Decoding Autism: Stop Coding The Condition!

From the other site published in winter

As I have explained a number of times, autism is a condition that impacts people. Not boys, not just kids, but adults too. Some develop later in their childhood years, and some apparently from the routine MMR vaccines and classify that as an “injury”. Or you have some nit wit of a celebrity who uses every semantics similar to a person with a cancerous condition of “beating the odds, my child is cured!”

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The Concerns of living in a “Fantasy” World

Concerns first spread to some that I was “stuck” living in a fantasy world (which at the time consumed Lego minifigures and ABS plastic bricks) when I was about 13. The school support staff felt I was getting to carried away; and as a result I was basically punished for living in my own safe world by being force to adapt to the real world. (The staff were Gen Xers, to remind the reader. This was the last “tough” generation, however “tough” could be considered as passive aggressive not just strong.)

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Update: The Back Story to Acquiring my Avaya PBX, part two

This is the second part of a 2 part story

By March 9th (nearly a week and half after he offered the system) the package made its way from Montana to New Hampshire. The next challenge? Trying to be home on the day it would arrive and then try to get (what was clearly over 80 pounds) into the house at least in one piece for it to work. And do this so the UPS Guy doesn’t trip and fall on the ice. That would be tragic for both the Brown guy and the PBX. Well it came on time at my normal UPS Ground route for my neighborhood (and stalking the package with my iPhone with its tracking number.)

How did I get this bad boy in the house?

Thankfully the 9th had milder weather as opposed to a cold February (where only one day was above freezing.) I was making some dollars on that day just clearing out the ice on the walkway. Sliding on the ice was already dicey (my grandmother is not getting any younger) and obviously this had to be cleared out so the PBX could be in one piece. I lugged it from the deck somewhat dragged it gently to the other deck steps because we have a pool and the steps to the deck are built for security/insurance purposes. Then, brought it down to the doghouse (the access point to the basement which is underground. However some have bulkheads – if say the basement/ground is exposed.  Some Cape houses are exposed full 3 stories, ours is underground. In this entryway, we have a full height entry space as I descend down a dozen steps.)  Without railings I got it situated in the laundry room. Thankfully, this individual named Jason had put these foot long circuit boards in actual Avaya boxes that typically are packaged with, and the administrative software was stuck on tape to the PBX unit itself.

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Where’s Peace?

It would be an understatement that the “world’s on fire.” And not to far away in our back yard. There seems to be too much domestic violence in mass attacks, and it’s a little unnerving that our President cannot do his job and punish the animals who destroy other family’s lives. (Oh I forgot, people voted for the President so he could give autistic people more rights…oh well why have I been stuck since he’s been president?)

Closer to home, it seems that my day program is sputtering too. Sudden changes to schedules near the Christmas time period and yet it seems that staff and clients are in a mess. Yet, I am supposed to also meet Concord’s narrative of “everything is awesome”; there is nothing wrong with “the system”, all of our micro-managing of pushing “community based supports” is working perfectly as planned. Maybe for Bartlett, maybe not so much for say Hudson.

I don’t understand this. There is so  many autistics plus other developmentally disabled people in this state – and yet “the adults in the room” seem to act like children and pretend nothing is wrong until they see the unintended consequences (opps, was that a “microagression theory”) come into fruition in a tragic way.

To say there is not an autism crisis to borderline autistics, and adults would be an understatement, as I stated numerous of times since October.

ABA – What happens when they Become Adults?

Applied Behavior Analysis is an apparent practice used for children on the autism spectrum. It consist behavior plans and Excel spreadsheets and possible PivotTables to execute all the data.

I really have no idea because all the questions I’ve previously asked were often given in the same vague fashion similar to your company’s IT Guy You’d Like to Punch at it’s head! They don’t really explain how it works.

It may be because I technically do not have a High School Diploma equivalent to the “normal functioning” people and I can’t understand open ended answers with open ended questions.

