The Politics of the Convoluted Path to ASD Diagnosis for Adults.

I haven’t blogged for a while; I have been honouring the expression “learn to rest, not quit”.

I’m in the (costly and time consuming) process of getting the most detailed adult Autism diagnosis I have ever had.   It also involves understanding my history and how an old (largely recovered from) brain injury intersects with what I have come to know in the last decade (and accepted in the last three years) with my Autism. *Please note I use both person first (person with Autism) and identity first (Autistic person) descriptors to reflect the various positions in the community. I need to make note that Autism is not a mental health condition, but a neurobiological difference.  The experience of Autism discrimination and ableism results in mental health conditions for many people on the Autism spectrum. Regardless, we need to act to remove all stigma, for both Autism and mental health conditions and fully support and fund a better mental health system. 

There are both positives and negatives in this.  A part that has been hard to deal with is the fact that so much of the trauma of my life could have been prevented with early diagnosis.  However, early diagnosis in my family of origin and in the 1970’s to 1990’s could have been worse as well.  I may have been forever seen as a broken doll (more than I already was which was bad enough) and subjected to more medicalised abuse.  By this I mean family violence that weaponised medical grounds as an excuse.

A big positive is now I have new strategies to prevent the burn out and chronic health implications that have dotted the scenery that has been my life.  I may even be able to find a way out of the cycle of poverty and homelessness that I experience every couple of years.  Yes, me, I experience this, as educated and capable as I might seem, I’m Autistic and good at hiding the struggle as a matter of surviving the daily microaggressions life presents me.

But I want to talk more about the path to adult Autism diagnosis and why it’s so difficult to get one (particularly for women).  I have been down the path of years of misdiagnosis and I myself did not realise just how life changing the right diagnosis could be.

In fact, I was pretty anti-diagnosis before starting this process, mainly because I was misdiagnosed over and over again. This is not uncommon for women on the spectrum as this piece by Apoorva Mandavilli discusses in depth.

One of the things that stood out through the journey of the last three years of embracing Autism – can be summed up as follows:

Autism doesn’t end at 18 and there are Autistic adults.

In online forums the focus is often “my eight-year-old just got diagnosed and…” and in the majority parents are looking for advice from experts or other parents, but rarely Autistic adults.  It’s a reflection of societal stigma’s about Autism, that we cannot be adult or expert in anything, like we are permanently locked in and viewed as inept children.  You only have to read a dozen or so threads, to assess discussions biased towards “cures” (often subtly) and see language of half-hearted acceptance at best.  We have a long way to go.

In fact, we are often shouted down when critical of therapeutic approaches that did us harm or weren’t helpful particularly if that therapy is the current flavour of the month.  Advocating for a space for Autistic adulthood and it’s expertise is something many adult Autistic advocates are regularly presented with.  Autistic author Yenn Purkis does it particularly well and has discussed this in their blog and articles.

One of the most concerning things is the lack of asking the person with Autism in a way we can fully engage with the questions – and this impacts on our ability to manage the diagnostic pathway.  So many questions in online forums that should be answered with “have you asked your child first?”  *People will jump up and down and say “but non-verbal”.  Non-verbal does not mean non-communication or non-capable.  We need to stop equating the two and learn to work with Autistic children and adults find ways to communicate, not just assume they can’t. This goes for all children generally! 

Getting towards diagnosis as an adult is tough.  Here’s some thoughts on the last couple of decades from a structural perspective on why that is:

Gender Bias, GP’s and Anti-D’s

General Practitioners (GP’s) are overloaded today with health concerns that once would have been the domain of specialists as successive governments have stripped back Medicare.  Specialist appointments are more expensive than ever with more than one million Australians unable to afford out of pocket expenses and people tending to rely on GP’s more than ever, rather than go to a specialist.

If you live in a rural or remote area you’ll struggle to access a specialist and there is an oversupply of doctors in city areas.  For me, I had lived in rural and remote areas for fifteen years and often had psychologists managing me without a detailed diagnosis on the basis that they knew I wouldn’t be able to access one or that it would be too expensive.  So you could say I was “informally diagnosed” for a while. It could be argued that the freezing of increases to Medicare since 2013, combined with gender bias and lack of specialist services have driven much of this disparity.

I have become very disheartened in the last year and have grappled with accepting who I am and fell into what I call the “GP’s and the Anti-D” trend of the last thirty years (particularly for women). But often we are not neurotic females, we are not given a good hearing to be understood; the way Autism manifests in women is different because we women are trained from birth to do what we can to fit in rather than stand out.

For a while I tried anti-depressants when on the move to Melbourne at the suggestion of my GP in Alice Springs (and I have used them sporadically over the years with limited effect).  I knew it was going to be near impossible to get a detailed diagnosis in Alice Springs and seeking more expertise would take years (waiting lists for visiting specialists) and cost thousands.  So I took the wee chemical beasties for a few weeks and after settling into Melbourne and now haven’t been on them since January.  They don’t work well for me, but for others they might.  I’ve since found other strategies for managing social anxiety (which is not depression).

