Health Issues of being a Hopeless Autistic

Since my teenage years, my health resulted in two major issues (since resolved)

  • Severe acne, (due to a large dairy intake), which resulted in migrating away from day to day dairy intake, to the infamous acne medication which can cause massive issues if you accidentally knocked up a woman (which I’m forgetting the name and the FDA program for a moment)
  • A case of an underbite. My mother has kicked herself for not addressing the problem sooner, and this also caused my teeth to be worn because of grinding at night. Regardless, we waited to get a mouth guard till I went on a surgery that moved my upper jaw forward along with a second round of braces. This also rebooted my confidence and gave me a smile that people remember me when I was younger. The underbite (or TMJ) made my face look very different. While the surgery was for substance, not worrying about “jaw clicking”, etc., this was necessary.

Both cases were from my father’s genes/side of the family. I’m not going to finger this on the father I have no idea who the hell he is, and not the diet, that is stereotypical autistic diet, but more of what happened in 2004 to 2008.

I was on some medications I shouldn’t had been on to begin with. The medications caused me more anxiety and paranoia, that I feel had a contributing factor to why I was not developing like my other teenage peers. The fear of messing up, the fear of being targeted for mistakes, the fear of being a creep among remaining in one piece for 7+ hours on weekdays factor in my legitimate case of autistic behaviors had perhaps 80% of the physical damage on both the acne and underbite – again even if it was genetic from my father. 

I’ve made a lot of notes from recollection of those painful years (in some cases the worst years of my younger adult life) to convert that energy from pain to preventable measures. And those doctors are well aware of that.

Where I am going at is despite all the analytical gathering I’ve complied and made conclusions; of if I changed my diet, laid off medications, and alike, that I wouldn’t be where I would become. No, I do believe a very oppressive, and depressive support system, that was “support” in legal name only had a lot to do with my regression. (And no, I’m not talking about just the regression of my first 16 months out of school ether.)  I’m almost as smart, bright or functioning as some of my peers of 10 years ago today. I could’ve had a brighter future if it weren’t for being in a system where people had no business working in.

These treatments were very expensive and luckily my mother’s healthcare plan had me in the system because of my “pre existing conditions” that basically, in my mothers recollection began months after birth.

Estimates of an autistic’s lifespan for services and medical expenses alike will average $2 to 3 million dollars. Do I want to be a million dollar man? No. If you put adequate supports with people who really mean what they are doing, professionals who only care about the students when they are “on the clock” and aren’t just following the robotic SOPs, and poor planning in logistics, etc., maybe some people wouldn’t need to go to Boston and stay a few nights or go into a very complex anti acne treatment. Maybe my teeth wouldn’t be as short as it is.

Of course, my solution to the problem is, love, respect, happiness, and mitigating problems over “curing” but of course showing respect to students would be “unprofessional” as they have to be the control freaks because by law that’s what they get paid to do, destroy your dreams “say no” because “you’ve never heard ‘n’ or ‘o’ too many times” and other BS which needs to be destroyed.

Fixing the ASD Crisis

There are many ways to fix the Autism Crisis. This bullet points can go up to the stratosphere in an instant, but for timing purposes, I’ll keep it brief.

