The Disability Royal Commission Breakfast Seminar: breakfast with a viewpoint.

This morning before work, I attended a breakfast seminar regarding the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Now anyone who knows me reasonably well knows that I must have been seriously interested to get up that early and pay money to not be able to eat the food provided (anything more than coffee before 10am is too much).

The seminar was hosted by a law firm who represent several NFP organisations, and who have been involved in advising organisations during the Child Abuse and Aged Care Royal Commissions. It was directed towards Service Providers, telling them what to expect as the Commission unrolls, and it was a fascinatingly different perspective for me.

Now – I am a Service Provider within the disability community. But primarily in this space, I identify as an Autistic woman. I felt a little dubious and guarded, settling myself into the tall office chairs and balancing a coffee and my collected documents on my lap, surrounded by networking strangers.

The Powerpoint notes provided didn’t give much away. They were bare fact, and mostly things that are generally well known.

When the speakers got up, though, I was quite surprised at how strongly they spoke in favour of the Royal commission and its goals, and by the type of information and advice they were sharing with the service providers.

Their main message was this:
The Royal Commission *will* change things, and it’s right that it should.
Don’t be caught unprepared.

“The Disability Industry has no idea the tsunami that is bearing down upon it.”

The advice they provided was also a little surprising to me, cynically expecting abuse apologists and evasion:

  • List everything you may be called upon to address upfront and voluntarily, don’t make them dig for it;
  • Acknowledge everything openly and honestly; don’t try to excuse yourself;
  • They will require a high standard of evidence to demonstrate change in both policy and practice so past issues won’t arise again – * actually changing* is the surest way to be able to provide that evidence.

They also gave general information about the Royal Commission; most of this is available from the main Royal Commission website.

It is anticipated that the Commission will take 5 years to run its full course.
1 year setting up
3 year period for hearings
1 year wrap up.
The Interim Report is due on 30th Oct 2020, and the Final Report 29th April 2022.

The Disability Royal Commission has six Commissioners appointed. Two of those are somewhat controversial, as their past professional roles within Government Departments addressing disability issues may put them under something of a Conflict of Interest. The composition of the Commission may change, but the number is unlikely to.

For comparison, the Aged Care Royal Commission employed two Commissioners and 100 barristers. Nobody knows yet how many lawyers will be employed.

Terms of reference:

Four broad Terms of Reference have been determined, based on consultation with the public earlier this year, with a special request for people with disabilities to provide input. These terms are:

  1. What should be done to prevent, and better protect, people with disability from experiencing violence, abuse, neglect and exploitation?
  2. What should be done to achieve best practice in reporting and investigating of, and responding to violence, abuse, neglect and exploitation?
  3. What should be done to promote a more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation?
  4. Any matter reasonably incidental to these matters

The fourth Term of Reference means there is very little chance of any challenge being raised through an investigation being “out of scope”. In fact, there is no real limit on the scope of enquiry – including no time limits since abuse occurred, no limits to what areas they may investigate. 

In fact, the Commission documents state that, “The inquiry will cover all forms of violence against, and abuse, neglect and exploitation of, people with disability, in all settings and contexts.”

The only caveat is for matters already under enquiry via the Aged Care or Child Abuse Royal Commissions

The Court of Public Opinion

During the course of the Royal Commission, all proceedings, including all information uncovered in the course of the inquiry, is subject to public scrutiny. It will be live-streamed and many of the real decisions will be made with or even by the Public. This can have a significant impact on the lives and livelihoods of people and organisations investigated, particularly as the Royal Commission is not governed by laws of “evidence before inquiry”. Many old charges will be re-litigated, and even where the caveat applies, this doesn’t mean that incidents or rulings won’t be used as evidence in the inquiry.

Goals:

In addition to exposing issues with abuse and the quality of care provision, the Royal Commission intend to determine and define best practice, and have a strong regard to effecting policy change.

They expect to explore issues beyond traditional concepts of violence, abuse, neglect and exploitation – they anticipate deep enquiry into funding, especially NDIS, staffing, access to health services, and governance/policies governing care provision, and will most likely recommend increases to funding and changes to the funding model, better laws regarding complaints and protection of disabled care recipients, and the establishment of a statutory body to independently investigate and support future claims.

Warnings and Advice to Service Providers:

* Do Not Delay. Provide all information “voluntarily” when first invited to respond.
* Know where your likely vulnerabilities are, and where the information is to respond to issues arising.
* Be prepared for significant media and stakeholder scrutiny, unbalanced reporting, misinformation, and panic.
* Be prepared also for significant follow-up litigation.
* Be aware that there will be a significant emotional toll – on Boards and business leaders particularly. But also remember that any emotional or emotive response is probably the wrong one.
* There will be an immense distraction from your “business as usual” – ensure you are resourced appropriately to respond by creating a designated “response team”
* Organise your external legal team, and evaluate your insurance position.

