Almost a year ago on the day after Christmas, I was reflecting on what would be happening a year from then.
I was right, I didn’t know how bad it was going to be, between the Bedford Bimbo being platformed to MAHA, to just the unknowns now we know for sure anti vaxxers, anti disability, anti science, anti-atypical people are now dominating policy.
I was just four years off on being permanently “hopeless”.
If you don’t hear from me, Merry Christmas for those who celebrate.
Twenty five years ago, in late 1999, the latter days of the 20th century, I was told the bad news that would change me forever. For most higher functioning autistics (HFA is not used because it’s not a clinical word) they have validation, By fifth grade, I knew I was somewhat different, but as I had the middle school hell that lead into the curse of being Out of Districted, mixed with a toxic/feminist ideals of male students, then I could never really recover because it was years later, years after denying I was really autistic (of which ended five years ago to the day) I felt being so delegitimized that I could never recover.
It was said in recent years by my mother that she had pushed off diagnosis because she was concerned that I’d be defined by “the label” Well I wonder now if FOB had said that to me in 1999 in preparations that the teachers would weaponize my label against me as if I chose to be odd, almost guilt-towards-compliance attitude. In case you forgot my original diagnosis was formally done when I was 7 which was 30 years ago this year, but it was told to me five years later.
I never really recovered to pre early 1999 levels of confidence and self worth. I say “early 1999”, because i have not told the story until five years ago because the women forgot childhood time perception. There was lots of social growth from I say March to June of that year, that clearly wasn’t seen or understood. I do not understand how people with a responsive soul would treat little boys as if they can’t be anything useful. Not to mention that I had pre-ABA treatment that was implemented really poorly and behavior analytics is not good for a program that is supposed to be for individuals.
Sadly for New Hampshire, I don’t think this has changed that much. But don’t expect Dan Habib to produce a serious film on restraint and seclusion.
Editorial Note: The title has “Autism/Spectrum Disorder” because I use it interchangeably since many just use “Autism” instead these days
Gonna miss those hated Boomers when they pass on.
The younger generation (when I say “young” I say under 55. The prospects are not looking good for typical minded people as I fear they don’t want me to exist.
Gen X (the alleged Forgotten Generation) 1965-1981
Generation X was coined because they weren’t sure how to name the thirteenth generation. Struggled during the 1970s under inflationary pressures, mixed in with no-fault divorce, and other turbulent times, Xers became adults at 12, and kept to themselves into the 80s and 90s. They loved Ronald Regan’s pro-growth economic agenda (that gave everyone Black Monday, the dot-com bubble and the 2008 Financial Crisis.
Gen X was also the generation where their offsprings were cursed with a vaccine injury known as Autism. Most of this population are in the Gen Z group. Ironically no one really talks about anyone injured with a vaccine in the 1980s babies. Regardless Gen X’s favorite film Rain Man, mixed in with their technical training on the IBM 5150 in high school, these hopeless people thought they didn’t need no stinkin education, it’s all on Google. Xers listened to their sisters like Jenny McCarthy and believed their kids autism was caused by vaccines Continue reading
As part of adding justa little more time on this blog, to help layman people what people like me exist and why we are out, since I am interested in policy and understanding governance, I feel like I should be the one that can try to help out to extract the jargon to more understandable (or sometimes politically incorrect phrases).
I feel for my peers who can’t really speak for themselves with the force feeding of HCBS… ahem OBS
Since the 1990s, the state had supported adults with intellectual disabilities home & community based supports also known as HCBS in the so-called “advocates” and other related groups.
The services unlike in special education, where one was most likely secluded in an out of district program as the worse case, the individual in this situation would be in the community for a measurable 30 hours a week. The theory – that is by having an active person with a disability in the community would being inclusion and tolerance. The “Out of Bathwater Services” or OBS as I will rename this can be an emotional burden to the individual or support staff. The reason why I say “out of bathwater” is because it’s taking people into uncomfortable and often unforgiving places even in 2024; a lot of this force began ten years ago to be implemented right as COVID brought mass infections in 2020, the regulations put a deadline.
“feeling like I am walking on a four sided Plexiglass telephone booth where I can see things and not touch it.” ironically the plexiglass metaphor couldn’t be so literal after COVID just five years after I mentioned this
Part of these regulations also forced a “code of ethics” for the direct support professionals, known to the people as DSPs and the power structures that would change to make the DSP be extremely Swiss or have sudden strict boundaries. This can make or break an individuals mature experience in society.
