Not That There's Anything Wrong with That!

This past week, comedian Jerry Seinfeld created waves when he told NBC Nightly News anchor Brian Williams that he thought he figured somewhere on the autism spectrum.  (Check out some of the conversation reprinted in the New York Daily News below.)

Predictably, all hell broke loose afterward with autism awareness groups crying foul, parents of autistic children going on Twitter rage spirals, accusations of "glamorizing" autism - seriously?? - and tomfoolery of various other natures (an article titled "Jerry Seinfeld Drops a Junior Mint into Autism Community" was posted to the Age of Autism website).  

From my POV, whether Seinfeld is actually autistic or not -- and let's be clear, this is not an easy illness to diagnose -- doesn't really matter.  He admitted on national television to feeling different, other than, awkward, and occasionally embarrassed or out-of-the-loop.  Why on earth then, should the public vilify him for coming out with feelings similar to what an autistic child might feel or be treated as having?? 

And why then is his ailment marked as "celebrity autism" to be rejected by the "bona fide" autism communities?  Is Michael J. Fox's Parkinson's "celebrity Parkinson's"?  Is Magic Johnson's AIDS "celebrity AIDS"?  Is Catherine Zeta-Jones's bipolar depression "celebrity bipolar depression"?

I feel like even if Seinfeld isn't *clinically autistic*, his bringing to light of his own accord and as a media persona the social struggles and fears that he has experienced is worthwhile.  And that rather than jump all over him for being a celebrity who comes out as such, we should applaud him for being honest about his difficulties, regardless of whether he is a card-carrying member of the autism club.  He is not denying that there are many others suffering on the lower-functioning end of the spectrum.  

But, what do I know....?  It just seems, these days, haterz gonna hate and we canNOT all be friends....
 
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Jerry Seinfeld believes he's on the autism spectrum -- and it's no laughing matter.

The 60-year-old comic legend made the surprising admission in an interview with NBC's Brian Williams.

"On a very drawn-out scale, I think I'm on the spectrum," Seinfeld said in an interview that aired Thursday night.

Williams then asked what led Seinfeld to conclude he suffers from the widespread developmental disorder that impedes social interaction.

"You know, never paying attention to the right things," the Manhattan-based funnyman said.

"Basic social engagement is really a struggle."

Seinfeld, known for his "have-you-ever-noticed" brand of observational humor, is considered one of the top comics of his generation.

On stage, he kills.  But he revealed to Williams that he often finds himself floundering during casual conservations.

"I'm very literal," Seinfeld said.

"When people talk to me and they use expressions, sometimes I don't know what they're saying."

That description fits the symptoms of the disorder, which include an impaired ability to communicate with others and repetitive behaviors or interests.

"I don't see it as dysfunctional," he added.  "I just think of it as an alternate mind-set."

Seinfeld's candid admission was cheered by many on social media, but some autism advocates said they were concerned by Seinfeld's suggestion that what he suffers from is not an actual disorder.

"What frightens me with these kinds of statements and stories is that I don't want people to think that autism isn't a serious diagnosis, or that it's not a struggle for individuals and their families," said Wendy Fournier, president of the National Autism Association.

"What many people don't understand is that on that lower-functioning end of the spectrum, we have individuals who are suffering and whose lives are at risk."

"Autism is not a designer diagnosis," Fournier added.

Dr. Michael Rosenthal, a clinical neuropsychologist at the Child Mind Institute in Midtown, said he's not convinced Seinfeld is in fact on the autism spectrum.

The symptoms the comic cited, Rosenthal said, "are things that exist in a lot of people who don't necessarily have an autism spectrum disorder."

"They are certainly characteristics in people with autism, but the general population can have challenges in these areas as well," Rosenthal said.

"Autism is a spectrum," Rosenthal added, "and human behavior is a spectrum as well."

Class Inaction

Here's a story that caught my eye in a rather unpleasant way this past week.  According to NBC.com, a class action lawsuit has been filed against the city alleging that the Department of Education "fails special needs students."  Sadly, it's just another example in which first-world education standards fall far short of expectations.

In fact, in my opinion, the Tanzanians have this one all wrapped up; vocational training is HUGE in the Tee-Zed, whether due to many students' inability or ineligibility to pursue higher education, the strong demand from the agriculture and other informal sectors, or the high rate of unemployment which makes skills acquisition essential.

Moreover, I would venture to say that Toa Nafasi sort of sets kids with learning difficulties and special needs on the course to finding their niche to pursue a vocational skill since, for the most part, academics will never be their strong suit.  I'd like to think that we are providing that catchment to which Mr. Khattab refers in his last sentence: to give kids "a future, to be independent, to be self-sufficient, to help [themselves]."