Final thoughts:

As a disabled person playing the role of “fly on the wall” in this seminar, I was surprised at how seriously and even powerfully the disabled community were being represented by these lawyers, who clearly wanted to impress on the guests that *any* powerless and marginalised group of people have more power in numbers – and with a Royal Commission behind them – than those who are the subjects of the inquiry have previously paused to consider.

Pain is weird in Autism sometimes. Experiencing, describing, measuring it.

Chatting this morning with another Autistic person whose healthcare experience was less than awesome, I thought I’d take time to write a bit about pain.

One of the things that makes healthcare complex for Autistic people is that there is a difference in our experience and expression of pain. This is noticeable to healthcare providers (those who know what to look for and don’t pre-judge, which is admittedly a small pool).

But why?  Why is our pain weird?

Sometimes, our actual experience of pain is either reduced or heightened in comparison with what “most people” would expect.  For many, the superficial pain from splinters, paper cuts, or removing bandaids is quite overwhelming, whereas the deep, dull pain of internal issues is lessened in comparison.  This is because there are many more nerve endings at the surface, and several different types of them, whereas the internal nerve endings are less varied, slower, and there are fewer of them.

Given that recent studies show more neural connections in the Autistic brain – particularly in sensory processing areas – and less inhibition of those connections, it makes a lot of sense that Autistic people may have a more intense experience of superficial pain than of deep pain.   Internal pain, involving fewer receptors,  would therefore be read by the body as ‘less severe’.ubiquitin

However, the experience of pain is a very individual thing for all people, and even more so for those with non-typical sensory experiences.  A chronically intense experience of sensory input may in fact not follow the expected ‘dull, heavy’ description of internal pain, and result in deep ‘visceral’ pain being felt acutely and sharply, meaning the description doesn’t sound ‘right’ to healthcare professionals expecting a certain presentation with different types of pain.

Autistic people have frequently described to me times when they “should” have been in agony, but experienced less pain subjectively than would be expected, or whose description of pain has been unusual for the cause or site of the pain. This has often resulted in not being believed.

  • A friend had bilateral DVTs (clots in the leg), and a pulmonary embolism (a bit of clot that had broken off and lodged in the lung).  These are usually considered excruciating, but when experienced over the top of her ‘normal’ pain, it wasn’t *that* much different.  She was sent home from hospital twice without treatment before someone decided to do ultrasounds.
  • The friend I spoke to this morning told me they’d recently had a bad infection, causing significant pain and requiring IV antibiotics, but after one dose she was sent home because they didn’t think she was ‘that sick’.  The doctor rang her the next day in something of a panic, told her to come back in, and said, “You hid your pain from me!” – as if it was her fault he didn’t believe her when she said she was in pain.  She declined his offer.
  • I only knew I had meningitis because I could feel my headache shooting down my spine with each step or jolt.  I only knew this was meningitis because I had assessment and pathophysiology education.  From other people’s descriptions of meningitis pain, I wouldn’t have thought it was bad enough.
  • My husband was told he only had “bruising and swelling” in his arms after a motorbike accident.  He was doing music practice the next morning, before he went in for an ultrasound.  The doctor cornered him before he left to talk about his two broken arms; one elbow bone, and one wrist.
    D: “Oh.  Can I still play my gig this weekend?”
    Dr: “No.  Oh wait, what do you play?”
    D: “Drums.”

I also have a personal hypothesis about why we don’t seem to experience pain in the same way as neurotypical people.  It’s this:
From a very young age, children who “fuss” over superficial injuries are ridiculed, coaxed and scolded into showing less reaction.  So when you’ve been hurt – because so much does when your senses are heightened – you learn over time to suppress it, try to ignore it, because you don’t want to be a ‘wuss’.  If a cut finger feels that bad, this dull pain in my lower abdomen couldn’t be that important, right?

At times this may be associated with the experience of acute pain due to a specific injury or illness being overlaid onto chronic pain, meaning that the difference between the two kinds of pain is less than it would be if there had been no pain to start with.

Another reason we might appear different is the amount of effort required to prevent a meltdown from the sensory overload of severe pain.  This was the main driver behind the treatment of ‘C’ in the blog post from Day 9 of the Autism Acceptance Month series.  Meltdowns are uncontrolled, and can be painful even if you don’t have an urgent  condition requiring medical attention.  You’re going to want to keep it together if you possibly can.  This will possibly involve less talking, avoiding touch, avoiding eye contact, and if possible, moving to a quiet, darkened room.  If you feel it would be helpful, you could print off this card and take it with you.

meltdown card

 

When you’re in pain, the most important thing to do is explain it to the people who will know how to stop it.

That Pain Rating thing.

Nurses are very persistent about getting a number rating for pain.  Again and again I hear that being asked for a pain score results in a great deal of ‘overthinking’.  “How can you compare pains?  How would I know if this is the worst pain ever?  Maybe it could get worse.”

Let me give you a way of working the numbers out.

First, they’re asking about your own pain as a subjective measurement.  You’re wanting to consider a general concept of “how bad is this for me right now”. It’s a snapshot at that moment, and you are not trying to compare types of pain.

When working it out for yourself, 0 is no pain whatsoever, 10 is worse than you have ever felt before. You’re not trying to decide whether you might feel worse next week.
Just – have I ever felt this much pain before?

