Raising Expectations?

Monty, aged 14 with ASD, has finished his year-end assessments in his first year at high school.  Monty has classic autism, which we can also call a type of Strictly Defined Autism (SDA), or what autism used to be under DSM3, before the diagnosis was extended in 1994 to include Asperger’s at the clever end and PDD-NOS in the middle.  From that point onwards, autism means entirely different things to different people.

For the last 6 years Monty has moved up each year with his neurotypical peers, who are two years his junior.  During those years I used to go to the parent teacher meetings at school and explain that if Monty could not keep up, it would be just fine to hold him back another year, for example if he came at the bottom of the class in most subjects. We held him back two academic years, 6 years ago, in the “big reset” and I assumed this would likely need to be repeated, since people with SDA cannot acquire skills as fast as typical people.

This blog is really all about using biology to try and have someone with SDA keep up with typical peers, or switch from SDA to something more Asperger’s-like.  This did look like an impossible task at the age of 9.

Can people aged 9 with SDA “catch up” academically with NT peers?  Remarkably, it does seem to be possible.

This year’s report card is nearly all As.

Big brother has just graduated from the same school and he is as amazed as me that Monty, the one with autism, now gets better grades than so many of the others. “What is the matter with the rest of them?”, he asks, “why can’t they beat him, he has autism”. 

The big difference is that Monty pays attention in class, has two great part-time assistants, does his homework and does academic work in the school holidays and he has his personalized PolyPill.

One teacher commented that if the others worked as hard as Monty, they would also be getting As.

Monty now comes home with another A* and his Assistant asks why we are surprised. Monty’s original school assistant from 3 to 8 years old, and so pre-PolyPill, never had such moments.

Conclusion

It is getting rather repetitive writing about Monty’s success in mainstream school – but what happens in the long run is what most parents really want to know. 

Since we all like a good story and a happy ending, most popular accounts of autism are not representative.

“The Reason I Jump” was written by the non-verbal Japanese, 13-year-old, Naoki Higashida, with help from his mother and then translated into English and other languages.  Most people loved this uplifting book, but some parents of non-verbal kids with autism clearly hate it, either because they do not believe he actually wrote much of it, or because it suggests that inside the head of the non-verbal child with severe autism is a literary genius.

The very detailed personal autism story is the one about Noah Greenfeld, now in his 50s. This man with severe regressive autism was the subject of 3 books written by his father in Noah’s youth and one by his brother decades later, so you can learn how things ended up, if you were left in any doubt.

Josh Greenfeld, Noah’s father, once described to the TV news show, 60 Minutes, the process he went through in his thinking about Noah.

“At first, you just hoped he’d be normal,” he said. “Then you just hoped he could talk. And then you just hoped he could communicate a little more or understand. And then, finally, you reached the point where you just hope he can be well fed, well taken care of — be happy, not feel pain. You become very, very basic.”

So, while it is very thorough story, going from failed use of ABA, to all kinds of institutions and numerous doctors, in essence nothing helped.

In his brother’s book there is a whole section about Noah recovering and adopting a “normal” life, but this turns out to be a trick the author is playing. This clearly upset many parents who bought the book, but not the literary reviewer at the New York Times.  

Even Noah’s Japanese mother, Fumiko Kometani, wrote a book, Passover, that includes him, for which she won a Japanese literary award, but the New York Times regarded it as anti-Semitic. Noah’s father was Jewish and the book is a Japanese perspective of living in the United States. 

Josh Greenfeld, Who Chronicled His Son’s Autism, Dies at 90

A Child Called Noah (1972)

A Place for Noah (1978)

''A Place for Noah'' (1978) picked up the account in August 1971, and focused on the family's six-year quest to find a school or day-care center where Noah could be educated or trained. On a deeper level, it is also about the family's struggle to keep a place for Noah in their hearts as well as their home. ''I can never kill the dream that is my son,'' Mr. Greenfeld wrote in January 1977.

