Men take shortcuts; women follow well-known routes. As they fight.

Source:  Telegraph

It's estimated that the average man will drive an extra 900 miles

during his lifetime because he is lost.  Actually, it's because his

loving life partner is ripping him a new one and he's too busy 

defending himself to watch where he's going.  From The real
reason why men get lost and never ask for directions 

We really don't need research to know that -

1. men prefer to take spontaneous shortcuts, while 
2. women tend to use routes they know. Or that
3. to the undying annoyance of women, research shows clearly that men navigate more efficiently than women.  (Yes, research shows this to be true.)
4. However, this efficiency is tempered by the fact that men frequently get lost on a short cut
5. which men consider an adventure while
6. getting lost when you could have stopped to ask directions really pisses her off.  We also instinctively know that  
7. men and women tend to fight bitterly about how to get from point a to point b. ( I once traveled across country with my parents.  I'm still in therapy some sixty years on.)
8. Finally, male female navigational differences are the basis of much enjoyable comedy.

I would love to see a reality television show, Travel Court, in which a cameraman and presenter sit in the back seat while a normally stable, loving couple make their way across country for a well-deserved vacation.  They could cut to commentators such as psychiatrists, traffic court judges and emergency medical technicians analyse what they hear.  Bookmakers could establish odds on when physical violence will break out or if they'll actually make it to their destination.  Best of all, viewers could place bets in those states that allow sports betting.

It would be a big hit.

Here's the research -

*  *  *  *  *

Men take shortcuts, while women follow well-known routes

When navigating in a known environment, men prefer to take shortcuts to reach their destination more quickly, while women tend to use routes they know. This is according to Alexander Boone of UC Santa Barbara in the US who is lead author of a study that investigated the different ways in which men and women navigate. The research is published in Springer's journal Memory & Cognition.

Boone and his colleagues set out to measure the navigation styles and strategies used by men and women to reach a specific location in an area that they know. The team conducted two experiments involving students who performed tasks on a computer. In the first experiment, data were analysed from 68 participants who familiarized themselves with the layout of a maze including specific landmarks before having to find their way through it from designated spots. They also completed questionnaires which provided self-reported information about their sense of direction, the strategies they believe they use to find their way, and whether they often play video games.

The second experiment drew on data from 72 participants who used the same computer software and hardware as in the first experiment. However, this test involved using different versions of the maze: one with distal landmarks such as trees in the background, and one without distal markings. Boone and his team wanted to find out how men and women used these markings when navigating.

"As predicted from previous research, these experiments showed that men were more likely to take shortcuts and on average reached their goal location faster than women. In contrast, female participants were more likely to follow learned routes and wander," explains Boone. "In both experiments, men were significantly more efficient than women, even after controlling for the effects of strategy."

The study also confirmed the large difference in efficiency with which men and women navigate which was measured by looking at the time it took participants to reach the goal locations, and whether they reached it by following a direct route or not. The participating men were better at this task and therefore reached the intended destination more quickly. However, it is important to point out that these are differences in average performance between men and women, and some women were just as efficient as the best male performers.

"Overall, our research indicates that the sex difference in navigation efficiency is large, and is partly related to navigation strategy," says Boone.

According to Boone and his colleagues, when a person wanders it suggests that he or she does not have adequate knowledge about the specific landmarks in a certain area. He says that the finding that women tend to wander more might reflect a possible inability on their part to learn the layout of an area, at least with the amount of familiarization they receive in this experiment.

"It is also possible that the sex difference in efficiency is due in part to facility with the interface or navigation in virtual environments, as men tend to spend more time playing video games," speculates Boone.

Therefore the researchers believe that it will be important in future research to examine whether the same results are found when people navigate in real environments, rather than virtual environments.

Story Source:  Materials provided by Springer.  Alexander P. Boone, Xinyi Gong, Mary Hegarty. Sex differences in navigation strategy and efficiency. Memory & Cognition, 2018.

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An Autistic Burnout

Content note: This post discusses suicide and suicidal ideation (thinking about suicide).

Photo © Lee | Flickr/Creative Commons
[image: Photo of end-stage burning match.]

Kieran Rose
www.theautisticadvocate.com

I've struggled massively with writing this.

It's ironic really.

It's taken me six weeks to start writing an article about Autistic Burnout, because I'm going through Autistic Burnout...

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person?

The sad truth is that so many Autistic people, children and adults, go through burnout with zero comprehension of what is happening to them, and with zero support from their friends and families.

If you're a parent reading this, I can confidently say that I bet that no professional, from diagnosis, through any support services you're lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is.  If you're an Autistic person, nobody will have told you about it either, unless you've engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person. It affects us pretty much from the moment we're born to the day we die, yet nobody, apart from Autistic people really seem to know about it.

I had some parents come to see me. It was just a chat, their little boy was struggling in school, and they were looking for some advice. Somehow we got onto talking about my own experiences at school, then onto my suicide attempt at fourteen (which I describe in graphic detail in How to hide your Autism and An Autistic Education). My story was horrifying enough to them, I imagine—but I think what horrified them most was what had led me to place in the discussion: They'd never heard of Autistic Burnout.

When I described to them what autistic burnout is, they actually recognised a recent episode where it had occurred with their son. And the more they looked back at his life, the more they started to recognise a pattern; they started to see how life for an Autistic person is really a series of peaks and troughs. They now see how frequently he has been through burnout, and how they had pushed him to keep going through each episode, unwittingly, when he had no way of communicating what was happening to him.

So, what is Autistic Burnout?

Firstly, you may have heard of something called Autistic regression. Autistic regression, which in itself is a horrible name and a terrible descriptor, is often described around the time a child is diagnosed, or as the reason to seek diagnosis.

A parent may describe the child as losing some or all of their verbal communication ability, for any person of any age they may appear more 'typically Autistic.' As a child, milestones they had passed—walking, toileting, verbally communicating, may revert back to a pre-milestone position. The name Autistic Regression is completely wrong, though, as it does not take into account that it can be—and is often—temporary, and it is part of the ebb and flow of Autistic life, caused by the impact of society and the environment the person lives in, and it is not a permanent return to a former or less developed state, as many would have you believe.

There are, in my opinion two distinct types of Autistic Burnout that feed into each other.

The first is often termed Social Burnout. This is a frequent occurrence: where just your day, just living, talking to people, being assaulted by senses, exhausts you to the point where you can only collapse in a heap at the end of the day, or at the end of the week, depending on your constitution (remember this won't be identical for everyone, but it certainly will be similar). This can happen at any stage, from infancy through old age.

The bell rings for the end of the school day, the children are filing out of school, so I duck out into the woods and light a cigarette.

I need the noise muted and filtered; the wind does that, carrying the hubbub of the end of day away from me—I'm an expert at this by now, staying downwind of noise. My whole body is tired, lead boots weighing me down, my brain slowed distinctly, reactions are slack.

A day of talking and socialising—Conversations with adults and children, timetabled and spontaneous. Running the conversational scripts in my head to full capacity all day long. 

Surrounded by noise; screaming children in the playground, shouting children, singing children, musical instruments, banging and clashing, the general commotion of the classroom; and over the top, the dumpf-dumpf-dumpf of my heart in my ears and in my chest. 

The strip lights overhead, flickering constantly in pulsing waves, each one shooting through my eyes and down through my body; I can physically feel each pulse humming and vibrating. 

A vast array of colours and patterns on the brightly coloured walls, covered with brightly coloured work. The sun glaring through forty year old, grimy windows, diffracted around the room, while a billion dust particles dance captivatingly, confusing my already overwhelmed eyes. 

And over the top of it?

Masking.

Suppressing my reaction to all of this, the urge to scream and scream and scream till I explode—wanting it all to go away. My face is still, good eye contact made, no matter how much it hurts, being touched constantly, leaving my skin feeling like it has been repeatedly pressed by a molten hot branding iron. 

It's not over yet though. 

Three quarters of an hour of tidying and prep for the next day and it's time to leave. I get a lift with a colleague as the buses are so infrequent, so I have to maintain conversation. My colleague is lovely though and can generally sense somehow when I can't speak, and a ten minute car journey often passes in a vaguely comfortable silence. It's sometimes like a tiny piece of decompression time before i get home. 

When I get home there's nobody there. Sometimes turning the key in the lock is the hardest thing to do, it's so heavy. The weight of the bag on my back pulling down.  My lead boots heavier and heavier. 

I get through the door and drop my bag. I crawl and stumble up the stairs and make it to the bedroom, collapsing on the bed without even the energy to remove my shoes, my eyes are heavy, exhaustion pulling my lids shut. 