If it’s not a 0 or a 10, the next question is, “in comparison to what I’ve felt before, is this pain mild, moderate or severe?”
You could classify this as:
– mild is “I can still do stuff, it just hurts when I do”
– moderate is “this is really interfering with stuff I want to be able to do”
– severe is “this is probably the only thing I can focus on right now”

And then, to get a number out of that, you think, “So if this is moderate (for example), is it closer to mild, closer to severe, or neither – right in the middle of moderate?”

So then you have:
mild = 1 (present, but almost nothing), 2, 3 (bordering on affecting my daily living);
moderate = 4 (interfering with stuff, but not unbearable), 5, 6 (really starting to get so I can’t do much);
severe = 7 (could probably force myself to do stuff if it was really urgent), 8, 9 (it’s not that I haven’t ever been in more pain, but it’d be close).

If you ever have to go into ED or hospital with pain, it’s worth taking a bit of time to think about this before you’re faced with the questions barrage, and this will possibly help you to get a couple of stock phrases ready to use so you can access them quickly. “I had tooth abscess recently that went into the jaw; if that was an 8, this is probably a 7.”  “Childbirth was a 7, this is more like a 9.”

The number doesn’t give a lot of information, though.  The health care provider needs to know more about your pain than how bad it is.

PQRST Pain Assessment.

This gives a general idea of the pattern of your pain, which can give a lot of information to the healthcare provider and help them to get to the cause of your pain.

P: Provoking and palliating factors.  What makes it worse, and what makes it better?

Q: Quality.  How would you *describe* your pain.  This information can really help the healthcare professional to understand what’s going on.  Different types and causes of pain have different descriptors associated with them.

words to describe pain

R: Radiation.  Does the pain move?  Does it shoot along a nerve, or has it shifted since it began (e.g. started in your back and moved to your side, etc)

S: Severity – this is where you put the pain rating you worked out earlier.  If you’re still unsure, just decide whether it’s mild, pretty bad, or really bad.

T: Timing.  Is the pain there all the time?  Only when you move?  Worse when you wake up or when you’ve been awake for some time?  Has it improved or gotten worse since you first felt it.?

Armed with this quick self-assessment, you should be able to explain things to the health care professional in language they understand.

Autism Acceptance Month – Day 12

My criteria for Autism organisations is pretty simple.  They have to put Autistic voices at the forefront.  Even beyond “nothing about us without us”, the priorities of the people who the organisation purports to serve need to be absolutely central to the organisation.

I have two Autism organisations that I am particularly fond of.

The first is ASAN, the Autistic Self Advocacy Network.  This is an Autistic disability rights organisation – that is, it’s been developed and is being run by Autistic people, to advocate for and with Autistic people, and to help develop the capacity of Autistics to advocate for themselves and others.  The group provide a media presence, a hub and actual support to support people’s self-advocate, which may include training, funding .

In their own words:

“ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us.

Our staff work to educate communities, support self-advocacy in all its forms, and improve public perceptions of autism.

Our activities include public policy advocacy, the development of Autistic cultural activities, and leadership trainings for autistic self-advocates. We provide information about autism, disability rights, and systems change to the public through a number of different educational, cultural, and advocacy related projects.”

The ASAN website includes a Resource Library, which includes tools and resources to assist with self-advocacy.  It provides guidelines for some of the issues that come up again and again, including supports, health, law and political policy, although these are directed mainly at an American audience.

It also has a list of Position Statements, outlining the position that ASAN takes in regard to many of the most pertinent issues it deals with on a regular basis,

The Australia & New Zealand group (ASAN AUNZ)  has a the same role to play here, supporting and bolstering Autistic people in their self-advocacy, and is the peak body for Autistic Self Advocacy, as well as the primary public voice of Autistic people.  The site links to the resources on the ASAN site, and also provides local advice, guidance and commentary on issues affecting Autists in Australia and New Zealand.

 

My other favourite Autism Organisation is quite different in style and purpose from ASAN.

The Autism CRC (Co-operative Research Collaboration) is a national (Australian) research cooperative group, focusing on autism, and is the result of collaboration between the autism community, research organisations (mainly universities), industry and government.

Reading that, you would expect it has the potential to be dry, and possibly follow a medical and deficit model of Autism (as most research institutions, industry leaders and political departments do).  But this unique collaboration have done something few other large organisations do, and incorporated Autistic people across the entire organisation at many levels.

Before any research projects can be supported by the CRC, they are assessed by Autistic reviewers with training in collaborative research practices to ensure that the project leaders have really engaged with the Autistic community. This means everything from the determination of research priorities to the presentation of the completed research, and each step in between, need to be in line with the goal of being co-produced with Autistic team members.

It would be very easy for an organisation to claim this without having to do the hard work to make it so, but I am constantly and pleasantly surprised with every interaction I have with the ACRC.  They have a real respect for Autistic culture and people, and a commitment to making their research relevant, practical and inclusive, even down to providing “Autistic space”.

