100 Days

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Hi, it’s been a while. Autistic Burnout is REAL and anyone out there with autism that is going through it, and being doubted or minimized by the NT world, my heart goes out to you. ❤

On September 27, 2018 I received my official diagnosis for ASD/Asperger’s, along with PTSD and Panic Disorder. It was not a magic wand, but the validation after 46 years of life and some 32 years or so of looking for an answer, was tremendous for a moment. Then reality seeped through – this changes nothing. The expectations on my daily performance by those who hold my children have not altered. The compounding effect of too long lost in translation, ignored, and left to struggle solo with the myriad of upheavals I’ve faced in the last 41 months since moving here has not diminished. If anything, it has multiplied in the past 100 days. Just trying to manage the emotions brought on from how things have unfolded, and what is happening to my children while in care, is enough to render me incapacitated beyond breathing. I have seen a pattern emerge, whereby I can be up and active at either work tasks or tending to life tasks but not both – for about 7 hours – and then my body, brain and mind all turn off – shut down. I have to rest, there is no way around it. I accept this about myself now, for now, however it does not minimize the stress felt from the need to perform NT – to function fully – so I can have my children again.

My children have been gone 100 days today. In 6 days comes the one year ‘anniversary’ of the day that perpetuated these 100 days and counting…. I am going to write about that today, in a very transparent way, with the understanding that it is not my daughter that I harbor resentment towards, but the system that failed to hear me, again and again and again and again and again… thus failing all of us.

Since moving here and seeing signs that she definitely needed it, I’ve sought more intensive help for my daughter, but my relentless pursuit to find the help needed kept going and going, without action – as my desperation to get her help was lost in translation and I thereby viewed as unstable and defiant by those I sought the help from. This is an unfortunate but regular ‘trend’ with undiagnosed/misdiagnosed Autistics and the system. My last effort to find help prior to last October’s potentially fatal events, was in April 2017, when I reached out as a parent in need of assistance to the Dept of Children and Families – a case that was started, but when the case worker quit, it sat ignored and untouched by the remaining staff.

October 27, 2017 – It was a Friday. I had taken the car for new tires – an unexpected necessity – and then gone to pick my daughter up from school. En route back to the house, we had a talk about wastefulness, something that was a recurring theme in the house at that time with spoons being thrown away instead of being put into the sink for washing. It was not a lecture, I even attempted a joke about ‘not wasting the spoons that feed us’ much as the farmer’s saying of ‘don’t bite the hand that feeds ya’ goes.

I was unlocking the door when my daughter came up behind me, grabbed the neckline of my t-shirt and ripped/shredded it off my body. I walked in and straight into my bedroom (traditional ‘Florida room’ with glass doors) where I put my purse on my bed and stood there for a minute trying to figure out what just happened and why, and figure out should I step out of the remnants of my shirt or try to pull it over my head. I was thinking about my son at school, the plans for the evening for the children, and that I had a dinner date – the first in 18 years, the first attempt at a date or relationship I had made since my ex-husband.

My daughter came in after me and started yelling at me that I did not understand her, and we had a verbal exchange where I kept asking her to leave my space so I could get ready to go get her brother. I tried taking her by her elbow and guiding her towards the glass doors, which is when she backhanded me so hard she slung me into the table that held the TV.  Then she stared down at me and started stomping me. She put her full 160 pounds into her size 11 shoe and stomped me 7 times in my pelvis nearly direct, a little off to the left.  I stood up, and she threw me into my bed, I stood up she threw me down onto the loveseat at the foot of the bed, I stood up she threw me into the bed again, I stood up and she threw me down onto the floor, I stood up she threw me again into the loveseat, stood up, back to the floor – where I stayed- looking up at her – the thoughts were fast and fierce – why, get to my son, what just happened, this over 10 dollars… It all happened within just mere moments.