Several hours later when Michelle comes home, she finds me and wakes me. I have enough energy to make it through the evening, just. My conversation is muted though, like when someone asks a child what they did at school and they reply with 

"Nothing." 

I want to respond, I want to engage, but I have neither the ability or the energy.
I'm 26 and I've been doing this for as long as I can remember, practically every day the same.  

The days when i can't do it, when I can't collapse in a heap, the worse it is the following day... 

Three years diagnosed and I have no idea what is going on, this is my normal.

Can you imagine this, day in and day out—this is just everyday life, and this was pre-me having children. I've got three children now and they are the light of my life, but how they have impacted my ability to recover day after day is immense. I could no longer collapse—I didn't have the capacity.

The responsibility of having one, then two, then three children led me to have to Mask and suppress even more, fight through and resist the extreme, overwhelming shutdown my brain and body wanted to go into.

This has become a sick joke to me.  When people message me and ask me how I am, my response is:

Image courtesy the author
[image: Graphic of a computer error message: A white rectangle with an
icon representing a "sad" page at the top, followed by dark gray text
reading, "Unable to connect to the proxy server", followed by smaller
underlined gray text representing a link, reading, "Details".]

Autistic Burnout is exactly that;  The shutting down of mind and body.

If you've ever had a problem with a computer and it's had to go into safe mode, that would describe what happens to the brain: it runs on limited function, not all services are available, and its access to the Internet (my Rolodex, as I described in The inside of Autism: The world inside my head) denied and unable to connect. No little white bars to indicate how strong or weak the signal is, because it's just not there.

Physically I often imagine this as the need for hibernation, where the body effectively stops all but the most important functions, the heart rate slows, and breathing distributes evenly and slowly, hovering on the precipice between sleep and death.

Except through this all, you are awake and expected to function, expected to get on and live your life, so you repeatedly go back and do the same things over and over again, put yourself through the exact same scenarios that caused you to feel like this in the first place, rinse and repeat.

Another aspect of this is that Autistic people, for some reason, possibly related to Masking and wanting to fit in, can be incredibly eager to please. Part of that eagerness, especially for those who don't fully fill the Pathological Demand Avoidance profile, is often an inability to say "No" to people.  So we take on more and more, we allow our plates to get fuller and fuller, our anxiety heightens, our sensory processing becomes more difficult to maintain, our Executive Functioning abilities spin out of control and again this attributes to burnout. We often aren't terrific at juggling plates.

Jeanette Purkis, who is an Australian Autistic, an absolutely wonderful writer and a Member of my network organisation, The Autistic Cooperative, has written an excellent piece called "‘Too Nice’: Avoiding the traps of exploitation and manipulation." In it, Jeanette says:

"There is an actual concrete reason that we tend to be taken advantage of and it starts with the difference in communication between autistic people and neurotypical people. Autistic communication is generally on one level. We are honest, up front, and do not often do things like manipulation and deceit. We generally do not lie—although many autistic people are capable of lying if they feel the need—but usually it doesn’t come naturally. 

Neurotypical people (or ‘allistics’ if you prefer) operate differently in how they communicate. Their communication tends to happen on more than one level. It can be seen as the difference between visible light and infrared light. If you can only see visible light then it is hard to imagine what infrared looks like, even if you are aware it exists."

These differences are not visible to an unaware or undiagnosed Autistic person, so it leads not only to the full plate, but offers up the Autistic person to all levels of potential abuse and manipulation through compliance. I could talk right now about Behavioural Therapies such as Applied Behavioural Analysis (ABA) or Positive Support (PBS) and how they take advantage of the Autistic being eager to please and open to manipulation, but I'll save that for another day.

I mentioned in An Autistic Education, about the fallacy of parents repeatedly sending their children into school, making the same mistake over and over again, watching their child crumble before their eyes, yet unable to break the cycle even though they can see what is happening to them: 

You have to go to work, as much as you have to go to school.

Society demands it.

Society demands compliance.

Autistic people are doing the very same thing. We repeat processes constantly which wear us down mentally and physically constantly, each day, without a break. Some undiagnosed people unwittingly develop strategies to cope with this, the Mask again, rearing it's head, but it all catches up eventually.

And all because we're made to think that we have to. 

This is what people do...

Society demands it.

Society demands compliance.

As I mentioned earlier, burnout covers all age groups. Autistic babies suffer Social Burnout as much as children or adults. Babies who do not wish to be touched, babies who are forced into eye contact, babies who are picked up and manhandled, babies who have even less of a filter than Autistic children or adults to block out the overwhelming sensory sensations they are put through.

So, if this is the every day normal for an Autistic person, to one degree or another, from birth to death, what happens after an extended period?

The second type of Autistic Burnout.

You crash, and you keep crashing.

If you imagine everything that I have described above, the shutting down of mind and body, but imagine it occurring over a period of weeks, or months, or even sometimes years.

This is extreme Autistic Burnout. It's usually the result of the day-to-day overwhelm combined with an event or trauma, or typically the weight of life building to a point where the Autistic person has to cease to function.

When I was fourteen, my Autistic Burnout was triggered by a combination of things. I'd reached the end of my tether with school—I just couldn't hack it any more, couldn't hold in the pain it was causing me any more. I was in a constant state of sensory overwhelm; I was isolated, confused and didn't know what was happening.

My Grandfather had recently died too—which was a massively life-changing event for me. 

I've mentioned that touch burns me? 

Well at that point, the only person on the planet who could touch me without it hurting was my Grandfather. Albert Ferguson was the kindest, cuddliest man I have ever known. I remember my eldest sister (who is also Autistic) and I were forever clambering over him, rubbing his shiny bald head, breathing in the smell of his tobacco and 'two fingers' of single malt whiskey. I'd lay there silent in his lap for hours while he'd regale me with regimental details, battalion names, and numbers from his time in Burma during World War II—and days later he'd test me on those details, delighted when I remembered them correctly.

When he died he left a huge gaping cavity in my heart and my mind. 

One of the worst parts was that he was hospitalised for a long time before he died—months—and I was not allowed to see him. I was desperately sad that he'd gone, but I also incredibly aware that now I had nobody to touch or be touched by. I resigned myself to a life of pain at that point, could not conceive that I would ever find anyone else who wouldn't physically hurt me.

So this combination of grief and sadness, along with the overwhelming confusion of not knowing what was 'wrong' with me, why I couldn't really connect with anyone, why people singled me out or played tricks or used me, of what the hell was wrong with me and why I just kept hitting this wall over and over again, was what led me to crash and burn out. My physical body and mind started shutting down. I could feel each system in my body closing off as gravity got heavier than it had ever been. I didn't know what to do, did not understand what was happening to me, and I had no way to communicate this.

It was like a switch had gone off, my verbal ability to convey what was going on in my mind and body was gone.

I did not want to die, I've never wanted to die.

I needed to step out. 

I needed to remove myself from the environment and take myself elsewhere;  I needed to escape.

But the only way I knew how to do that was to die. So I tried.

And what I was feeling was not depression, I know that now. 

Some researchers are starting to listen to Autistic people and are starting to recognise that clinically, Autistic Burnout shares a similar presentation to Depression, but is a completely separate thing. They are seeing how Masking, or Social Camouflaging has a distinctive lead-in to the high autistic suicide rate, and also ties into other mental health issues that are identified—sometimes wrongly—in Autistics, and also how a lack of Autism Acceptance plays a huge part in mental health too.

The lack of distinction between Autistic Burnout and Depression; In fact the lack of recognition of Autistic Burnout at all, outside of the Autistic Community, has caused many problems for Autistic people. Many who have been identified as depressed have been and still are being put in psychiatric units, psychiatric care, drugged and then have developed Mental Health issues—when really what they needed was major sensory withdrawal/stimulation (depending on the person), acceptance, understanding and rest.

I'd been taken to the doctor multiple times by my Mum, and had been on various types of antidepressants from the age of twelve, which, looking back, is actually quite disturbing—but probably indicative of a time where so little publicly and medically was known about mental health, let alone Autism.

I cannot emphasise enough how important it is to make the distinction that Autistic Burnout is a separate thing from Depression and how important it is that Autistic Burnout starts being recognised and addressed in Society.

None of this is meant to imply that an Autistic person cannot be depressed—that is not the case at all.

Along with the things that cause anybody to be depressed, prolonged burnout can definitely lead to a depressive state, as indeed can a lack of Acceptance. It is hard for that negativity to not be absorbed, especially by people who are emotional sponges and highly reflective of the emotional state of people around them.

This is also definitely not to say that a suicide attempt comes along as part of the package of Autistic Burnout, because it doesn't always. I've had periods of intense burnout where I haven't taken that measure. It is however indecently common amongst teenage Autistics diagnosed or undiagnosed; and those who are diagnosed Autistic later in life.