I spent a week at the Autism CRC Research Academy last year.  It was not the first time I had been in Autistic space – my monthly women’s group provides that, too – but it was the first time such space had been deliberately and formally crafted to put Autistic comfort at the centre of a workshop-type experience.

The provision of a highly satisfying and satisfactory physical environment, incorporating a variety of seating and lighting arrangements, sensory tools (i.e. ‘stim toys’, although the word ‘toys’ was rejected to avoid infantalisation), and most importantly, the ability to participate in whatever way was most comfortable, to the degree you were comfortable, and to leave if you were *not* comfortable; freedom to stim openly, time given for reflection and for written as well as spoken feedback addressed the next day.  I am quite sure that none of these provisions would be considered unwelcome by the allistic majority (except perhaps open stimming, which is ‘different’ and therefore feared).

Liv, Cheryl and the team (a mix of Autistic and non-Autistic team members) made the experience simply remarkable.  It’s hard to define how Autistic space is different (apart from being full of Autistic people), but I think the crux of it is true respect for people which does not gloss over difference, but embraces it and works it into the space.

Since completing the Research Academy, the other participants and I have been invited to contribute to several other CRC projects requiring Autistic voices, and I have never felt the taint of tokenism in this involvement.  I am always reliably and happily surprised at how well they ‘get it’.

Autism Acceptance Month – Day 11

Stims

Another aspect of Autism that’s been pathologised to the point of head-shaking (from the Autistic community) is that of stimming.

The word stimming comes from the oddly disreputable-sounding “self-stimulating behaviour”, and is described in the diagnostic criteria as “Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases)”.

Some of the most stereotypical images of Autism include stimming behaviour – hand flapping, spinning in circles, head-banging or other potentially injurious behaviours, but most adult Autistics will agree that they have stims, but in the most part have learned how to hide them.

Everybody stims, though; it’s not a solely Autistic thing.  Finger tapping, clicking a pen, tapping feet, clearing a throat nervously – these are all examples of stims.  Several articles seem to suggest that the difference between Autistic stimming and allistic stimming is one of intensity; and in particular, whether it interferes in your everyday life.  Yeah, I kinda reject that.  Not everyone who’s Autistic stims in a way that is obvious or intrusive.  I don’t, unless you know what you’re looking for.

So what *is* the difference?

Yeah, nah.  I have no idea.  “It just is” – or something like that.

I am going to explore it a bit, though…

 

First, stims happen much more often for both Autistic and allistic people when experiencing heightened emotions.  Elation (jumping up and down) or anxiety (chewing nails or needing to pace), anger (drumming fingers or tapping feet), even deep thought (fiddling absently with hair or objects in our hands) elicit stims from Autistic and allistic alike.  But emotions are strong and deep for many Autists; it seems that many of us have a strong “Aha!” moment when we first hear about the Intense World Theory.

Essentially, this suggests that Autistic brains have everything turned up to 11.

11

While there are a number of significant issues with the way the author of the original “Intense World” article has interpreted the data and even more with the dodgy recommendations they make, the concept of the world being experienced too intensely is one that resonates with a lot of Autistic people.

Stimming can help reduce that “world too loud” feeling by giving the Autist another focus, and help regulate emotions and responses to this sensory overload.  One of the concerns expressed about behavioural therapies aimed to reduce obvious expressions of Autisticness in children is that stims are perceived as ‘different’, as a threat to ‘passing’. Suppression of stimming can lead to emotional dysregulation, and this in turn is treated as ‘behaviour to be managed’.  It is little wonder that so many adult Autistics are opposed to these types of therapies.

Different stims may well be used for different purposes, too.  I’d never thought about that before this blog, but in writing it out, I came to realise that my own personal stims are ‘tells’ – what I’m doing says a lot about how I’m feeling.  So, not having much to hide, I’ll share my ‘tells’ with you.

First, a confession.

I sucked my thumb til I was nearly 12, and only forced myself to stop because I was leaving primary school, and didn’t want to be ridiculed.
Now, I still touch my lips lightly with my fingers.  The lips are very sensitive, and I find great comfort in that sensation.  If I’m really unwell or depressed, I’ll even touch my thumb to my lips, which has the effect of relaxing me immediately.

When I’m excited or anxious, I shake my hands as if I’m shaking water off them, or like an athlete warming up before a race.  I never realised that was actually ‘flapping’ until the psychologist who diagnosed me pointed it out.  The effect of this is to siphon off excess energy, which is being created by the emotional intensity I’m feeling.  When a feeling wells up so much I feel like it’ll explode out of me, strong rapid movements like this use up that kind of energy, and allow me to self-regulate.

“Piano fingers” – moving the fingers of both hands as if I’m playing scales or pieces – helps me to focus when I’m struggling with distraction or perseverative thoughts.  The movement seems to “peg down” my thoughts a bit, by using a part of my brain to do something else, drawing my attention to my body rather than my thoughts.

