Tuesday, July 24, 2012

A Few Musicians I've Photographed

I started working in music at age 16, when I dropped out of high school and joined a band.

I spent the 1970s building sound equipment, special effects, and custom instruments for musicians.  In the 80s I left the music business to focus on more commercial engineering work.  In the 1990s my brother worked in advertising, and one of his accounts was Nikon.  He got a few cameras out of them, and sent one to me.

That started me on a new interest - photography.  It took me a few years to acquire the skills of the photographer's trade.  By 2000, I had developed my own style, which you can see below.

My brother quit advertising when his book Running With Scissors came out. I was working on cars then, looking for something creative to do . . . 

One of the first places I turned when I went looking for subjects to photograph was the world of music.  Here are a few samples of that work.  

I've remained interested in photography to this day.   I photograph performers of all sorts, in all sorts of places.

You can see more of my images on my public Facebook page
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Rick Springfield, with a background of fog



Picking up flowers after the concert.   It's amazing, how many people threw flowers on the stage during the concert


Guitar with the great George Jones





Def Leppard captured in fall, 2000




Clint Black on the outdoor stage



John Sebastian of the Lovin Spoonful plays Do You Believe In Magic?


Cowboy of the Village People turns fifty




Frankie and the Teenagers are still on the road, fifty some years after Why Do Fools Fall In Love?



The view from the monitor console



The Symphony's First Bassist looks out at the audience



Nashville



Boulder, Rocky Mountain High



Del McCoury and his bluegrass pickers.  I took these photos with a Canon G9 pocket camera, just to see if it could be done




Journey










This is Barry Gaudreau of Boston, up close


Jimmy Hopper in fog



Thoughts from the latest autism treatment grant review




I’ve just come from this summer’s Autism Speaks treatment grant review, and I’d like to share some thoughts about our most recent work.  I’m very pleased at the direction we are headed.  Changes were evident the moment I entered the meeting room.  We had fresh faces representing new branches of science and engineering, and a real sense that we need to take action and translate recent years work into tangible benefit for the autistic population.

To understand what went on, I should begin with a little background on the review is conducted.  Most large foundations and the Federal government use a similar process; here’s how it works.

The funding organization first sends out a request for proposals.  In that, they spell out what they are looking for.  In this instance, Autism Speaks was looking for innovative proposals that led to new ways of treating or remediating some aspect of autistic disability. 

Researchers from all over submitted applications.  Over 100 came in.  Of that number, roughly 70 were deemed suitable for serious consideration.  Those proposals were handed out to reviewers who had expertise in those areas of work.  Our reviewers are drawn from academia and medicine.; some serve as members of the permanent review board while others join for one session only.

The proposals were each examined by three reviewers, who assigned scores from 1 (wonderful) to 5 (poor).  Each science reviewer was assigned 6-10 applications; a fairly heavy workload given the volunteer nature of this work.

The scores were ranked, and the administrators selected the top thirty-some proposals for more detailed discussion based on those initial scores.  Those were the applications we reviewed this week in San Francisco.

The applications were discussed in a somewhat randomized order, one at a time.  For each one, the first assigned reviewer began by stating his score and describing the proposed work.  The second and third reviewers added their comments and scores, after which the proposal was up for discussion.  Any of us could ask questions, or express our opinions as to why the proposed work should or should not be supported, or how the proposal might be modified or improved.

We can only fund a fraction of the applications received, and we do our best to give constructive feedback when we turn a proposal down.  Maybe we think the goals are too ambitious, or some part of the methodology is not well enough thought through.  Perhaps we think a collaborator with different skills (software design, for instance) might be needed.  Whatever out thoughts, they go back to the applicants with the suggestion that they keep refining and reapply.

When the discussion ends (usually after 15 minutes or so) we all vote on the proposal and our votes are averaged to get the final score.  In that system, a passionate critic or supporter (like me) has the ability to move everyone’s scores up or down based on their comments.  That means any one of us can exercise greater power than one might expect given the size of the board.

I was very happy to see how the makeup of the review group has changed over the past few years.  Past boards were dominated by geneticists and medical people.  This board had computer science experts, robotics experts, and experts from speech pathology, psychology, and psychiatry.  That’s great to see because those are the disciplines that will deliver much of the practical help we need.  Since autism affects us in many and varied ways there was a lot of variety in the proposals we discussed this week.