From ASAN, the Autistic Self Absorbed Network, to our trio of activism, question the effectively of being out in the community literally for 6 hours a day assuming you’re going to have a job. What if you don’t? What if you don’t have money to shop or eat out food?
In fact the push of OBS was one of the reasons I fought against it, the creation of the Hopeless Autistic was my written accounts of what I had already seen in SPED a decade before. It was the most literal example of Read the F-cking Manual and interpret it yourself, and be sure you understand it properly to avoid a non-compliance fine.
I went so far to explain my experience to several seasoned professionals at DHHS “feeling like I am walking on a four sided Plexiglass telephone booth where I can see things and not touch it.” ironically the plexiglass metaphor couldn’t be so literal after COVID just five years after I mentioned this. COVID delayed this forced feeding of OBS at least another two years because the pandemic, but since late 2022, things are “back to normal”.
And back to normal of walking around as if one is socially isolated with a group of people and getting conflicting messages whether to be part of it or stay isolated. I feel for my peers who can’t really speak for themselves with the force feeding of HCBS… ahem OBS
Earlier this evening, I was talking to the ol woman, and while I was waiting for our Domino’s order to arrive, I caught her up with the Zoom call with my therapist and mentioned the “political piñata” and she mention how some people have an Utopian world view of black and brown people, disabled and women would be included in some dreamy way.
But I said something “why is.. it the people in crutches and wheelchairs?”
I understand that the physically impaired people had it really hard, and there is still improvements, but why are they having the cake and eating it too, while the invisibly disabled people are continuously not being “seen”?
In lots of these social justice movements, there is lots of hands up, or lifting up people, but it really begs the question, do they really want to be lifted or are they being propped up for one’s own political gain? Are these activists missing something here? Is there a PR issue with the messaging of their medium?
Also what the hell is “developmental disabilities” in 2024? Are many of these people just being lumped into the physically handicapped or the other way around via other types of dual- diagnosis?
When one really thinks about it, since the Civil Rights movements in the 1960s, we are in the situation where disability rights took much longer, but the disabled groups are broken into two, but the only one that is seen is the one that is more “obvious” and the more subtle, the nerodivergent type is not just singled out implicitly, they are completely shutting us out.
As a really strange example, how would say women feel if they were trying to be seen and the Black community tried to silence them in the 60s? For the present developmental delay that is impacting 1 in 30 people mostly males, and often more vilified than ever before, and with institutional experience of other civil rights movements in the past – why are people like me intentionally singled out, worse blacklisted, worse in a clown filter in the electronic world?
I am the rarity where I don’t use it as my identity but I am so hurt how when the identity is seen to many others as appropriate use, many others use it to shun. Why are we doing this?
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As promised a couple weeks back, I was going to start a series entitled Moving to the Shadows based on my own experiences of attempting to get out of Southern New Hampshire for a number of reasons, would bring more “hope”. If staying in the Granite State is a must, the best bet is to move to the border regions and into the “shadows”. The two most empathic states per to a Google search was Maine and Vermont, ironically the two least favorite states by me, Connecticut being the first when taking New Hampshire out of the equation, followed by Massachusetts and Rhode Island. Maine or Vermont doesn’t woo me, when I was a kid I chanted “I DON’T WANT TO GO TO FARMER-VERMONT!” Turns out, I wasn’t wrong.
Would I benefit? is there better “supports” in the “community”? Is this the coded messages that the Concord yakkers imply?
I wanted to be methodological if this was to happen. I have written about this before, but things have changed in my life which could cause different outcomes. Reminder, most of this is talking about relocating from an autistic who feels “hopeless”, If you want a typical view of what it’s like to visit the region, read towards the end. I did extensive research and still have an informal plan if I were to go forward with this (spoiler alert: it’s gonna happen.)
In a undisclosed place I talked about a year ago, a place in Manchester is still sticking to their guns with clinical heavy social skills training and zero one on one support. The last correspondence via email was the top chick, boss-bitch like woman. As usual the reply said “sorry to hear about this” (again what is with Millennials and their lack of native medium sympathy, you cannot “hear” an email to the generation that hates telephony!)
What was her recommendation? Not supported or endorsed, but there’s a speed dating event in Nashua…
Recently, another family member that I mentioned early on in the YouTube days, passed away in August.
That family member was buried at the same cemetery as my grandmother, more on how and why that drama is sad is for another day.
However because the spouse and son plus the fiancee, counting my gram and nana and great grandpa, the space that claimed to hold ten, that the headstone engravers claim 8, is now down to 2 or 4 more.