When I’m frustrated or angry, I’ll often tap my feet inside my shoes.  I’m more likely to be unable to voice words when I’m frustrated, which is partly because I don’t want to get into a row, and partly because there’s so much going on in my head that it’d take an hour or more to say what’s circling, so it’s better not to say anything at all.  If I can’t form words, or if I’m struggling to retain my temper, tapping my foot is like an alternative to voicing that frustration.

And when I was in deep despair, three times in my life – as a teenager, after my first child (when I had PND), and during the first couple of weeks of my burnout nearly three years ago – I sought stronger sensations, to cut through the blankness and fog of suppressed emotion.  I understand why people ‘cut’, bang their heads, bite themselves.  It’s a way of reaching for the powerful sensations I’m used to feeling when the whole world has been dulled into grey and sepia.

But there are other stims that are just for the pure joy of sensations.

Until recently, I owned a long black cotton-knit cardigan.  I have no idea where it’s disappeared to now, and that is a very sad thing.  I used to run this between my fingers.  The material was soft, the cotton cool and the movement was smooth against my fingers.  I have fallen in love with heavy satin brocades for their heavy crispness, spiked metal plate for the contrast of sharp and smooth, and the worn-smooth bumpiness of mallee root wood, and the spikiness of a straw broom.  Running my hands along something that I find satisfying and beautiful to touch can take up my whole consciousness – absolutely present in that moment and that touch, with nothing else intruding on the sensory moment.

Which sensations people love in this way varies wildly.  Many people love minky blankets for their soft smoothness, but they feel highly uncomfortable to me.  Other people dislike spikiness or sharpness, but these sensations give pinpoint precision to a touch.  When you add a level of synaesthesia to your world, stimming can be expanded even further.  I love zig-zag patterns and prime numbers – these have the same spikiness as the broom for me.  A friend loves circles, spheres, and the number 8, which is congruent for me as 8 feels like spheres – smooth, rounded.  Even brusqueness and acerbity in a personality has the same strong, sharp quality as a mature cheese or a darning needle.

What are your stims?  What sensations do you love?

Autism Acceptance Month – Day 10

Sensory Life.

One of the most common experiences in Autism is that of sensory differences.  It’s taken a lot of talking to get professionals to listen, but sensory differences have been included in the DSM (diagnostic manual) since 2013. These sensory differences are a spiky profile: people have a mix of sensory seeking and sensory avoidant behaviours, and heightened or reduced sensitivity – often all in the same person – and there are a lot of hypotheses as to why this is true, but no clarity.

Studies exploring these sensory differences find that Autistic children have a significant difference in sensory experience to allistic children, to the point that sensory profiles have a degree of usefulness in the diagnosis of Autism.  Even more interestingly, there is no strong correlation between severity of sensory processing issues (measured in the studies) and researcher-defined severity of Autism.  So in other words, if you’re Autistic, you’re extremely likely to have sensory differences, and that doesn’t change if people perceive you as ‘more’ or ‘less’ Autistic than others.

Apart from the five senses everyone is aware of, there are other senses that can also be different from typical in the Autist.
– interoception, or the awareness of what’s going on inside your body (hunger and thirst, for example, or changes to the internal organs)
– proprioception, or the awareness of where your body is in space, which is sometimes separated from the vestibular sense, sometimes called equilibrioception (important for balance and smooth movement)
– thermoception (temperature awareness),
– nocioception (pain awareness)

One interesting theory as to why our sensory experience is different is that of ‘low latent inhibition’.  Latent inhibition describes the way brains can filter out sensory input that it considers ‘unimportant’.  Some people – including most people on the Spectrum – have less restrictive filters, meaning that sound, smell, lighting, movement etc does not get labelled ‘unimportant’, and therefore doesn’t get filtered out.

This theory has several potentially important consequences.  First, it means that in processing ‘social and reciprocal interaction ‘, we are always concurrently processing a shite-load of other information from our environment, meaning that our minds aren’t ever fully focussed on social cues and conversation.  Second, it means that when input is too complex or strong, sensory overload is likely.  Finally, it appears to have implications for stress and responses under stress.  When your brain doesn’t categorise anything as ‘unimportant’, you spend your whole day in something of a state of heightened expectation.  Every task is achieved by working through a sense of urgency which most people wouldn’t be aware of.  This in turn suggests that in a real emergency situation, there is less difference from the norm in the level of stress for someone with low latent inhibition than there would be for someone without it, and emergency situations are processed in more or less the same way as everyday situations.
While this is only hypothetical, there is much anecdotal evidence for Autistic adults being clearer and more in control during an emergency than allistic adults.

There are other theories also, including ones which consider increased numbers of and connectivity between neurons, or ‘atypical lateralisation’ of nerve impulses (i.e. things shoot off sideways instead of sticking to the main path).

We often say that Autism affects all of us; every single aspect of our lives and experiences is processed through an Autistic filter.  When you consider that over 80% of the nervous system (including the brain) is involved in processing or organising/responding to sensory input, you start to realise what that means.

* * * * *

Even before I knew enough about Autism to realise sensory sensitivity was an aspect of it – let alone that I was Autistic – I knew I had sensory issues.

