How the Hopeless Autistic Began

To sum it up in a paragraph: I had gotten a name of a genetic doctor at Dartmouth/Hitchcock Manchester. From winter to June there was back and forth in backoffice paperwork. After that cat and mouse game ended, we got a date to meet with the doctor on September 1st. Basically the genetics testing was too risky financially as my primary insurance through my mother denies at 13 years and older. The Managed Care Medicaid wouldn’t touch it unless it was denied by the primary insurance provider, and if Medicaid denied it it would’ve been a severe case of SOL. (The story of my life…everything is bleep out of luck!)

Well in the meantime, the doctor suggested a name of Dr. Jennifer McLaren in Lebanon. According to that doctor, she supposedly worked with adults. (I suspect she may work with them if they aged out as children like a grandfathered clause.) Well when I called them, they basically denied me and gave me the infamous advocacy organization, etc.

It was after this run-in with the broken adult special needs system is when I decided of I Can’t Take This Anymore! And this is how The Hopeless Autistic began. Thank you unforgiving “doctors”!

The Back Story to the Marriage to the Girl in Ballerina Flats

In 2013, I came to my senses that I’d also be a hopeless romantic. Love and autism doesn’t have to be a complicated relationship status, and sadly the recurring characters such as incompetent psychologists acting as state leaders, inadequate training (fear mongering), and possibly “following the money trail” say IDEA for an example, had a lot to do during my teenage years.

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Too Bright or Under Broken?

2017 Preface: I basically fell from the lies preached by Autism Speaks, the National Autism Association, and even “publications” like the Age of Autism.I for one felt that my autism was a physical condition, but getting test results for a human type of hexadecimal/machine codes and other things that wouldn’t show much difference wouldn’t help me in the long run. My therapist has told on a number of occasions that it’s a difference in brain processing. 

I for one recommend people to steer away from these organizations to begin with, They are preaching religion at the price of human happiness. 

I’ve continued to refrain from expressing what makes me happy, by explaining what doesn’t make me happy. I live in a populated area of society and I try to assimilate, instead of forcing people to say “I’m special, you’ll like me no matter what.”

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NH’s Generational and Cultural Gap (towards Hopeless Autistics)

I’m somewhat active in the special needs movement (I find the subject more of an overstatement to be honest) in this state. In the last few years as I’ve been more exposed to the insiders and power players, I’ve found out many of these people are aging Baby Boomers who had kids ether in the state’s institution for the developmentally disabled or didn’t and help fight to close it. That institution was the Laconia State School that opened in the turn of the 20th Century and closed in 1991. (for now on, I will refrain from using “LSS” or “Laconia State School” such place in my opinion has escalated to a cliche – especially to the younger generation.)

Which leads to me where I feel there is a disconnect to the special interests groups who have “fought” the system (i.e. being very aggressive  – more aggressive than I can ever be) and won by having the place close down. Meaning a new evil would loom within a couple of years.

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Autism – The Cause “No different, No Less”

Never in the history of mankind with the advances of medicine and technology and information delivery, could the autism spectrum disorder could’ve been the progressive cause that any civil rights before or after could look up to.

In fact the autism spectrum disorder is “no different, no less” than any other cause before. In other civil rights like Down’s or gay rights or freedom for African Americans, the disorder was on the rise with advancements of technology. Information delivery was not just radio, TV, print or even cable, online services or the Internet, Facebook and the web to follow; the most disturbing thing was the lack of addressing the disorder at all. And when the the media did give autism a media play; the focused  on the narrative on the MMR vaccinations causing autism.

As this media scare tactic occurred, it wasn’t till a few years ago some hippies in hippy neighborhoods decided to not vaccinate kids and the debate has even continued into the race for the 2016 Presidential Primaries. Of course let’s not let the facts get away of a good lie. And let’s not accept the fact that measles in the US is on the rise. And lets not diss the graduates of University of Google, such as Jenny McCarthy who has claimed changing the diets has helped her kid be “cured” from autism.

As painful as autism can be for some families, I’d take the autism over the really sobering measles any day. And to be positive, the “D” in ASD does not stand for Disease unlike what David Wade at WBZ-TV wants you to believe, who allowed such reckless copy to exist online. (More on the mainstream media’s association with Autism Speaks will follow.)

There was so much opportunities missed in the early days of the rise of autism (some children were diagnosed as early as the late 1970s to mid 80s before the massive rise in the late 80s.) The leadership (the lack thereof) just decided to make it a very political one, instead of trying to work for the common good for the individuals, whether or not they can speak or wear diapers or not. If there was a strong leader or organization that knew all the various ranges of ASD, they could’ve made an honest narrative, showing the struggles for one family, and other struggles for other individuals.

