The Hopeless Autistic: Giving up on Self Advocacy

Originally posted in March of 2018.

The following is my own opinions only and are not reflective of any organization or individuals. Also any influence by any organization or people are not reflective in this post as well. This was from a time and place from my own observations.

I was asked by an out of country commenter what have I done for any contributions while I had been critical of certain self advocates with the infamous “Ableist Script” on Twitter in late 2015. Touching someone that doesn’t want to be touch could be considered as discriminative behavior in their fucked up world.

Anyhow as I responded I was on a planning committee for an annual “family support” conference for a number of years. Located at a couple different resorts over the years on US302 during the end of NH Spring vacation; I left the committee after being heavily burnt out. I was the only member in his twenties, second to two teenagers. I was the only individual with a developmental disability who actively went to a simple and rhetorical committee rubber stamping meeting.

Yeah it was to me a form of advocacy, but did it get me anywhere?

A unit of state’s Department of Health and Human Services had overseen the meeting. In all fairness the agency was the organizer and the facilitator. However their power was to be questioned. While I didn’t out them directly, (nor am I intending to be a whistleblower) it was very confusing for an autistic to understand their roles during 6:00 to 8:00. Their behaviors of a state employee vs. family support was blurred. State employees chaired the committee for over five years after the chair, who was a family support advocate that lived in Greater Manchester area passed away very quickly. No one took over and state employees who was part of the system AND had a family member with a disability took over. The latter was almost sneaky if that.

I objected a lot of this conference. There was a political tilt back several years ago; a height of 700 individuals who attended; the peak was that same year. I joined the committee not too long after. Most people are “in” so to speak. Only about seven or so who would frequently attend (but may miss a month or so, since we met monthly except for December, February and April) were family supports, or families impacted by a disability. The rest work in Concord, and have children with a disability. They mostly lean left, and not everyone leans that way. It was a clique, and any attempt to find speakers for the seminars for things outside of “schoolage” or children was little to none. Year, after year, many people would write in feedback “adults with autism” focus on “autism and adults”, whatever that had “adult” and “autism” as “adult” means someone over the age of 21 and “autism” meaning specific differences that differs between Down’s, Rett’s or other pervasive developmental disorders.

This became a job. I was passionate, but bitter, and frustrated. These disjointed thoughts that were often caused by my already stressed out self trying to find a day program an day work program and fighting with previous supports was occurring at the same time. There was only a handful of months where I was mellow.

Even with my presence and the baggage I carried; I represented myself to a committee of what one’s autism could be. Yet the committee and state employees who oversee the very same programs that funds them could not care less about my day to day struggles. (Is that a conflict of interest on their behalf?)  The people who work there are no bright light bulbs. These people are hacks. I have shown my frustrations and anger, and bitterness to the point I handwrote a resignation letter about a couple years ago and they were so scared as hell that I would kill myself because of a whistle word of “I cannot take it anymore with an establishment advocacy system”… they called my case manager which supposedly was the chain of command of communication. This lead into additional stress and lead into a crisis not too long after. That experience also painted a very hopeless picture of other types of services people may run into in one’s live even if it’s for a month once in a lifetime.

Because the letter came off implying self harm in one’s thin skinned eyes (where “I cannot take it anymore” does not always imply self harm or suicide) the letter was not released to my peers on the committee and was kept confidential despite a blatant consent to release it. Only one of the teenagers I knew, knew because I transmitted it on Instagram via a private message.  They kept it confidential because they felt it was a threat.

I never spoke to anyone at that unnamed agency in the State of New Hampshire ever again. I never will or have any intentions to ever go back to that conference anymore. Not because I felt that I would be denied in the future, I left on my own terms. I wasn’t pissed off, I wasn’t angry, I was treated like a wallflower because they knew i was autistic, and therefore their world, I am not supposed to be their peers. I am supposed to be around other fearless people who are in my position (with a developmental disorder.) Boy did I have feelings I was cornered. The feelings and treatment by these employees was despicable. I felt devalued by professionals that should’ve known about my potential. But they were like everyone else I once knew in my lifetime where the autism and my inabilities became my identity.

There has been changes, sources I’ve heard is the state will no longer be the host organization, because of potential budget discovery as the general court is putting every state dollar in scrutiny. The apparent conflicts of interest is one of the reasons I believe this change will occur. Some are concerned, but I suspect because they are an “establishment” and any of those people would be afraid of change because it would be a conflict to their own self interest.

From what other people tell me the agency is becoming more professional (about freckin time) and there is more accountability.

But now I know why some other family friends tend to “stay local” i.e. staying away from state authorities. Because it’s anti-citizen, anti-individual, passing the buck, and cannot take reasonable criticism.

And whose really “ableist”? And who has the stones to call them out on it?


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