The Long Term Effects Of Masking.

[Captain Caveman]

Masking for me was entirely self taught and developed through my childhood to help me fit in. While I soon learned by the smacks I got or worse still being shouted at when in school, how to mask stimming, but I remember when I learned a major and highly successful form of masking when Iwas 13 quite by accident when in secondary school which I had entered at the age of 11.
Now as stresses go, secondary school (11-16) was the most stressful part of my life along with collage which came after I left (16-18). Both were probably the most stressful experiences of my life though I have gone through others, and primary school was also stressful (Age 4 to 11).
Age 11 to 12 I had no friends as my only friend had found a new friend and turned on me when I was 11, so though I kinda met a new friend he was pulling my hair out from its roots and my parents were complaining, so I didn't spend time with him. So I was a bit of a loner to be honest if it wasn't for a 6th form prefect (She was aged 16 to 18 in 6th form) who I would go to during lunch time to talk to which wasn't officially allowed as she was on corridor duties stopping kids like me from being in the corridors or classrooms during break or lunch, that I would have had no one. But she let me sneek in to stand by her as I was not mixing with the others.
Anyway. She left when I was 12 and sadly I do not know what happened to her after she left school, and I was on my own again so my exam results suffered with it. I got put down two classes (Same year) so I went from near the top to near the bottom, and found the work ultra easy but the classrooms ultra stressful because at age 12 the government decided to ban the use of the cain, so suddenly classrooms became transformed from being quiet so one could concentrate, to being ultra noisy as the forward destructive kids realized they could suddenly do what they wanted, and for me, it became ultra stressful!
But, at the end of the exams for that year where I ended up with extremely bruised arms after the exams, (As each exam I passed which was higher than the other kids they took offence to it). But one exam was science, and at age 13 they had started sex education. I was always taught from an early age that we were not allowed to talk about such things. If I mentioned any of the words to ask what they meant in school I would get a serious telling off when younger, and if I tried mentioning at home, my Mum would go bright witrh embarrassment and say "Ask your Father", and he would go bright red and say "Ask your Mum" so when these sex education lessons came as part of a section of Science, I blanked it out in my mind. My mind was on trains ot anything else to blank it out. Yes, if asked I could repeat what the teacher said word for word, but it was not entering my thinking part of my brain so did not compute. It was like a cassette recorder that just played what it heard but didn't have a computer to know what the conversations meant, as I had blanked it out. I never knew the drawings I was copying from the board were sexual organs!
Anyway... Came to the exam at the end of the year. Sex education part was 10% of the exam. I was taught "If you don't know, take a guess", so I guessed and actually I just made up answers to write something.
Came to the teacher holding our exam papers to give us our results. She started reading out the replies from one of the exam papers... At first I did not realize they were mine as I had written anything as I had made things up for the section I blanked out. So just then I didn't even realize I had written them, but as she read them the whole class were laughing so much! No one knew that second who's exam paper it was... Then she handed me my exam paper and placed it on the desk in front of me, which the kids thought was hilarious, and then she became serious and looked at the rest of the class and said "You can laugh. He got the top marks in the exam!" (89%, so I had one non-sexual question wrong).
But after that, word suddenly got round the whole school, and I was getting kids from all ages from 11 to 18 coming up to me to ask sexual questions and I would make up replies for their own amusement, as I realized by doing this, I can add an extra layer to the masking effect, so I could connect with people who I had never connected with before. People who used to avoid me now connected with me eager to hear what I would say!
Now some of the things I said were directly what I had written in the exam, but I went on from there.
As I realized how using humour to mask by acting thick (I really didn't know answers to some of their questions back then, but I made up my answers to sound amusing!) made these connections, and since that time on, I realized how powerful humour could be!
I had partly developed the acting thick bit before as a means of not admitting I didn't know and a means of surviving that class who would bully me if they knew I was intelligent. I was intelligent, but not street wize if that makes sense. Intelligent but socially clueless? Very intelligent in some avenues but clueless in others. Not consistent. Why masking to act thick brought even-ness so I was less likely to get blamed by teachers if they realized I had a high I.Q., as soon learned to keep dead quiet in class from a very early age! I hardly spoke through most of my schooling! But by acting thick and lacing it with a sense of humour, I can connect!