She left the room and went to hers, I heard the door slam shut. I kept thinking of my son, I had to get to my son…. I got up slowly and awkwardly, feeling a pain that is not to be put to words flooding my pelvis and belly, the swelling was immense and immediate. I grabbed a bag of frozen peas and shoved them into my jeans, and got myself into the car. Yes, I drove to the school and picked up my son. Each time I moved into or out of the car took more and more effort and time. I came back and sent my son inside – he had no idea what had happened, but he knew something had – I asked him to send his sister out so I could drive her to her therapy appointment. Albeit a little early, minimizing the in and out of the car was a goal in that moment. Upon picking her up after, I then took her to her friend’s house for the weekend (turned out to be just for one night), so I could figure out what to do….. How to keep my son and myself safe was paramount, how to get her help…

What followed was a night of blackout pain. After fixing my son’s supper and settling him, I layed down to focus on my breathing and try to stay calm. Silent, pain filled tears, flowed and I just – hurt! I did not feel that I could call the police, or call anyone for that matter. They had never listened before, and I feared for my son. I feared that the truth would get lost in the facts – and that he would be collateral damage to the system that would not understand my words yet again. If they saw me, and realized that I have no people, then they would put him into foster care! I found myself in and out of consciousness for several hours, and then just passed out til I came to the next morning around 7.

I have no logical explanation how I was able to move the next morning, but I did – very slow with pain in each step. The swelling I toted was about the size of a large grapefruit, and I was solid black from mid stomach to mid thigh, and swelled shut – peeing was a real challenge.

I carried the t-shirt to the sheriff’s office with the intent of filing a report to validate what happened, because my daughter needed some serious help! I didn’t see the buzzer for after hour help, so I looked up the number and called. It was the following morning that I talked with a deputy at a nearby coffee shop. He didn’t understand why I had not called 911, even after giving him the history. But – he helped. He encouraged me to get to a place I felt safe and to call so deputies could meet and I could file the report, which I did. My daughter was taken in handcuffs from the house later that day, to a psychiatric hospital, where she was to be on a 72-hour hold. After a mere 42 hours, without any family sessions or talking to the doctor, or anyone even asking me ‘what happened’, I was called to come pick her up. On Halloween.

I couldn’t work – and figure out WHAT TO DO, so I spent the next 59 days working at getting her into treatment. Easier said than done when you are a poor single parent without fancy insurance… but, she was finally accepted and admitted for inpatient treatment on December 16th. 147 days of inpatient care commenced, whereby the therapist DISREGARDED MY INPUT, completely. She came home on May 14th. We have an agreement, that if she stays within the house boundaries for 30 days then she can have her device back (her phone). She is golden for the most part of those 30 days. On June 15th, I give her back her device and can almost see the switch flip inside of her. We are back to a ‘tug of war’ for the reigns in the house yet again.

On June 17th I have 2 detectives in my living room telling me that on June 9th a female called the facility from the landline modem phone PRETENDING TO BE ME and threatened a bomb on the place. In the interim, I am upturned completely – realizing we have gotten nowhere with the 147 days, and that I am still lost in translation and at a loss for getting appropriate help for my daughter.

In an effort to have something to focus on that I have some control about, I start painting the main living spaces, ceilings and walls. We worked on it all together, the kitchen and dining room areas. As I am working on the living room ceiling the first week in July, I feel a POP – I have re-fractured my pelvis (which I never did get any true medical care for, btw. No money, no insurance).

July 5th, my daughter leaves the house without asking or my knowing it. About 930 that evening, she barrels through the back door that is the door off of my bedroom, and sends me up to the ceiling! I beg her to go to bed, to leave my space, so I can calm down (if that was even possible). It took about a week to recover from that moment – and the next day, July 13th, my kids are taken from me – again.

100 days has past now. I have done all that was required of me at this point. The psychiatrist sees zero reason from a psychiatric perspective that I should not have my children. I am not psychiatrically challenged to have my children. I am socially, societally, worldly, functionally challenged by my ASD and the level of traits that I carry. I am challenged by the cumulative effect all of this has had – the mental, emotional exhaustion and the long-term isolation and lack of meaningful connections – a result of my authentic and deep fear/overwhelm of the world at large which I have had most of my life. And, as I sit here trying to make any sense of any of it, I do feel more persecuted than anything else – it will be potentially April 2019 before my children are returned, pending my ability to regroup/reground/stabilize income somehow. But – the persecutory feelings are a long time in the making (that btw, is an Aspien trait), as I have said I sought help from two different states, and both ignored me. One did not investigate any of the reports filed on domestic battery (common for Autistics to not be believed by authorities, as the NT abuser has the social finesse to spin things, which is exactly what mine did) and the other one left my file begging for help sitting collecting dust for 6 months.