Read on....

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A class action lawsuit claims the city's education department systemically failed to comply with state and federal laws requiring transitional services for special education students.

The suit was filed in U.S. District Court, Eastern District of New York Wednesday.  One of the plaintiffs, 16-year-old Mohand Khattab, attends New Utrecht High school in Brooklyn.  The special needs student, according to his parents, was never given a vocational assessment or subsequent training to help him transition into life after high school.

 

The school system never even disclosed something like that to us -- to let us know that he is entitled to vocational assessment or vocational training," said his father, Hossam Khattab.  "We don't know anything about that."

Khattab sought legal help once he obtained his son's individualized education plan and realized there were no plans to assist him with life after graduation.

"We have to make vocational assessments for him to know his ability exactly or what his vocational interests are," said Hossam Khattab said.

According to the New York City Department of Education's website, the District 75 Office of Transition Services "is committed to insuring that every student receives the services needed to achieve his or her desired post-secondary outcomes to become productive members of the community."

This includes working to make sure skills are developed and supports are provided so that every individual can become as independent as possible.

Attorney Gary Mayerson, who filed the class action lawsuit, claims the DOE has violated state and federal law by not providing this assessment and training to potentially tens of thousands of students.

"Parents are not informed by the city about what transition is," Mayerson said.  "In fact, most parents walk out of the IEP meeting not knowing anything about transition."

The DOE said it's working with the school and Khattab's family to ensure the boy gets the help he needs.

"The DOE is committed to providing the services our students need to thrive in and out of the classroom, and we are working with this school and the student's family to ensure that we provide the student with appropriate services," the agency said in a statement.

Meanwhile, Khattab's father hopes it's not too late.

"I don't want him to continue to fall through the cracks anymore," said Hossam Khattab.  "We are trying to give him a future, to be independent, to be self-sufficient, to help himself."

The Year of Living Dangerously

Hello, hello, hello, and many salaams to all!  It is now November and I am more than halfway through my annual stateside sojourn during which I have been addressing administrative and fundraising concerns.  This Fall has been fruitful - if a little rushed - and I am looking forward to a productive 2015 when I go back to Moshi at the end of December.

Since I've been in New York, the Project has been in Vumi's capable hands as she supervises the two other teachers.  In addition to managing the current program, Vooms has begun investigating possibilities for expansion into the two neighboring schools of Msandaka and Kiboriloni.

As for the students, you already know that the 2013 group has, for the most part, been released back into the mainstream pool of pupils full-time, but with some follow-up where needed.  The second group from 2014 is around the halfway mark through their tuition/curriculum modification program, and Vumi emails me weekly that they are all making great strides.  Three children from 2013 whom we determined would be better off in a self-contained classroom are now at the Gabriella Children’s Rehabilitation Centre where they are being provided special education and boarding.  So far, just one child from 2014 is at Gabriella but I am expecting to register at least one other little girl when I get back. 

Please find below a bar graph created by Angi Stone-MacDonald depicting the progress of the 2013 students for the whole year of their intervention (the first six months results are posted alone in the entry titled "Angi of the Morning" from September).  You can clearly see the huge difference between the initial assessment (green) and the midway assessment (red).  The one-year mark (blue) shows a bit of slowing down for some of the kids but that is not unusual.  As we have always stated, Toa Nafasi is about getting slow learners up-to-speed so that they can succeed within their communities.  No one is trying to generate little Einsteins here; we just want all the kids to have a good chance of getting through the Tanzanian school system with the skills to make good lives for themselves.  Of course, should we happen to stumble upon a tiny genius or two along the way, well, that would just be icing on the cake!!

In other news, we are preparing to hold the annual Toa Nafasi "friend-raiser" in the United States, once again in Washington DC (I was born and raised there) but also in New York (my college and post-college stomping grounds).  It's been a busy few weeks plotting the invitations and guest lists, venues and catering, my speech, and most importantly, my outfit (!!), but I think we will be good to go once they roll around in a month (DC) and two weeks (NYC) respectively.  Please contact me if you plan to be in either either location in mid-November and early December and would like an invitation!!

And, as I am keenly aware of the need to diversify our sources of funding in order to make The Toa Nafasi Project a public charity rather than a private foundation, I have turned my attention (polepole) to continuing the good work of Lizzy Conley, our short-term, part-time administrative assistant from the summer, and started working towards the procurement of a foundation grant.  We have a few possibilities but it's tough-going and a lot of work, so if any readers out there know how to research opportunities and write proposals, give me a shout-out; you may have a job with The Toa Nafasi Project!!

That, my friends, is the haps for now.  Back at you at the end of the week!!