There were only a few proposals involving medication, something I found interesting.  As more than one scientist pointed out, we have yet to find a drug treatment for any of the core symptoms of autism.  We treat the conditions that go with it – anxiety and depression for example – but the core problems remain untouched.  Yet medicine still holds promise, especially in light of emerging knowledge in genetics and biology.

Last year I wrote about some exciting work at Cold Spring Labs, where scientists found a connection between a genetic error and sensory sensitivity, and followed up that discovery with the identification of a possible drug treatment.  That work was not part of this week’s discussion but it’s an example of how we will eventually have drugs to remediate some aspects of autistic disability.

The idea of these potential drug therapies is simple to describe, but extremely hard to implement.  Geneticists find a coding error that’s linked to autism.  That error causes more or less of some chemical to be made in our brains, which in turn changes the way they develop in a maladaptive way.  With that knowledge, chemists develop drugs that (hopefully) address the chemical imbalance and facilitate more normal brain development or function.

That work holds significant promise for the most crippling aspects of autism.  But what’s being done for people at the other end of the spectrum; those who are not so obviously disabled but who still face substantial challenges with executive function and social skill?  That question was a major focus of this week’s meeting.

Quite a few proposals were directed at the development of better organization, stronger social skills, and other problems that challenge people like me every day.  We’re looking at how sleep dysfunction adds to disability, and what to do about eating problems.  We’re looking at practical adult issues with new therapies to help us succeed in school and employment.

There has been a great outcry for this type of work from the autism community and I’m delighted to see researchers are responding and the funding agencies are coming through with support.  It will be a few years before you begin reading results in the journals but this is the first step.

I was also very happy to see that a large percentage of the proposed work would benefit autistic adults, as opposed to children.  Indeed, the percentage of proposals that addressed teen and adult issues was the highest I’ve seen yet.

Many if not most of the therapies we discussed were directed at the more verbal end of the autism spectrum. The challenge there is that people often lack understanding of why they should say or do a particular thing, and teaching a rote response (the behavioral method, exemplified by ABA) comes across as mechanical and fake.  It’s far harder to teach this deeper understanding (which some NT people have instinctively) but this newest work proposes to do just that, in several areas.

The therapies we discussed were based entirely on talking.  Personally, I’d like to see the power of talk therapy augmented by new medication or tools like TMS but we are not quite at that stage in the research.  I can’t wait till we are.

The whole idea of this kind of therapy is to help those of us on the spectrum make our best possible lives.  That goal is in line with the reality of life for many if not most of us on the spectrum.  We don’t seek “cures” or fundamental change but we need tools to help us succeed at the levels we know we can.

At the end of our meeting we talked about another pressing issue: the need for a tool to evaluate changes in quality of life for people on the spectrum.  To my surprise, no good measure exists today.  If we want insurance to cover the new therapies we are funding, we’ll need to show that they really help.  Development of QOL measurement tools will be vital to this effort. 

That brings us to the next step in this process: delivering the fruits of research to the population who wants help.  Right now, two things hold us back – lack of insurance coverage and clinician training.

Recent research initiatives have already produced promising therapies like PEERS and Unstuck but they are not available to many people because health insurance plans won’t cover them.  A good QOL measure for new therapies would make a powerful argument for insurance coverage.  Ultimately, though, resolution of that problem lies in the realm of insurance legislation and not science.   Until we solve that social problem the best of what researchers develop will remain out of reach for most families.

The other issue – clinician training – is one we must solve with additional funding.  When a new therapy is developed the researchers need to train a staff that will in turn train clinicians.  That training work must be supported by yet another grant, and those funds are very tight.  Right now many promising interventions remain relatively unknown for that reason. 

Look for a press release in the next few months describing the final choices for funding.  When you read about the newest research remember this is how it was shaped and chosen.  

Sunday, July 22, 2012

The KISS guitars, now and then, in words and pictures

Many of you have read about my time on the road with KISS and other bands.  I've done a number of interviews, and of course there are the chapters in Look Me in the Eye and Be Different.

I realized there is no archive of photos to go with the stories and I've decided to set that straight.

Here they are, in no particular order.  Perhaps I'll come back one day and rearrange them . . .

This is me, circa 1979:




















And here I am today:




















Kinda different, huh?

This is Ace Frehley, playing our original light guitar on stage with KISS




















That guitar was a modified Gibson Les Paul TV.  We routed out the face of it, and embedded a circuit board with almost 1,000 incandescent lights.  We set it up to do stripes (you can sort of see that in the photo) and them flash the whole border at the end.

