Boundaries & Autistic Burnout

What is Autistic Burnout and how does it relate to Boundaries and Self-Regulation?

Read this amazing explanation by two autistic adults & advocates of Neurodiversity: Neurodivergent Rebel and The Autistic Advocate.

Sourced from a Facebook post from Neurodivergent Rebel on 17.12.2020: https://www.facebook.com/1747942288864177/posts/2865819063743155/

Neurodivergent Rebel explains Autistic Burnout

When I first discovered I was Autistic at the age of 29, it was because I was going through Autistic burnout and that’s because I was in a perpetual state of burning myself out because I didn’t know I was Autistic and I didn’t know how to establish healthy boundaries with the neurotypical people around me that kept insisting I didn’t really need the things I was saying I needed.

ActuallyAutistic #AskingAutistics – does anyone else struggle with boundaries?

https://neurodivergentrebel.com/2020/12/16/setting-and-maintaining-boundaries-when-you-are-autistic-or-neurodivergent/

https://youtu.be/y41tNLnDx3o

In my case, people had told me over and over again for almost 30 years, that my needs were unreasonable and just not valid and they told me things like, Oh, you know, the sensory stuff, isn’t that bad, those lights aren’t that bright –  it’s not that cold in here.  You’re just, you’re just complaining too much. Why are you complaining too much?

I didn’t know back then that these comments weren’t true because I didn’t know I was Autistic, so I just took them to heart. I didn’t understand that I processed the world in a different way and it’s actually likely that the people telling me “things weren’t that bad” meant well, and they didn’t realize things were actually a lot worse then they understood because they didn’t know I was autistic either. They didn’t understand sensory processing differences. I didn’t understand sensory processing differences. I didn’t even really know I had sensory processing differences for almost 30 years.

I had to learn that my boundaries do matter and my needs do matter even when there are people around who don’t understand my needs, and sometimes people can be just downright dismissive of the things I need, or even the things I enjoy and want to spend my time doing. I’ve had to learn all over again that I need to push back – especially when people tell me I am complaining too much, making a big deal of nothing or similar comments like it’s not that bad.

Learning to set boundaries in my thirties hasn’t been easy. It hasn’t been easy. It’s a process I’m learning to get better at this every day but it’s important to learn to set boundaries because it’s not only about getting your needs met.

Setting, healthy boundaries is to help you maintain relationships with other people. It is one way that I love myself, yes, but it is also the way that I love other people in my life and I can’t have healthy relationships with other people if I do not have healthy boundaries with them.

-Neurodivergent Rebel

What I mean by that is if I allow someone to cross my boundary, it harms my relationship with that person because I may feel taken advantage of or harbor some ill will and I don’t want to have bad feelings about someone I care about. It can cause a loss of trust in the relationship and this is all something that could’ve just been avoided in the first place by me saying no, or being more firm in my needs.

It’s not as easy as it sounds, especially if you have a history of letting people violate your boundaries, you’re going to have to build up a new skill of standing up for what you want and need.

We’ve been told our needs are unreasonable and we believe it because when a hundred people have told you the same thing throughout your life. Well, eventually it sinks in that it must be true, even if it isn’t. So there’s a lot of damage that has to be undone for a lot of us if we haven’t developed boundaries or if our boundaries have been violated and taken away from us.

How to Set Healthy Boundaries

Number one, know what you need. Know what you want and need.  If you don’t know what your needs are, take some time to figure out what you actually need to be successful and what you want, and maybe do a writing exercise to solve that. That’s that’s the first thing you’ve got to do before you even start to ask for things, because if you can’t ask for something, if you don’t know what you want.

Once you know what you want, you must be direct with what you need – direct with your needs and don’t apologize for your needs. No shame in having needs. Everyone has needs just because your needs are different and other people might not understand them doesn’t make them wrong.

