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.  


Saturday, October 14, 2017

Interesting day with John Elder Robison

No, reader, your eyes are not deceiving you when you read the title of this blog post.  I spent a good portion of my day today with John Elder Robison.  Before you stop reading this post because you think I sold out to the neurodiversity movement along with Autism society of america, Autism Speaks, and the federal government, I assure you I'm still the same pro-cure, anti-neurodiversity guy I was yesterday before I met JER in person for the first time and have been for years.

Though I've had my differences with John in the past, he's always been cordial to me and has been willing to listen and let others with a viewpoint that does not agree with his tell their side of the story.  This is in contrast to other neurodiversity proponents who do everything they can to censor me and prevent my POV from becoming known. 

John told me he'd be in los angeles at a presentation and invited me to come.  We'd known each other in cyberspace for years, but had never met in person.  I accepted his invite, and decided to put our differences aside.  We met and shook hands and he told me that he was interested in having me speak to people at the conference and show them the divergent viewpoints of those of us on the spectrum. 

I was a bit concerned that Alex Plank might show up and there might be some problems, but I'll write about this a bit later. 

I listened to him lecture in the auditorium and was a bit surprised when he said he knew autistic people who lived in the los angeles area and mentioned me by name and pointed to me.  I raised my hand and some of the audience clapped and he spoke about how much I hated my autism and wanted a cure. 

Shortly afterwards, Mr. Plank did show up and JER pointed him to the audience to.  Then, to my surprise, he invited Alex and myself to join him on stage.  The audience asked us some questions and the narcissist in me enjoyed getting some attention. 

We spoke of the problems of employment of autistics and I stated there was no simple solution, except for teaching an autistic a marketable skill and having them work at home if they could, such as what I did during my last nine years or so of being employed when I did medical transcription at home. 

Alex Plank commented that since he was self-employed, he didn't have to worry about being fired.  I was curious how Alex supported himself.  Someone in the audience shared my curiosity. and asked him about this. Plank stated that he made money from advertising revenue on WrongPlanet.

After the presentation, JER spent some time signing his books for people who went to the conference and he and I chatted a bit.  I was hesitant to talk to Alex, but he made a few comments to me and I spoke with him. 

JER asked me about my online friendship with Manuel Casanova and we discussed that a bit, but not in great detail.

I then brought up Roger Kulp's name telling him how much I wanted Roger to have a more visible position in the autism world and wished that he could have been on Autism Speaks' Board.  John said he believed at some point Roger would be appointed to something, but I was rather skeptical about that, and told him Roger had basically told me he accepted the fact the federal government and Autism Speaks were not interested in hearing his pearls of wisdom and he'd moved on.  I said that I wished Roger could have been there with us.  Robison said that if and when he's in Roger's hometown he'd be interested in contacting Roger and getting together with him.

Robison also asked me about my online friend Yuval Levental and I told him what I thought Yuval was doing now.  Yuval has been a very devoted fan and sort of my self-appointed publicist and I've appreciated the fact that Yuval would spend the time he has trying to help me get out the word about my novel "The Mu Rhythm Bluff" and my perspectives about autism.   

Without going into all the details of our chat, John Robison stated that he didn't believe that I should fight with neurodiversity proponents and that I should try to work with them on a common goal.  I explained to him that I did not want to work with people who were abusive to me and insulted my parents. 

This is when my interactions with Alex Plank became a bit more interesting.  Alex pointed out that he was an ND guy but had never insulted me.  I then pointed out that he'd banned me from his website, which seemed to surprise JER, who said "really?" and looked to Plank was was nonplussed.  I also said that I'd constantly experienced rude behavior from some of WP's denizens, being called a minimally educated sociopath and such.  Plank pointed out to me that with thousands of members he could not control their behavior.  I replied that I judged people by the company they kept. 

Alex went on to apparently extricate himself from William Freund and Hans Peterson, two wrongplanet members who went out and murdered people, explaining that just because out of many members a couple of them turned out to be murderers, this was no different than the general population.  I disagreed with this, believing the percentage of killers on WP exceeds that in the general population, but did not want to be antagonistic, so I said nothing.  Then Alex added that did not make him a murderer.  I responded that though I'd had many disagreements with him, he was certainly not a murderer.  In spite of the strong differences Plank and I have had (even moreso than with JER) we managed to stay cordial to each other, so my worrying about a bad confrontational situation with Plank proved to be for naught.