Again the lone 37 year old in the lowest root of the hierarchy is feeling the emotions. The family member with a mental health now an early state dementia is unclear where they’re going to be buried. My mother wants to be buried with her mother.
My mother does not have a will yet, and my concern is that won’t happen; not that I want her inheritance but all the strings attached to my services not just my benefits. In order for that to work properly having the funds be in a trust instead, she needs three trustee types. Well those people aren’t that young either. One couple I do not trust, which is her fundamentalist friend; where her static world-view is on IDD is pretty much preset with no ability to gently challenge.
As I hear this stuff, I get anxious. Not having a disaster recovery plan a year ago, should’ve been a wakeup call. In fact loosing Gram was a disaster. I also temporarily lost benefits due to a misunderstanding on my mother’s end that caused the case to close as gram’s health was declining. Ironically, I would get a backpay of nearly two months, and screw up the Social Security, which lead that to ups and downs.
The benefits is one thing, the other was not having food to eat for a while. These were the nightmare scenarios I was freaking out several years before, fearing I wouldn’t have hands to hold when everything would crash!
I am saying this loosely, even for high functioning autistics, people like me need to have benefits… because I am not enough work wise too.
The annual re-determination process (aka re-de) is in August, where my mother has to file the annual paperwork to say I am totally and permanently disabled and we have to supply the state the last checking and savings monthly statement, etc. Because my mother neglected a certain detail that changed this year, I did not get my bi-monthly benefits beginning in September.
my mother tried to call the office one time in early September but because I didn’t fill the consent to talk, it further delayed. We tried calling the office again later in the month and was on hold for nearly 20 minutes.
Despite the Cisco CallManager on-hold music, it got my mother really anxious. My grandmother was dying to be blunt.
Last Wednesday, we went to our local DHHS office, and much to my chagrin, there was no wait, my name was the only one on the digital display, and for all intensive purposes, we were applying for benefits (aka it was like being 18 all over again with the paperwork.) However that part got expietitied because of the long term supports (i.e. my day services connection.) My mother did apply for Food Stamps because other benefits in a re-de last year shrunk because of a misunderstanding of how the funds were supposed to be used.
Obviously, I do not want to share the details, nor embellish it. I do want to say there is some shame living with a pre-existing autistic condition. That’s explained in a follow up phone meeting on Friday.
https://www.instagram.com/p/Cx3QioEu3hn/
In March, I was really in a down moment in my life. I was turning 36, and I am inching closer to 40 with nothing to relate to with my peers, unless it’s those peers that are in the same boat! Yes, because feeling the very same feels will turn all boats.
My mother is going through intense grief, while I have been identified as her “rock”. And it wasn’t the first time me or others heard that uttered. Not to mention I started elementary school in 1993, 30 years to the day last month. Given my grandmother’s grave state, I was unable to reflect, and given that I had traveled to Londonderry (or around there) about a handful of times after her passing, it set the trauma markets of feeling like I was not enough by any means, and I was just that resource-room kid who they felt I was not as equal to them.
my present therapist is antsy, often over generalizing, over sympathizing what is not in reality, because that individual doesn’t look at individual cases, not to mention US English isn’t their native tongue. My mother had gotten blindsided with the monthly benefits, so we need to turn the clock to when I was 18 and re-apply for eligibility; only because of a mismatch in paperwork,
Politically I am scared to death because “we are one election away” from an extremist who hates Massachusetts. Not to mention everything I have discussed over the last year in a half with politicians trying to regulate tolerance through preaching intolerance.
I feel like a goddamned misfit. I feel like in the state I live in “freedom” only applies to a handful of people with very little accountability, and responsible people are paying for those groups’ freedoms. Average men are treated as creeps!
No one understands the pain I have to absorb and right now I do not have any support people to help me with my cognitive differences. People who are reading is like “well you’re so high functioning, how can you not understand?
I was home alone on and off for almost a month and a half by no ones fault of their own; however I was really unable to discuss what was going on. Therapy sessions had to be on Zoom. I was trying to keep calm and carry on, but now I can’t even fucking cry!
The warning signs goes as far back as 2018 into 2019, I needed many hands as possible, and guess, what? my mother has to take the emotional burden of what I had to go through.
DSM-IV era autism is not as common as people think. Not too many people get-it, they think my father should’ve parented me instead, and fuck me up in a different way.
I am drained, my bandwidth has been maxed out, and I can’t process anymore. What’s next, other individuals feeding me their emotional stimuli that I can’t process.
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