I want to do all those things – in my mind I truly do, and I do get up each day to work at doing them. I struggle. HARD. And it seems endless, the struggle. Recovering from extended burnout on one’s own is a daunting, arduous task. The required trusted, committed connections of supportive friends, a partner, family – I am missing those. Not pity, just the facts as they are. I have attempted to connect with the locals a few times, and each time I see how very not from this planet I really am. Trusted real world connections, the people that help the autistic, support and encourage them through the trials of burnout recovery are necessary. The autistic does not always see, or know, what they need in the moment. Untethered, as it were – without a trusted NT person around to keep me grounded – I wonder will I recover in time. Will I get back to being able to do more than the bare basics of breathing and staring at the neighbor’s flowers, since the overload when I turn my attention to the day at hand comes at me like a tsunami wave – pushing me back to my safety zone. Not giving up just yet – but I am failing to find the way to do what is expected with the cards dealt, and I don’t play poker! I know the odds – are not good, for an adult autistic with severe isolation. The suicide rate among adults with Asperger’s/ASD is ten times higher compared to the NT adult population. No, I am not trying to kill myself. But I am saying that I GET IT, and I am whirring to find the solution to this puzzle. For our family.

Links Included Above:

  1. https://medium.com/the-establishment/we-need-to-talk-about-the-domestic-abuse-of-autistic-adults-5df294504a13
  2. https://www.psychologytoday.com/us/blog/aspergers-diary/201011/the-pain-isolation-asperger-s-and-suicide
  3. https://psychcentral.com/news/2014/10/13/suicidal-thoughts-10-times-more-likely-in-adults-with-aspergers/76016.html
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Double Standard World