Recent studies show that prevalence of Suicide attempts amongst Autistic people stands at 35% of that population, with suicidal idealisation at 66%. We also know that approximately 10% of all suicides are by Autistic people—bearing in mind we only make up 1% of the population, supposedly. I would hazard that the rate is higher in reality.

I'll talk a little more about suicidal idealisation later.

***

Extreme burnout comes fairly regularly during an Autistic's life, and there is a school of thought amongst the Autistic Community that when Autism first becomes 'apparent' to parents who don't know what they are looking for and have zero frame of reference—you know, the old "They were a perfectly normal toddler, then they had their MMR..." that the child is undergoing Autistic Burnout, and that their apparent "Autistic Regression" is because they have had some kind of event—starting nursery, going to school, home life changes, something sensory—it could be anything for each individual child, some major (to them) change that has overwhelmed them to the point that their Mask (which starts establishing itself very early on) has completely dropped off.

The Mask coming off is exactly what happens during the Autistic Burnout period. Your Autistic traits become more obvious as your brain goes into Safe Mode. You may become more inflexible, your ability to 'mock' making eye contact may disappear completely, your ability to socialise may be drastically reduced or go completely, you may sleep more, want to be on your own more, and bury yourself. Life just gets significantly harder and gravity, as I mentioned before, just pulls you down more and more.

I've left my job. 

Well, my job has left me. 

I was happy there once, for a long time. Then the rumbles of change started, people losing their jobs, major restructure. 

My performance dips, I grow tardy and try to cover it up.  It's halfheartedly noticed and commented on, which just makes my anxiety worse, everyone really is too worried about their own jobs though. 

I spend day after day not doing anything, other than pretending to work, because I'm not coping. My life is spiraling out of control and all I can think about is the look of horror on my Wife's face when I tell her I'm jobless. 

The lack of communication, the vague realisation that the people you work with, the people who have actually helped make life feel sort of good over the last few years are my competition now. All of a sudden it seems like everyone is Autistic, nobody makes any eye contact with each other. 

My replacement, from elsewhere, sits opposite me, I'm to train him. 

I'm offered my job, but a long way away. It feels like the final slap in the face. They know I'm Autistic, they know I have Meniere's disease and can't go that far on the bus—what'll be a two hour journey every morning and night. 

I walk out. I ride the bus home. I go to bed. 

I don't know what to do.

Then the click. The flick of the switch. I feel it deep inside me. I recognise it with abject horror, i remember the feeling. I remember the lack of self control. My mind goes into Safe Mode. 

What to do? How do I explain this to Michelle. I clutch at my throat and my words are gone. 

They come back a time later and I'm able to tell her. 

The horror I imagined was there.

But also love, so much love in those deep brown eyes.

I was safe in them. The only eyes I've ever been able to look at.

Eyes I can distinguish the patterns in and lose myself in.

I clutched her tight and the Mask dropped off.  

I heard it slide to the floor and crack in half.

The next few months were like wading through treacle, physically, mentally, and emotionally—but equally I was wound tight as a spring. My sensory sensitivity was incredibly heightened, I couldn't tolerate noises, smells, too fast movement, anything really.

Doing the simplest of things exhausted me, and still at that point I had no real understanding of what was happening to me. I was an Autistic man on anti-depressants for the umpteenth time of my life, completely not depressed, but not knowing how else to explain it.

The truth is, I was relieved not to be at work—it gave me the opportunity to switch off, which I needed, desperately. Had it not happened I think I may have looked at the suicide option again.

As it was around nine months later I started to wake up again—my mind and body felt more alert than they had in years. 

Michelle and I have talked extensively about that period, and the period after. and she sees the difference in me. She recognises that I Masked an awful lot with her from the moment we met, despite my attempts not to, and doesn't see it as me lying to her; she understands that I was doing what I did to survive, and often unconsciously.

My period of burnout saw me unable to function really at all. I was kind of a vaguely absent father—there, but going through the motions, rather than actively engaging.

We struggled financially, I started proceedings for constructive dismissal, but was so crushed and lethargic, and the proceedings were through a Council process which was massively bent in the Council's favour, so we gave up.

I can honestly say that those months were tortuous. We came within a hairs-breadth of losing our home. I expected Michelle to ask me to leave and wouldn't have blamed her if she did. But somehow we came through it and I came out of it.

I came out as someone desperate to know what had happened to me. The pieces were falling into place that there must be a better way, there must be reasons.

So I turned online and found Autistic people. I started talking and learning, realising that ideas and narratives that had been floating around in my head actually existed and had names—things like Neurodiversity.

I found the Autistic community.

I stumbled into this world; metaphorically, my eyes shielded by my arm from the glare of Autistic gold shining back at me.

I've not looked back since.

***

I said earlier I wanted to talk more about Autism and Suicide. 

Sadly the two seem to go hand in hand.

But not all suicide amongst Autistic people is directly attributal to Depression, because not all Autistic people are depressed, as I mentioned before.

Earlier I touched upon my experience at fourteen and explained how it was less an attempt to end my life and more being backed into a corner and it being the only way to get away from the situation I found myself in.

Anecdotally, I have talked to a significant number of Autistic people about this (a few hundred) and have found that their experiences matched my own—not only in the 'why' they had attempted suicide, but also in that, like me, they are pretty much constantly thinking about ways they can do it.

The noise of the traffic is too great. 

The cars are screaming past, one of those motorbikes that sound like giant broken hairdryers is gunning its engine unnecessarily. 

The sun is glaring down upon me, the warmth is nice but the light is too bright, too strong and I don't have my sunglasses. 

A throng of people are walking round, I'm like a rock in a river with the current parting round me, but I'm being buffeted and jostled, my body is burning. 

Somehow I'm forced to edge of the street, right to the curb. 

My head is spinning, eyes feel like they're vibrating in my skull, my teeth hurt, everything is building and rising. I look up the road and see a bus coming, no chance of it slowing. 

I step in front of it. 

The world falls silent, everything slows. The bus coming towards me in slow motion, blurred with movement, feet away, inches away, the look of realisation dawning on the driver's face as he sees me, contorting into fear and horror. 

A glance back over my shoulder at the oblivious people, heads down, intent on their journey, not noticing the person about to dissolve into peaceful oblivion. 

Stepping out. 

I close my eyes, my arms open wide, embracing the stillness about to come, a world of soothing dark, comforting silence. 

I can feel the roar of the wind, the roar of the engine comes, the world kicks into normal speed and... 

I'm back on the pavement, jostled and bustled, ears assaulted with noise as the bus speeds past me.

I do this all the time and so do so many Autistic people.  Stepping into traffic, jumping off of things, taking pills, all manner of things.  It ebbs and flows, depending on what your are doing or where you are.

These are not intrusive thoughts, as such. It's almost like they are deviations on a path, where in one world you make the choice to step out and in the other you don't, but you bear witness to both those paths at once, for just a few moments—the intensity of the situation allowing you to witness a shearing of worlds, of universes, where in one you die and in the other you carry on.

We generally don't want to die.

We want to escape.

We want to step out.

The world is an overwhelming place for us—it doesn't have to be, but the way it's set up with colours, noise and lights and people and expectations makes it so.

We lose ourselves in repetitive behaviour, we Hyperfocus, we Stim, we become different characters or act as animals, we script conversations, we withdraw, we hide in worlds inside our heads, we close ourselves off, or equally sometimes explode outwards, we Mask—all in an effort to endure this world we live in, to survive, to find balance with ourselves internally and externally and also, to hide who we we are—to make Non-Autistic people accept us, because we don't find acceptance as ourselves.

This is why we burn out.

***

The warning signs of Autistic Burnout are actually quite easy to spot if you know what to look for, either from an external point of view, as an observer, or loved one or internally, from an Autistic self's point of view:

• A growing lethargy
• An increase in irritability
• An increase in anxiety
• An increase in over-sensitivity to sensory information
• A dramatic decrease in sensitivity to sensory information
• Heightened Auditory processing disorder
• A decrease in verbal language
• A decrease in text language
• An increase in Shutdowns and heightened withdrawn state
• An increase in the frequency and severity of Meltdowns
• A diminished ability for the person to self-regulate their emotional state
• The slowing down of the thought processes
• Brain fog
• Memory loss 
• A decrease in your ability to effectively communicate what you want 
• A decrease in motivation
• An inability to generate momentum of body and of action
• An increase of rigidity, narrowing of thinking
• A feeling like your vision is tighter or narrower
• Extreme forgetfulness
• Extreme overwhelm
• A massive increase in guilt
• An increase in Executive Dysfunction
• An increase in Demand Avoidance

(If you think there are more, feel free to add them in the comments.)

