A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts in special needs parent

I think we get used to the 2nd looks from parents of typical kids.  And the simple truth that our kids don’t get invited to many parties.  Here’s a recent story from a dad across the pond who had had enough and used Twitter to express his anger.

https://www.thesun.co.uk/fabulous/4857833/dads-heartbreaking-autistic-son-invite-birthday-parties/  dad's rant

Three groups control 99% of the money, and novel studies have a hard time getting funding.

 By

We still don’t know what autism is, despite decades of research and billions of dollars spent. We don’t know what causes it or how to treat it. This lack of progress is partly the result of structural deficiencies in how autism research is funded. Fortunately, lessons from financial markets and the venture-capital industry can help solve these problems and accelerate the pace of discovery—for autism and perhaps other medical conditions.

Consider recent research by Robert Naviaux, a professor at the University of California, San Diego. Earlier this year he announced results from a clinical trial involving 10 boys with autism. Half were given the drug suramin and showed significantly improved language and social behavior. The study lends further support to Dr. Naviaux’s theory that a treatable metabolic condition may underlie autism. This promising lead is welcome news, but it reinforces my view that the scientific understanding of autism is years, possibly decades, behind where it would be if the handful of groups that control virtually all funding for autism research had taken a more-diversified approach.

In finance, markets that are deep—made up of many investors with varying opinions—are more efficient and better at price discovery. Similarly in science, many “investors” funding multiple approaches in parallel should lead to more-rapid advances. Therein lies the problem. In the U.S. just three organizations control 99% of all funding for biomedical research on autism: the federal government (primarily the National Institutes of Health); Autism Speaks (which does commendable work raising awareness); and a large foundation funded by a family. Everyone else collectively makes up less than 1% of funding.

These three organizations almost exclusively support research that aligns with the conventional view of autism as primarily a genetic disorder of brain wiring. The problem is that this “genetics-first” paradigm does not fit the emerging research, including Dr. Naviaux’s, and has failed to produce answers. Research that does not fit neatly within this view—or that dares to contradict it—has little chance of being funded.

PHOTO: ISTOCK/GETTY IMAGES

Case in point: None of the three organizations have supported Dr. Naviaux’s recent research or the clinical trial, even after he successfully reversed autism-like behaviors in multiple mouse models. Thankfully, a grass-roots effort by parents and small nonprofits, including the one I run, was able to supply most of the funding. For the rest, Dr. Naviaux went into debt.

A similar story is what led me to start a nonprofit in 2014. While trying to understand my son’s unexpected improvement in autism symptoms while taking a common antibiotic, I was surprised to discover results from a clinical trial published 15 years before. In that study, 8 of 10 boys with severe autism showed significant improvements while taking the antibiotic vancomycin. I met with the researchers years later to find out why they had not followed up on this novel, intriguing finding. They all said the same thing: They could not get funding because their results did not fit the established paradigm.

Portfolio theory teaches that diversification reduces risk, but there is little diversification in autism research funding. In finance, the risk is of capital loss or increased volatility; in autism the risk is a continued epidemic robbing children of their childhood and the prospect of an independent life. Beyond the personal toll, the economic costs of autism in the U.S. have been estimated at between $300 billion and $500 billion a year. Our lack of answers has a high price tag.

As Dr. Naviaux’s recent success shows, radical ideas have great value in science, but to be proven, they need to get funded. At the NIH, grant proposals are scored by small committees of prior grant recipients, a system that virtually enshrines the status quo. Incrementalism, at best, is the result. Playing it safe almost never produces breakthroughs. I’m sure the people on those committees would like to see progress as much as I would. The problem is not intent, but structure.

What we need is for the “market” that allocates capital to medical research to more closely resemble the risk-taking financial and venture-capital markets. Researchers should be rewarded for stretching beyond conventional views in search of breakthroughs. The obvious need is for more funders with adequate capital and diverse views. This could be fostered by formally combining the power of the venture-capital model with the passion of the medical nonprofit, but that will take time.

Meanwhile, some stopgaps may help. To ensure that the NIH and other government agencies diversify their autism research efforts, I propose a hard cap—say, no more than 25%—on how much of their grants can go to genetics-related studies, thus mandating diversification.

Another approach would be to start something akin to what Israel’s Directorate of Military Intelligence created to counter groupthink: an office of “devil’s advocate,” staffed by analysts whose job is to identify and challenge conventional points of view. At the NIH this group could fund studies that run counter to the prevailing paradigm.

This is the approach that the nonprofit I founded, N of One: Autism Research Foundation, takes by committing its limited funds to small studies that buck the conventional view in the hopes of seeding a breakthrough. In finance, we call it seed venture capital. It’s time we apply the lessons and approaches of a system that works to one that has not.

Mr. Rodakis is founder and president of the nonprofit N of One: Autism Research Foundation, which supported Dr. Naviaux’s suramin study.