Feels like my brain is about to overheat, the wheels are spinning so swiftly, the balls bouncing quite loudly and fiercely, as my sweet neurodiverse processors attempt to …. Work this crap out. I’m still working through what I relate to being phase 2 autistic burnout, as explained in this article from the Autistic Advocate here. I could justifiably put that definition over more than the past 39 months, but we’ll just stay focused on one state at a time as that’s the limit I can handle. As I was saying, it feels like my brain is about to overheat…..
We’re on day 42 of separation as the wheels of justice turn and the system is actually finding it needs a new carburetor as application to our little family has revealed a lot of rusty parts. Day 42… headed to see the judge on Monday. Day in the life here, I have been pushing myself to regroup, regain some physical strength and mental focus, so I can produce viable and billable work for the company I work for – It’s been a tedious process facilitating any sort of return from this level of burnout – which I do not feel anyone around me other than D. gets or truly believes is happening. Besides the point, I push myself each day. Today, started out fairly okay and I had our weekly visit with my children to look forward to this afternoon. D and I had our morning chat, I got organized to pick up where I needed to with the task I started yesterday – and then the phone rang.
With the children in state care, I rather have to answer the phone as I am never sure when someone needs to ask a question or direct me somehow. Today, it was an interview phone assessment, took about 40 minutes. No sooner had that finished, the phone rang again – my attorney going over things for Monday. There’s some bits of this which I cannot fully disclose or discuss at the moment, but to say that ghosts from Christmas past are afoot – ghosts that harbor resentments large and wield a hefty vengeance. I have moved and relocated us – several times – with very good reason. It’s another ring added, a ring of terror not describable. And there is very little to be done to throw a Harry Potter cloak of invisibility over things while they are – allegedly – being sorted out for the best to help everyone here…. Ehem.
42 days. I am complying with the requests on me. Jumping through the hoops. I am taking the classes, and glad to have them. I have filled out and filed all paperwork needed for their base evaluations. There problem lies in finding a provider to oversee/perform the ASD evaluation for me, an adult. Huh? Yes, I already had done the homework and I sent that 411 along – I call bullshit on that, it really is a matter almost of ‘too many cooks in the kitchen’. Too many parts and they are not all working together. I think this is where the director throws the script in the air and shouts ‘REWRITE!’. Have a laugh, please… but in all seriousness, the lives and futures of three humans are in the hot seat at the moment over ‘who is going to pay for this’ and we are talking about a couple conversations and a 70 question assessment, basically. There are others, face recognition for ‘theory of mind’ testing and a lot of tests, it can be 500 to 5k.
It’s just so freaking sad, to me. I read the daily struggles and testimonies of fellow Aspiens, and some are in relationships and some are in jobs, some have the lot of family, spouse, job. We all struggle, differently and at different levels. Some that are fully equipped with what life has to offer, struggle nearly as bad as I do. Some that are set up in life as I am, with next to no humans or NO humans at all and disenfranchised from core family, are happy as larks. If you have met one person with Asperger’s Syndrome, you have met one person with Asperger’s Syndrome as the saying is in the autistic community. This is in part why I disagree with Asperger’s Syndrome being removed from our books. High Functioning does not have anything to do with the level/severity of traits for the individual. We still have our vocabulary, but day to day functioning in the real world, socializing, managing obstacles and upheavals, coping and regrouping our processes, that all varies. Apologies, I digressed.. but the empath in me, (add in the aspie, that is like… an empath on speed…. I think) I do feel deep pain on behalf of these folks, I just so much understand it all.
When you add in the layers of domestic abuse, starting with my core family, and the lot of it with my ex in prison… even a neurotypical would be lost in these same circumstances I would think. But neurotypical or neurodiverse, the question remains the same at the end of the (my) day – How- after decades of instability, misunderstanding of self and the world, and then threats to one’s life, is one to to be stable of mind, if they never feel safe? How is a single mother, afraid for her own safety, insecure in the world as it stands for whatever reasons, alone on her own with only herself to do it all, supposed to be a strong cornerstone for her family if she herself cannot feel safe?
Please, someone answer that question!
Please, someone tell me fucking viably how this is supposed to work. No one can, no one can actually relate fully to these circumstances. No one wants to relate to these circumstances! How can the world… how can the system… how can any human….. Ask of another human to do what they themselves cannot imagine doing, enduring, living through?
I get it now and again, a message from a NT friend saying, “I just do not know how you are coping with all that is happening”. Guess what I say… ‘I’M NOT’. And they fall silent. The normal world expects…. But in reality, could they do it? Not this shit.
So my day today, a day in the life: I got up with the intent of working a good 5 hours before the scheduled visit with my children. I had my talk with D and we planned things out, I got in that mindset, I sat down and was working and then the phone rang. First was the unexpected phone interview, then the attorney, then the visit with my children, then the notification that there was no way to throw a blanket over or seal the records of these case proceedings, so I then found myself sitting in the parking lot from leaving the visit and my thought – “Oh yea gotta go home and jump back on the work wagon after this!”. And yep… most neurotypical people can easily compartmentalize and do that, and that is what the world expects – but us NeuroDiverse folks do not roll that way. Not us Aspies. We do NOT and I say this clearly now – have strong central cognitive coherence. We do not go from one thing to another and transition back to number one smoothly. Some struggle more than others…. I would fall in the ‘more’ category, I also have a closed head injury going on 42 years now that exacerbates the issue no doubt.
It’s after 9 pm. I have fought the idea of eating something, finally ordered a pizza. I have fought the idea of going out for margaritas, because I am here that lost and that alone and it is that fucking quiet. I settled for some pint size IPA … IDK, I don’t normally drink. I should be sitting here doing my billable work, it has to be done. NT folks would be burning the midnight oil no real issues other than maybe hunger and physical exhaustion… that is what is expected. Get. It. Done. It is alcohol, should not be consuming, but are you really going to judge me? How long have you sat solo, really with not a single person to have coffee with to review and regroup with…. Day in and day out for decades now it seems… but definitely for years. Been on this train with the ex that wants me dead for 18 years… so idk what else to tell ya. Who wants to come settle the cartwheeling overheating processors in my brain?
Being a single mother is hard. Being a single mother unaware she herself is autistic and she herself trying for decades to push herself a trapezoid into a square hole… to do right by her kids, to meet expectations, to live…. And to fail day in and day out, day in and day out, no matter what, day in and day out… day in and day out…. To be ignored when seeking help, to be labelled time and again as fucking crazy and outcast, discarded, ignored… only trying to do right by the kids, only trying to fix things for them and hopefully others and then….. To be here.
I do not know. What would you do? Please do tell… please do explain.
Double edged, double standard world.. Fit in, or fail. Do as expected, or lose. Meet standards, or be alone.
Angel love and peace, I gotta jet. Cold beverage and cooled pizza await. And further insanity… really, is this supposed to produce sunshine and fucking rainbows?

