I’ve started several times this week to compose #3, at the urging of my person to continue to online journal for my own clarity and healing, and to help bring a raw education to these topics – I have written three or four different entries in my mind, late at night whilst trying to be ‘at peace’ amidst the bouncing bouncing bouncing balls of thoughts in my head. However, each time I have sat to write, I have found myself simply unable – Today I am doing this for my person – He has bore witness to the daily happenings as they have unfolded, turned, twisted and blown up – the one person in this state I fully trust at the moment, and one I am thankful daily that the universe brought (back) around. He’s a true Earth Angel, an older brother sort, and I believe it’s not the first life we have met in, as I have felt that connection with him always.
I have nothing left of value to lose in baring all – my children are taken – for an indefinite period of time. I am going to dig into my old tool box of skills, and try to use my words to bring some light to the real challenges of being a single mother, domestic violence survivor, late diagnosed with Asperger’s Syndrome. Until this puzzle is solved, I am on a mission to find the answers. For my children and our family – yes. But for a bigger change, because this crap should not have ever happened and should never ever happen again.
What I collect, you might say – are facts. Bits of information, from here and from there, and it all gets stored away by the ‘little guy upstairs’ (as I referenced him since about 15 years old in a world way before ‘Google’). Like magic the connections start – the puzzle begins to take shape – I see parallels and connections between bits in rapid fire succession, on multiple levels/planes/realms and suddenly a mass spiderweb of connections forms, then I see – and at this point is where I stutter, falter and sputter to a stop because finding the words to explain what I see – without folks looking at me like I have three heads and a clown nose in the middle of my forehead – generally proves pointlessly exhausting!
I joined a support group for Asperger’s, and I have taken in a lot there. What I find is that I am definitely NOT alone. It tears at my soul, I feel their pain as it’s my own, as I relate to, understand, and just all around feel for them and their daily struggles because they are mine, too. There are so many of us, around my age of 46 and older, both male and female, who are finding out just now that we have Asperger’s Syndrome. (Yes – I am going to keep calling it that. The World Health Organization has not changed it’s name, only here in the USA has it shifted. I disagree with the change, and will ramble about that another day). It’s astounding really – across all continents, socio-economic levels, without bias to race – a mass populace of us – figuring it out after half a lifetime has passed us already. Many – not just me – have been lost to translation for far too long, lost to the world at large – misunderstood, overwhelmed, taken advantage of, discarded in many ways – misdiagnosed or not diagnosed at all, left in this whirlwind without any understanding as to why – until now. And – there is a lot of JOY, and “YES! I get it!” There is a lot of sorrow, deep sadness, feeling of loss – loss of time, loss of a life of time. There is then also anger, frustration, and speaking for myself – given the current reality that my children are in foster care because of the state I have come to find myself- feeling victimized to a point. I have been seeking assistance, guidance, help for a long time (even before children, decades ago!) and from any available avenue – but am now the one ‘to blame’ for these failings. That’s how I process it.
I have cried exhausted incoherent words to D time and again, not understanding myself why it feels like my brain has simply turned off, why things I could do last month or a few months back all of a sudden – are a real struggle or impossible to tackle. I have said again and again, daily some weeks – I just don’t’ understand or know what is wrong with me. It has come in waves, first at a slow rate but definitely increased in frequency and duration over time until I am where I am now – Too exhausted to engage even in written form – I am not engaging on social media in groups, have not posted in weeks, because I can’t engage – even though I may want to.
This week – marks 7 years since I got into my Oscar car and left my ex husband (and temporarily, my children) to gain solid ground once and for all after too many years of cyclic abuse and leaving but not being able to ‘complete the mission’ as it were of getting life back together for my children. August 10, 2011 was my daughter’s 1st day of 2nd grade. I took her picture that morning. I did not know it was the last photo of her – full of childhood innocence, wonder, and awe – that would be taken of her. That I would take of her. I did NOT know…. I would give anything to be able to go back to that day. HUG her – look into her innocent eyes, see that sweet pure smile – untarnished, unbroken… Keep her UNBROKEN.
August 15, 2011…. To this day, I still abhor myself for that choice. It has led us down the path we are on now, and no matter the ‘spin’ put on things, I just hate myself for not taking the children with me. I believed they were safe. I believed they were better off in familiar territory while I took a short few months to regroup and get myself together cognitively, physically, mentally – long-term domestic violence diminishes and can immobilize a person – I wanted nothing more than to be a good Mom for them.