All of being a picky eater for me was about the sensory aspect of eating. This is something I’ve always thought was fairly normal, because my family are the same.  My mother, my auntie and I were having lunch in a cafe once, and had all ordered lemon tart for dessert.  Together, we each had one mouthful, and together, we each spat that mouthful out into the napkin.  Someone had cut the tart with a knife that had previously cut onions.  Some foods taste bitter to me, but not to others.  Some foods burn – not because they are hot, either temperature-wise or spicy – but because something in that food affects my mouth and burns me.  Tomato, most melons, bananas and pineapple all make my mouth itch.  Textures are also a dietary issue.  Growing up, pumpkin and mushrooms were so slimy that they made me gag (mushrooms still do).  It felt like someone was wiping sludge on the back of my tongue.

Every now and then, my light sensitivity gets out of control, and  I have what I call a ‘light attack’.  Suddenly, everything is too bright and glary, and I can’t keep my eyes open.  It can come on suddenly – it has come on when I was driving – and for a few minutes it is the single most powerful force in my life.
I have a couple of photos of me in kindergarten, 4 years old.  The kindergarten children were to be on a float for the New Year’s Eve parade, and I was to be a mermaid.
Mum had made a tail out of material, and sewn aluminium foil scales onto it, and I put it on and went outside to have my photo taken.  I remember how, suddenly, the brightness completely overwhelmed me and the photos show this, too.
It isn’t a migraine.  I’ve had migraines, both painful and ‘silent’ – that is, with the visual disturbance, light sensitivity and odd tingling in my face, but without the pain – and it doesn’t feel like that at all; it’s absolutely about my eyes suddenly not being able to bear so much light.

My sound sensitivity seems to be getting worse with age.  I am now much more intolerant of noises around me, and have one heck of a startle reflex when I get woken from sleep.  I find it difficult to ignore things like electric fans, traffic or computer whine (the high pitched noise that sits just between sound and someone scraping your nerve with a rusty blade).  Touch is something I crave – I love stroking certain fabrics and textures, and love deep, firm hugs and weight on me while I sleep.  Light, feathery touch, however, is agitating and makes me twitchy and irritated.  And my sense of smell – I get headaches from all but a very few perfumes, even when they’re not on strongly.  I have one brand of shampoo and two body washes I can use, and use unscented products whenever I can.  I can smell smoke on a jacket for several days after I’ve been around someone who smokes, even if we were outside.

Sensitivities are increased when I’m anxious or unwell, but they’re not always bad or uncomfortable.  Synaesthesia, the crossing-over of more than one sense (most powerfully, music and colour, but to a lesser degree, colour with numbers, letters and days of the week), remains one of the most precious things in my life.
The beauty found in the minutiae of objects is awe-inspiring, the unravelling of tastes, instrumental lines in orchestral music, and the transmission of comfort through an unmoving touch – all exquisite.  And yet the psychological and medical literature focusses so heavily on the negative aspects, and the suppression and ‘treatment’ of these sensory differences.  I suspect most of us would like to learn to filter the extraneous input, but not if that means dulling everything else.

Autism Acceptance Month – Day 9

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I’m a Registered Nurse and an Autistic woman, and I run a business called Access Health Autism – helping people to access health care safely and effectively.

This is a significant problem in our community.

 

Let me set the scene:

It’s 7pm in the Emergency Department, and a young woman approaches the triage desk complaining of non-specific chest and back pain.
She seems confused, dazed, reluctant for a physical assessment,
She won’t meet the nurse’s eyes when asked about her pain.
She refuses pain relief, but the nurse is onto her.
These drug seekers often refuse the first offer to hide their true intention.
She’d better give the doctor the heads-up.

Stop!
Back up a couple of hours. Imagine now you’re a young autistic mum who’s been feeling unwell for a few days.
Suddenly … Ow! Your chest! Holy crap that hurt.
The Nurse On-Call service tell you that you need to go to the hospital.
Your kids are home though, and you’re a single mum. The only friend who can come and stay with them is an hour away, and the pain keeps on getting worse.
When they finally arrive, it’s all you can do to say your kids haven’t eaten yet and tell her there are noodles in the cupboard.
You drive yourself to the emergency room.

When you get there, the nurse’s questions barely penetrate your brain.
You answer as well as you can, but the link between your brain and mouth isn’t working.
You’ve withdrawn into yourself, trying to deal with the pain, trying not to melt down here.  A meltdown just now would really hurt.
They offer you pain relief, but you know how sensitive you are to medications. You really don’t want to add vomiting or a comatose state to your issues.
You can’t explain that just now, though. Too many words.

Oh God, they’re touching you.
How can you concentrate with all these personal intrusions?
Don’t melt down. Don’t melt down. Keep it together.
Please, stop doing new stuff every minute or two. Just do one big assessment and get it over with. Tell me what’s wrong or send me home.