Miles Ridden Towards Autistic Burnout

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…

Source: An Autistic Burnout – The Autistic Advocate

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.

“Do I have to stand in the street naked to get my kids some help?!?”

Yes, I said that.  Yep. Sure as fuck did, at the end of an IEP meeting.   I do not remember saying it exactly, but I am told that I did, and I know that I have thought it many times. I was so rattled by the conversation and the many others in the room, coming at me with questions and comments faster than I could process or respond (I lack what I refer to as REAL TIME RESPONSIVENESS) and being totally misunderstood the entire time, worried also about my son who was not feeling well and home sleeping during the meeting, that – YES, I said that.  But what was my neurodiverse brain trying to convey in that totally inappropriate comment? More than anyone in that room realized, and more than you are thinking at this moment as you read these ramblings.

On the offset, it does mean that I have gone every conventional route possible for year after year now and gotten no where, and I am both out of options and exhausted as only an Aspie could be –  having put forth a seemingly bottomless amount of effort and energies into trying to get the right help so one little family can turn the corner and start doing life on solid ground again.

It is also a statement on my own self esteem (seriously lack of it!) and self perception.  With nearly every person that I have cared for deeply, in any regard, I have found myself betrayed – found that I was used for their end, or in some capacity to meet their needs, or to get something they needed.  As I am now learning, the depth of bonds that I form with these individuals, whether it is mutual is not a point, the level of commitent and care and concern, the depth of love – cannot be put to words exactly, is an aspie trait (particularly for women).  This bond is forged on a myriad of planes, and the loss always brings me to the depths of darkness. The ‘why’s’ begin to bounce in my head, while there’s a fiery hot, searing pain taking over my heart and consuming my spirit. I have to make sense of, understand the betrayal… understand what did I do wrong, try to fix things sometimes.. I beat myself up for being dumb, too trusting… incapable of communicating effectively, that my very genuine desire for that person … isn’t enough, the rest matters.  The communication, the ability to understand things, that I do not.

There does not exist any bond or  connection, or sense of safety or peace, or comfort from, any of those that are my biological ‘family’.   Never has been, with the exception of one, and she has long passed. I feel I have been the greatest disappointment ever to my parental units, and my brother hasn’t talked to me since my son was 7 months old.  Some that I have had connection to for years, I have reached out to over the course of these current circumstances unfolding, to get what was no more than lip service.  Now those folks just don’t bother – I am not one that people want to be around, I never have been. I am not one people want to include, I am the one that is just here until someone needs something and I can do it.  That is honestly how I see myself, how I feel – and that I am here totally fucking alone – always – is evidence enough for me that I am here as a servant to this screwy planet, and at the end of the day get to face the darkness alone.  I do not have real life, in person friends any more. I cannot seem to make them either, and that I can say goes to the long term, endlessly devastating, betrayals over the course of this life. It’s been a series of bullying, being taken advantage of, beaten upon, wanted only for what I can do for someone with my mind or my body, betrayals of the mind and heart too many times…from being too trusting, too willing to want to help and the reason for that – because at the core I am still looking for some acceptance.  To be included. To be worthy of love. But my Aspie gets in the way…. So I am perpetually alone. LONELY. Depressed beyond words.

I do realize, the more I read, that I have traits to the extreme.  I do. I can’t lie, so I may as well just come out with it, right? Given the total lack of community, support, family, lack of a partner, not having a trusted circle of friends, and the level of traits that I acknowledge in myself – I do not see the end of this with my children being some great success story.  I just don’t. Now, the negative, doomsday thinking – that is an aspie trait – but even in my logical mind, I don’t see this ‘working’ as so many think that it should. Single parents at this level of traits only succeed with a trusted circle of people around that love accept and help them. That’s the consensus.  