But if it works for children, and teenagers, then what happens after their 21st birthday? I seen no day program in my area where they clearly use ABA.

Let’s not let this “good practice” be destroying adults with autistic disorders if it can be prevented.

If “Adults” can’t trust you, how can you trust yourself?

I just received an email from my case manager explaining an idea of a new program. I was very serious. But this manager wanted very specific, detailed ideas. How can you be specific with details for a program where disabilities such as autism isn’t monolithic.

Since I have been about 18 years old, I’ve taken myself seriously, joking and light heart mindset has gone on the wayside and I don’t take jokes well, I don’t like being teased with, because I fear it will ruin my credentials.

Take a look at this email where they closed out the message on a HIPAA compliant server that will probably be around for the rest of my life time:

“Let me know.  Stay out of trouble”

What does that mean? I don’t know if it was a joke, but those words in today’s heightened society could make me think I am so at risk, that maybe I could get in trouble so easily. In fact, maybe she’s right. I do get myself into trouble especially in email. Maybe I should unplug the WAN cable in my closet…

or take me to a developmental institution. Oh right! They want all of it shutdown so I have to be forced into the community.

I can never win. I know for sure I’m a hopeless autistic.

 

To those Who Don’t Get It…

To the Tea Party wackjobs, to the clueless Democrats and the Republicans that attack the other party for sport…

If you believe,

you can create a flight plan

enable Auto pilot

and insist that any social issue of the day (i.e. autism and the lack of addressing needs of services of all types for all kinds of people) can just fly on its own by programming the flight plan on “ideals” and “principals.

Then you sir, madam are naive and you must stop your arrogance pay attention to struggling families and individuals in this state of New Hampshire. The idea of “lets get rid of the illegals and it will fund the waitlist” is easier said than done. Among the other grumpy political tactics that can go for thousands of pages. Stop with principals, and start with real action.

Social issues are in a bumpy ride and we need HUMANS NOT law following robots, or budget cutting hicks from the country who have no idea what its like to suffer with autism. Or pols who think eliminating welfare to think charities will pick it up; or just the plain silly lawyer like politicians that just follows protocols and not understand the situation. Not only that, but some of these tight to the right Republicans also take their job so seriously, they act so serious its so damn laughable.

Maybe we should pray that every bushy faced man that is running NH politics will finally go to the graveyard, so we can have sane minded politicians that wouldn’t “tax and spend” and understand the real situations.

“Just another kid”…till…

in late 1999. As previously stated, I was confronted with the disorder in the end of the 20th Century. The worst timing to be told you’re different, but not only that but a disorder that no one really knew about. Factor diverting out of district to the infamous Seacoast Learning Collaborative (a big proponent of “restraint and seclusion” as well as just zero-tolerance on anything that makes you happy.)

I had some noticeable social quirks, some borderline on the “creepy” level.

But about 80% of me was basically a “normal” as possible of a person. All the pieces I was all became torn apart by professionals who no longer are working with special needs or in a critical level in 2015. They were doing it for their own “social capital” and brown nosing themselves to the top. They didn’t care about the students they were messing up. That would be unprofessional to have any moral duty to protect us.

Meanwhile, as these “professionals” were trained to follow autistics of any ability or inability, by a “spec sheet” as I like to call it, the pages off the DSM IV. And the DSM version at the time was very vague to be quite blunt. One professional would take that definition, and treat me like a retard, or take it another way and say I’m creepy, or that Aspeger’s friend in Lowell has all the dreams in the world since “Only in Massachusetts” can someone whose super high functioning have the dreams they want.

I don’t say I have an acquired brain disorder per se, but I thought like other physically disabled people, they were happy and healthy till something unexpected happened. In my case I found out I was different and struggled whether to be “different” or be like “normal” people. Of course, the back and forth wasted precious time in my teenage years into my twenties.

I still feel like to this day I am very borderline, partially at risk, partially functioning. But I am so in the middle, it’s a crapshoot. I wished this post was a work of fiction.