The doctor calls you in. He’s very young.
He closes the door, which makes you feel uncomfortable, a bit panicky.
He starts asking all the same questions. Don’t they talk to each other, these people?
He starts touching you, asking too rapidly about pain – here? Here? How about here?
You can’t process one touch before the next one assaults you.
He tries to assess your abdomen but you flinch away and guard yourself.
You’re crying, trying to tell him you don’t like being touched.
He stares at you in rank disbelief and says, “but you have kids.”
There’s no way you could even start to explain.

He offers you pain meds. You don’t want them.
You try to tell him how sensitive you are but your words don’t come quickly enough, and he talks over you.  You decide it’s better to just go along with it, have some damn medication. The pain is shocking; it might help.
When you accept, he sits back, nodding.  Smugly?  Is that smug or …? I don’t know – I can’t be expected to read expressions just now, surely.

You take the pain meds when a nurse brings them in, and get sent back out to the waiting room.  You’ve already been there a couple of hours.

You wait.
The meds have made you queasy and you feel heavy, and though it’s dulled, the pain is still there.
You wait.
You’re worried about your kids and the friend staying with them.
You wait.

The lights are buzzing, one of them is flickering. The noise and flickering make you more anxious.
Clattering trollies. Movement, all the time. Medical equipment alarms. The phone ringing, ringing.
The cleaner mops the floor with some foul smelling chemical. The smell lingers long after they’ve gone.
You wait.

You wait there for hours.
Patients who came in after you have been seen and gone home.
Have they even looked at your x-ray yet?
You wait.

It’s getting light outside now.
The pain relief has worn off, but you still feel sick and heavy.
Your head is buzzing from lack of sleep.

You wait.

All the patients from ED have all left now.
People start arriving for Day Clinic appointments.

Finally, the young doctor of the night before comes out, now accompanied by an older doctor. She has just come on for the day shift, and looked at your x-ray.

She calls you back into the consultation room, and explains kindly that you have a tear in the lining around your lung.  It could have been life-threatening, though you’ve been relatively lucky – it hasn’t caused your lung to collapse, or to fill up with blood.
It should mend itself in a day or two, but it will hurt while it does.
You need to be aware of any changes: increased pain, more difficulty breathing.
Come straight back if it gets worse. What, really? Back here? You’re joking.

You ask if you can go home now.  She listens when you explain that it’s been very stressful to be there, and that you hate being touched.
She says you can go.

As you walk out to your car, the young doctor runs out to apologise.
Right now, you don’t even know what it is he’s apologising for, and you don’t care.
You just want to get away from him and go home.

 

* * * * *

The biggest problem with this story is that if you were to ask any group of autistic adults about their health care experiences, this isn’t unusual.

People with a diagnosis of autism die, on average, 16 years earlier than the general population. This is significant. Most of you who live in Australia will have heard of the ‘Close the Gap’ campaign, which aims to reduce the 10 year life-expectancy gap between Aboriginal and non-Indigenous Australians.
If you’re Aboriginal and autistic … well – you can see there’s a lot more work to be done.

Some of this reduced autistic life expectancy is due to comorbid illnesses, which are reported to be particularly common for us.  Some of it can certainly be attributed to suicide – anxiety and depression are extremely common in the autistic population, and mental health services may intentionally exclude autistic clients because the services aren’t set up for them. But a lot of premature deaths can be attributed to illnesses which could have been avoided or treated if they’d been managed earlier. Anecdotal reports of serious illness being dismissed as psychological and referred to a counsellor are common, and might be associated with presentation or communication differences.
A history of experiences like the one I’ve just described can lead people to avoid seeking healthcare in the first place.

Hospitals aren’t set up for autistic people.

The sensory experience alone can mean some people avoid going to hospital when they really need to:
Bright fluorescent lights,
Noises, smells, movement.
People, strangers, touching you, often without seeking permission first
So much sensory input, and no time to process one experience before the next happens.
And if you don’t process it properly, you can’t respond to it properly.  If you can’t respond to it in ‘real time’, it’s much harder to communicate in a way that makes sense to the healthcare providers.
Asking for changes to your environment can be very difficult; it’s hard to explain that sensory input can actually be painful and cause anxiety, and it’s hard for staff to understand this because they haven’t had it explained to them.

Communication, particularly verbal communication, is often harder for us than others even on a good day.  For any formal diagnosis of autism, a clinician needs to identify significant “persistent deficits in social communication and social interaction”.

This means that we often struggle to communicate in the way that most people expect.  Many of us lose the ability to speak coherently – or to speak at all – when we’re under a lot of pressure. This can, of course, cause issues during health assessments.
It also means that a rather large number of us use AAC – Augmentative and Alternative Communication devices, either consistently, or when communication breaks down under stress.  A friend reported that when she was trying to communicate using her AAC device, the nurses didn’t understand, and were very dismissive of her, because if she was able to “play on her iPad”, she obviously couldn’t be too sick…

Auditory processing delays mean that we need longer to process the questions,
to form answers, and to understand the subtext of what is really being asked.
It’s common in an assessment to have questions fired so rapidly at you that you can’t think to answer them.  Hearing and remembering instructions can also be difficult, and this can then be perceived as a problem of compliance with treatments, rather than a communication issue.  All health professionals would do well to remember that comprehension and memory are often affected by illness and distress, and that this can be particularly prevalent in the autistic population.