So many think that I should just simply accept, or rise above, this deep grief stricken loneliness that pervades my soul and has for most of my adult life.  I guess that is easy for neurotypical people? Just rise up, greet the day, get ‘er done…. It’s no big deal. This gets lost in translation and is unrelatable so much that I have given up trying to convey what it has done to my soul and still… fail.  So I say this: Loneliness is the number one silent killer. Humans are not meant to be islands all to themselves. My level of communication and social fallacies…. And actual near fear of people in general now from being misunderstood and then ignored for so long, has me not wanting to leave the house, not wanting to even go to the mailbox until after dark…. Add in my true inability to conquer normal daily tasks like a normal adult without a tremendous amount of effort and followed by an exhaustion not explainable to the normal world at large (please do not ask me to go to the grocery store), that brings on massive anxiety…. How am I ever going to be able to be ‘good’ for my children in the day to day?  The odds, with my level of traits, are not good from what I read.

There was a time, for a while, that I had that ‘someone’.  First he was just a friend, that always seemed to understand me, or worked hard to understand me – and would hang, let me vent – help me to PROCESS and see things more clearly… calm the ping pong balls!  He was my translator – he translated the world to me and me to the world. It was great, at the end of the day, to have someone to go over things with – helped to let them go, helped to be able to sleep at night and not have the balls bouncing off the walls of the internal racket ball court.  So fucking loud! Turns out Aspie women attract cluster B personality types. We are too trusting, we are easy targets, and that person turned out to be sick on his own, a predator, a pedophile.

The more I sit with things now, the more I remember my 20’s.  When I had only my cats. I had to have them with me at college to cope, they went with me to California, to Birmingham, and all over.  No friends. No partner. I don’t recall a lot of my 20’s, because the heaviness of being misunderstood, lost and alone then nearly crushed me, and I spent too much time drinking.  Too much time trying to numb myself. Too much time acting wildly, doing things under the influence of alcohol that I could never conceive of sober, let alone have the courage to act upon – just trying to be accepted, to fit in, to matter to someone, to be loved.  I can’t do that now, the drinking – kidney damage from the incident in October, and I am not the robust, young, unbeaten up person I was in my 20’s. But in the overall scheme of things – it is the same. I sit, with the cats. And myself. Feeling more than a little lost.

Lost in Translation

I’m sure everyone is wondering about the ping pong balls, and we will get to that in time.  For now, Hi there…. I’m ME, a 46 year old single mother finding out that I have Asperger’s Syndrome (High Functioning Autism, for the “politically correct”).  I love to write creatively, but I am not going to do that tonight.  I am not out for a Pulitzer, or any high 5’s for a job well written.  I’m writing this as a means of discharge, as there is a shit ton going on and I am here completely surrounded by just myself.  Quite honestly, it’s exhausting answering and discussing this over and over and over again…. BTW, this is not being written for young eyes to see.  Some would say that I should come with a warning, and definitely anything I write at this point in time is not going to be filtered or edited for content.

About those ping pong balls now.  Consider that a visual of my brain at any moment in time, especially nowadays and to be honest probably for the last near decade running.  Why I have pervasive insomnia, why I am writing this blog instead of focused on paying work tasks long overdue, why I panic and retreat to stare endlessly at the walls or the flowers blooming next door instead of sorting the piles of paperwork and doing the many, many things pending on my ‘to do’ list.  Or work.  Right now, I am in the biggest freakin’ mess of a lifetime, and it is because of those damn ping pong balls.  Allow me some grace and I’ll try to explain.