Before we called it a day, I asked Robison if he had any proof that the Georg Frankl that Kanner had worked had also worked with Asperger. I'd looked at Steve Silberman's bibliography and other references and I could not find that proof.  Robison pointed out to me the article he'd written about the subject which I read but don't recall him ever providing that, so I said I'd read it again.  There is supposed to be a transcript of when Frankl applied for a position in North Carolina and I said that I'd look into it. 

Well, I hope no one thinks I'm a sellout for spending time with Robison.  I had no ulterior motive if anyone wants to think that.  A good day seemed to be had by all and again I'm glad I got along okay with Plank. 

Saturday, October 7, 2017

deactivating my facebook account for censorship of pro autism cure post

I just wanted to let my readers know that I encountered a facebook group autism acceptance (or something like that) who had a post asking why any autism group would promote a shirt advocating for a cure for autism and ergo the destruction and killing of autistic people.  It was captioned with the following photo:
This is a photo of actor Vin Diesel wearing a shirt advocating for a cure for autism .  This generated a flurry of angry comments protesting a cure and claiming those wanted a cure wished to destroy autistic people.  Some people alleged that this was photoshopped and Mr. Diesel never actually wore this shirt, i don't know if that is true or not.  

I made the mistake of posting a comment on this page stating that though a cure may be considered politically incorrect, it was a nice thought and that if people did not want a cure for autism they should not get one. 

I then copied and pasted this photo on my own facebook page with a similar comment.  I was shocked to find that at least one of these neurodiversity people reported this to facebook and had my post deleted. 

I was so shocked and angry over this injustice that I posted that I was seriously considering deleting my account.  One individual commented that some neurodiversity people had started a page entitled "Mothers who hate their autistic children" which was apparently one of the well-known attempts by some neurodiversity activists to bring back the bettelheim era.  They would say things like some mothers wanted to cure their autistic children because they hate them.  They filed a report with Facebook who responded that this did not rise to their definition of hate speech and did not delete the page.  But apparently if someone posts a polite comment and photo like this, this constitutes hate speech from Facebook's point of view. 

I wrote a post stating that I was considering deleting my account I was so angry over this, though some people urged me to stay on.  I requested an account delete but it usually takes two weeks or more to go through and you can cancel before deleting your account.  I decided there might be an alternative explanation for this like a DMCA violation of posting this photo, so I cancelled the delete and told people I would stay for the time being. 

I thought this originally because the photo was taken out of the original post I got it from, but I just think the page owner found it so offensive she coudldn't stand looking at it.  So, it seems unlikely there is an explanation other than the fact facebook engages in censorship of anti-neurodiversity pro-cure posts even if they are polite.

 I've now decided on a compromise.  Instead of deleting my facebook account I deactivated it, meaning that I put it in abeyance for an indefinite period of time but I can always go back and put it back on if I want.  So this way, I won't lose data if I want to go back in and get some old photos or some other data I have on my FB page.  I can also restore the page if I change my mind. 

There is no point in participating in facebook if they are a pro neurodiversity organization who engages in this type of censorship.  Now the ND's have succeeded in getting autism speaks to abandon the search for a cure and the federal government to abandon combating autism, they've now suceeded in getting facebook to delete any pro-cure posts that they report to them.  At least they were not successful in getting my newsweek profile killed. 

So I guess if anyone gives a shit about me they can see what I post on twitter, which does not seem to engage in the petty censorship that facebook does. 

I enjoyed logging on to facebook and looking at some people's pages and chatting with people and all the other perks involved in being on facebook.  I guess the ND's can take some satisfaction in that they've delivered another blow to me and unfettered speech.

Thursday, September 28, 2017

If a new HHS secretary is appointed, will they do something about neurodiversity

Those who have been following the news know there's been some controversy about certain government officials in the Trump administration who have abused their power by using government aircraft at taxpayer expense when they could have purchased much cheaper flights on commercial airlines.  HHS secretary Tom Price is apparently one of the worst if not the worst offender in this regard, piling up a government tab of around 400 grand.  After a barrage of media publicity, secretary price claimed he would not be using the private jets anymore.

According to an article in the Los Angeles Times, president Trump himself expressed displeasure at the antics of his HHS secretary and has not ruled out firing him.

After Price's appointment by Trump and his confirmation by the Senate, I emailed Mr. Price urging him not to allow members of the neurodiversity movement such as John Robison, Samantha Crane, and Noah Britton to serve on the IACC.  I also urged him not to seat an IACC if the executive branch of the federal government could legally do so.  Though congress passed the CARES act which includes having to have an IACC, I'm not sure if that means the president and secretary of health and human services are legally obligated to appoint members.

