Hi Everyone.
A thoughtful LMHC referred me here.
Can you *HEAR* that? I can't stand the noise! I hate fireworks. For the light, and for the sound. And your stereo that I can hear through the wall (turn it DOWN, for the THIRD TIME, Normal Person, BEFORE I CALL THE POLICE)!. Those kids a mile and a half away at the local park, screaming at a frequency I didn't know human vocals could produce. The traffic in a major city a hundred miles or more away, traveling through the earth's crust. The way the neighbors in the building INSIST on slamming their doors. The ankle biter who won't stop barking. The fridge and water heater turned off at the breaker box. Ear plugs in, took my meds, I can STILL hear a low-frequency hum. It drives me crazy, the orchestra of overload that is combined far-distant, unending, low-frequency sound (major city, 10 miles away, ample air traffic because there's a major airport there & we're near a Naval Air Station) with the high-pitched incessant tinitus that makes my head ring, day and night, non-stop. As soon as I surface enough from my psychotropic slumber (when I'm lucky enough that the meds do some good, which I cannot rely on from night to night), I know it's all over. Another day in hell has begun.
Like Karen's story on the website, I was treated with utter disregard by my parents and most of my subsequent "caregivers". Much of my childhood and adolescence involved the child welfare system with its myriad institutional "group homes" (should be called "processing facilities"), emergency shelter care "homes", psychiatric hospitals and residential treatment centers. I learned to live with my bag always packed, and one foot out the door, because, eventually, Someone In Charge was going to get tired of me and send me away.
I still never want to settle in when I move somewhere new. I live my life with one foot out the door, always, and my cherished Bag that holds all my most important stuff (mostly now so I can always find those things when I need them, because staying organized has become a problem for me). It seems pathetic in its optimism to me, to settle in, that THIS PLACE will be the one that finally works out. This is a game I have played with my issues for a long time. I'm finally finding out that other people have this, too, and that there are clinical terms for these conditions. I'm tired of being told that I'm crazy and that "it's all in your head", because it's utter bullpucky. Something is medically going on for me.
Like Karen, I was picky about clothes that often felt too tight. Mom, for the years she troubled herself with her pathetic attempts at motherly duty, manhandled me, often times picking me up by the waist of my pants (OUCH!), throwing me into my room and slamming the door behind me after she had unloaded whatever verbal input she had to spew (read: YELL). She often left me with babysitters so she could go out. She had her own psychiatric issues for which she was untreated, and this helped nobody, least of all a child in tow.
Later, I went to live with my dad. First couple of years were okay, a honeymoon period. Eventually, he grew to hate me, too. I desperately needed medical attention for other issues, but was confined to my room to suffer alone, wheezing for days on end. I was treated like a prisoner, and eventually threatend with confinement to the local state mental hospital (fun factoid: that hospital is now a state college campus - go figure!).
Frequently, my dad made a big deal of leaving me home whenever the rest of the family went out. Maximum verbiage for maximum impact. He wanted to make it hurt as much as possible for me. He knew I was a sensitive kid and he actively used it as a weapon against me, with all the calculated precision of a sadistic genius. When meal times came, it was food tray left outside the bedroom door, a knock on the outside to indicate that food was there. Reverse protocol to return the dishes. I had to knock on the inside of my door to request permission to use the bathroom, too, and was forbidden to do so in the middle of the night, when I often needed to go. It was drilled into me that my sensitivities made me weak and unworthy of care, that I was defective, a burden, "beyond metaphysics" (thanks, Evil Stepmother) and "going to die old and alone" (thanks, Dad). As soon as Counselor of the Week invaribly suggested to dad that be involved in the solution, it was time to move on to another counselor. Transactional Analysis? No, thanks, we're suing for malpractice, because your "therapy" is just "an expensive, time-consuming play hour".
When I reflected dad's volatile temperament in my own frustrations by throwing things when I was hurting or upset, I was berated for the behaviour, taught that girls and women do not express violent or angry emotion no matter how severely they are mistreated. I was always hammed with "be nice, be nice, be nice", which I now know meant "be subservient, submit, submit, submit". That lesson never did stick, and to this day, like the Incredible Hulk, I feel, at my core, a pure, molten rage that never subsides.
I was prone toward academics when I was young, and so I did quite well in school, but for the "citizenship" grades. I was an unintelligible dichotomy to all but very select few adults who passed briefly through my life. On the one hand, I was not being sufficiently challenged with academics and did well in most subjects (math be damned!), had high standarized test scores, and so was bored. On the other, I was disruptive, always talking out of turn, could only sit still for limited periods of time. I was often sent out of the classroom to stand outside the door. Just like at home, I was singled out for "special treatment", which meant I was "bad". I really didn't get along with others very well, did not seek out my peers of my own volition, and I still don't. I'm convinced that with most people there is simply nothing to talk about, and being forced to engage in small talk is extremely painful. It's amazing to me that I have a long-term partner in my life. He's the sweetest person in the world, and he's kind of my bridge to the rest of humankind.
