This weekend has been yet another lost weekend. Lost to meltdown and recovery.
I can’t really remember what started it this time. Something about talking through my relationship with my husband that triggered utter meltdown. The thing is, it doesn’t take much to set me over the edge at the moment. Any vague sensory overload, or one minute past my social limit and I’m running flat out through shutdown to meltdown.
I feel absolutely exhausted all the time. This obviously isn’t helped by regular meltdowns knocking me for six but, even after a few weeks of peace, I don’t seem to be back on an even keel. It feels like I am stuck down the bottom of a well trying to climb my way up to the light where every overloading situation doesn’t stop me in my tracks but knocks me back down to the bottom again.
So today I went searching for a description of autistic burnout and found some excellent blogs. This one describes my current state almost exactly, and this one is great too. What I particularly took from these blogs was that these times of burnout are characterised by the the inability to find anything (even our special interests) interesting or engaging. This is certainly true for me: I haven’t been able to draw, play my instruments, go climbing, go walking, kayak, enjoy the seasons or listen to music for… well, honestly, about three years. I have forced myself back into reading but I cannot get engrossed in a book like I used to. Pretty much all I can do is work, watch TV and sleep.
It seems to me that the short term effects of over-stimulation on autistic people are well documented: namely meltdowns and shutdowns. (My cynical self imagines that this is because these events give parents of autistic children the most grief.) But little seems to be known (other than anecdotal evidence in AcutallyAutistic blogs and social media) about the long term effects of ‘passing’ and the times when we have to push through our natural responses to stimuli in order to appear ‘normal’. What really happens to us through the shame-induced repression of out autistic selves? How long are these effects felt?
Personally I feel that I am still recovering from events of three/four years ago. It could be that there is still some residue of stress from my student years still lingering as well, and maybe even from my gap year which I started just over 10 years ago, but I am certain I am still processing at least four years.
What happened was, after I graduated I worked in a lovely small architectural practice for a year. This was probably the best year of my adult life: I lived in a small house with people who I liked but mostly had their own lives and left me to mine, I had a great routine, I could see friends when I wanted, my bosses were stable and I saw a really nice counsellor. But I got restless thinking the next step was to settle down and have children which I was not ready for! So I moved out to the countryside and got a job as a trainee outdoor activity instructor.
Needless to say, I was not suited to that workplace or the lifestyle that came with it. The centre was in the middle of nowhere and, whilst I am a country girl at heart, I could not deal with living with the same people I worked with who were also the only people I knew in a 100 mile radius. I loved the teaching sessions, especially the special educational needs groups, but I could not cope with the irregular shift work and having to ask permission for every single hour off, including evenings and weekends. I had to miss all sorts of family gatherings and meetings with my old friends, even a friend’s wedding. I am good at isolating myself but when it was forced on me against my will it added to my stress and I grew extremely resentful.
On top of this, the management was average at best: my immediate boss someone who took favourites, of which I was not one (am I ever?!); and I could not have called any of the people I worked with my friends: I felt that I made an effort to do the things they enjoyed (watching TV, shopping) but they could not bring themselves to share in any of the things I wanted to do (climbing, music gigs, pub visits, walks).
I persevered for 15 months, but eventually I developed chostochondritis to the point where I could barely stand up and had to leave in order to get enough rest and recover. Since then I have been working back in the construction industry. I have stuck at it pretty consistently; I was signed off for two weeks at the beginning of 2015 with ‘anxiety’ but I dutifully went back to work immediately those two weeks were up.
In this time I have also got married, moved house three times, changed jobs, had the bosses threaten to close the new company I work for, received my diagnosis of autism and witness my bosses’ messy divorce. It feels like it will never let up and I am not coping. I have considered leaving my job, even handed in my notice, but despite some difficult characters, I like the flexibility it allows me in work hours and the nature of my work.
But what else can I do? I have tried working part time and cutting out all unnecessary social engagements but it does not seem to have alleviated anything. I want to hide in bed until it all passes (or at least my internal stress and anxiety levels reduce to a point that I am not jumping out of my skin at every loud noise or left weeping after every evening spent socialising) but I fear that will take months.
Then what if I pick stuff up only to be overwhelmed again? How will I know when I have reached a sustainable level of engagement?
I have no answers yet. It is most likely a personal journey for every autist to pursue and reach their own conclusions. It worries me though that young autistic people with a diagnosis are being pushed into this time-bomb by parents, carers, teachers or counsellors asking them to ‘mask’ their autistic characters in order to be accepted. I have been undiagnosed for most of my life so have subconsciously tried to hide or push through my autistic characteristics to fit in to the point where I physically and mentally could not do it any more, but surely we should be protecting young autistic people from the same fate?
We cannot be ‘cured’ only, by an extreme effort of will, suppressed. We should be teaching young autistic people to know their limits. It should not be celebrated that autistic people can act neurotypical, especially as we do not know the recovery time that this effort requires and do not have accommodations in the ‘established’ society to allow this healing to take place.