  • Focusing on the individual: What’s “normal”? According to Luria Pertucci (formerly known as “Cali Lewis”), an Internet tech show host, she wore a T-shirt to a professional conference (mostly for women’s issues in technology) earlier this year stating “Normal’s overrated”. Is she right or is she wrong? So what’s normal? Per to her definition, or some psychologist who claims to know everything and prays on the DSM? And why does “normal” have to have a DSM-esque name called nerotypical? Why are we spending so much time comparing an autistic’s mind to one’s who is “normal”? Oh and what if I am smarter than a “normal” person or someone similarly on the spectrum, but I’m dumber than say someone with Asperger’s Syndrome? Why aren’t we doing more contextual (i.e. focusing what works and what doesn’t for that specific individual) If autism is like trees, then why is the metrics assuming all trees must be alike? For god sake’s alive there is no such Internet directory tree alike!
  • Context, Context and dare I say Context?  Ever had a flip phone? Do you have an office phone or an IP desk phone? See those little buttons below the screen? It’s called a “soft key”. A soft key by definition is context sensitive, meaning the buttons can change depending if you are not on a call, or on a call, or on conference because its triggered by the phone’s software. If we use that phrase with everything else, then everything should be based on what is going on in the here and now. For instance, if someone with HFA is struggling with work, and he or she is able bodied and can’t get something done for whatever reason, they need to stop focusing on their intelligence, and more on their anxiety. This is a pervasive problem in New Hampshire, where so many people focus on their “label” or ability and not be able to adjust or “lay off” constant coaching due to pressures against the individual. (do you really need someone without a PhD diploma to tell you that?)
  • Conformity and Assimilation: Why in the heck in 2015 are we still trying to “program” individuals with ASD to “act like normal people”? Do I need to bring the Luria Pertucci reference again? Why can’t these middle aged women who clearly don’t know squat about social media teaching them social skills? Why can we embrace C-listed social media star’s approach of to “be you” and to “be yourself” don’t live in “a [wo]man’s world” (i.e. in my case mothers or teacher’s dreams) and contextually do conformity and assimilation when there is a case (i.e provide some documentation – like we need more) to do so (if say someone who clearly has some “creepy” factor but the student next to him is not as creepy.) I am not on the camp of “nerodiversity” but in the concept its a good idea for the most part.
  • Better training. Silly things starting with “social” is not cutting it. In fact, such professional training courses such as “social capital” or teaching Aspies or autistics the “social rules of the road” isn’t cutting it in 2015. It’s just enhancing an old ladies network of “keeping the autism stereotype alive.” Some expert here in NH or Massachusetts or California or New York must, I would hope know something about “context” with a PhD to confirm this silly theory. In anyways, it is all about context. Notice watching TV these days is such a sensory overload because everything is so literally loud? It’s because of some stupid innovations such as “cost cutting” and “automation” and master control being in remote sites in another part of the country also factor the move to digital TV where audio is supposed to be “dynamic” – (i.e. the audio quality should move with a show or movie’s mood.) Nothing can replace an audio board op who can literally “dial down” when something gets “too loud”. What does this have in common. CONTEXT! Resolving issues relevant to the specific individuals ability or inabilities specific to them and not treat them to the “spec sheet” issued by the DSM!
  • Government Compliance and Accountability: Nothing more disturbing is how municipal school districts and larger agencies are taking a lot of money to spend for special needs and not account for it responsibly. Sometimes the money that gets received by the larger government doesn’t go into the classroom. Is that the student’s business? Perhaps if they are over 18. Why state and local governments (or SL&Gs) feel its a private matter to disclose material financial information to the public? What’s more disturbing “privacy laws” that was supposed to protect information between the “chair and keyboard” or the “chair to the keypad” is being used as a political ploy to not have to disclose information that is material to the tax paying community without going into disclosing student’s names and other sensitive information! Meanwhile many school districts have created a “culture of secrecy” where even trivial things are protected by “confidentiality.” If the Dreaded Private Sector has to abide by laws like Sarbanes Oxley, Dodd Frank, then why can’t the public sector be held to the same level? (Discussions on privacy vs transparency vs. protecting peoples confidentiality will be a frequent discussion.)
  • Self[less] Interest Groups – I will refuse to take any training issued by a University that employs people who have never had a real job. These people never really managed or know operational skills. I can’t stand Venn Diagrams other silly diagrams that took decades to invent. I prefer orgcharts to begin with. If teachers are not proficient in Microsoft Office Professional or Enterprise they should be automatically fired. In 2015, Teachers and special needs managers need to know how to manage logistical operations. They need to learn start and end processes. This is no different than what Mayer Johnson has developed, but the business world is born and dies on processes. If you want students work in the corporate sector (as it seems to be the only vocational option) and you want to indoctrinate uber-levels of accountability, well maybe you should eat your own dog food! Autistics really need clarity, a good start point and a good end point. And Boardmaker can’t cut it. Not any other PECS can do it as good as Visio. Most school districts and area agencies have MS Office Professional (at least a minimum) and Visio (I believe) comes standard in Professional or greater.  I digressed. Special Interest groups need to balance both the true human factor of special needs, but also need to remain professional and serve the public’s best interest of effective and efficient, but human service delivery. In fact one of the best companies is no longer with us, it was called Digital Equipment Corporation. I recommend people strangers to that subject to read up its corporate history.