The lights were powered by a Ni-Cad battery pack and the music was transmitted via a Shaeffer Vega wireless rig so the whole thing was cable free.   There was a special XLR-type plug in back to connect a battery charger between sets.

Ace played this guitar on a number of songs over the years but the one it's most famous for is New York Groove.  He'd start the guitar while facing back in the corner of the stage.  The audience could see something flashing but could not tell what.  He'd walk out backward, turn round, and they would just go wild.

I describe that scene in the opening passage of my book BE DIFFERENT.  I was in my early 20s when we made these guitars.  I am a self-educated audio and electrical engineer.  I met the guys from KISS in New York, while I was working as the American engineer for Pink Floyd's sound company, Brittania Row Audio.

We built all KISS's custom guitars in Massachusetts but I had to go on the road to fine tune their development.  I was on the road for all the KISS tours of 78-82 and then the shows with Ace as Frehley's Comet after that.  Here I am working on another of the light guitars, on the road in some hotel:















If you look close you'll see we added a layer of baltic birch plywood to the back of that guitar to thicken it.  That was to allow even more lights (for big halls) and microprocessor control.  Here I am in the Russell Hotel, New York, when that guitar was new.
















Here I am, in my back yard, with the same guitar a few years later when it came back for service






















I designed all the special effects guitars KISS played in those years.  I also created a fair bit of the electronics they played through.  That included the light guitars below, the smoking guitars, the rocket guitars and the laser guitar for 1979, among many.

Long Island luthier Steve Carr did the fretwork and tuning to make our creations play.  He also did the metallic body finishes and the custom inlays.

I designed the electronics.  My then-girlfriend, later-wife, and current ex-wife Mary Robison did the assembly. My friend Jim Boughton did the mechanical engineering and fabrication.  

Today Mary and I have a son, Jack.  We're not married anymore (I'm remarried) but we remain close.  Here they are at our house with one of their projects and Oigy, the Imperial War Pug.
















Here I am this spring, with master luthier Jim Cara, who has followed in the custom guitar tradition.  Check out his story here.






















Finally, here's my son with the original light guitar this spring.  Ace has sent is back to us for refurbishing.





















People still ask if we can make more of these instruments.  Actually, we can.  Check out my son's web site here, with a video of me and a brand-new light guitar using today's LED technology

Robison Industries

If you'd like to read more, start at page 112 of my book Look Me in the Eye

Then you can continue with the intro to Be Different

In a few more months, you'll be able to read about my son and the light guitars today in RAISING CUBBY.


I'll stop back soon with more pictures from my time in music.

Woof














Monday, July 16, 2012

RAISING CUBBY is coming

It was one of those father-son afternoons we remember . . . 


We stood at the fish pier, watching feral children haul misshapen sea creatures out of the water as they chattered furtively. A grizzled old man stood beside us. "I had a kid once, too," the old man said. "But it didn't last. Kid misbehaved and mouthed off so much I got fed up. Sold him to a Sumatran reptile trader, and never looked back."

"You better not sell me," Cubby said. And I didn't. The result:

RAISING CUBBY, my newest book. Coming January 15. Freaks and zombies included.

http://www.amazon.com/Raising-Cubby-Adventures-Aspergers-Explosives/dp/0307884848

Wednesday, July 11, 2012

Autism therapies and insurance - IACC discussions


One of the most shocking (to me, at least) presentations at yesterday’s IACC detailed the status of insurance coverage for autism behavioral therapies around the country.  Peter Bell of Autism Speaks presented a number of charts that showed a mix of hopeful and disturbing news.

On the hopeful front, he showed a chart of states that have passed legislation making autism therapy a medical treatment, as opposed to mental health counseling, which gives better coverage through private insurance plans.

Yet at the same time he highlighted the extreme differences between individual insurers within some states.  Even now, one family on a street can have a kid receiving 40 hours a week of therapy where a family two doors down has a kid who gets next to nothing, do to different employer insurance policies.

That is a disparity we should continue working to eliminate.  As he said, we’ve come a long way.  Five years ago, almost everyone was in the same boat, with no coverage.  Now quite a few people have some coverage, but “quite a few” and “some” are not words a progressive society should be using when it comes to autism interventions that are life changing.

