ASD lab tests & the cash waiting in the wings

In the privacy of your own home…

Several lab tests are being developed that may offer a heads up to parents that their child may have an autism spectrum disorder. We just covered two of them on our most recent story on The Autism Channel World News:

But there’s a story behind the story that demonstrates one thing driving the research; the rich untapped market of a medical niche where there’s still a dearth of drugs and treatments “on label” for ASDs.

The “on-label/off-label” distinction is an important one for pharmaceutical manufacturers, because it determines if they may dispatch an army of reps to doctors’ offices and pitch the product for their on-the-spectrum patients. For an in-depth look at how this works in practice, see Huffington Post’s investigative piece on Risperdal

But drugs have to run a long, expensive gauntlet to get to market, and increasingly, as we play with the official diagnosis of autism, the primary disorder becomes an umbrella that pairs with a set of co-morbidities. It’s the co-morbidities, like epilepsy, gastro-intenstinal problems, and ADD/ADHD that drive what drugs get prescribed to alleviate some of the symptoms.

Tests, particularly those that use gene sequencing or RNA analysis, have a much easier path to market than prescription medication, and an immediate built-in clientele: parents willing to shell out their own cash for a heads up for the common worry that their children’s development are atypical.

The marketing and money behind the research

Enter Quadrant Biosciences. This well-funded startup has started teasing its Clarifi product in social media, building a list of parents and clinicians who want notice when its saliva-analysis test comes to market in “Late 2018.” (Quadrant Biosciences did not respond to our request for an interview.)

It’s full staff of marketers, funders and researchers not only has a proposed solution to: “Does my child have an ASD?” but to “Does my child have a concussion?” which shares the demographic of potential buyers who will fork over their own funds for a quick, though not necessarily totally accurate answer.

In the case of ASDs this could serve a valuable purpose as we are woefully short of diagnosticians as insurance companies become pickier about what constitutes a diagnosis. Prioritizing those who were tagged by a lab test could help us better assign who gets a professional diagnosis quickly.

Our TACWN video story highlighted two research studies that promise real-world results soon, and both of them have a “back-end” biosciences company waiting in the wings to fund commercial testing. SUNY’s is Quadrant, as we’ve noted. But for the Davis team, it is Axial Biotherapeutics though they may not be quite as far down the road as Quadrant, whose test promises a much higher hit-rate (upwards of 75%.)

It’s still too early to tell how accurate these tests may be with either company’s product. The UC Davis team acknowledges they need a lot more biomarkers to make the test relevant, and the SUNY group is still a ways from having a track record.

Palm Beach Post introduces its readers to our ‘Siskel and Ebert’

This Saturday, readers in the palm beaches awoke to an edition of The Palm Beach Post with a story about our on-the-spectrum film critics on the front page of its Accent section.
We reprint it here with the Post’s kind permission:

 Meet autism’s Siskel and Ebert

Hosting everything from news to movie review shows,
a West Palm network for — and by — the autistic
is helping change stereotypes.

By Barbara Marshall – Palm Beach Post Staff Writer


In front of a green-screen set in a West Palm Beach TV studio, movie critics Michael Precourt and Anthony Canzonetta are dissecting “Don Jon,” Joseph Gorden-Levitt’s racy directorial debut.

The acting? Not bad, they agree. They like Scarlett Johansson, of course. They’re 20-something males.

Directing and script? A solid effort.

They finish the episode of “Private Screening” with a warning: “It gets a red for sensory.”

Their specialized audience understands the coded shorthand. The film has a high potential to cause sensory overload in people on the autism spectrum.

People like Precourt and Canzonetta.

“There are flashing lights throughout the movie,” advises Precourt.

“Ow, ow, ow and ow,” said Canzonetta, the “Ebert” to Precourt’s “Siskel.

He makes a rhetorical request of filmmakers. “No more going from black screens to flashing lights, OK?”

“Yeah, don’t go all Baz Lurhmann on us with a bunch of half second clips,” says Precourt, who, like his TV partner, is a student at Florida Atlantic University in Boca Raton. Precourt is a film major; Canzonetta is pre-med with a minor in film studies.

