A Dad's Journey

Father of Autistic Twins Speaks Out

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you could have printed this same headline 20 years ago, ten years ago, five years ago.   Some of this is attributable to better reporting, but does that explain why 3% of all boys in New Jersey are diagnosed with autism?  Triple the incidence at the turn of the new millennium.

Walter Zahorodny, who tracks the autism rate in New Jersey as an associate professor of pediatrics at Rutgers New Jersey Medical School, said he’s seen no changes in New Jersey’s politics or diagnostic procedures to explain the huge increase in his state. In 2000, about 10 children out of 1,000 were considered to have autism, compared with nearly 30 out of 1,000 in 2014. autistic boy

https://www.usatoday.com/story/news/nation/2018/04/26/autism-rates-climb-experts-dont-know-why/554247002/

As parents of autistic children, at least we are living in a time and culture where their survival is assured:

 

Pioneering autism doctor Hans Asperger sent disabled children to be killed by Nazis, new study claims memorial

https://www.independent.co.uk/news/science/asperger-nazi-study-latest-proof-hans-autism-research-spiegelgrund-a8311181.html

Hans Asperger, the Austrian paediatrician who gave his name to a kind of high-functioning autism, helped the Nazis in their murder of disabled children, according to a new report.

The new study claims that the respected professor actively recommended children should be sent to their deaths at Spiegelgrund, where the Nazis enacted a policy they referred to as euthanasia that saw hundreds of children killed.

Addressing an estimated crowd of 20,000 people gathered in St. Peter’s Square, the pontiff urged them “to take every opportunity to be witnesses to the peace of the risen Lord, especially with regard to the most fragile and disadvantaged.”  “In this regard, I want to assure a special prayer for World Autism Awareness Day, which is celebrated today,” the pope said.

The Vatican on Monday released a message from Cardinal Peter Turkson of Ghana, Prefect of the Dicastery for Integral Human Development, for World Autism Day.

“With its works, the Church shows its attention and solicitude for persons with disturbances of the autistic spectrum,” Turkson said.

 Pope Francis 2“There’s a general attitude of welcome present in our communities, although we still struggle to practice real inclusion, for which it’s fundamental that ‘our Christian communities be houses in which every kind of suffering finds compassion, in which every family with its burden of pain and weariness can feel understood and respected in its dignity’,” he said, quoting a 2016 message from Francis.

“I address a special gaze at the families of persons with disturbances of the autistic spectrum, which merit great admiration for accepting, with love, the difficult burden of a child struck with this disturbance,” Turkson said.

Observing that national and international laws requiring assistance for persons with autism are “rarely put into effect,” Turkson said it’s usually families left to provide the bulk of the care. He called for an alliance among health systems, social service providers, and educators, to guarantee care for “the whole arc of life.”

“Persons struck by these disturbances, daily, are faced not only with difficulties resulting from their condition, but also by the main limits that society itself imposes on them, preventing them from being able to realize their true potential,” Turkson said.

Boy, this is one brave, determined mom of a five year old autistic boy:

Bystanders were horrified. But my son has autism, and I was desperate.

  February 27
trapped

That’s what Newsweek is asking this week. http://www.newsweek.com/2018/02/23/really-good-weed-why-cannabis-may-be-worlds-most-effective-remedy-core-806758.html

On a personal note, we took our son Sean to the neurologist for his three year check up.  Largely, this is a de facto process that the school requires.  As we’re leaving, I asked the doc what he thought of medical marijuana.  You would have thought I asked him about turning my son into a drug dealer.   “Oh my, I’m not aware of anything in that field.  That’s dangerous ground to enter“.

Fast forward two days and what’s the big story from Newsweek?  Yup, right there in the subject of this piece.

The morale of my story is that as a parent, you need to do your own digging/due diligence and decide what’s best for your child.  And not some high priced expert who hasn’t looked at new drug opportunities since the turn of the century.  BTW, there is also research on this subject being conducted by the Children’s Hospital of Philadelphia  http://www.philly.com/philly/business/cannabis/childrens-hospital-to-study-medical-marijuana-and-autism-20171211.html

weed

 

Traveling with your autistic child is always challenging.  Not to mention handling him/her when you get to your destination.  Hopefully, your relatives are rather forgiving.

When we travel (fortunately, not far to my sister’s house), we plan how to best manage Michael & Sean.  Sean will look to spend time outside blowing bubbles.  But it is late fall and the temps will only be in the mid 40’s, so he can’t stay outside forever.  Susan has come up with other activities for Sean so that he can periodically come inside to break up his day, do some useful activities before he resumes bubble blowing.

Michael likes to perch by the island table in the kitchen and just graze all day.  How that kid stays skinny is a testament to his metabolism.  In a similar vein, we need to break up his day a bit and actually make him part of the Thanksgiving occasion.

It’s easy sometimes to just let your autistic child do their thing, while you catch up with family, adult beverages and football (well, it’s awfully easy for me).  But I need to remind myself

Painting by Jack, diagnosed with autism at age 3. Jack is nonverbal and likes to communicate through his artwork

Painting by Jack, diagnosed with autism at age 3. Jack is nonverbal and likes to communicate through his artwork (Autism Speaks)

that being an autistic parent doesn’t come with a free pass for the Holidays.   Still, I’m looking forward to tomorrow.

Wishing all of you the best of the Holidays and hopefully, a wonderful Thanksgiving with your children.

Best regards,

Kevin

 

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