You need to learn to let people know when you are maxed out at capacity needed a break. Can’t take on anymore, have all that you can handle on your plate. And if you think about this in the work world, I promise your boss is going to be much happier if you let them know upfront that you don’t have the availability to take on the current project otherwise another project might be late – instead of taking on a project, not saying anything, and then having your project turned in past the deadline or doing subpar work because you didn’t have availability because you said yes to something you shouldn’t commit to. Don’t do it. Don’t do it. Don’t do it. Don’t do it.

Don’t do this with family either.  If you need to go home and rest after something and everyone’s like, come on, let’s go out. Let’s go out. You don’t need to go home and rest.

No. If you know, you need to rest and going out is going to be a one track path to a meltdown town. No, don’t do this to yourself. It’s not going to be good in the long run. It’s also very important that you learn to say no to opportunities that don’t suit your lifestyle or your needs like saying no, I need to go home after work. If that’s the case and a big part of that is also only saying yes, when you really want to say yes, this is so important.

Don’t say yes to things out of obligation or to please other people. Ask yourself when you agree to things. “Am I doing this because I really want to do this or am I doing this because I think somebody else wants me to do this, or because I feel like it’s the thing that’s expected of me to do?”

It’s going to take practice to get better at creating boundaries and once you start creating boundaries with people, especially if they’ve been in your life already, and aren’t used to you setting boundaries with them, people may test your boundaries and push back on them because they’re not used to them being there.

You’re gonna have to do a lot more legwork as you first get this started, especially with those people that have been around for awhile. But once you’ve set that new boundary, you’ve drawn your line in the sand eventually over and over again, people are going to realize you are serious and you mean business. You’ve just got to show them this is the case, unfortunately, don’t cave. You got this.

Autistic Burnout

Sourced from The Autistic Advocate on 17.12.2020. Read the full article here: https://theautisticadvocate.com/2018/05/an-autistic-burnout/

The Autistic Advocate explains Autistic Burnout

Autistic Burnout is an integral part of the life of an Autistic person that 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.

-The Autistic Advocate

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.

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 happens at any age, from a baby up until old age.

Physically I often imagine it as the need for hibernation, where the body effectively stops all but the most important functions, the heart rate slowed, breathing distributed 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, are 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 more and more on, 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 aren’t generally terrific at juggling plates.

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. 

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 of doing this?

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.

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.  As this study shows, they are seeing how Masking, or Social Camouflaging has a distinctive lead-in to the high suicide rate and also into other mental health issues that are identified, sometimes wrongly in Autistics and, as this study shows, how a lack of Autism Acceptance plays a huge part in that 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 off of the back of this – when really what they needed was major sensory withdrawal/stimulation (depending on the person), acceptance, understanding and rest.

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 it 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, as the study above shows, 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 later in life.

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

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 spiralling 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.

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, it negated the need to step out.

As it was around 9 months later I started to wake up again – my mind and body felt more alert than it had in years. 

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 than this, there must be reasons for this.

So I turned on line 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 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.

Signs of Autistic Burnout

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 apply it to 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 list; how does it present?  Bad behaviour, defiance, lack of compliance, willful disobedience?  Or the other way, 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 all that they are likely still able to communicate any of this.

Now apply both those scenarios to someone 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. 

What do I Do

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 it 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.

Adult or child you need to proper time to withdraw.  So even at Social events or Social Situations having an escape plan ready 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, 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 them.  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. 

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 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.

Sometimes knowing what you are experiencing makes the experience less frightening and easier to manage, it offers you a level of control over the situation and expecting it will happen does too.

If society changed to accommodate us 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 no support for this, except from Autistic people, and if you’re lucky enough to have understanding family – so self-care is your priority.

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.

Some other links about Autistic Burnout:

The wonderful Amythest Schaber:

https://www.youtube.com/embed/DZwfujkNBGk?feature=player_embedded

The brilliant Ryan Boren:

“Autistic Burnout: The Cost of Coping and Passing”

The excellent Judy Endow:

Autistic Burnout

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