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The SAU Sector’s Lack of Mitigating Problems

I treat school districts, educational collaboratives and other school, or even adult services, Medicaid, others like any other public sector entity. But a decade ago (or even today) it wasn’t working like any other public sector.

How I view constituent services:

  • The role of an e-911 operator at a public safety answering point or PSAP is to take my emergency call, wether its fire, police or EMS types
  • The PSAP from the state government tells my local fire, police or EMS types respond (hopefully!) within 6 minutes or less
  • If my family’s wheels get damaged by a pothole, I can’t call 3-1-1 but I would have to dig through the phone book and find the number to the local DPW and hope they would honor the request to fill the pothole since “tracking numbers” is too much of an expense of a computer system for the Granite State
  • if I came into an ER with a blunt force trauma or a gunshot wound, they would stop the pain or bleeding ASAP
  • if I had a disagreement with a town official, I call up the executive and resolve the problems like grown ups.

Schools, are totally different. Teachers have zero accountability these days, and paraprofessionals (or just paras) are held to higher standards while the central or corner office suites (c-suites) will just sit around and do nothing. They have no moral responsibility to try to take down flames and mitigate deaths.

Maybe that’s why one school board member of my former town that shares the same name of a famous 49ers player said years back “we don’t have teachers fight flames, and we don’t let firefighters teach”

I think I answered my own question. But it shouldn’t have to be. It’s the horrible truth called reality.

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First Post (of Many)

This is Steven Ayotte (better to be known by Steven Clickford.)

This is my first of many posts hoping to make change in the state I live in, to hopefully followers who live in the same state I live in and waking up any of the one-point-three million residence that I call “home”. The Granite State that one had the Great Stone Face and basically an average of an hour and a half drive/ride to the mountains, lakes and ocean is not as perfect as I was as I was a child – the “first generation autistic” back in the 1990s.

The state allegedly was a leader in service delivery for anyone with a developmental disability. According to one special interest groups, its now at 25, you could say its bet or worst as it is right in the middle.

I label myself as a “hopeless autistic”. Born in the personal computer generation, and remembered how much I hated the Web before I loved it, I grew up in one of the most wealthiest towns in Western Rockingham County. When I was placed out of district in 1999, and was confronted of my autism diagnosis (was dx’d in 1994) – my whole world fell apart. I just entered into middle school in town and lost everything. My friends, my social skills (I wasn’t as “creepy” back then), my happiness, the ability to wake up at 7:30 in the morning and jump on the bus an hour later with positivity.

It all disappeared.

Further in high school and into adulthood, I was starting to feel hopeless, and now in 2015, I made a big statement of publicly saying I’m a “Hopeless Autistic” and made an SOS message on the sand at Hampton Beach State Park this past summer (without my family knowing.)

I feel that my life is falling apart by the second – literally. If you thought an American made car would be so junk, maybe its actually a human being (allegedly, I think I’m human…)  that is more unreliable than a car made from Detroit.

I do have support systems, I am in an area agency, I do live with my family, but other than that – that is my only support. I have professional relations with the state and its leadership, but I disagree with many of their views (because I leave my politics at home and bring systemic politics outside the house.) The limitations in life is out of said control. That control must be deferred to Concord, at the special interest groups, the State’s Department of Health and Human Services, the DHHS’ Bureau of Developmental Services, the Medicaid “managed care” companies, and our governor, our leaders in the General Court  and at the local level at the school administrative units (SAUs) and town officials (mostly public safety.)

If we as state as a whole can’t move forward, expect individuals or even families to start becoming “hopeless” I thought the 21st Century was supposed to bring more hope.

I only wished this was a fictional blog, it is not. I will shut it down once there is progress, because all special interests groups should come and go.  But I am an honest person that wants to tell the story live and uncut. If I ever glorified or over dramatized my narrative, then I loose my credibility. But at this point, my reputation was destroyed in 1999, so I have nothing to loose. I hope?