Put simply, clients come to GP’s with undiagnosed Autism and what gets noticed in 15 minutes are the complex mental health issues that often go with the social exclusion experienced and stigma of being Autistic.  We end up rapidly on anti-depressants for a variety of reasons because 15 minutes with a GP (even with a relationship of several years) is not the best path to a diagnosis.

Plus we already know that gendered medical bias is a thing – so there’s that and the evidence base for this is growing.  So if you identify as a woman that compounds the issues.  You are more likely to be misdiagnosed with a mental health condition than you are to be referred to assessment for Autism.

I attribute some of this to the fact that mental health services are so stripped back by successive governments that full diagnosis comes only with extreme expense or admission to psychiatric hospital. A great deal of people who may be undiagnosed ASD are struggling on because neither of those options are practical, safe or even possible.

In the last couple of decades General Practitioners are being placed in unenviable position of managing the end game of this punishing and stigmatising austerity.  They cannot be expected to diagnose complex issues and yet are managing these by proxy and suffering more burn out, stress and mental health issues themselves.

I decided to go off Anti-D’s after a few weeks and set about changing my life, instead of going around in circles. I’ve just about gone broke trying to manage this, until a fortunate windfall of $4000 via a complaints process came my way, paying for speech therapy, psychology and part of my service dog’s training and accreditation.  Already half way through the detailed diagnosis and already it has fundamentally changed my life.

There’s also a big difference between depression and Autistic anxiety/trauma and anti-depressants are just one part of this and may or may not be the right course of action. The levels of trauma Autistic people experience in a world designed for neurotypical people needs a much closer look than a visit to the GP will get us.

So if you are undiagnosed and struggling…off you go to get a Mental Health Care plan and see a psychologist – but it won’t cover your assessment which is worth anywhere between $2000 and $4000.  So you put off assessment and seek cognitive behaviour therapy (CBT), which never quite cuts it because you know – you don’t have the road map that a decent ASD assessment gives you.

But even the bare minimum of CBT on a mental health care plan, on average over and above rebates, is worth around $120+ an hour.  The reality is to stay well most people really need once a fortnight a one hour + session, that’s 26 a year and Medicare gets them 6 x 30-50 minutes.  If you have private health you’d be lucky to get another 6.  If you can afford private health insurance, which for many people the costs outweigh the benefits.  So another 12+ at around $280 an hour.  So let’s say, even with some partially funded visits (Medicare and private health), you’re still looking at around $5000 per annum – which is not a small amount, particularly if, like many on the spectrum, you have other co-occurring conditions.

Not so long along ago it was ten visits on a mental health care plan and fully covered, which reduced costs to about half that.  Psychology practices are high risk and complex services to provide, the issue is not with their rates, but with the lack of government support for mental health services compared to other health conditions.

So now, you can expect to spend thousands of dollars for mental health services that don’t fully support you as an undiagnosed ASD adult and the health problems pile up.

What I find fascinating about the constant watering down of Medicare by successive governments is that these governments are also anti-welfare, which is a contradiction in and of itself.  Poverty is not a disease, but it is often caused by disease or ill health.

I’m Autistic and when a bureaucrat says this is good economic logic, this punishing of people for things they cannot control – I think that’s the most bizarre human logic ever.

Can we stop calling it “economic logic” and call it what it is – late stage capitalist gaslighting?

So here are some of the hurdles to getting a proper diagnosis for Adults on the spectrum:

  • Gender bias in medicine that puts us on the mentally ill bandwagon as the primary condition, instead of it being secondary to Autism
  • Stresses placed on the medical profession (particularly GP’s) to be all things to all people are unfair and potentially dangerous, particularly when their patients can’t access specialist help
  • Availability/cost of specialist diagnosis in rural and remote areas
  • General cost and availability of specialist diagnosis
  • Rising out-of-pocket expenses and freezing of Medicare rebates (check out the extensive 2018 report here)
  • The combined impact of the above increases the chances of regular periods of trying to cope with poverty and increased the ill heath impacts…and we are trapped in a cycle.

So when you can’t work because you can’t afford the right diagnosis to access the right health care and even then it’s too expensive where do you end up? On welfare for short or prolonged periods and below the accepted poverty line (check out the latest poverty line figures for December 2018).

For women, as we age, these periods of incapacity get longer and because of this we are now one of the most at risk groups for homelessness in Australia. I wonder how many on the streets are undiagnosed women with Autism that have had to follow a similar convoluted path of misdiagnosis?

*Note, I haven’t comment on childhood diagnosis cost and complications.  I am sure they are as equally problematic.  This blog post is about the fact that adults with Autism are treated almost like the unicorns in the medical world – we are to be debunked first and witnessed verified later. It’s time we were heard, not dismissed. I also need to acknowledge and ensure I indicate this includes trans women and that this medical bias and discrimination is just as present and often worse for trans people.  I myself am non-binary and in the process of coming out as such.

 

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