Wednesday, November 8, 2017

i've received first social security payment

About five months ago, I wrote a post stating that I'd been approved for retirement social security.  I also stated I might write a follow-up blog post when I'd received my first payment.  Well, this is it.  I'm happy to say it appears to have been transferred into my checking account.  I was pleasantly surprised at how efficient the whole process was, considering that the U.S. Govt. is involved and the four and half years I spent trying to obtain it early in the form of disability.

I wanted to write another post because, while I may not have had a whole lot of accomplishments in the now relatively long life I've lived, this one, I feel, is significant and I have some pride in it.

As I wrote in my previous blog, for a typical person, receiving retirement social security is another milestone in life, although probably the last one before they die and not really a big deal for them and an everyday occurrence.  

For most people diagnosed on the autism spectrum, this is not a typical milestone.  Unemployment rates between 85 to 90% are reported.  A number of individuals with autism that I've met in real life and have encountered on the internet have been on SSI and have never had "substantial and gainful" employment as defined by the social security administration.  Others I know, have been turned down.
I was very lucky to have supportive parents over the years, but there was still a question of whether or not I would have to apply for SSI and have to live on $900 a month from the government and not be allowed to have support from my parents, be only allowed to have $2,000 in the bank, and have other problems involved with having to be on SSI.

Fortunately, as I've mentioned before, I was able to work sporadically from age 24 (when I completed college) to age 51(when I retired from my last paid employment).  However, it was very tough and I was fired from more than twenty jobs and may be in the Guiness Book of World Records for most jobs fired from.  Working was an incredible struggle for me and I really suffered psychologically from all my firings and the other problems I had in various workplaces over the years where things got so bad I was forced to quit.  

During the last nine years or so that I worked, I did medical transcription working from home as an independent contractor.  Therefore, I had to pay twice as much into social security as a statutory employee to get the same amount back as the statutory employee.  

After I stopped working, I tried to get SSDI, which unlike SSI, has no means test and not the same rules as SSI does, except you're limited in how much income you make from working.  After a four and a half year fight, I did not prevail.

However, though I'm not getting quite as much as an SSI recipient would, it's close.  I'd be getting more than the SSI recipient had I waited until age 66 and 2 months to claim benefits, but chose not to do that.

One of the nastiest individuals in the neurodiversity movement and one of my greatest detractors claimed that I could easily do a menial job and keep it, but because I'd gone to college, I felt this was beneath me.  This is absolutely untrue, as I worked in a warehouse loading merchandise onto industrial palates as my first job and I applied for a job as a delivery driver when I was having problems with transcription jobs before I got my last independent contract gig.  I would have done a menial job if that would have been easier and one I'd be less likely to be fired from than a transcription job, but there is no way this would have happened contrary to what some people's personal opinion of me is.

Others have espoused nasty attitudes toward non-working autistics.  When I described what my situation was on Facebook in one post, a nasty ND called me an enabler and a quitter.  Blogger and Autistic Self-Advocacy Network supporter, The Autistic Bitch From Hell   wrote a blog post stating the reason some pro cure autistics protest ASAN's actions is because they're lazy loafers who are worried about losing welfare benefits because they won't take responsibility for their lives if they're forced to work.

Some of my readers may remember the blog post I recently wrote about the article Ron Sandison wrote where he and Temple Grandin criticized autistics who weren't working and the insensitivity and callousness Autism Speaks displayed when they published the post on their blog.

I only wish the guy on Facebook, the autistic bitch from hell, Mr. Sandison, Temple Grandin, and the geniuses who run the show at Autism Speaks could have felt my pain and humiliation at being fired from so many jobs.  I wish they could have felt my pain from the bad treatment from I received from the California Department of Rehabilitation when I was first trying to learn medical transcription.  I wish they could feel my pain when I tried to learn computer programming and could not do it.  I wish they could have felt my stress anytime a supervisor walked by me and I was scared they were going to call me into the office to fire me.

I'm proud that I tried my best to work and had some success.  Whatever happens during the rest of my life I'm glad I had one accomplishment and can point to a positive resolution. 

Thursday, November 2, 2017

Upload of paperwork from Eric Courchesne's lab with ADOS confirmation of autism dx

Approximately eleven years ago.  Autistic conference speaker Tom Mckean created a hornet's nest when he wrote a letter to autism conference organizers stating that he believed that autistic presenters at conferences should release paperwork to speak to prove they're not self-diagnosed.  This generated the ire of neurodiversity proponents who felt McKean was singling them out.

Recently history has repeated itself when comments Jill Escher made to the IACC were read, suggesting that her severely autistic children's problems were not the same as those of extremely high functioning individuals.  This prompted autistic public members of the IACC to suggest they had similarities to Ms. Escher's children as well as other individuals gravely impacted with autism, yet one individual did not want to seem to go into what their challenges were

Though I disagree with Mckean that private individuals presenting at conferences paid for by private funds should be expected to turn over diagnostic paperwork or letters from doctors, I believed that autistic people appointed to government posts who make policy recommendations on how Taxpayer dollars are allocated to autism research and funding are a different case.

I expressed this thought on twitter, suggesting that public members of the IACC who are appointed because they are autistic provide the government with paperwork showing a diagnosis or even possibly make the record public someplace.  This ignited an internet war where I was bombarded with critical and even angry responses from a variety of people.  Some of them pointed out that if I were saying this should be done that I,  as an allegedly autistic person, should do the same and release my own paperwork to the general public.

Unlike the autistic public members of the IACC, I've never used tax dollars to promote my agenda.  However, I felt these people did have a point.  I've promoted myself as a somewhat public autistic person over the years, self-published a novel as an autistic person and have also appeared on national radio shows and was profiled in a national magazine as an autistic person.  I feel that I should be accountable as possible as an autistic person.

Though I was not diagnosed in early childhood as people did not know much about autism in those days, I was diagnosed later in early adolescence by my psychiatrist at the time Richard Casady.  Some years later, in 1977, Dr. James Simmons also diagnosed me.  To the best of my knowledge, no paperwork is available from either of these doctors.

However, when I needed to get on my parents medical plan as a disabled dependent, Samuel Sapin, my former pediatrician who knew me as a toddler in the late fifties when I was severely autistic and unable to talk, wrote a variety of statements to Kaiser so I could get on my parents' medical plan as a disabled dependent.  One of these statements goes back to 1985 or earlier which I presented to the California State Department of Rehabilitation when I was getting services from them.  Later in 1989, when I was first a research subject of the Courchesne lab, I presented it to them.  Later, in 2004, the bureaucrats at Kaiser wanted another letter.  I used this when I applied for disability in 2007.

I don't have the first of Dr. Sapin's letters handy, so I published the one in a blog post he wrote in '04.  I was kinda traumatized and stressed by the internet flame war and controversy that my suggestion initiated.  Also, the statement had my medical record number and my mother's as well as other info I was not sure I wanted on the internet so I deleted the post as well as two others that were critical of one allegeldy autistic public member of the IACC.  

However, I recalled I also had paperwork from the Courchesne lab and an evaluation I underwent with Dr. Alan Lincoln that they wrote to use in my disability case of some years ago.  Here is the paperwork.  The first paper has my social security number on it which I crossed out for obvious reasons.  The interested person can see that this is confirmation that my autism was confirmed according to ADOS criteria.  At some point, when I can figure out the best way to do it and get Dr. Sapin's earlier letter, I might upload that as well in this or another blog post. I realize this may not satisfy my numerous detractors in the neurodiversity movement, but here is some paperwork on my autism evaluation which I hope will provide some accountability of myself as a genuine autistic person who is not self dxed.