Now fast forward many years, and this acting. It is like using ones brain to do two tasks at the same time day in and day out!
The problem with this is that it leads up to major burnouts! With burnouts come bullying! As I would glitch between masking and my real self and when others noticed, they felt deceived as if I had put on the act to deceive them, so I would not only go back to being excluded like ai was before I learned to mask, BUT their bullying would be physical, and it was not just the students or work colleagues but the teachers and bosses on some occasions! (Though were usually the students or work collegues).
So when I had jobs, if the masking started to break down I would hand in my notice. I called these my "Two year cycles" as they usually lasted two years.

Now as time went on, these burnouts became more and more severe and took longer and longer to recover from. I am sure they became breakdowns but I have never officially had anyone assess me for them. Last one was in August to September 2019, and I am still pulling out of the final few things since. (Not sure how to overcome one aspect as yet which I really need to overcome, but other aspects I have now recovered from and it has been years!)

But what I am saying is, that though with masking one can connect, the risk of burnouts and breakdown later in life... I would not take masking too far. Though would I have changed if I knew about autism back then? Probably not, as connection is something I deeply longed for, and since the last burnout where I had to push people away by distancing myself in order to recover... But now I need connection, and I am not sure I can mask to that level again? And without that I find it hard to connect. My humour feels flat!

 

[Neonatal RRT]

Food for thought here...

1. I've never heard of anyone who doesn't mask in public, especially if you have to work with the public. Obviously, some must mask at very high levels, some at very low levels, and others in between. My endurance level is likely different than yours. Highly individualized. Working with the public almost requires a fake persona, and high level of self-control and discipline...to do it well. It's just that with autism, it is an additional challenge due to varying levels of sensory issues, emotional dysregulation, trying to control stimming, self-discipline and focus in the face of varying ADHD symptoms, and simply the brain's energy consumption. Personally, I can mask well early in the day, but as the hours pass by it tends to diminish...by 3-5pm...I am winding down, but if I am at work and can't leave until 7pm, sometimes longer if I am out on a patient transport...I am in "energy conservation mode"...and I may not be able to mask at all by the end of the day. Part of the reason most of my close co-workers have been made aware of my autism. They can put things into a proper perspective.
2. Burnouts and breakdowns...at least having some control over them...is a matter of recognizing your signs and symptoms and then purposefully taking time to recover with good nutrition, supplements, and rest. In my experience, these things build over time, often over days or weeks...then you break down. If you can recognize these things early on...being self-aware...it is easier to make the necessary adjustments. It's about pacing yourself. Self management of autism symptoms. You will learn to know when to say, "NO", when to take that personal day off of work, when to set aside time for vacation/holiday away from your life, etc...and not feel bad about it.

 

[Captain Caveman]

Part of the issue with burnout/breakdown is when I felt it starting I would hand in my notice. One then has to work four weeks or a month before one leaves the employment, and managers often think to add extra hours thinking they are doing a good thing because one can't explain while going through mental issues and one says "Yes" rather than "No" because yes requires no additional conversation while no requires a lot of mental conversation at a time that one is not able to do it.
The signs of burnout are stuck in continual partial shutdowns which is torture when working in that state. It is more the inability to explain means I have thrust myself into a worse situation. If I just walked out one will never get a job again and one would instantly lose 2 months pay when 12 hrs a week was too much as it was as often happened that to work was costing me money as the wages were less than the cost of travelling. (Over the years after burnout after burnout, the amount of hours I could do became less and less as recovery time needed between shifts became more and more).

The basic problem and why I could not see doctors etc, was the inability to talk about it when going through those situations which is why I would hand in my notice. When I tried talking to doctors, I was never able to explain or say the right things so they knew what I was going through, so I could get no help.

Add to this, because I was often taken advantage of, many years of employment I was never on the books of my employer and I didn't know, and even my manager didn't know as two employees somehow fiddled systems to pay me and forged all my payslips. If I fell ill, I had to work double the hours as soon as I got back, so I often had to force myself to work through illnesses be they mental or physical. I had no one to turn to. Why I was taken advantage of. I was owed over 500 hours (More like double that) from those years of unpaid hours all based on promises of payment which never materialized. It is taking advantage of autistic people who didn't know they were on the spectrum so had no one to turn to for help.