I’m a domestic violence survivor, and to one degree or another so are my children.  My ex husband is in prison for a felony A conviction, a story I won’t be telling you tonight (maybe for the book!).  The children and I have been on a whirlwind, trauma affected, journey, for too many years now.  He went away in summer of 2013, after over a year of fighting a system and community that did not want to accept the truths presented to them by me, misunderstood, lacking social agility and communication acumen in the real world, just trying to fix things for her kids and ‘do life’ with some semblance of peace, structure, and harmony ME – who took yet another plunge into the normal world seeking help.  I lost my children for several months, NOT heard by those there to serve, protect and help.  Seems to be a trend I am now learning of, as I read “Perhaps most worrying of all was the third theme that emerged: abuse that was being reported went unnoticed, overlooked, or not taken seriously — even in one case where it was reported to the police. Many thought this was partly due to the relatively superior ability of the non-autistic abuser to subtly control the wider public perception of the relationship, with abusers often using their superior social fluency to make the abuse seem trivial or nonexistent”.  WTF!  This is what happened to me, over and over again.  Seven times.  Then the worst imaginable happened and we are where we are now. You can read the full article here.  Never believed, perceivably mocked for reporting the abuse, given little regard by the system there to help.  I tried.  Again and again, I tried to leave and build a life for my child.. and then my children, when my son came along.

We moved – a lot.  Both before the criminal trial in 2013, and after.  The ‘after’ moves comprised 10 moves across 3 states in 3 years, landing us where we are now about 38 months ago.  We are all shaken, we all lost everything -materially, “family”, community, familiarity, some friends.  The moving was for safety and then for necessity.  On a single parent, no child support or family support, budget – it’s only in coming to live in a family owned home that we have a roof over our heads.  Thankfully, now it is a NEW roof (a story for another time) after a near 2 year battle to make it happen.   Structurally sound (mostly) – for the kids.  A place to put down roots and to watch them spread, a place to really call home.  A real neighborhood, with streets to ride bikes upon.  That’s what I have been after for them, so they can stop – breathe – and get back to being kids.  I thought we would move here, find some second hand furniture, paint and freshen up things, and go to the beach!  Regroup, rebuild our lives, return to peace and find healing.

It’s not quite worked out that way.  The house was ashambles when we arrived, and that has been an ever present stressor and factor, ongoing to a point as I write this, yes.  My sweet daughter and son, both with juvenile ptsd and having dealt with more than any children should in any amount of time – Gosh, I just love them both so much!  Within weeks of getting here though, things starting unraveling with my daughter.  I worked to  get her appropriate help within the avenues available to me.  It has been a haunty endeavor, with a couple steps forward and then a dozen backwards.  I don’t want to write in any way that shames her, I do love her and still now do not want anything more than to find her the appropriate help so she can be restored – soul, heart and mind – which she fully deserves.  The power play, the severed dynamic between us, and the equally strong desire and need to be present for my ND son, has torn me into shreds over the past 38 months.  I understand it more now, the struggles with parenting a NT but emotionally traumatized child and a ND child as a ND adult, as I am trying to learn a new truth through the lense of Asperger’s Syndrome.  “Parents with Aspergers exhibit either minor and/or significant problems in their parenting. Problems experienced by moms and dads who meet most or all of the diagnostic criteria for Aspergers are significant and yet little understood in the child welfare community. This is in part because the able autistic parent community is invisibly disabled.

Problems in parenting are linked directly to the core neuro-cognitive clinical features of Aspergers itself, namely weak central coherence, poor cognitive shifting & lack of a theory of mind.”

https://www.theneurotypical.com/parents-with-aspergers.html

Another interesting article states further problems with women yet officially diagnosed and their run-ins and problems with the system.

“Autistic women are, however, still likely to remain undiagnosed. A survey by the National Autistic Society found that 42% of females have been misdiagnosed, compared with 30% of males, while twice as many women were undiagnosed compared with men (10% compared with 5%).But experts are warning that these mothers risk having their children forcibly adopted in the fight to get them diagnosed and supported, as social workers misinterpret the parent’s autistic traits as indicating potential harm to the child.“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould.” These are very worrying statistics,” said Baron-Cohen. “Whether these mothers have a formal diagnosis or not, if a lot of these mothers who have autistic children have undiagnosed autism themselves, they might struggle with communication with professionals and appear confrontational rather than diplomatic. The risk is that social services see this as a difficult mother rather than recognising her communication issues are a part of her own disability.” More here.