Can you see why Autistic Burnout is often mistaken for Depression?

Run through that list again and apply each of those thing to, firstly, a child. 

Say, one who is ten years old or younger.

How would the symptoms of autistic burnout present? You got it: Bad behaviour, defiance, lack of compliance, willful disobedience, withdrawal, self-harm, depression. Especially, if you consider that any child—across what is a huge age range—is likely unable to be able to express or communicate any of those things effectively—if at all—or why they feel the way they do, or even how they feel the way they do, especially if they are Autistic.

If you consider a teenager, who has a mess of hormones running through them, who is acutely aware of how much they stick out like a sore thumb, whose growing self-awareness—their very sense of self—is being fractured by a combination of everything they are going through in day-to-day life and everything on that Autistic Burnout warning signs list; how does it present? Bad behaviour, defiance, lack of compliance, willful disobedience? Or if they withdraw completely, they're described as Moody, as an extreme Teen, they lock themselves away and become more withdrawn, less social, less able to function. Through it all they are still unlikely to be able to communicate any of this.

Now apply both those scenarios to an Autistic person who is undiagnosed. From the outside looking in, they are behaving 'badly,' 'acting out,' or they are depressive, or angry, so they are drugged and Therapised, or treated to such delights as PBS or ABA to 'improve' their behaviour,' or they're just left to get on with it and kill themselves, or get caught in a cycle of self-harm, or get wrapped up in short bursts of highs to make them feel better, as in drugs or criminal behaviour, as they fight against themselves and how they are feeling—or all of those things.

It sounds drastic doesn't it? 

Yet it's happening every day. 

Mostly because people do not know or understand 'why.' There are a myriad of reasons so many Autistic kids (diagnosed and undiagnosed) are in the young offenders system, and then further on, Autistic adults in the Prison system.

***

So what can we do to to ward off Autistic Burnout and what can we do to mitigate it once we're in it?

Firstly, acknowledging and accepting that Autistic Burnout is a thing, and you or your child will go through it—Social Burnout pretty frequently, and Extreme Burnout at least a few times in you or their lives.

On a basic level, allowing periods of withdrawal, or decompression time at the end of the day, or even throughout the day can make a big difference. Time where the child can effectively take time to process what has happened throughout the day, shut off external sensory stimulation and basically be inside their own head for a period of time. You may also find that this helps with the level of and freqency of Meltdowns that occur. Especially if you or your child Mask and do the "Coke bottle" thing of bottling up everything all day and exploding at home.

Adults and children both need to proper time to withdraw. So even at Social events or Social Situations, having an escape plan is vitally important. A reason to leave, either completely or temporarily, a quiet space or bolt-hole to enable whoever it is to just have some time away from people.

It's really important to recognise also, that after significantly stimulating or potentially overwhelming events or periods, that the person may need a day or two off of work or school. This may not be realistic, but it is effective. Allowing this decompression time is incredibly important. It allows the Autistic brain and equally the senses, an adjustment period to reestablish whatever the person's brain or body considers normal parameters. 

If the person is of school age, then it will definitely depend on your relationship with the school and how frequently they need decompression days, but my philosophy is generally that my child's mental and physical health is more important than a day at school—if they need a decompression day, they take it. 

If I need to be fined by the school, then so be it, but I'd love to see someone try.

Work may be a little more difficult but, again, it depends on how good a relationship you have with your workplace. If for some reason you can't take a day, then taking as much free time to yourself as you can, with as minimal mental and sensory stimulation as possible is the best you can do. It won't be enough forever though.

Once you're in burnout, you need to learn to recognise and accept that you are in burnout. 

There isn't a huge amount you can do beyond throwing away that Mask as soon as possible and taking as much space as you can get with as minimal sensory input as possible. Some people find that doing hands on tasks helps them; others go for long walks, or immerse themselves in books and films.

Sometimes it drags on and on, sometimes you can see it coming and not be able to stop it.

The period I'm in now was triggered by me, if I'm totally honest.

Autism Awareness week in the UK was, this year (2018), incredibly busy for me and so was the week preceding it.

I established a working relationship with the North East Autism Society earlier in the year and they asked if my family could be their campaign—so, hours of filming, I blogged everyday, I made videos for the first time, spoke on various radio stations, we featured across several newspapers five or six times over the course of the week, plus I also had a trip down to London for the launch of the Westminster Autism Commission report on harmful interventions, plus had to respond to the hundreds of Tweets, Facebook Comments, messages and emails that were thrown at me.

All in all I threw myself into the whole week.

If you've gotten this far down this article, you can probably imagine by now what I felt like after all that. I have written the majority of this article in one day, for the last six weeks since Autism Awareness Week, I've written nothing, not a word.

As I said at the beginning, the irony being that I wanted this to be about burnout, yet didn't have the strength to write a thing.

***

The biggest thing of all you can do to prevent, or at least mitigate burnout, is to start identifying what you do when you Mask and stop.

Even just little things like eye contact, which so many of us do, or at least pretend to do.

Allow yourself not to be sociable if you don't want to be.

Give yourself permission to duck out of situations you can't cope with instead of pretending you can.

Got something important to do? 

Cut out as much of the other crap as possible—give yourself a break, go hole up in a cupboard under a blanket for a few hours, or alternatively, if you are able, go and run or cycle really, really fast (sometimes the wind rush can literally help clear away the cobwebs because so much sensory information is cut out).

A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference to your life, or the life of your loved one.

The biggest thing of all you can give yourself, or your loved one, is time.

I've experienced Extreme Burnout probably four or five times in my life, lesser burnouts a significant number more, and social burnout pretty much daily. The biggest thing that has helped me avoid and mitigate burnout is learning about myself, and the way I have done that is by connecting with the Autistic Community.

I have learnt to understand the 'why' of why I react to certain things in certain ways, I've learnt to understand 'how' to best avoid certain situations or to shield myself from them with Masking.  I've been supported into learning how to Accept myself and shuck off, to a certain extent what has been thrown at me.

Autistic people have the tendency to want to pull people together because of their similarities, not push them apart because of their differences; we are accused of wanting to be solitary, of not wanting to be around people, when we have one of the strongest Communities I have ever witnessed.

The Autistic community is there waiting to be accessed by Autistic people and their families alike; a font of deep knowledge, a library of cross-referenced and correlated information about Autism, that you will not find coming from an Autism 'Expert' or 'Professional' and you will certainly not find in the DSM 5 or ICD 10/11.

Autistic Burnout is one of those things you will not learn about from Professionals, yet Autistic Burnout leads to death. How horrifying is that?

So please, play your part today and help yourself, or your Autistic loved one to recognise it and take appropriate steps to stop it.

Help save a life.

I'm coming out of my burnout period. I feel like mentally and physically the fog is lifting—I'm starting feel like gravity is slightly less effective than it has been, I'm still exhausted and have been sleeping sometimes 14 hours a night—which is bizarre for the person who has spent his whole life averaging four to five hours a night, and actually has made me more tired than refreshed I think!

I know the burnout is coming to an end because I'm writing again. It's taken me six weeks of staring at a computer screen and writing nothing. Yesterday I wrote most of this in about three hours. I'm on an upward trajectory again and it feels good. Still not quite there though, my Executive dysfunction is still playing merry hell—I've been tinkering with this essay now for five days!

Sometimes knowing what you are experiencing makes the experience less frightening and easier to manage, and offers you a level of control over the situation. Expecting that burnout will happen helps too.

If society changed to accommodate Autistic people, our lives would be a lot easier. Instead though, for the most part we are still expected to change ourselves completely or play catch up—so if there are ways where you can make your life easier, and not damage yourself in the process as with Masking, then I recommend you do them. There is rarely support for this, except from Autistic people, or if you're lucky enough to have understanding family—so self-care is your priority.

A key thing to remember here, because there are proponents of a theory that much of what is identified as Autism is actually the descriptor to a response to lifelong trauma, and I know that much of what I write here could be seen to be backing up that theory:

As a disclaimer: That theory could not be further from the truth. Trauma does play a huge part in the the Autistic upbringing and life, but that feeds into Anxiety. Autism itself is determined by Neurology. Our Neurological functions are different from birth, our brains work differently. Trauma does not play a part in shaping our basic Neurology; trauma plays a part in shaping our personalities. Autism is Autism.

Autistic Burnout is real. It exists.And it plays a huge part in taking our lives.

Repeated short term burnout is completely unsustainable and has huge long-term implications.

So please, whatever you do, take care of yourself.

Kieran.

***

Some other links about Autistic Burnout:

The wonderful Amythest Schaber: What Is Autistic Burnout?