Also like Canzonetta, Precourt has Asperger’s Syndrome, a form of autism associated with focused interests, high-functioning abilities and difficulties with social skills.

Their program is one of dozens streamed weekly from Flying Pig Ranch Studios on Haverhill Road in West Palm Beach, home to The Autism Channel (TAC).

Although TAC’s shows are aimed at families with members on the autism spectrum, the channel may be the only network that regularly puts people with autism in front of the camera.

“We look at it like when Diahann Carroll starred in “Julia” in the 1970’s,” said Jerry Trowbridge, a co-creator of the network. “She was the first black actor to star in a major TV show. We want to have a similar impact.”

Viewing the on-demand video streaming channel requires a $49 to $100 Roku box, although TAC may soon have a new platform on Panasonic smart TVs, Blu-ray players and gaming consoles.

Actors playing people with Asperger’s have become a recent TV trend. Diane Kruger in FX’s “The Bridge,” “Parenthood’s” Max Braverman as well as Sheldon Cooper on “The Big Bang Theory” and “Community’s” Abed Nadir are all characters with either stated or assumed autistic personalities.

But on TAC, no one’s acting.

…He believes, as do a number of autism activists, that the autistic brain may be the vanguard of a higher form of human evolution. The autistic personality of intensity, focused interests and little need for emotional attachment is tailor-made for a digital age where people work with devices rather than each other, [Precourt] says…

Daniel Heinlein, the host of the talk show “I Am Autistic,” is a 26-year-old from the Chicago area with Asperger’s. “Rocket Family Chronicles” follows the exploits of a wacky San Francisco family whose most well-adjusted member is an autistic teenager.

A couple of cooking and exercise shows have stars or co-stars with autism. A reality program called “At Home With …” profiles families coping with autistic children. In addition, a weekly news show covers the latest news about autism.

TAC’s highest rated show is “Time Out,” seven minutes of soothing music and images designed to calm an agitated autistic brain.

Trowbridge and his partner, Ray Smithers, are radio news veterans and serial entrepreneurs. In the 1980s, they developed a 1-800 telephone system to help customers locate the nearest Walgreens or Cirrus network ATM.

The idea for TAC was born after the men heard a TED talk by Temple Grandin, the Colorado animal science professor and autism activist, who described her thinking process.

“Hearing her, both Ray and I realized we’re probably on the spectrum, too,” said Trowbridge, who speaks in rapid-fire bursts. The men, who are business and life partners, sleep during the day and work all night. Trowbridge taught himself the complex programming necessary to stream TAC. Smithers concentrates on programming and production.

They sunk “six figures” of their own money into their startup, their gamble bolstered by a near doubling of autism diagnoses among children in the past decade, to one in 88 in 2008, according to the Centers for Disease Control and Prevention.

From the start, they decided to put people on the spectrum on their shows.

“We had no idea how right we were. We’ve learned that viewership for those shows is off the hook,” said Trowbridge.

Autism programming, believes Trowbridge, is ready to go from obscurity to mainstream.

“It’s a little niche-y,” he said, “but then, so is ‘Duck Dynasty’.”

Once on the Panasonic platform, which he hopes will happen by the end of the year, he expects 50,000 to 100,000 viewers a day.

“That makes us attractive to advertisers, ” he said.
The rise of TAC coincides with a radicalized autism rights movement that borrows the language of liberation politics to insist that autism is a variation in function, not a mental disorder needing to be cured. Instead they say, society needs to be cured of its stereotypes about autism.

“Auties” and “aspies,” as they call themselves, think in neurodiverse ways, they insist, while the non-autistic are neurotypical.

“Nothing about us without us,” says members of autism advocacy groups such as the Autistic Self Advocacy Network and Autism Network International, which demand the right for autistics to define themselves.

“This is the new face of autism,” said Dr. Jack Scott, a professor of exceptional student education at FAU and the director of the school’s Center for Autism and Related Disabilities. Scott is also on TAC’s advisory board. “It’s similar to the deaf community of a few decades ago. Many members of that community were fine with being deaf and didn’t want to be labeled disabled.”

“It’s groundbreaking in (autistic’s) insistence on validation and that they have something important to say. They can speak for themselves, even if they have to type it,” Scott said.