A Client Called Noah (1987)

The sweetest recent moment for the Greenfelds came in February 1986, in Tokyo, where Foumiko was presented with the Akutagawa Award, Japan's most important literary prize. As Mr. Greenfeld described it, ''It's as if there were a single Pulitzer Prize, and it came with a black belt.''

Is this a happy ending? ''With Noah, there is no ending,'' said Mr. Greenfeld, noting that Noah could not understand, or share in, his mother's triumph. ''With Noah, you think of the old Pearl Buck line - a continuing sadness that never ends.''

Passover, Fumiko Kometani (Noah’s Mother)

This is the book that won the Akutagawa Award in Japan but appears to have been loathed in the United States. 

Boy Alone, A Brother’s Memoir  (2009), Karl Greenfeld

This is the sibling's view of growing up in the upturned world of severe autism.

Noah Greenfeld, the subject of several well-received books by his father, Josh, was “probably the most famous autistic child in America.” Or so claims the journalist Karl Taro Greenfeld, Noah’s older brother. His new memoir supplies plenty of anecdotes to prove his point — a “60 Minutes” crew moves into the Greenfeld house; Karl’s juvenilia about Noah “ends up” in The New York Times and Esquire. Yet for Karl, living in a family that was “one of the public accounts of autism” was shaming. He became “locally famous,” as he puts it, “for nothing more than having a retard brother.”

One interesting point highlighted in the above short video is that Noah's brother wanted people to know what an autistic adult looks like, since he believes there will soon be many more. He is right, but his "autism" is not the one that most people will encounter. The SDA type of autism affects about 0.3% of the population, but Noah is at the severe end of SDA, so maybe 0.1% of the population. Soon in the US, the very flaky CDC figures will inevitably tell us that 2% of the population have "autism". Of those people with "autism", only 1 in 20 will look like Noah. One reason the CDC figures are misleading is that they apparently include "educational autism" (school diagnosed) as well as medical autism (diagnosed by some kind of doctor/psychiatrist). 

An Asperger blogger’s review of the books: -

http://autismgadfly.blogspot.com/2009/05/noah-greenfeld-flunked-lovaas.html

Raising Expectations?

Coming back to the tittle of this blog post, for parents of children with Strictly Defined Autism (SDA), DSM3 type autism, or just call it severe autism, I think the experience of Josh Greenfeld, Noah’s dad, is pretty typical, albeit that Noah is at the severe end of DSM3 autism. This kind of autism is not something nice and does not end well. Noah's Dad gave up calling it autism in the end, he preferred to call it brain damage.

The fact that Josh lived to 90 years old and his son is still alive is remarkable and I see that as a success; but Noah never defeated autism.  It was not however what Josh wanted. In his words:-  "A fellow parent who had a developmentally disabled - I don't know what word to use anymore - child (told me) that we're the only parents in the world who somehow wish and pray fervently for our offspring to pre-decease us. And there's truth in that. Because if he's gone, then it's easier for us to go psychologically."

ABA did not work for Noah, at all. As his big brother summed it up “Noah flunked Lovaas” and Noah was treated by the man himself.

From reading this blog, you might imagine that Noah likely has severe regressive autism, caused by mitochondrial disease. What he likely needed was the mito cocktail developed by Dr Kelly, at Johns Hopkins, and quite possibly C7 (Triheptanoin), BHB (beta-hydroxybutyrate) and C8 (caprylic acid).  Even that might not have helped, but it is always better to at least try.  

I suppose I started my autism experience with realistic expectations a decade ago and so I get to keep raising them. ABA did help, we can say that “Monty graduated Lovaas”, but it was nowhere near enough.  If you want more, you have to treat the underlying biology.

PS  

I have not read any books like those in today's post, just reviews of them this week for this post. They are not my cup of tea.

I did read a lot of books on ABA  (not my cup of tea either, but necessary) and a little about neuropsychology (actually a good read). The neuroscience books (heavy going) are out of date by the time they are published and everything you could want to know is there in journals on the internet, for free, one way or another.