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.

 

Hypnotism, Hospitals and Healing.

Been an interesting week to say the least!

My comedy business, Gin and Titters (named after my need for a gin and tonic before I make people laugh) – hosted a visiting Comedy Hypnotist Dave Upfold.  You can check him out at Not 1 But 2

simple centre to the top 1We’ve worked hard with promotion but unfortunately we’re not able to attract the crowd we wanted.  Despite this the show was great and people thoroughly enjoyed themselves! It was interesting watching people I know volunteer on stage and as usual – us Theatre Sports folks were some of the most entertaining! Check out the fabulous dancing here from my fellow Alice Springs Theatre Sports buff!

Alice Springs is a small transient population of 24 000. During the Easter long weekend even less and people tend to celebrate with family more than go out.  We had to compete with a large scale music festival.  In the end we got one good night out of the three planned.

The other complication was my health.  As you know (and if you read The Girl who Cried Blood Pressure ) I have very difficult to control blood pressure.  It’s know as secondary hypertension, because it is not caused by a heart problem, but by a more systemic issue.  In my case, it’s linked to the massive trauma of Neurological Decompression Illness (see my LinkedIn article about being a “bends” survivor).

So this week it reared it’s head again.  Now, stress? Yep.  But normally that is not a problem – if my medications are working.  But they haven’t worked for about 18 months and I’ve been struggling to convince the medical profession of that fact.

They see me living life to the full and figure – can’t be that bad.  But, on the flipside of that, I am a stoic pain the ass, so they would naturally assume that.

So here we are, a comedy hypnotist, a sound effects guru and a bedraggled me (at least it feels that way for me at the moment)!  Onwards and upwards!

Anyway, a day in hospital and a change in medication and we are back on the road…literally…for the end of the week in Tennant Creek, Katherine and Darwin.

That’s another 600 km drive to Tennant Creek, then another 680km to Katherine and then another 300km or so to Darwin!

The Girl who Cried Blood Pressure and Gender Bias in Medicine.

That’s the Red Sea in the featured image.  When I was in my 20’s I couldn’t have possibly imagined ever being able to snorkel off the coast of Egypt.  But at 47 I did.

In 1993, at 22 I nearly died in the sea.  Off the coast of Noosa, on the Sunshine Coast.  My scuba dive operator (I was a Dive Master trainee) was so obsessed with completely the dives for a course that he did not think safety was much of a concern.

The result was two students who kept floating away and me chasing them.  I got the bends; a nasty combination of neurological and musculoskeletal forms.   Before I go any further…no, I didn’t “come up too fast” – it’s much more complicated than that and can take hours to experience symptoms.  That’s Hollywood bullshit.

Ever since my life has been plagued by all sorts of health issues related to being in a hyperbaric chamber after a delay of 28 hours before I could get treatment.

One of the issues is uncontrollable blood pressure (BP).  No matter what I do.  I could sell my soul, strike a deal with the druids, have an exorcism or launder money for the mafia to pay for a black market heart transplant and none would work.

For years I thought that my BP was related to the neurological trauma of the accident and subsequent treatment.  A couple of doctors with some specialist training agreed, but invariably most doctors (both male and female) didn’t pay any attention to my concerns.

In the last ten years I have had it confirmed via two specialist doctors and a lot of testing.  There is nothing wrong with my heart – my brain (in the driver’s seat of controlling my blood pressure) has rejected the notion that I need reasonable blood pressure to survive.  *Damn you, brain*

It’s extremely frustrating to be told by the medical profession that you do not know your own body.  Try that for over 25 years, only to finally have your viewpoint validated in 2013 and 2018.

I’ve done everything to keep my BP at bay.  Most recently I had a virus for a few weeks and my medication for hypertension did not absorb, resulting in a hospitalisation.

When I go to hospital I am a bit of curiosity for doctors, but until recently that hasn’t been necessarily positive.  Most of them won’t get to meet a survivor of Neurological Decompression Illness (NDCI) in their careers.

This recent hospitalisation this past week was the nicest hospital visit (albeit under awful circumstances) since like…forever.

I’m used to blank stares from nurses and doctors when I mention the NDCI, blood pressure and my constant battles with chest pain.  But this visit this did not happen.  In fact there was a great deal of knowledge about it and I was treated with respect – not suspicion or condescending disbelief.

The Huffington Post has recently brought up the phenomena of gender bias towards women as patients.  I found the article of interest about gender bias in the treatment of pain whilst sitting in a hospital bed.  I was going through what I go through every few years with the medical profession around the “mystery” of my blood pressure and associated chest pain.  It’s not a mystery to me, but hey…what would I know?

Laurie Edwards, in the 2013 NY Times article “The Gender Gap in Pain” writes:

The oft-cited study “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” found that women were less likely to receive aggressive treatment when diagnosed, and were more likely to have their pain characterized as “emotional,” “psychogenic” and therefore “not real.”

If you want to see the original study referred to above you can find it linked at the bottom of this post.

