autism spectrum disorder

Parents of Severely Autistics Vendetta Towards Finding their “Voice”

Clickford, Steven M.

Some days, I feel like I am in the middle ages, or the middle of the 20th century with backa– agendas against any or all autistics.

Because I understand the spectrum of the autism spectrum disorder, its diversity and complexity, I’ve always kept a netural tone. I’ve been a strong advocate towards inclusion of all members of the ASD world; and steal a page out of the playbook from the worlds of Down’s and the deaf and blind. They don’t want a cure. They want better treatment and better QOL standards. By no means, have I ever endorsed the “hip” nature to be autistic. I always kept a sensitivity to the “lower functioning”. But I’ve never spoke for them, and I don’t expect anyone should speak for me. In fact no one should speak for me – PERIOD. I can speak for myself.

I can speak for how being told about my autism destroyed my entire life. I’m a talking and functioning guy saying how being told my autism destroyed my life.

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The Lack of Direct Support Professionals

Clickford, Steven M.

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.