The brilliant Ryan Boren: Autistic Burnout: The Cost of Coping and Passing

The excellent Judy Endow: Autistic Burnout

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SUICIDE RESOURCES

Anyone who is feeling suicidal may receive immediate help by logging onto Suicide.org or by calling 1-800-SUICIDE. Suicide is preventable, and if you are feeling suicidal, you must get help. So please visit Suicide.org or call 1-800-SUICIDE immediately. Please also know that you are not alone.

MHAutism, which focuses on mental health for autistic people, has developed a Safety Plan, which allows those who are vulnerable to plan for when and if they experiencing suicidal thoughts, and also to record information to help other people provide supports.

For autistic people seeking specifically autistic perspectives, please read our archive posts below. While aimed towards younger people, they discuss getting through the kind of tough times familiar to autistic people of any age who have been conditioned into negativity:

• For Autistic Teens Feeling Doomed or Broken 
• Advice to Young Autistics: Stick Around and Become Awesome

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A version of this article was previously published at www.theautisticadvocate.com. 

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Why I Hate ABA: A Personal Opinion

Cos Michael
www.autismage.com

Cos Michael | photo courtesy author
[image: Photo of a white British woman with
short-ish curly platinum hair.]

ABA (Applied Behavioural Analysis) as a discipline, requires autistic children to appear as if they are typical children. It doesn't matter how kind and well meaning the teacher, whether they are autistic or not, a loving parent or not—the outcome is that the "successful" autistic child ceases the behaviour that defines them as autistic.

They never stop being autistic.

Once you realise that an autistic child will never stop being autistic, it becomes clear that they are suppressing their natural responses. It is masking, or "camouflaging." Asking a child to mask all of the time causes a build up of stress. Stress is both mentally and physically damaging. When that child grows up, they are likely to exhibit the mental and physical effects of their stress.

Autistic people are not born depressed or anxious—yet most of us acquire these conditions as we grow up. We suffer the physical manifestations of a life of stress; obesity, diabetes, gut problems, heart problems, self harm: the suicide rate of autistic people is nine times that of the general population. Try to link cause and effect.

The other horror of ABA is that, by training the child to obey instructions that run contrary to their instinct, you are, deliberately—for the purpose of ABA, but by default in other areas of their lives—teaching autistic children that they cannot act on instinct, but must obey the nice authority voice. You are raising vulnerable children to be prey to every predator with a nice authority voice. Would you do that to a child of yours? Or trust a clinician or therapist to do it? I don't think so.

That is why this autistic adult hates ABA.

Most autistic children grow up, learning from the world around them, just as other children do. We learn to cope, to trust ourselves and to find a way through. We may need more help in our early years, while we struggle to "learn the world." We may need adjustments for the whole of our lives, for some things, but that's OK—you don't expect blind people to navigate without aids, do you? Adjustments are made for all sorts of disabilities.

Many of us will tell you that a major disabling factor for autistic people is the ignorance or intolerance of others. Communication works both ways, yet it is us who are expected to adjust, all the time.

Environments that suit us will suit others too—autistic people aren't the only ones who find noise, crowds, smells, bright lights, etc; difficult. ABA training to adapt doesn't in any way help us adapt—it forces us not to complain about the routine sensory punishment beatings we take because we are autistic and society is inflexible in its attitude.

ABA does not teach children to be typical. It teaches children to act "normal," all the while inhibiting them from finding their own normal. Rather than training us, we want those who would change us to examine their own motives, because ABA is not beneficial to autistic people. ABA absolves worried parents who live in an intolerant society from having to accept the reality of who we are. And it makes an awfully big profit for those who live off providing it.

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Autistic Commonality and the Illusion of “Quirky”

Emily Paige Ballou
chavisory.wordpress.com

Some people insist on describing the autistic spectrum as ranging from the non-speaking and very profoundly disabled, to the “just quirky.” Or, during discussions about the need for acceptance and accommodation, the same people might tell autistic self-advocates, “That may be fine for autistic people like you who are just quirky, but you're not like my child.” Some of those same people even insist that autistic people who are “just quirky” should probably have a different label than 'autism' altogether.

Meanwhile research shows "camoflauging" influences autistic suicidality
[image: Screenshot of a tweet. The icon and user name are blurred. The tweet
reads, "If u can"disguise" your autism then imo u cannot possibly have autism.
#NeedRealDiagnoses #SuckItGroupingEveryoneUnderOneLabel
#FocusOnObjectiveReality"]

But I actually wouldn’t mind if the word “quirky” were to disappear entirely from autism discussions, and take with it the dismissive and simplistic idea that autism is a condition with only two manifestations—the genuinely disabled, and the "just quirky."

Because no autistic person is “just quirky.”

Autism has specific diagnostic criteria. Though these criteria have changed and broadened since autism first appeared in the DSM in 1980, the more important changes leading to autism's diagnostic explosion hinge on discrediting outdated and invented prejudices about who can and can’t be autistic. At various times, it has been believed—implicitly or explicitly—that people who could not be autistic included adults, women and girls, people with intellectual disabilities, people without intellectual disabilities, people of color, children who ever spoke, children who toe-walked, people with ADHD, and people with virtually any other identifiable anomaly of brain physiology.

That is a lot of autistic people who were simply excluded from diagnosis by completely arbitrary factors having little to do with the nature of autism itself.

And while it is reasonable for people to debate about exactly what form autism diagnostic criteria should take, “quirky” has simply never been among those criteria.

No one is diagnosed with autism on the basis of being “just quirky.” That’s a characterization far more likely to be used to deny a diagnosis to women, girls, female-presenting and gender non-conforming people, as well as those who don’t fit other common stereotypes or more conventionally accepted presentations of autism.

When I’m talking about our need for acceptance and respect as autistic people, I am not talking about being quirky. While I do have traits that I suppose could fairly be considered “quirky,” like an affection for knee socks and collage art and eating breakfast food for dinner, those are not what I’m talking about when I’m talking about being autistic.

When I’m talking about the challenges posed to me by inertia and task-switching and significant motor planning issues, I’m not talking about being quirky.

When I’m talking about whole-body nervous system pain from sensory overload, I am not talking about being quirky.

When I’m talking about language processing differences that can leave me feeling like I’m speaking English as a second language compared with NT peers, and that I can command the physical and mental effort required for speech for a cumulative maximum of two hours per day under most circumstances without becoming physically ill, I am not talking about being quirky.

When people use “the voice” on me, treat me like I’m invisible, or grab things out of my hands at work, that doesn’t happen because I’m quirky.

And I’m sure not talking about being quirky when I describe being pushed into meltdowns by disruptions to my routines or expectations, or that I grew up to feel not even human or maybe not even real, because I had no other explanation for why I wasn’t like everyone else and everything was so hard.

When people don’t believe me when I say I can’t do something they think should be easy, I don’t think that’s because I’m quirky.

No, it’s because I’m autistic.

This doesn’t mean that I’m exactly like every other autistic person, but no person is exactly like every other person in a designated group, autistic or not. All humans, and all humans of various identity groups, have important commonalities as well as whole constellations of different abilities and challenges of varying intensity.

The DSM defines autistic people as having commonalities in social communication issues, restricted interests, repetitive behaviors, and impairments in adaptive living skills. Autistic people, and some of the better autism research starting to emerge, are like to consider those issues as resulting from core processing differences in how the brain governs factors like movement, sensory feedback, executive functioning, and atypical experiences of language.

What autistic people tend to share are those autistic commonalities. What is decidedly not the case is that autistic people with very profound support needs in every aspect of daily life have somehow been arbitrarily assigned to the same diagnostic label as people who are "only" socially awkward.

Autistic people are autistic because we display a common, distinctive pattern of observed challenges across a range of domains. While I think the DSM-5 currently does a poor job of conceptualizing the core features of autism coherently (and that probably contributes to much of this present confusion), many autistic people experience, and conceive of, those observed features as resulting from a deeper stratus of physical and cognitive experiences of the world.

And many of those perceptual experiences are described remarkably similarly by people all across the spectrum. This means that while the expression or “severity” of our challenges as autistic people may vary widely, but the underlying reasons for those challenges often prove similar.  That is why a person who lives with minimal support needs, holds down a job, and sounds “articulate” to your ears, may in fact have the very same disability as someone who needs a high degree of support, cannot speak, or whose movement differences are very apparent.

So, although, for instance, while Leo and I are very different in some important ways, the way his mom describes his physical intelligence and tactile engagement with the world is very familiar to me.

Mel and I are different in important ways, but when sie describes autism in terms of the ecologies of cliffs and valleys, that is very familiar to the way in which I actually experience it.

