not had it recognised as they weren’t classically Autistic, which led to them developing the coping strategies that are BPD in order to attempt to function in this world. Others are the Queer Kids, not fitting in gender or sexuality wise and tried to fit in so badly that they came to grief. BOD seems to come from trying to fit into the world when you’re not the right fit, trying so hard, but just not getting it right.

The diagnostic label of Complex-Post Traumatic Stress Disorder (C-PTSD) is being used more widely in recent years, and often to do with that first group, the survivors of Childhood Sexual Assault or other traumas in their formative years. Organisations like The Australian BPD Foundation are even looking to make their names more inclusive of these extremely similar and even overlapping disorders than impact the lives of those living with them significantly.

If we didn’t have to have diagnostic labels to access supports, it really wouldn’t matter whether you considered yourself to be Autistic, Borderline, CPTSD, a survivor, ADHD, Queer or any other thing trying to fit into this world, but it does, from needing to meet the BOD criteria to access Dialectical Behavior Therapy programs, to knowing you have ADHD to get the right medications, to being “Autistic enough” to access the NDIS, or getting the right paperwork together to get DSP. The world needs us to have labels, and they really do help in gaining an understanding of yourself, and learning how you work and how to figure out how to function or even thrive in this world. Early diagnosis and understanding is such a preventative thing, and I’m glad that children get ADHD and Autism recoginsed younger and younger because it means we can help them and help them to help themselves at this early stage, while we’re able to coach and comfort them, because it “Gets messy” as it does for many in their teens.

I call myself Borderline and Autistic, I strongly saw myself in the BPD criteria the first time I read them a little over ten year ago. I worked in Autism organisations in my 20s and 30s and never ticked that the Fiona I grew up as could be considered Autistic, but getting to know more and more Autistic and ADHD and other neurodiverse adults I’m able to learn about the parts of Autism that I “have”, how the sensory world works for me, how I operate socially, how I communicate, how I need to time and space to regain my  social and sensory spoons after doing the things I love and the things I want to do. How caffeine affects or doesn’t affect me and whether that points to ADHD lol. I remember being called out at work by managers about how I operated in meetings or interview and I can really see now how that might have seemed odd, but also if only I understood that I could be “on the  spectrum” it would have made sense. I don’t have an Autism diagnosis, and I’m lucky enough to not have top seek one at this stage because it’s bloody expensive. So I just work on understanding and educating myself, and working with who I cam to be the Fiona I wanna be, BPD or no BPD.

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Happy Borderline Personality Disorder Awareness Week – This is me!

Autism Acceptance, Awareness and Awesomness Day

I will preface this post to say I don’t have a formal Autism diagnosis, and I’m trying to be brave enough to raise it with my DBT therapist (maybe this is the week) but I do believe in this world of mis-diagnosis and gatekeeping of diagnoses by “specialists” with big books, self-diagnosis is valid. I’m still pondering if I’m #actuallyautistic, either instead of or alongside my Borderline Personality Disorder Diagnosis, and learning about the experiences of other women and girls growing up without or with an autism diagnosis hits me in so many feels – ie I could be that little girl being misunderstood, trying to fit in, trying perfection to please others. Anxious and confused but somehow masking and muddling through, despite the emotional pain.

Having a Speech Pathology qualification and experience has NOT helped me in my understanding of my possibly autistic self. Too much medical model, experience being a diagnosis gatekeeper or at least working amongst them, working within the DSM, and the deficit models that diagnose because of trauma induced behaviours. It also moulded me into not believing Autistic adults were as capable as many of them clearly are, again working with people because things are going wrong in their lives, often to the inconvenience of caregivers or authorities, and not because, actually let’s work towards their own goals.

The Yellow Ladybugs conference last year focussed on the mental health of autistic girls, with plenty of sage advice from autistic women who were once confused little girls like me, trying to understand and fit in with the world around there. That conference showed me that autistic women could be psychologists and teachers and speech pathologists, but it took a lot of self-awareness and self-advocacy in a professional sphere that very much has an us and them feel at times.

I worked at a specialist autism school at one stage in my life. I think if I had the understanding of myself that I do now, I would have been able to cope better (bloody hell schools are over stimulating nightmares at times, let alone the social demands!) and would have been a better speechie, better at my job is all aspects. Unfortunately at that time in my life I was not doing very well at all mentally, it’s around the time I got my BPD diagnosis and had my first hospitalisations around self-harm. So yeah, If I could have my time again? I don’t actually know how I’d handle it…

But I’m working through my journey. DBT is going well, I AM feeling more skillfull, I can handle more of the things the world throws at me, even though I’m really only just emerging into a living with covid world where I have to interact with people in person and somehow backup and do it all again. My spoon levels fluctuate wildly, and I have to attend to my downtime, so I can be present when I’m wanting to. We’re doing the interpersonal effective model, and god doesn’t it feel like a social skills training for autism, eye contact recommendations and all. I’m a bit skeptical of parts, but I give everything a go, and apply what works for me. I hope the others in my group can too.

So this Autism Acceptance month, I’m learning more about myself through all of your experiences, so please, share your stories, I’m thankful. I wish they were so painful at times, I’m here with big hugs and virtual stuffies and weighted blankets for time out when you need x