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.)
If there isn’t another way to describe my emotions over the last month, the last year to see what’s ahead for the next year, put it this way.
Imagine you’re driving a “Crappy American car” as I liked to describe the Big 3 autos; and that Crappy American car just like any other that will sputter unexpectedly. The car looses control. You try everything to avert a major disaster.
You’re up against a cliff and the road. But lets say there is a Big Scary Truck that is carrying hazardous materials. What do you do? Do you plow into the BST or go off the cliff and risk your life?
If you were a sane person, you’d drive off the cliff, to prevent a major disaster going into the BST.
“The system” in my state, the “supports” (the lack thereof) and the out of control government both on the state and Federal level is this Crappy American car. All the things I’ve previously discussed since inception in October is what this car is made out of.
You have no choice to avoid disaster, you’re going to wreck no matter what. Your peddles are failing, the steering wheel is about seconds to lock up.
And this is where I am right now. I can’t seem to try to navigate this broken car that I am riding at a “high rate of speed.” I have no driving force. I’m a passenger in the driver’s seat. There is no 9-1-1/Tier 2/3 helpline for hopeless autistics. I have to navigate this myself.
And sadly the only option is to drive off the cliff. Will I survive? Who knows. At this point what worse can happen? Or is the worst yet to come?
I can’t answer that question. Because I am at a loss for answers. Just asking unanswered questions.
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.
I never sent this for a letter to the editor, but I was this close to sending it. Not to long before I was going to submit this editorial; I met with a lady named Jennifer who is part of the said Council, at a conference in the state near the end of April. What was more disturbing was she dyed her hair blue and said to me that “it’s easier” to focus on blue because many people associate ASD as the single boy/blue color.
In anyway, while I didn’t actually submit this to the local papers, here is the original text:
To the editor,
As an autistic, I find it highly offensive on April 23rd, that Governor Hassan made a proclamation on Autism Awareness Month along with the state’s Council on Autism Spectrum Disorders. According to the Council’s website, they suggested for the people dress in blue. Blue colors refer to Autism Speaks, a corporate non for profit group that has a long time extremist reputation for an example condone murder against the autistic population.
I recommend people to get the spine-chilling truth by searching for “Autism Everyday” on YouTube. For a state that has allegedly lead on progressing the needs of the developmentally disabled; these actions speak louder than words and our state has stooped to a shallow level by endorsing Autism Speaks’ obscene propaganda.
As a citizen of this fine state suffering with a community who are treating my group of people like a stereotype – this is unacceptable for 2015 standards. From my research, the Council is a do-nothing group that has a negative potential – me and others – to go backwards not forwards. Not only that, they focus on a minority such as children when adults are the majority suffering with ASD. This Council should be shut down and give the money back to the tax paying citizens.
If people don’t understand the last sentence, Michael Dell was quoted around 1997 when the late Steve Jobs returned to Apple, and he was quoted saying “If I were Apple, I’d shut it down and return the money to shareholders.”
2017 Update: I still have not found a dedicated DSP outside of my program.
For adults with autism spectrum disorders, at least in my backyard; finding good help is one thing; finding help at all is even worse.
Direct support professionals (also known as DSPs, caretakers, caregivers, respite workers, etc.) is supposed to be a growing trend by 2020. The difference between DSPs and the traditional sense, is there is more standards, competencies and even ethics. While it’s good in the abstract, I find it flawed as the c-suite will continue to possibly hire incompetent managers and continue to operate unethically.
For my case, a simple DSP to take me out for fun to get away from the horrible realities of living with autism in a region regressing in service delivery, oppressive special needs systems, etc, took nearly 6 months from concept to a possible new hire. I went through every professional acquaintances and – nothing! Even my remaining Massachusetts connections – and no luck!
Is it a case of if its too good to be true then it must be? or is it “I don’t want to work with an autistic, because they are slow childlike boys- I can’t stand those people.”
You know who I accuse this of? Bad leadership in New Hampshire. Bad training standards (because they are taught to find “flaws” with the individuals, glorify the negativity and dilute any positive abilities of the students or clients.)
What’s worse is the training is hard to come by here in this state with the various conferences relevant to special needs. I blame the Granite State being so desperate, they’ll take out of staters who clearly want to oppress the severely autistics and train future professionals the negativity as the headline and any positives as a footnote.
I’m in my late twenties, and I haven’t been active in any advocacy or became an agent of some change till recent years. But from what I’ve gathered from the outside was that the state’s better years could’ve been the days when the Great Stone Face was still up in Franconia Notch – nearly 12 years to the day. But around 2003, remember, many of them just became of age, or would become of age. So in the days of progress, there were few people on the autism spectrum as adults, as so many were children, and in those days many were suffocating of big heavy smoke of destructive political actions of the leadership of the time.
I feel like its worse living in New Hampshire and with autism than years past! Why are we settling to such a low level? I call this Unanswered questions.