Julia and I are different in important ways, but when she describes what it’s like to see “someone who moves like you,” that is a feeling with which I am intimately acquainted.

I will never forget when, shortly after I’d been diagnosed and started connecting for the first time with both autistic and parent blogging communities online, the mother of a young man with very extensive verbal communication difficulties described instances when he would suddenly seem sad or even start crying, seemingly for no reason in his present circumstances she could discern or that he could describe. She was wondering whether it could be that he was simply in the grip of a memory so powerful that its emotional intensity was completely overwhelming.  And a whole chorus of about half a dozen autistic adult women—all of us able to communicate in writing, some of us with things like jobs and marriages—replied that yes, that’s something most of us had actually experienced.

An autistic person who has an autism diagnosis had a professional believe they should have that diagnosis for good reason. It’s not that misdiagnoses never happen, but—particularly for those who aren’t white and male or don’t conform to other stereotypes—it is not a particularly easy thing to convince a professional that one is autistic, without substantial proof. Autistic people are, troublingly, more likely to have professionals tell us they “don’t see it” if we’re into English literature or art instead of math or computer programming, or if we display emotion or empathy.

It’s okay to look at one autistic person and not necessarily understand how their experiences compare to those of another autistic person you know. It’s not okay to dismiss that first person's lived experience as having nothing to do with “real” autism simply because you don’t understand what autism is like for them.

In fact, listening to autistic people who have different experiences from the autistic people in your life might present a great opportunity to become more familiar with a wider variety of autistic experiences.

But please know: when I am talking about being autistic, I am not talking about being quirky. If you are, then we are not talking about the same thing.

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We're All Racist.

Yes, actually I am.  We all are.

*  *  *  *  *

How humans repress prejudices

Even people who would describe themselves as liberal

and open-minded might not be free of unconscious racism

A philosopher has used psychoanalysis to investigate why people are often not aware of their prejudices.  Bochum-based philosopher Dr Beate Krickel has used psychoanalysis to investigate why people are often not aware of their prejudices. In her accounts, she has been elaborating how prejudices can become unconscious. 

Tolerant and yet full of bias
A hypothetical example: a white professor describes himself as having a liberal, tolerant worldview. He confirms that it is nonsense and scientifically insupportable to assume that people with different ethnic background have different levels of intelligence. However, the convictions he professes are ostensibly contradicted by his behaviour: he acts, for example, surprised, when a person of colour asks an intelligent question in his seminar. Moreover, his intuitive impression is that his white students look smarter.

Researchers refer to cases when the professed convictions deviate from intuitive behaviour as implicit bias. This kind of bias can be identified using certain psychological tests.

Unconscious or not?
"There's a fierce debate going on in the fields of social psychology and philosophy on whether the prejudices measured with such tests are unconscious or not," says the researcher. The fact that people voice liberal and tolerant convictions in spite of their implicit bias points to "unconscious." However, empirical studies in the past had shown that test participants have the ability to notice their implicit bias under specific conditions. "Interestingly enough, the participants are generally surprised or even shocked once they realise their own implicit bias," says Krickel.

In order to explain these data, the researcher used psychoanalysis. More specifically: she argues that a philosophically informed notion of Freudian repression constitutes a feasible explanation of the apparently contradictory data.

Does not fit the self-image
According to Krickel's analysis, the professor in the hypothetical example represses the emotions that are triggered by his negative associations, because they do not match his self-image. Consequently, he is not aware of his implicit bias. He does, however, have the ability to detect these emotions if the circumstances are right. "The function of philosophy is, first and foremost, to provide an in-depth analysis of what repression actually is," says Krickel. "Based on philosophical theories of consciousness, a feasible model emerges when repression is understood to be an attentional shift that becomes habituated over the years."

Story Source:  Materials provided by Ruhr-University Bochum.   Beate Krickel. Are the states underlying implicit biases unconscious? – A Neo-Freudian answer. Philosophical Psychology, 2018.

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We Unconsciously Pronounce, uhm, Nouns, More Slowly.

Credit: © ALDECAstudio / Fotolia  

Speakers hesitate or make brief pauses filled with
sounds like "uh" or "uhm" mostly before nouns.

Living during the Scientific Revolution is often staggering.  As in, I'm staggered by the incredible breadth of the types of research currently underway.

Spending money and intellectual effort to time how long it takes for people to say different elements of speech in a variety of languages seems pretty damn obscure.  Yet, the result is surprising.  Humans speaking often unrelated languages take longer to say a noun that other types of words.

Why?

It is the way our brains process certain types of words.

Why is this important to writers?

Because people tend to pause or use filler words before using nouns, therefore the speech we write should show this human tendency.  It makes your dialog more believable and real.

And isn't the idea?

*  *  *  *  *

Nouns slow down our speech

Speakers hesitate or make brief pauses filled with sounds like "uh" or "uhm" mostly before nouns. Such slow-down effects are far less frequent before verbs, as UZH researchers working together with an international team have now discovered by looking at examples from different languages.

When we speak, we unconsciously pronounce some words more slowly than others, and sometimes we make brief pauses or throw in meaningless sounds like "uhm." Such slow-down effects provide key evidence on how our brains process language. They point to difficulties when planning the utterance of a specific word.

To find out how such slow-down effects work, a team of researchers led by Frank Seifart from the University of Amsterdam and Prof. Balthasar Bickel from UZH analyzed thousands of recordings of spontaneous speech from linguistically and culturally diverse populations from around the world, including the Amazon rainforest, Siberia, the Himalayas, and the Kalahari desert, but also English and Dutch.

Nouns are more difficult to plan
In these recordings the researchers looked at slow-down effects before nouns (like "friend") and verbs (like "come"). They measured the speed of utterance in sounds per second and noted whether speakers made short pauses.

"We discovered that in this diverse sample of languages, there is a robust tendency for slow-down effects before nouns as compared to verbs," explain Bickel and Seifart. "The reason is that nouns are more difficult to plan because they're usually only used when they represent new information."

Otherwise they are replaced with pronouns (e.g., "she") or omitted, as in the following example: "My friend came back. She (my friend) took a seat" or "My friend came back and took a seat." No such replacement principles apply to verbs -- they are generally used regardless of whether they represent new or old information.

Widen the net of languages
This discovery has important implications for our understanding of how the human brain processes language. Future neuroscience research needs to look more systematically at the information value of words used in conversation, and how the brain reacts to differences in these values. Also, future research needs to broaden its data. "We found that English, on which most research is based, displayed the most exceptional behavior in our study," says Bickel. It is thus important to widen the net of languages considered in processing research, including rare, often endangered languages from around the world, to inform our understanding of human language.

The findings also shed new light on long-standing puzzles in linguistics. For example, the findings suggest universal long-term effects on how grammar evolves over time: The slow-down effects before nouns make it more difficult for nouns to develop complex forms through contraction with words that precede them. In German, for example, prefixes are far more common in verbs (ent-kommen, ver-kommen, be-kommen, vor-kommen, etc.) than in nouns.

At a more general level, the study contributes to a deeper understanding of how languages work in their natural environment. Such an understanding becomes increasingly important given the challenges that linguistic communication faces in the digital age, where we communicate more and more with artificial systems -- systems that might not slow down before nouns as humans naturally do.

Story Source:  Materials provided by University of Zurich.  Frank Seifart, Jan Strunk, Swintha Danielsen, Iren Hartmann, Brigitte Pakendorf, Søren Wichmann, Alena Witzlack-Makarevich, Nivja H. de Jong, Balthasar Bickel. Nouns slow down speech across structurally and culturally diverse languages. Proceedings of the National Academy of Sciences, 2018.

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Supporting Autistic People in Health Care, Education, and The Criminal Justice System: An Interview with CRAE's Laura Crane

Shannon Rosa from Thinking Person's Guide to Autism and Corina Becker from Autism Women’s Network interviewed Laura Crane from CRAE, the UK-based Centre for Research in Autism and Education about her work in supporting best practices in health care and education for autistic people, and also demonstrating that Autistics, children specifically, can be reliable witnesses during criminal investigations.

Laura Crane | Photo: CRAE
[image: Smiling white woman with long brown hair.]

Shannon Rosa: Why don’t you start by telling us a little bit about the work that you’re doing for CRAE, because it seems like you’re involved in so many things.

Laura Crane: My research focuses on two main areas. The first is looking at how we can support autistic children and adults within the criminal and family justice systems. A lot of that work has come from police officers and barristers and other legal professionals assuming that autistic children and adults can’t give good evidence.