Not surprisingly, Mr. Price did not respond to my email and, if what I've been reading about him in the news is true, he's apparently less than an ethical person.

If Trump fires Price and appoints a new HHS secretary, then I guess I'm going to have to start all over again and write him/her, urging them to do something about the ND's.  Not just the fact that some of them serve on the IACC, but also those in any position of power such as Scott Robertson's appointment to some other thing outside the IACC and John Robison's and Steve Shore's appointment to review grant applications.

As I've said before on multiple occasions, several anti-cure, anti-treatment individuals have been appointed to the IACC and other government affiliated programs.  Not a single pro-treatment, pro-cure autistic has been appointed to any of these.  This is despite the fact that Roger Kulp and possibly some other individuals on the spectrum who are in favor of cure/treatment might actually have some constructive ideas about autism-related matters.  Roger tried to get on the IACC but was turned down. 

Though John Robison has claimed he's pro-treatment and is in favor of remediating the disabling aspects of autism, he still says he's opposed to a cure, which, in my opinion, is like saying people should learn how to swim, but they shouldn't get wet.

It will be interesting to see if Trump appoints a new HHS secretary and if he does, that individual will be hearing from Autism's Gadfly (me).  So far, secretary Price, NIMH head Joshua Gordon, and President Trump himself have not taken a position against neurodiversity and have not done anything about these people and their influence in government-related autism matters.  If Price gets canned and Trump appoints someone else, I hope they'll do something about neurodiversity. 

Tuesday, September 26, 2017

Life didn't imitate "the good doctor's" art in one case.

There's been lots of hoopla over the new TV show, "The Good Doctor" which uses the cliched trope of autistics as supermen.  Apparently, in the good doctor's case, M.D. should stand for Magical Deity.  Though I watched all eight episodes of "Atypical" I decided to take a pass on "The Good Doctor" as I find the premise of autistics as supermen offensive, was bored and unable to follow the plotline in "The Accountant", and felt the premise of the show was also not compelling.  Therefore, I suppose I can't completely comment on the show without having seen it, so I'll end my comments about the actual show here.

But one of the interesting questions that has come up due to the publicity the show has received is whether or not an autistic could actually be a competent physician in real life.

In John Elder Robison's book, Switched On, he states that one of the other Asperger's research subjects of the Harvard TMS group is an orthopedic surgeon.  

Neurodiversity activist Sara Luterman, writing for NOS magazine, claims there are lots of autistic physicians and medical students. I did not check out her link, so I can't really comment on how valid this claim is.

In a Scientific American Blog an author who I think may be savantism expert Darold Treffert (but I'm not sure) stated that it's plausible that an autistic savant could be a gifted surgeon.

But it's an interesting question.  Even if an autistic is so mildly on the spectrum or can overcome his/her disabilities to such an extent they could get an astronomical GPA in college, get into medical school, have the ability to work with patients during their third and fourth year of medical school, would they be able to perform the functions of a physician effectively?

The reason that it's such an interesting question is that there is one known case of this I've written about previously where the answer appears to be no This is the case of a physician alleging to have Asperger's syndrome named Martin Jakubowski who began a primary care physician residency in a hospital in Ohio.  Though he scored high on his medical knowledge examination, he scored poorly on the emotional intelligence exam.  Supervisors noted his weak interpersonal skills and began to question his ability as a physician.  He had difficulty with instructions to patients, interacting with other physicians and speaking on the phone when doing his job.  Because of all these problems, the autistic physician was fired.

He attempted to appeal his firing, claiming that his disability should be accommodated because of the Americans with Disabilities Act.  Jakubowski lost his case in Federal court because the court agreed with the hospital that Jakubowski's impairment prevented him from being able to perform the job with or without reasonable accommodations.  The "good doctor's" request for the accommodation of  "understanding and awareness" was not deemed reasonable.  He also asked that a doctor be assigned to him to monitor his activities.  The court agreed the hospital had the legal position this was not a reasonable accommodation as it would cost the hospital too much money and time to do this.

Keeping patients safe is certainly a requisite, so it is certainly reasonable not to allow an autistic physician to continue in their residency if their disability prevents them from being effective in their job.

Very few people who have watched and commented on "the good doctor" will ever be aware of who Martin Jakubowski is and the irony that life didn't imitate art in at least one instance.  