It's taking me some processing time to evaluate my past experiences by the metric of having sensory integration issues. I don't think there was much work being done to research this in the early 1980s when I was a child. At present, the earliest things I can think of are carsickness (did a lot of roadside puking as a kid) and the toilets at school (which scared me!). I was reminded of these when I read one mother's account of her young daughter on another SPD site. The loud flushing, and the way it echoes off the tile walls in public restrooms STILL bugs me to this day (I'm flirting with 40, and not sure I wanna get involved with him!). I seriously hate laser flush toilets because they never work when they're supposed to, only when you're not expecting it. Carsickness is not much of an issue any more, except on very winding roads I might get mildly nauseous.
When I was 15, in a foster home, I was having one of my episodes of "f*ck it all to hell I CAN'T F*CKING SLEEP AND I'M SOOOO TIRED". I kept hearing the sound of water rushing and I assumed I was having auditory hallucinations. My room was on the side of the house facing the street, though the house was set back a good distance from the street. I looked out the window and I saw water cascading through the street from a neighbor's busted sprinkler across the way. My sanity was vindicated, but I was still frazzled, so foster mom gave me a sliver of a Xanax and let me camp on their floor for the night because I was so scared.
I still assume noises I can't place are hallucinations until I can reasonably ascertain that it's coming from 'out there', not 'in here'. It's quite stressful. My condition has made me a target for harassment by others, even as an adult, and I have had to move several times as a result. When I have to venture out into the world, I do my best to cultivate a STAY THE F*CK AWAY vibe and command as much personal space as I can. I can safely turn this off when I am with some people.
I remember seeing a button in a novelty shop as a teen that nicely sums of my views on socializing. It said : "Oh, no! You're not going to TALK TO ME, are you?". So, if I open up to you, and I seem like I have too much to say, it's no small thing for me. I've waited years to be able talk to someone who could understand this, and it means I feel like you're a safe person to say these things to, and that I respect your views and your input. So it was recently with the counselor I met with. O:-) Years of psychological constipation resulting in an inability to give words to this, and now I have a lot I need to say so I can be properly evaluated, as I am. Because there are no medical records from childhood (to long ago, been destroyed), no parents or other relatives who will speak to my early development. Nobody. Just me and my little testimony. And maybe a few words from my partner, who has put up with me for 15 years.
Right now, my quality of life is such that I've been on disability on and off since I was 17. I did not complete any measurable amount of my post-secondary education, though I did try to go to school. I got bored. I also started really not getting along with my teachers.
I don't go out if I can absolutely avoid it. I have a driver's license, but absolutely hate driving. I remember being terrified when I was learning in my early 20s. I hate the grocery store for the lights, the noise and worst of all the crowding. When I DO have to go there, I generally make like a guided missile to get in and get out. I avoid traversing any aisles where there are people, as much as I can. Partly because I don't want the interaction, partly because I don't want the possible physical contact or the troubles of negotiating spatial particulars that are often off the mark for me. I'm constantly fumbling silverware, getting food all over. I run into things, end up with bruises that I can't recall getting. I am forever dropping things or knocking them over. I often lose my balance, and have even broken my foot because of this. Like Karen, I can't wear cute shoes or do any of that fashion stuff because I need to be comfortable. It's soft "comfy" pants (like she said, yoga pants and such), backpack and ankle-supporting paraboots for me. I've long felt like I had a very poor sense of where I end and the rest of the physical, spatial world begins, and this is a great source of frustration for me.
I haven't been employed in my field in over 10 years. I am far more skilled in my area of expertise now than I was then. I have kept up, on my own. I could be a valuable employee for someone, somewhere. But I have no idea how to talk about myself in any marketable fashion on a resume, much less go through the act of doing a job interview that would sufficiently impress enough to elicit a job offer. I feel left behind and useless. In many ways I could be a good fit for starting a business, consulting in my field. But in addition to the thought of all that is necessary to start and maintain a business being supremely overwhelming, I have none of the certifications or degrees that are often "required" for professional operation in my field. And just how the hell do you explain this disability and a 10-year stint of unemployment in a way that would make someone want to give you a chance? Neurotypicals almost never understand how hard this stuff is for those of us with ASD and/or SPD.
The UK's National Autistic Society recently released a couple of videos showing people on the autistic spectrum who have sensory processing issues. One is a young boy walking through a shopping mall with his mother, the other is an adult going for a job interview. Insofar as video can capture what the overload from having ASD+SPD or just SPD alone is like and immerse a neurotypical person in that experience, I think they did a good job illustrating what this is like.
Can You Stand the Rejection? (Job Interview w/ASD+SPD)
https://www.youtube.com/playlist?list=PL...oeb05GD8fm
For now, I've basically given up and taken the disability route, though it disappoints me deeply. It feels like a cop out, like I let my parents and every bully I have ever encountered walk away with another win. I feel like such a failure. And now I'm getting old, too, which is bad news for a woman looking to start her life.
Hopefully, I arrive among friends and compatriots. Else, I will simply vanish, as I am wont to do.
Thanks for listening,
iamtheunknown
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