I know at times I have been referred for mental health services for describing the pain I experience as a post-bends patient, rather than take me seriously.  I even had one doctor refuse to take seriously dangerous blood pressure because he thought it was “emotional”.

Yet prior to getting the right medication mix, I could meditate and be totally chilled and still have massive blood pressure. When properly medicated it comes down to normal.

I am reminded of the time in 2009 when I meditated in the emergency room to prove to the young male doctor there that I was not merely “stressed out and emotional unnecessarily”.  I managed to drop my heart rate down so low he said he was “impressed” and yet my blood pressure stayed dangerously high.

He concluded that, at 39 years old and after years of arguing since I was 22 that I had no control over my BP, “that you clearly need medication”.

No shit Sherlock.

I did everything before the medical profession would take me seriously.  At one point I rode a bike 300km a week, went to the gym three times a week,  meditated twice a day, ate perfectly and lived only for my job and my young child.  I don’t drink or smoke, so that wasn’t a problem.  I didn’t have a life though.  And I still had fucking enormous blood pressure that resulted in chest pain and feelings of general malaise.  All of which I pushed through like the pain in the ass trooper that I am.

Since then I have just stood my ground, changed medications when side effects became a problem and changed doctors when they told me to try diet, exercise and other treatments for heart related hypertension.

I don’t have heart related hypertension – my heart is a fucking legend.  It has allowed me to trek 211km in the Himalayas at altitudes of 4600m no problem.  My heart has put up with average BP of 160/111 – 180/120 for extended periods of time because no doctor would properly medicate me.

This week my cardiac stress test result garnered the words “heart like a Mallee bull” from one of the doctors.  Because my heart could handle blood pressure of 240/140 during the stress test.  Gee…thanks.  Now let’s fix it so my heart and organs aren’t under so much pressure, eh? Yep, goodo.

Yet in the past,  I was often treated as though myself and my blood pressure machine was “all in my head”.  Interesting considering stress does not affect my shitty blood pressure.  It’s just shitty and between 150/110 and 190/120 on a daily basis.

This week a fabulous team at Alice Springs Hospital took all my concerns seriously.  I didn’t have to argue.  Wow. That was different.

One really cool young guy doctor knew a lot NDCI and reassured me that it was most likely that it had caused my struggles with BP and that it should be treated accordingly.

I was in hospital this week because it appears my medication hasn’t been doing what it should for the last 18 months or so.  I got a virus and for the last few weeks my medication wasn’t absorbing and I had bad chest pain and BP of 200/130.  I was admitted to hospital to sort it out.  It was scary.

But the result was that I finally have doctors permission to adjust my own medication dosage, with specific parameters, around my daily blood pressure readings.  Just like a diabetic does with blood sugar readings.

*HOO-FUCKING-RAY.* there is a little happy dance that goes with this…but I can’t replicate it in writing…

There is finally medical acknowledgement of what I have been saying all along.  I never had blood pressure until I suffered NDCI and now it is uncontrollable – no matter how much of a “good girl” I am.

It does get worse when I am around abusive shouty people and things that generally put up people’s blood pressure, that is for sure. Regardless of medication. But now I can bring it back down with the right combination of medication – and removing myself from toxic situations.

It’s taken a while but we got there.

I need to point out I am always calm when I present to hospital with massive blood pressure and chest pain, despite how distressing it is.  Why? Because from 2006 and 2009 they keep referring me as a mental health patient for being upset about chest pain – chest pain that I legitimately had because I had been getting around with massive blood pressure.

In case you didn’t know, carrying around really high blood pressure is shit.  I’m tired for no reason.  My ears ring much louder than normal.  I see a swarm of black dots.  Overy the years some doctors say that is typical with high blood pressure, some have said it’s anecdotal.

But, by fuck, none of those things happen when my BP is normal.  I know have so much evidence from the medical establishment that it is not “in my head” that it’s almost insane in itself.  But still I still have to explain that over and over again.

So now I work really hard not to feel or act emotional about my blood pressure when I present to a doctor, despite how crap I might feel.  I tend to get better response from both male and female doctors.  But the downside is that they then think I am exaggerating;  until they get the blood pressure machine on me and watch me over time.

Damned if you do, damned if you don’t.

So I suppose the moral of the of story is this: if you are female and experiencing pain, expect to be treated differently by the medical profession.  Be prepared for it and don’t tolerate it. 

Even better, if you find yourself having to explain the pain over and over again and it falling on deaf ears – don’t take it.  Print out the study The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain and shove it under their noses and asked to be taken seriously.  Then ask to see someone else and make a formal complaint.

Because a good doctor/s – like the team I had this week, they’ll listen and not treat you like a “malingerer”.

Don’t give up and don’t let any condescending medically trained poop treat you like a “hysterical woman”.  You are entitled to express that you are in pain in whatever way you need to (with the exception of abusive behaviour – that is never okay).  You are entitled to ask for help and to be treated with care and concern, not condescension.