 Appeared in the September 29, 2017, print edition.

This Op-Ed piece from Steve Silberman (author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity) is trending in today’s NY Times.  I think it’s a very even handed commentary on a societal issue, namely when authorities have no experience with autism.

policehttps://www.nytimes.com/2017/09/19/opinion/police-autism-understanding.html?ribbon-ad-idx=15

So the latest OCD behavior that my son Sean is manifesting is his refusal to use public bathrooms or port-o-johns.  Granted, most of us find those places a bit skeevy, but in a pinch, you use what you’ve got. Now when we take Sean to the beach, we have to make sure he has successfully gone to the bathroom until we get back.  Of course, that never works.

Lately, he has simply resorted to wetting himself in his bathing suit.  I have tried to shape this behavior (A.K.A. try to get lemonade out of this lemon situation) by having him go down by the water’s edge and splash around a bit.  This way, the resulting wet spot looks simply the result of the surf.  I then gently pour a bucket of ocean water over the spot to wash it away.  Of course, my OCD son then wants a dry bathing suit, but we have managed to aleve this need by quickly wrapping him in a towel and letting the sun quickly dry out his suit.

It’s all make shift, jerry-rigged solutions to OCD behavior.  But, it does allow us to stay at the beach for more than an hour, which wouldn’t be too fair to his brother and sister if we had to leave early. ocd-pacific-cbt

The crux of the matter: what if the current mainstream assumption that people with severe autism have matching severe intellectual disabilities is our own decade’s big, bad wrongness about autism? What if Naoki’s conviction that we are mistaking communicative non-functionality for mental non-functionality is on the money?

“Fall Down 7 Times Get Up 8: a Young Man’s Voice from the Silence of Autism” by Naoki Higashida, introduced by David Mitchell and translated by Mitchell and K A Yoshida, is published by Sceptre https://www.amazon.com/Fall-Down-Times-Get-Up/dp/0812997395

Naoki Higashida, pictured aged 22, spells out words on his alphabet grid. Photo: Getty

Naoki Higashida, pictured aged 22, spells out words on his alphabet grid. Photo: Getty

The boys enjoy bath time.  In fact, it is a respite for all parties concerned, especially their parents.  And so, for years and years, it’s been bath time.  Over the past few years, we no longer fill the tub, we just let the water run as it becomes a comfortable stim for the boys.  Susan and I wash their hair for them, literally using a plastic cup to rinse the shampoo out of their hair.  We then ask the boys to use a washcloth as best they can.  That has kept them reasonably clean.

Shower

But this is the summer of showering!  To start, I replaced the old shower head in their bathroom with an extended arm and a gentle rain shower head.  To be fair, the old shower head was pretty crappy and only sent out a single jet of water.  This should be far less intimidating for the boys.

Of course, they now have to relearn their new routine and become much more self sufficient.  Hell, I don’t care how long they stay in there as long as they clean up and wash their hair.

They’re only about a decade delayed in being able to shower on their own, but raising autistic kids has nothing to do with staying on “normally developing” kids’ schedules.  It’s when its right for them and another step towards being self sufficient.

Apologies to The Lord of the Rings, but I’ve been looking for a good app to help Michael identify family & friends.  Then I would love if the app could help him practice basic communication skills.  For example, I could record family members doing basic opening communication (“Hi Michael, how are you today? ) and it could continue where Michael would have to come up with the appropriate response to responses such as “I am feeling sad today.”

I think this could be a great way for Michael to practice his communication skills in a safe/non threatening session.

If anyone knows of an app that can do what I’m looking for, please share.

Thank you! apps-blog-banner

 

 

Time for a feel good post.  And one great truth about raising a child (or two) with autism is that you’re not alone.  The support you will receive from other parents, your family, the local community will help tremendously.

This article from Today is a reminder of that truth:

Things I wish I’d known about having a child with autism

http://www.today.com/series/things-i-wish-i-knew/things-i-wish-i-d-known-about-having-child-autism-t110323

sarah and micah

Nice to see Sesame Street acknowledge kids with autism with the arrival of “Julia”.   This will allow the newest of generations to get better acquainted with kids on the spectrum and what to expect.  It’s a nice development.  It might even make Elmo more palatable.  🙂

https://www.nytimes.com/2017/04/07/well/family/what-a-muppet-with-autism-means-to-my-family.html

Julia

When I read this article, I could relate in every way possible.  It’s not every family that have identical twin boys in their late teens.  And the difference in personalities between Nathan and Curtis mirrors the differences between Michael and Sean (Nathan=Michael, Curtis=Sean).

It’s a great read, especially on the cusp of Autism Awareness Day.  Enjoy:  “Out And About With Autism”

The Bickerstaff Family

The Bickerstaff Family

 

https://www.theguardian.com/tmi/2017/mar/31/out-and-about-with-autism-if-a-baby-starts-crying-we-have-to-leave