FAU has “40 to 50” students on the autism spectrum, Scott said, many of whom excel because of their ability to focus.

Still, autistic kids require high-quality early childhood intervention, Scott said.

Movie critic Precourt said he began therapy soon after he was diagnosed at age 3. Sitting in an FAU courtyard outside a campus Starbucks on a sunny afternoon, Precourt speaks loudly in pronouncements, rather than the give-and-take of conversation.

At his mother’s suggestion, the Orlando native stopped by the TAC studios last summer to discuss doing movie reviews and walked out with his own show.

“We screen-tested him and he jumped off the screen,” said Smithers.

A member of FAU’s community council and the publicity committee for his dorm, which presents dances and barbecues, Precourt says he’s learned the importance of social interaction even though he sometimes misses others’ emotional cues.

He believes, as do a number of autism activists, that the autistic brain may be the vanguard of a higher form of human evolution. The autistic personality of intensity, focused interests and little need for emotional attachment is tailor-made for a digital age where people work with devices rather than each other, he says.

“People act like we have a disability,” he said. “Autism is not the same as being disabled.”

When it comes to being one of the faces of TAC, Precourt says, “We are at the dawn of a new era. I’m proud to be a part of that.”

As for Trowbridge, he tries to dodge the brickbats flying back and forth between various autism groups fighting over causes and cures.

“So many organizations have a dog in this fight about what autism is. We see a need for an impartial disseminator of autism news. We’d like to be present when we finally understand what autism is. I believe that will happen in the next few years.”

This story is a part of The Palm Beach Post‘s premium content, and is available to subscribers only.

The Big News That We Already Knew

It came as a shock to most people who watched the nightly news on a major network last night: new CDC-phone-survey figures show that one in 50 school-aged children now has an autism diagnosis.

To our audience who live with autism on a daily basis either as a parent, as one of the millions of caregivers worldwide or as someone on the spectrum themselves, it was just an acknowledgement of something they already know. To many, it also was fuel to reignite one of the many major core debates this community argues every day.

How much of the new figure is mere acknowledgement of previous unrecognized spectrum disorder; how much is the result of a new causative factor that appears to be balloning? What is that factor, and what’s being done to identify it? Everyone with an agenda went to the methodology page of the report and teased out the numbers that support their beliefs, and that only served to support our beliefs at The Autism Channel that there’s a missing piece in the autism media.

ABC News, like NBC and CBS, reported the story on its evening news, only as part of a general autism piece that included the new “grandfather” study. For the prevalence part of the story, ABC went to the CDC and asked them about regional differences, and then reported that they were told that autism is equally prevalent in all countries, only the methodology makes the United States and South Korea look particularly vulnerable. Apparently ABC didn’t know to ask about the Somalis in Sweden and Minnesota. If they had they might have gotten a more responsible answer: “We just don’t know.”

That is why we think the missing piece in autism media is a video news program where major stories like the ones reported this Wednesday evening can be given the time and attention that people in the community would like to see them receive. Our audience wants specific details that wouldn’t keep the attention of typical nightly news viewers. They know the players in the autism community and want reaction that would make little sense to people outside it. We want to provide that kind of coverage, and soon we will, when we launch The Autism Channel World News.

From the first day we conceived the Autism Channel, we knew a daily news program needed to be a major part of the program offering. It was just more difficult than we imagined to find the right host, and to develop the sources to provide the material to support it. We’ve now done that, and we only wish that we were in production now to cover those major stories. We know, of course that there will be tens of thousands more.

Our news anchor is Debra Clark. She’s the mother of two teenage boys with Asperger’s, was named Millennium Woman of the year in 2001, is seen on Southern California’s Fox 11 News as an advocate for adopting rescue dogs. She’s also on the spectrum; recently diagnosed with Asperger’s herself.Autism World News with Debra Clark

She will preside over a news organization committed to delivering current, complete coverage of autism and the autism community, free of the bias that comes with the need to support an agenda. We will not be afraid of saying “We don’t know.” Because our channel has taken no position on causation, treatment options or political action, we are free to report the news no matter whose ox it may gore.

We think that has been missing in this community for a long time, and we hope it can be one of the most important things our channel can add to the many voices in the autism community.