Unfortunately, there was more. Peter went on to cite a few states whose programs have denied behavioral therapies on the grounds that they are “experimental” or “not proven to work.”   I thought we were past that kind of shabby behavior.  I guess not.  I immediately opened a dialogue to discuss how that could happen.

When a new drug is developed, the Federal government (via the FDA) reviews test results and approves it to treat certain conditions.  We’ve all heard how vital FDA approval is to the success of drugs.  That’s because the FDA stamp of approval means the drug will be accepted as a legitimate treatment for the conditions it’s approved for anywhere in the US.  An insurer cannot decline it as experimental unless it’s prescribed for something outside the range of its FDA approval.

I was shocked to hear that there is no analogous mechanism for approving behavioral therapies in this country.  As NIMH Director Tom Insel explained, in the absence of a government approval system insurers look to the professional organizations themselves.  What do they find?  There is a good national program (BCBA certification) to train and certify ABA practitioners.  The result – ABA is the most (indeed, the only) broadly approved behavioral intervention for autism.

Why?  Because it’s the only one with uniform delivery standards nationwide.  I know – many of you will tell me the quality of ABA varies widely and I agree – but the BCBA training standard is indeed uniform and it’s the all we have.

However, as someone who is working to get new therapies developed and deployed, that state of affairs is totally unacceptable.   

I’ve written about new therapies on this blog, and indeed many show great promise.  Their effectiveness has been shown in many studies, yet they are not widely available, and rarely covered by insurance.  Why?  Because there is no way for an insurer to know that the intervention being delivered in North Dakota is the one designed and vetted at UCLA (for example).

University research centers develop these therapies and even do training to propagate them in the field.  Important as those efforts are, they cannot roll out a new intervention on a national scale to augment ABA.  It’s just not realistic for any single group to undertake that except over a period of decades, which we do not have.

So what do we do about this?

I think we need Federal action that mandates insurance coverage for a much wider array of behavioral intervention.  Valuable as ABA is, is it not a path that works for every kid, and frankly, it is “old news.”   We need to get our insurers covering the deployment of new therapies that will help a broader range of kids.

Dr. Insel and I talked about that after the meeting.  He shared my concerns, and suggested this is a problem we could address but it would require legislation that would be resisted vigorously by the insurance industry.  He told me there are groups working on this very question is other fields, like depression.  His comment made me wonder if we need to band together to solve this as one lobbying group.

The fact is, many behavioral interventions have been developed and proven to work for depression, autism, and other conditions, but they are seldom covered by insurance because they are not classified as medical treatments and they lack any equivalent of FDA approval.

I want to thank Peter Bell, his group, and everyone else who has worked so hard to get the insurance coverage we have today.  And I want to thank him for opening our eyes to the true nature of the next obstacle we must surmount – the development of a mechanism by which new autism therapies can be delivered and covered by insurance.  Without that, all the intervention in the world will be worthless to most people, because they will have no way to pay for it it.

And that is wrong.

Note:
John Elder Robison is a member of the IACC, but the opinions expressed here are strictly his own.

Tuesday, July 10, 2012

The IACC is meeting today in Washington

I'm here in Washington for the first meeting of the reconstituted IACC - the interagency autism coordinating committee of the Secretary of Health and Human Services. Over the past two weeks I've put up several invitations on Facebook and Twitter, and it's looking like this will be a crowded event.

I've read through 100+ pages of comments people mailed in, and we'll hear more in person today.

It probably comes as no surprise to hear that many if not most comments are strong criticisms of our current policies regarding autism. The critiques that urge us to do more are the ones that trouble me the most. For the most part, I agree. We should be doing more. We should have better supports for autistic adults. We should have more aggressive early detection and intervention. We should educate society and make it more accommodating.

Unfortunately, we in the iacc cannot make those things happen. We can recommend more supports - and we do. But in the end, it is your (and my) elected officials who must vote the budgets and directives to make these things happen.

You might say iacc provides the plan, and they implement it. Much has happened already but even more remains to be done. I sure wish there was a way to make it happen faster.

Anyway I am off to the meeting now, and I hope to see a few of you in person today.

Be assured that I am keenly aware of the burden autistic disability places on those of us who live with it daily, at all levels. Development of tools treatments and therapies to remediate disability is a top priority for me. At the same time, I celebrate the remarkable gifts we bring to the world, and making that world a more accommodating and caption place for us is no less vital.

I hope we take a few more steps in that direction today.

Woof.