Other people’s perception of us can affect our health care experiences too.
Although the autistic stereotype suggests we’re oblivious to people’s expectations, many of us are acutely aware of the way we need to present to others, because the way we appear to others can be the difference between getting help and being ignored.
A lot of the non-verbal communication that other people seem to understand instinctively, we have only learned from watching people and practicing what we see until it seems natural.  This means it can be complex knowing how to act in unfamiliar situations.  Medical consults typically occur behind closed doors, so it can be hard to know how to act if you can’t observe that type of interaction.

You don’t want to be presumed to be faking illness when you’re really sick, just because your face doesn’t do what people expect to see. “What do people’s faces do when they have pain? Is this right? Are they going to think I’m faking it?”  Believe me, this can be a consideration, even when you have a broken leg or meningitis.

We can also have an unusual relationship with the pain itself.

Many studies have discussed the different apparent pain tolerance in autism, or as it’s often termed, “pain insensitivity”.  Someone who may be panic-stricken with a splinter, or scream having a bandaid removed may in fact tolerate significant suffering with very few external signs of pain.

This may mean that we *do* actually have a high tolerance for that particular type of pain.  However, it also may mean we’re putting all of our resources into focussing on remaining calm, and not melting down.

It’s one of the persistent problems with the scientific literature on autism that only very recently has anyone actually *asked* autistic adults about their pain experience, rather than relying on a parent’s or carer’s report.

Every autistic person is different, of course, and there may be many and diverse issues affecting our healthcare experiences.

  • Executive functioning issues can make appointments and treatment regimes harder to plan for and carry out.
  • Under-employment is common amongst us. This creates financial stress and reduces our healthcare options.
  • Even the high levels of stress that many of us feel when having to use the phone can be a barrier to receiving timely and effective care.

 

* * * * *

There is a chasm between the understanding of health professionals about autism, and that of autistic people about health professionals’ expectations; this is a true cultural divide, and not just a lack of knowledge.
It seems as if the two groups are each speaking their own language, with nobody to translate because neither group realises that’s what the problem is.
I’d like to suggest therefore that supports for Autistic people should resemble a Cultural Liaison model: people from within the Autistic community using their experience and knowledge to bridge the gap of access – not just to healthcare, but also to employment and education.
So how can we do this?

* * * * *

I am the director and clinical nurse consultant of a relatively new support service based in Melbourne, designed around the Cultural Liaison model, and drawing on my knowledge of the healthcare system, and my insider’s view of Living While Autistic.

My professional background has largely been in specialist palliative care nursing.
A palliative approach is ideal, really, for someone working in such a diverse group. There is – to quote the World Health Organisation –

  • a commitment to “impeccable assessment”, to enable anticipation and early identification of problems early to prevent suffering or distress,
  • an approach which sees the whole person within their own context, rather than a series of deficits, and
  • acceptance of each person’s way of walking their own life’s journey.

This service uses that commitment to impeccable assessment to explore each person’s specific struggles and barriers, along with their strengths and coping mechanisms to provide suggestions and support to improve their healthcare experience.

The initial assessment takes around an hour, using a validated assessment tool developed by Dora Raymaker and her colleagues at AASPIRE.
I meet with the autistic client – and a friend or carer if they prefer – usually in their own home. I can also do assessments online. Wherever possible, I communicate directly with the autistic client, rather than with carers.

Following the assessment, I provide reports.

The first simply outlines the assessment conversation as a reminder to the client, allowing them to review what we talked about.

The second report makes suggestions for the client themselves, such as how to keep a journal of symptoms and changes, or to access hospital transport services.

The third is for health professionals, explaining the client’s needs, and describes how they can make reasonable and achievable adjustments to meet them.

Following this assessment, I can liaise between autistic clients and their health professionals as a “cultural interpreter”; decoding the knowledge, needs and expectations of each group.

I will also provide education for health professionals, describing the lived experience of autism, explaining why it is to their benefit to understand and to provide accommodations for autistic people, and exploring ways to think creatively in providing safe environments for autistic patients.

Finally, and most importantly, for any health professionals reading this: Your autistic patients need you.

We are, on the whole, competent and able to understand you, but our experience of healthcare is different from most of your other patients.
Trust your patients.
Presume competence.
Include them in any conversations affecting them.
And most importantly:
Listen to them.

Autism Acceptance Month – Day 8

Forgive me, gentle reader – things got out of control yesterday.

TEST PATTERN

Yesterday was meant to be a celebration of Actually Autistic bloggers.  Lists of Actually Autistic bloggers abound just a Google search away, so I will link to a couple of these.

https://anautismobserver.wordpress.com/ – A quite extensive list of blogs by Autistic authors; some about Autism, some not.

https://the-art-of-autism.com/best-on-the-web-autism-blogs/ – A shorter list, which contains good resources for learning more about Autism, particularly from a first-person perspective.

 

There are many others that I could provide for you, and probably will.  But not tonight.