At this rate, the 10 year delay has already caused damage. By being behind the eight ball, people in the first generation, the ones who were getting the “bad news” and if they were so lucky to find content on America Online by paying by the hour on a 36bit telephone connection on the subject are the ones that are hurting today. I grew up in a town where they were so snooty, they tried to not expose the special ed community to the general public. The local library had little to no content on the disorder, despite so many people with special education when I moved in 2010. Imagine being “in the dark” being raised by a low middle class family with a single parent, when the media wouldn’t cover this subject at all. Now there are children today that will be “taken care” of similarly to a “hack hire” in the Commonwealth of Massachusetts or Cook County, Ill. They’ll be taken care of before they turn 21 and the wheels won’t fall off like a Detroit made car unlike their previous generation, born about 8 to 10 years prior to.

(Can’t you not tell my jealousy? )

Sadly the organization leaders at A$, the National Autism Association and sadly the higher functioning people at the Autism Self Advocacy Network has been fighting tooth to the nail for wanting the attention and control of the narrative. All 3 of them make a single autistic not affiliated with any of those groups appear to be the “grown up” after observing the “barnyard politics” that has made the autism cause, regress not progress.

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.

 

Broken Instincts

Dreams, what are those things?

Why does my “normal” friends can go to college, but I can with an asterisk? Why does the “normal” people party and get a diploma? How can I trust you if I tell you my dreams and you won’t use it against determination for services? (i.e. being “too functioning”)

I am more active in the special needs movement over the last few years and I am floored of how children are getting so much forward in society while some 28 to 32 year olds are in a dark world.

I do not understand the concept of “following your heart”, “following your dreams”, how to chase such things without being charged for stalking your own pursuit for happiness. (And I am not talking about girls or guys.) In some jurisdictions in this area code of 603, it’s a crime to have a disability and enjoy life. Ok, so you don’t go to jail, but society – yes in New Hampshire – will be punished by being left out, while some “experts” claim that individuals need to assimilate with the normal functioning people.

With that aside, I don’t know what makes me happy. I know what makes me cry. I feel that if I follow my happiness, I’ll be too “high functioning” and have to deal with the baggage of that!

I’m a victim of an oppressive special needs system, ridden with politics, bureaucracy “rights” that are ideals over enforceable laws, etc. I’ve been lied to on the record by professionals to the point I can’t believe in many people, except for the current support system I have. I do take responsibility for some of the errors occurred. Any regrets I did, I will make note (but not dread on the past, but just for clarification purposes.)

“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.

Crying like a baby

Some days I cry and some nights before I go to sleep, I cry as well. It’s so bad, I can’t even tear up and you can’t even hear me. Even people tell me I “look like” I’m about to cry.

The emotions, expectations, the potential failures I’ve done on a single day, trying to do the “right” thing has caused me to freeze-up. And of this, I start to just cry. and say to myself “WHY CAN’T I DO THINGS ‘RIGHT’?! WHAT MISTAKE DID I DO TODAY? WHY DO PEOPLE PUT ME UP ON A GODDAMN PEDESTAL BUT THEN KNOCK ME DOWN WHEN I MAKE A SIMPLE, DEMENTED MISTAKE?!” WHY IS THE SYSTEM SO BROKEN?”

And people think only low functioning people are so hopeless… well you’re naive to believe in that! News Alert: MODERATE TO HIGH FUNCTIONING AUTISTICS ARE JUST AS HOPELESS – OR EVEN WORSE!

Dartmouth Hitchcock Refers Me to a Odd Organization?

2017 Update: Someone told me last year that this very same doctor now works with adults. No followups.

Last week, (this was the last straw to develop this blog actually) I contacted the Lebanon office of Dartmouth Hitchcock to try to get a consult with a MD which supposedly is experienced on ASD.

Well I was told she only deals with children.

Is this a bleeping joke?

One of the offices they told me to contact was the AANE, once known as the Asperger‘s Association of New England (why they dropped the apostphre-s is beyond me. It is now called the Autism Asperger‘s Network.) They are located in the most snottiest area of the state in Watertown, Massachusetts, the most far left out of touch democrats, and the most wealthiest areas of Central New England!

Is this what the low ranking intake clerk meant on the phone?

They aren’t a medical facility, they don’t have doctors, they are nothing but a far left organization (i.e. a special interest group) ran by a bunch of far, way out of left field lefties, out of common touch people who probably themselves have AS.

And guess what? They had a conference, and several hours worth of video of a “Disclosure conference” earlier this year at Bentlllleeeeyyy College in the central part of Middlesex County, MA.

If you have ever visited the common people/working class area of Essex County, you’ll know why I hate, HATE, over my dead body that part of the state.

Is this flipping joke?

Dare I say the cliche Only in Massachusetts? Only in the Commonwealth do they peeve resources on “disclosing” autistic disorders as a training material

*shaking my head *