 

[Neonatal RRT]

As you know, I am in the medical field and have been for some 40 years...so it's no surprise that I look at these things from that perspective. To me, the brain is an organ...like a heart, a kidney, a liver, and so on. Each organ has it's metabolic demands and when they are not met, it suffers. Furthermore, when we are also speaking of autism, it is well-documented that the autistic brain is often in a hyper-metabolic state...due to the microanatomy of the brain, especially in areas where there are an excessive amount of synaptic connections on the neurons, those affected neurons are using a ton of energy...and kicking out a ton of metabolic wastes. We can see this on PET scans, we can measure it in terms of oxidative metabolites, and we can sense it in terms of mental exhaustion, sensory issues, emotional dysregulation, etc. It is what it is. Unless you're going to be medicated into a mental stupor, you're not going to change that. OK...so, how do we manage this in the real world so we can still be productive throughout the day?

Another analogy I might suggest...I am a respiratory therapist...so we can look at some other chronic condition such as moderate-severe asthma. If well-managed, asthmatics can live their lives productively and well...and if not well-managed, there can be a lot of suffering and "down-time" in their lives. I can see autism symptom management in a similar light. One either manages their autism symptoms well and go about their lives...and if the symptoms are not, there can be a lot of suffering and "down-time".

Some management tips I use:

1. Good sleep habits and routines. I also supplement with chelated magnesium, L-theanine, and melatonin at bedtime. Do not go to bed with a full stomach. On your days off...and if you can...take an hour nap in the afternoon.
2. The autistic brain, being hyper-metabolic, will tend to release an excessive amount of oxygen radicals during metabolism...and as such, will quickly consume our anti-oxidants and leave the tissues in an pro-oxidative state which effects RNA gene transcription and cellular functioning...it can actually damage or kill tissue in extreme cases. N-acetyl cysteine (NAC), s-adenosylmethionine (SAMe), and Co-Q10 have been shown to significantly help restore the oxidant-to-antioxidant balance in the autistic brain. I take all 3.
3. There is often difficulties with ATP production and mitochondrial dysfunction in the autistic brain...in part, leading to mental exhaustion...Co-Q10 and creatine supplements have been shown to help with this.
4. Brain cells that are hyper-metabolic also have higher oxygen requirements...and as such, require more blood flow...which means cerebral-vascular dilation...which means you may experience periods of brain swelling, headaches, transient visual and auditory phenomenon. I've literally sat on the couch with a cold pack on my head and back of my neck when I got home from work.
5. With all that energy expenditure and calorie consumption one might think that glucose is important and that one might need to "feed" the brain. This is an important concept to understand, "It's not WHAT you do, but rather HOW you do it." Eat too much at once, eat too frequently, or eat too many carbohydrates...it will spike insulin...and insulin will vasodilate blood vessels...blood vessels in your brain...and make you feel like crap. A better approach, which seems counter-intuitive, is eating foods low on the glycemic index, mono and polyunsaturated fats, 3 small, but nutrient-dense meals...perhaps skipping a breakfast and eating 2 meals...whatever works for you, but you need to think of these things in terms of keeping your insulin levels low. Interesting side note, if your body is burning fat and producing ketones...ketones are a more efficient fuel source for the brain than glucose.
6. Not all, but many autistics, especially females, have a MTHFR gene mutation that significantly reduces a metabolic process called "methylation"...important throughout the body. You can look this up, but this can be helped by consuming a "methylated" B-complex vitamin supplement...not any B-complex. Methyl B12, methyl folate,...not just any B12, folic acid supplement. If you consume beverages with B12, make sure it says "methylcobalamin" and NOT cyanocobalamin. Most will have cyanocobalamin...this is NOT what you want...if you have the MTHFR gene, you won't be able to metabolize it.
7. Caffeine: Basically, it increases the brain's metabolism while vasoconstricting...it's a 1-2 punch for the autistic brain. Now, it may help people wake up in the morning...when the brain has had a rest...and it feels like a good start to the day, but this effect is transient and if you are one to drink caffeinated beverages throughout the day trying to keep you mind sharp...it actually does the opposite for the autistic and makes one more mentally exhausted. I used to be an "energy drink" person...seemingly "addicted"...but I avoid caffeine now and feel much better.

I am sure others can chime in with other things to consider in terms of management, so I will leave this here.