In one of the projects I’ve been involved with, we’ve replicated a real-life criminal investigation. So the children watch a staged event at their school, that involves a little theft. We interview them like a police officer would, both straight away and again about a week later. We do an identification parade with them, where they have to identify the perpetrators from a line-up. We cross examine them with real barristers. And we also show the general public—so people who’d be evaluating the evidence of these children as part of a jury—their evidence, and ask them to rate how credible the kids are—and actually you find that autistic children who don’t have intellectual disabilities are often just as good as their typical peers. They may recall slightly less information if you give them quite open questions, but if you interview them appropriately you can get reliable, accurate evidence from them at all stages of the process. And I think that’s something that’s really important for criminal justice professionals to know about.  (There’s more about this project on the website www.childwitnesses.com.)

The other side of my work looks at how we can best support autistic people within health care and education. So we’ve done work looking at family doctors, knowledge and awareness of autism, and also one of my favorite projects has been a study on mental health in young autistic people, called Know Your Normal. The reason I like this project is because it was co-produced with a group of young autistic people from the charity Ambitious About Autism. They came up with the idea for the study. They told us how they wanted to research it. They put it together with our advice and input. We helped them analyze and interpret it and they wrote the report with us.

Shannon Rosa: That’s phenomenal. I saw that you were just in the same panel that I was reporting on, regarding mental health crises, but that was all based on US criteria and surveys—so I’m wondering if you had any thoughts on whether you see differing levels of support for autistic youth in mental health crises in the UK?

Laura Crane: No.

Shannon Rosa: Oh shit. Seriously?

Laura Crane: It’s sometimes a pretty bleak picture in the UK as well so we have similar problems in terms of professionals who don’t feel confident and don’t feel knowledgeable in how to support autistic people, and from our work on mental health in young autistic people there’s loads of problems in terms of navigating the system. People don’t know what works for them and I think a general problem is we just don’t listen to people enough. A lot of the time the young autistic people know exactly what would help them and what they want, but people have ideas about what should be being done and general ways to do things (based on what works for non-autistic people) and that doesn’t always work for autistic people. You’ve got to be really flexible and you’ve got to work with people as individuals, and that doesn’t happen enough.

Shannon Rosa: Well, one of the things I noticed they talked about in the mental health panel just before here is that a lot of times the mental health professionals, the psychiatrists, actually were less likely to refer their autistic kids to public support interventions from the police or in the ER, because they were worried that their autistic patients actually would not get the help they needed due to lack of autism understanding—and that the situation would get worse rather than better. Is that something you see in the UK as well?

Laura Crane: Yeah, I think there’s a problem both in mental health and in criminal justice with people just not knowing what to do. People aren’t trained. People go to mental health professionals, for example, because they’re the “experts,” and the experts don’t know how to best support autistic people having mental health crises. I think a lot more needs to be done, more broadly in terms of people who are vulnerable, but particularly in relation to autism. In the UK we have legislation specific to autism that means people should be getting the help and support…

Shannon Rosa: Does that mean the funds are there?

Laura Crane: Somewhat. But I think there’s broader problems too. There aren't very many services, but also people at the front line don’t have the knowledge that they need. They don’t have the awareness. And they’re aware of that. They want training. They want support. But there’s often no one to provide it.

Shannon Rosa: So that’s the gap, again, the lack of professionals who can actually do the work, similar to the U.S.

Laura Crane: It’s a huge gap, yes. Very similar to the U.S.

Shannon Rosa: And we’re supposed to be the countries who actually are on the forefront of providing support so this is just …

Laura Crane: I know. I went to the session on underserved populations as well, which paints an even bleaker picture because we’re not meeting the needs of a lot of autistic people and then there are other groups that are even more vulnerable and falling through the net.

Shannon Rosa: Yeah. So was that the session on barriers to diagnoses for low socio-economic status and minority communities?

Laura Crane: Yes. It was really depressing.

Shannon Rosa: It is really depressing. One of the things that stood out to me was because of lack of resources, and also general distrust of professionals, they tended to go toward complementary and alternative approaches—and if you’re in the low SES situation to begin with, none of that stuff is covered by insurance, or rarely. So that’s depressing. I don’t know if you see that also in the UK in your healthcare work, but then you have better access to healthcare than we do in the U.S.

Laura Crane: We have freely available health care without insurance.

Shannon Rosa: Yes. So is this something that you see happening because of lack of trust in the healthcare system or when people turn to it..

Corina Becker: Or is it like in Canada where you have really, really, really long wait lists for everything? I’m from Canada and we have really long wait lists for what services are available, if they’re available at all. Sometimes what’s available depends on where you are.

Laura Crane: That’s very similar to what we have and often funding for services is set up and they’re working really well and then the funding gets taken away. So someone would be near the top of the waiting list and they wouldn’t get anything. That’s a problem many young people told us about in our research on mental health. And sometimes people are receiving great support from that service, but it suddenly stops and then they’re back to where they were in the first place. There’s a  huge problem with funding and with waiting lists in the UK. In terms of getting the diagnosis in the first place, for example, we’ve done some survey research in the UK, showing that parents have to wait on average three and a half years for an autism diagnosis for their child and adults are waiting two years from when they first contact a professional. 

Corina Becker: In the city where I live, in a small city, just the wait list for the wait list for a  diagnosis is two to three years, as an adult. The wait list to get onto the wait list. Because the original wait list to get into the free clinic is a couple of years long. But if you go to the private clinic, which costs a couple thousand bucks, then you can get in. But you have to have the couple thousand dollars to then pay and even then you might not get a diagnosis, because the professional’s bias might be like, “oh, you meet all the criteria but you have a job, therefore you can’t be autistic.”

Shannon Rosa: They have outdated notions of what autism is, like many professionals.

Corina Becker: Or, “you’re a girl so you can’t be autistic because you’re a girl and everyone knows that there’s only so many girls. It’s rare in girls.”

Laura Crane: In our research, professionals acknowledge these challenges. They say it’s really difficult to diagnose certain groups, like adults who don’t have intellectual disability, and also women in particular. And it delays the process and it makes it harder for everyone involved. Another big issue is that there’s often not much support when people get an autism diagnosis. Autistic people and their families often see a diagnosis as a gateway to help and support, and they’ve been fighting for years to get the diagnosis. But they finally get it and they’re told, “actually, there’s nothing we can do for you.”

Corina Becker: I know there’s a problem in Canada because in some cases it can take a couple of years to get a diagnosis. But then the government of Canada only funds ABA, and in some cases only IBI. So they only fund within the first couple of years. So once you get the diagnosis, it’s too late for what they will actually fund.  So—as much as I don’t like those services they provide, this is why all of the parents in Canada are caught in a bind as to what services are available.

Shannon Rosa: It’s really frustrating and we have the same thing here. And going back to the previous question about complementary and alternative (CAN) treatments … that’s what we hear too. People get handed a diagnosis for their kids and then they don’t get any follow ups. We were very lucky in that my son was diagnosed at Stanford and they actually did give us a checklist of things to do. But typically that doesn’t happen. And actually, we only got him diagnosed formally a year after we already knew that he was autistic, because of all the hoops and wait lists—even with great insurance. And so, because we were at a loss as to what to do to support our kid, we had actually started doing some of the bogus CAN stuff in the interim.

Getting back to your research, I’m curious about when you went through the recreations of the interviews and cross-examinations, did you tweak the survey questions for specificity for autistic kids or how was this survey developed? How were the questions and the experience, how was it developed?

Laura Crane: When we interviewed the children, we had a variety of different approaches we were trying out. So some children had a typical standard police interview that’s used in England and Wales. Other children had what’s known as verbal labels support, where you prompt them in certain categories to try to get more information. They’re still quite open prompts, but they guide the child to talk about people, or actions, or objects. Other children were asked to use a drawing technique where they had to draw what they saw and then talk about their drawing. And then another group of children had the assistance of something called a Registered Intermediary. This is the first new role in the legal system in England and Wales for a hundred years. 

Registered Intermediaries are typically from a speech and language therapy background but are often from psychology or education backgrounds and their role is to do an assessment of the child and advice on how that child can give their best evidence. So they might work with barristers, for example, to make sure their questions aren’t too confusing or complicated for a child of a certain age or level of ability. We’re analysing the data at the moment, but we found that the autistic children performed pretty similarly to their typically developing peers overall, which is encouraging. In my view, the Registered Intermediary role is really promising as it’s all about working with each individual child, and really tailoring things to their profile.

Shannon Rosa: Interesting. I don’t know if you got a chance to review the AutIMFAR chat transcript, but one of the responses that actually went to a big long sub-thread was people talking about how much they hated open-ended questions and how much they needed specificity on their questions, otherwise they wouldn’t know how to answer.