Definitely I have been misunderstood by the child welfare community, in the state that re-traumatized my children and myself after the arrest and indictment of my ex husband, and definitely by the community and service providers that I have sought help from here in our new place.  Perhaps why I fight yet again, for my children, who are – again – in foster care.  Definitely 100% without a doubt – me.  I have felt, personally, as a one armed Captain, trying to navigate a ship, that is attached to a rollercoaster, atop a tsunami wave, as I have worked to remediate this home, settle the family into a new place, learn where things are in this new place, continue to work to earn enough to keep the bills paid…. all coming at me rapid fire, without any order, at the same time. Without viable help, though it has been sought from every avenue, and a few new avenues invented in an effort to make headway, without success.

Definitely I am 100% Aspie.  Textbook, some would say.  In 1994, when Asperger’s was added officially to the DSM-IV, I was 22.  In college.  Studying psychology and theater.  Without but a couple friends…. well, really just one – Sue.  Totally misunderstood by my parents for my line of study, for a lot of things.  Completely depressed.

I remember telling Sue mid term fall 1993, that I felt that I had to either disappear, since I felt like I was from another planet, or kill myself.  So fucking LOST.  I didn’t kill myself… I did think about it and that is true, and typical of Aspie girls around that age.  I left college, boarded a plane January 1994, took off to California.  Where I was further misunderstood, lost the job I had and the place I had to live in the same day, and ended up on a stage at City Limits, stripping.  Determined not to return to the world that had turned it’s back on me, forgotten me, misunderstood and thus penalized me. Totally fucking Aspie.

Yes, I await a means to get an official diagnosis.  It’s a matter of being a poor single Mom, making “too much” (19k last year – puhleeeese!) for Medicaid, and not enough to afford private insurance.  I have sought out and found the official test online however – The RAADS-R…. scored a 199.  Check it out below.  Take it yourself if you want.  Make an account, answer the defining questions, and then go for it.   Would love to hear about your results.

RAAD R

Looking at my life through this new lense, I am finding some bits of self acceptance and answering WHY to many, many previously unanswered moments…gives me some peace.
I haven’t a clue “who I am” outside the tasks I perform, and I never have.
I shake my hands, at my sides mostly, twisting at the wrists very fast back n forth. Play with my hair. Flick and bite my nails. The hands, I have forced control over except when totally alone. I’ll clench them otherwise. These behaviors I got grief about as a little girl, 3 yrs old, and onward. Not ladylike, Sarah!  It’s called ‘stimming’ btw..
I am a social nightmare, I have said going on over two decades now that I would confuse Mother Theresa and send her to the bar looking for drinks… I don’t mean to.  I DO care, way too much, about those that come into my life.  I am way too trusting, probably more than a bit gullible, a lot aloof, with a heart that will stop traffic to rescue a stranger’s adirondack chairs (12 of them!) and piss off every driver on a Saturday afternoon, among many other things.  As I now, again, work to rescue my children.
I do want to fix things and to help, and I am just one person with two hands – I do get way overwhelmed, and can remember every stage of life finding myself melting down after a day of interaction with NT people, or out and about doing ‘normal’ things.  A job in an office. Going to run errands on a Saturday.  Now I try to step away and ‘turtle’, as I like to call it.  I am trying to figure out “who am I”, because I really do not know beyond the core of my heart – deepest ever desire to fix things, to HELP, to change things for the better, for everyone.  Maybe my transparent mess of words will resonate with and help someone down the road.  Maybe this systemic failure to my little family will fix things so other families like ours get help instead of perpetual harm.  I have filled a series of roles in my life, adapted to what was expected of me, but as for being an ‘individual’, that I have not done probably since I stepped on that airplane, January 28, 1994.
“It’s only after a diagnosis that a woman may ask, “Which parts of myself are an act and which parts of me have been hidden? What do I have that’s valuable inside myself that can’t be expressed because I’m constantly and automatically camouflaging my autistic traits?,” Igelström says. “None of those questions can be processed without first getting diagnosed, or at least [self-identifying], and then replaying the past with this new insight.” Read more here.

Well, that’s it for the first edition of my ramblings.  Maybe getting some of this out will help sleep to come, help focus to return!  Til next time, Angel Love and Peace to each of you.