Saturday, August 12, 2017

Atypical: A typical Hollywood presentation of autism

Right before atypical came out on netflix, I thought I’d watch it and write a blog post about it.  A hot commodity in the autism blogosphere and cyberspace, I knew it was bound to generate some controversy.  Those who have read my blog for the past nine years know I seem to thrive on controversy, or at least jump into the forefront of it, either intentionally or unintentionally.  However, I got sidetracked by the shock of watching the first few moments of the opening first scene of the first episode, noting Sam the protagonist doing a behavior called “twiddling” a form of self-stimulation similar to the identically named activity I do that I’ve written about from time to time.  His therapist next asked him if he wanted to donate his brain of science, mirroring the NPR show “morning edition” which I appeared on,  discussing my donating my own brain to science, in which I discussed my twiddling in words close to identical to what Sam said.  It seems improbable that this is a coincidence, but I suppose there’s a middling to fair chance Robia Rashid listened to my NPR interview while doing research for her show. 

Now that I’m over my initial shock, I’ve decided to do what I’d originally planned to do and give my $.02 worth take.  I suspected that the irascible ND’s would take umbrage to this show, and I was not disappointed.  This show is bound to generate some controversy in the next few days. 

There are some things to like about the show.  As I wrote in my previous post, celibacy is a problem for many autistic people that gets very little play in the media or in literature and other entertainment mediums.  I’m glad that the show takes up this theme, but there’s a downside, but more about that later.  Amy Okuda, Jennifer Jason Leigh, and Brigette Lundy-Paine are attractive actresses who add some eye candy.  (At my age, 55-year-old Jason Leigh is attractive, though possibly not to younger viewers).  The show has a certain intensity and conflicts between the various characters that adds some intrigue.  Also, each episode has an old Sidney Sheldon style “cliffhanger” ending that may compel at least some viewers to watch more.  The end of the eighth and final season episode is particularly intriguing in this regard, but I won’t spoil it for anyone.  It appears Rashid planned to make more episodes and hook her viewers further.  Lundy-Paine’s character is fleshed out and provides some intrigue to the show.  The episodes do show some (though not much) of the angst of living with autism.   

However,  the pros stop there and are inundated by the plethora of cons.  I was prepared to possibly refute some of the hostile remarks about the show the ND hatemongers would inevitably make.  However, I found myself nodding in agreement with their take on Sam Gardner as a sort of cardboard one-dimensional character who represents a conglomerate of autistic symptoms, rather than a believable autistic person.  He wears headphones to eliminate sensory noise, despite being mildly autistic enough to work part-time, go to a mainstream school and get A’s.  This is much more common in lower-functioning kids such as Judith Ursitti’s son than in someone with mild autism.  It shows him on a job not having any problems with co-workers or job performance, particularly intriguing when he’s working in a store and it involves customer interaction.  He also has a ‘typical’ friend who is Pakistani and probably an alter-ego of Rashid herself.  He develops a crush on  his therapist, a 26-year-old clinical psychologist.  Someone that young already having a ph.d., finishing their internship, and being an adjunct professor seems over-the-top. 

The protagonist’s mother appears to be intentionally presented as one of the most unlikable characters you could imagine.  She is overprotective of her son, invades her children’s privacy and commits adultery and then blames her boyfriend for having an affair with a married woman.  Why the show’s creators would not want to make the mother a sympathetic character seems baffling.  Other episodes seem way over the top, including his nearly hooking up with a girl he scares off initially, being insensitive to other girls and people and then being easily forgiven.  One of the most over-the-top things was a sensory dance where the entire school accommodates the protagonist by having a silent dance without a band where the students can listen to music on optional head phones while they dance. 

While the show is billed as the protagonist having women problems, there seems to be a bait and switch tactic where he is actually successful with at least one girl who seems to have some behavioral quirks which might place her on the spectrum, but this is not mentioned explicitly. 

There is no one telling him he should find an autistic girlfriend which happens to us so typically.  Perhaps I should excuse Robia Rashid’s ignorance about the problems that celibacy presents for many autistic males, but it seems a writer should be more aware of a subject they choose to tackle. 

In essence, there is not much compelling about “atypical” and as is typical (ironic use of the word) as it presents a very warped and optimistic view of autism that does not ring true or jibe with real life, seemingly par for the course of Hollywood depictions.   

I was not sure I would watch all eight episodes but I ended up doing so, compelled mostly by the controversy and apparent borrowing from my life in the first scene. This show seems to be getting so much press and traction, I suspect it may be one of Netflix’s golden eggs and there will probably be more episodes but I don’t think I will be watching them and I don’t recommend to my readers that they do so either.