Laura Crane: It’s really, really hard though, because what we know from the research on memory is that if you ask an open question, that’s when you get your most accurate information. When you start making things more narrow and give closed questions, that’s when errors happen. So actually, in a police interview you don’t want to give a closed question. The guidance on this is to give an open question within very specific parameters. So instead of, “Tell me what you did yesterday” saying “tell me what you did between this time and this time,” and trying to keep it open but also narrowing the focus a bit.

Shannon Rosa: That makes sense. Can you tell us some of the things that surprised you from the results of those—I keep saying recreations but it’s because I’m losing words at the end of the conference. Simulations?

Laura Crane: The thing that surprised us—it didn’t really surprise me, but I think it’s surprising for most people—is that the autistic kids weren’t doing badly, and I think that’s really important. I think often if a police officer or barrister sees that they have a child coming in who is autistic, they’ll immediately think, “Well, I might not be able to interview them or we won’t get anything useful from them.” And I think our work really brings it home that you can’t underestimate autistic people and there’s no reason to believe that they can’t do what non-autistic people, can do if you support them properly.

Shannon Rosa: You said this was specifically for kids without intellectual disability. Were there any explorations of kids who did have intellectual disability as police witnesses?

Laura Crane: That’s the next step, hopefully. There has been research on kids with intellectual disability who don’t have an autism diagnosis, and they can provide reliable evidence. Again, it’s often just that they tend to recall less information, so it’s about trying to find ways to appropriately support them so we can get as much accurate information as possible. But it would be great to broaden it out to look at autistic kids who’ve got additional needs in terms of intellectual disabilities and see how they fare and how we can best support them. I think that’s the key. It’s how the police officers and barristers adapt to them and work with their skill set.

Shannon Rosa: So, within the realms of privacy and disclosure, can you talk in general about some positive and negative outcomes you’ve seen in mental health treatment for autistic youth? Or just in generalities or trends? Give us hope?

Laura Crane: Yeah, it was a pretty bleak picture, what we found in terms of mental health. And there are lots of examples of cases where things went really badly wrong, and they shouldn’t have done. But it’s really hard. And I think one of the key things is just the fact that a lot of the adaptations that could be made don’t cost very much money.

This is just an example from diagnosis: When someone gets diagnosed, they often get given loads of written information about their diagnosis, and all of their personal information is included in that. This may relate to mental health crises that have led to the diagnoses, or other things they might want to keep private. And when they have to go and get support for something, even non-medical related, they often have to show it, to prove that they are eligible for that support. 

And many people said that what would be really helpful would be having even one sheet that says ‘this person has an autism diagnosis’ that they could use to confirm to people they actually have an autism diagnosis, so they wouldn’t have to give away to strangers a lot of personal information about their private history. So, autistic adults in our research said something that simple would have a really big effect on how happy they would be with the process. So it wasn’t always huge changes to services, even though some of those things are needed. Sometimes it’s just really little things that can make a difference.

Corina Becker: I’ve had to interact with mental health services in Canada, and when I get referred they put down “here’s all your diagnosis,” but when I get referred I don’t know whether that gets sent on. I’m assuming that gets sent on to the psychiatrist I see. But the last time I saw a psychiatrist she didn’t believe I had those diagnoses even though I have an inch-thick folder that I usually have to bring along to any mental health professional to prove the diagnosis that I have and any of my mental health history—to basically say “I know what I’m talking about, about myself.” And a lot of that -- that was a bad meeting. And it’s gotten to be such a practice that unless you have a thick thing of documentation, you’re not believed. So it’s a great idea but at the same time, in practice… I don’t know. Maybe it’s a cultural thing in the different mental health services?

Laura Crane:The thing is who you’re sharing it to. So if you encounter someone that you might be seeing a lot?

Corina Becker: There are some good psychiatrists and there are some bad psychiatrists and the last one I had was a bad psychiatrist. There are some psychiatrists who just don’t listen to you.

Laura Crane: There are two kinds of expertise. A psychiatrist will have their professional background, and they’ll have knowledge about autism from seeing all of their patients over many years, but equally people are the experts on themselves. They know what works for them, they know what doesn’t work, I think that applies to anybody. It’s about listening to people and sharing that knowledge and coming to a mutual understanding and that’s seems to be what’s not really being done, I think.

Shannon Rosa: I’m curious, did you have a sense of how the children, themselves, felt after going through the simulations? Were they happy to do it?

Laura Crane: They had a lot of fun. Everyone always says to me, “ethically, how could you get barristers to cross-examine young children for a research study?” But actually, barristers are really nice to child witnesses because the jury will absolutely hate the barrister if they’re mean to a child. They have to be nice. So they’re very charming and they tell the child how brilliantly they’re doing and then they’ll get the child on side and before the child knows it, they may change their answers. The child doesn’t realize they’re doing anything wrong, but it’s really affected their credibility. 

So one of our barristers was talking to the child and the child was quite adamant about something that happened. And the barrister just said to him, “where were you sitting?” and he told them. And she said, “were there people in front of you?” And he’s going, “well, yeah.” And she said, “could you see clearly?” And he said, “if I sit up very straight I could see.” So she said “So if you were slouching down a little bit, maybe you couldn’t see them quite well?” And the child said, “well, yeah, I guess so.” And immediately a jury thinks well, maybe they didn’t quite see it. The child didn’t have any idea they did anything wrong—but it affects their credibility.

We found that it was really common for children—both typically developing and autistic children—to change their answers. The barrister might say, “do you think whatever I’ve said might have happened?” and they’ll say, “well, yes, I guess it could have done.” And the barrister praised them and the child was happy but actually, they’ve been manipulated into changing their answer. It’s very, very subtle and the scary thing was—I can’t remember the exact statistic but about 95%—not just of autistic children but typically developing children—would change their answers in response to at least one of the challenges the barrister gave in our research. 

So there’s a lot of work being done at the moment to try to protect children in the courtroom so that their best account of evidence gets given. This is why we have this new role in the justice system, the Registered Intermediary, as I mentioned earlier, so the children have someone to help ensure they can give their best evidence. The barrister won’t be allowed to use words the child doesn’t understand, for example—the Registered Intermediary helps make sure everything is tailored so the child can give their best evidence. And a lot’s being done in this regard, which is really encouraging. Anna Remington, my colleague at CRAE, gave a talk about some work we’ve been doing on autism in the family courts, highlighting the need to address family as well as criminal courts. My work’s very much in criminal justice. So it’s quite exciting, actually. More people are doing research in the area and hopefully it’s going to lead to some really positive changes.

Shannon Rosa: I hope so. Great! Was there anything else you wanted to talk about? The work that you’re doing or CRAE?

Laura Crane: We’re doing lots at CRAE. Very exciting. The thing I like most about working there is the fact that there is this strong ethos of participatory research. That’s the thing I’ve noticed at IMFAR this year, actually. The fact that I don’t think there’s enough meaningful involvement of autistic people in research, in terms of helping to decide on the research topics and the design of the study and how the data’s interpreted. And I think that’s where things need to be moving and that’s what we’re trying to work towards at CRAE. I think following the #AutIMFAR chat, you could see that there was a desire for that but it’s probably not happening as much as it should and that’s a real shame, because the most meaningful projects that I’ve worked on are the ones that we’ve been co-producing. It would have been nowhere near as good as it was, had if we had not had participants' input.

Corina Becker: That’s really great to hear, because I know five years ago there was nothing really participatory and there were researchers who, when I approached them, were interested and were like, “oh, that’s actually a great idea!” but none of them were approaching their research that way. So to see a little bit more of research being done this way, to see more researchers interested in doing this and being open about being interested about this is really encouraging as an autistic person and the growing number of autistic people at IMFAR.

Shannon Rosa: Yeah, Corina and I were actually sitting in a session at IMFAR 2012 in Toronto, and a bunch of us, autistic and non-autistic, all sitting together, having a rollicking time, listening to a researcher tell us that autistic people didn’t have friends.

Corina Becker: And in fact, wanted to have friends.

Shannon Rosa: Wanted to have friends, and just as a generalization. Meanwhile, there were a bunch of us all sitting in the back of the room, laughing out loud. Not able to stop laughing out loud. Not intentionally heckling but just—what was being said about autistic people and friendship was obviously not a valid. And while difficulties making friends may be true for some people, these kinds of overt generalizations then get picked up by the media, and people absorb them, and they become assumed truths with negative implications, and that is wrong. 

I think it gets back to what you were saying about the need to evaluate people individually and treat them as individuals, going by a broad knowledge base. But the knowledge base has to be based on correct information and the less we have autistic people participating in research, the less accurate that broad-based information is likely to be. So I’m really grateful to you and your team for doing the work that you’re doing.

Laura Crane: oh, thank you!

Corina Becker: Thank you, Laura!

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