It’s been … a path I would not wish upon my worst enemy. One trauma leading to the next, and I have asked, begged, cried, shouted, pled for assistance or guidance or advice or anything available to help get us there and been misunderstood and/or disregarded. Even by the people wearing the badges, holding the certifications, with the education and degrees, who are supposed to want to find the answers and help. It’s a lot…. A lot of pain, a lot of overwhelming sadness, I still feel it all – theirs, mine and ours. It’s all seemed so senseless, without any good reason.
Please – let there be GOOD REASON for the suffering of my children and myself. Please let the right person see this and realize – No, this should never happen to a family! Not my family, not the next family. See this and pick it apart and FIX THE FUCKING SYSTEM.
More exhausted, too much to be attempting writing this but I am and I will – if it is all that I do today. I have been looking for the answers – to finish the puzzle – starting with this total inability to function. I must be crazy? Lazy? Depressed?
No. There is a name for it. Autistic Burnout. It’s not ‘recognized’ by the medical profession (go figure!) but is very real to anyone with autism. It’s like a neurotypical nervous breakdown on speed. It’s unexplainable, unrelatable to the NT world, but I have been trying to express it for a very long time now. Many times. The many quotes I will use below (since I am in full on burnout, best I find the words built out and save a few drops of energy imho) can be found here in a blog by fellow Aspie, Ryan Boren.
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…
|Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person falls apart. All autistic symptoms get worse.|
Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.
This is so true. The answer to Autistic Burnout – and what the NT world expect- do not jive. It’s apparent to me that, though the ‘system’ says they accept diversity, including neurodiversity, they actually are not equipped to understand what that means exactly or how it translates to daily life. Folks, you can accept that I am a trapezoid but are still demanding that I fit through your square holes!
|It’s a disservice to autistic people, to any diverse populace really, to say “We accept you, now this is what you have to do, these are the steps you have to take, to fit into OUR world”. – my words.|
When you hit burnout, you can take a long time to recover. Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards. So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge. And once you burnout, your coping capacity is diminished. That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.
Imagine – day in and day out – being thrown off course, tossed a new set of problems or tossed yourself and taken down physically, but still trying to stay on top of things for the well being of your autistic child and yourself, and trying to keep it together to do your paying work, and keep it together to talk to roofer and AC contractors, and express the gravity of, and hazard implications, to your 78 year old, retired, absentee homeowner father, and juggling the daily demands of home and life.. an ongoing, never ending saga spanning 38 months…
I have been so exhausted – at one point, in Sept 2016 – I thought “been in chronic, pervasive stress with high anxiety and shifting challenges for so long, I think I may have chronic adrenal fatigue”. I looked into it, did my research thoroughly, and yes – the physical symptoms I had matched up with adrenal fatigue. I even went and had some blood work done (which did not indicate adrenal fatigue), spoke with a physician’s assistant, who wanted to put me on Valium – which I refused. I tell that story, because it came back to mind as I read this:
Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. On page 33 it says:
“She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”
You can think it’s simple: Get up, take care of the day, be flexible, adjust work schedule to spend hours doing other things, have energy left to do the work that pays the bills and sort the paperwork, tend the chores, fix the house….. It is NOT. I have done it now for years on end and the exhaustion I feel, where I am at – the level of non functioning I find myself at- is NOT a game. It is a SCARY place to find oneself with only oneself to regulate oneself through unfamiliar, unscripted territory. In reflecting on the decades past, this is NOT the first time I have had Autistic burnout as defined. We’ll have to delve into those memories another day though.
Although a NT person faced with the same set of rolling challenges over the same amount of time may compartmentalize and handle as a NT and come through mostly unscathed, truly it would still be a challenge. Truly, no one I know or have known or even just chatted it up with and tried to convey the daily unpredictability and instability of life as it has unfolded here to, can grasp the totality of it all. Yet – I stand judged and persecuted for failing – when I did my best to be NT and play the game – now I know that I didn’t even know the name of the game being played, let alone the rules to follow.
Seven years. That’s 50% of my daughter’s life, and nearly ⅔’s of my son’s. That’s too much time, too much trauma, too much struggle, please let their losses – COUNT. Let this crap we go through now MAKE A CHANGE for the BETTER somehow. I will suffer this pain, I will offer what’s left of myself – 111 pounds, not worth starting the bbq for – at this point, from this depth of inexplicable exhaustion, I would gladly hand it over IF it would HEAL things not just for my children but systematically… so the next family, and the many more beyond… will not suffer an endless, needless traumatic path flawed by the signage of a broken system. Angel love and peace over all ~ Til next time.