One of the many things I wish I could get more people to care about is the question of how lighting affects people with autism. My friend Jacob passed along this report from CBS News that I think might help people understand why.
Please watch the video above and consider the following points:
1. Many autistic people are profoundly affected by light. We often hear buzzing that others do not hear and may be more sensitive to issues regarding color and intensity than others. I think this may be a very big deal.
Recent research indicates that the number of people who have autism is pretty consistent: about 1%. But it's hard to deny that there has been an increase in the number of cases of very disabling autism:
Eden II Executive Director Dr. Joanne Gerenser, who has worked with the autism community for 30 years, said part of the increase is clearly explained by the widening spectrum. Asperger syndrome -- which typically involves social challenges but does not affect language or intellectual capabilities -- was added to the spectrum in 1994, bringing in an entire group of people previously not counted.
"The second variable that's clear, is that services appear to be more readily available with an autism diagnosis," Dr. Gerenser said. "I think that some people may be getting a diagnosis for autism for that reason, if their kids were on the fence of being diagnosed with something else."
But the increase also feels genuine, Dr. Gerenser said. The enrollment at Eden II has grown from 15 to 20 children at the start to 150 school-aged children now. "And the list of people waiting for services continues to grow," she said.
That growth, she said, can't be explained by the widening spectrum.
"Eden II serves those kids who are most significantly autistic," she said. "This can't be explained by that expansion into Asperger's, because those kids wouldn't be referred to me."
One of the most dramatic ways that our world has changed as autism rates have soared is that artificial light and noise have become increasingly ubiquitous. Fewer and fewer people live in a world where nights are truly dark and quiet anymore. Fewer and fewer children are raised under natural light, or even under the softer, less aggressively artificial light of incandescent bulbs. When a study indicated that children born to parents who live near freeways are twice as likely to have autism, I don't think anyone even considered the potential of light and sound pollution being the reason.
This matters very much because we do not emphasize enough research into how light and sound affect autistic people, and what sort of sensory environments might best help us to thrive. This research begins in our own homes. I do best with as much natural light as possible. I do most tasks more efficiently either silently or accompanied by music of my own choosing. I avoid loud, aggressive sounds (sports broadcasts are the worst) as much as possible. I avoid LED and fluorescent lights as much as possible. These things make me, more than anything else, much less aggressive and more able to concentrate. I think similar things might be true for many people.
2. Congress has defunded the legislation requiring the change in standards for incandescent light bulbs. However, this will not stop the bulbs disappearing from store shelves:
Joseph Higbee, a spokesman for the National Electrical Manufacturers Association, which represents 95 percent of U.S. light bulb manufacturers, said even if the Department of Energy does not have the funding to enforce the energy efficiency standards, manufacturers are not going to retro-fit their assembly lines to produce the traditional, less-efficient bulbs.
3. If you donate to organizations like Autism Speaks or the Autism Science Foundation that fund autism research, please encourage them to make this issue a priority. There is no reason why the needs of autistic people should not be considered as companies like Phillips research new products. Would a partnership in which Autism Speaks helped pay for researchers that would work with individual companies on making sure that new bulbs met the needs of autistic people pay off?
Dear Dale Bryk,
Thanks for your comment made today responding to an entry made over a month ago about your appearance on The Colbert Report. However, I wish you had read the comment you were responding to and made any effort to deal seriously with my concerns.
This is what you wrote:
Please learn more about this issue before taking action. YOU WILL STILL BE ABLE TO BUY INCANDESCANT BULBS! The legislation in question simply requires light bulbs to be more energy efficient. Manufacturers supported these rules because they knew they could make better light bulbs, and they have already done that. Incandescent bulbs that use 25% less energy but provide exactly the same light that you currently enjoy with the old ones are already available in stores. They are more widely available in CA where the standards are already in effect, but they are beginning to show up on shelves everywhere. LEDs are another great choice and they are substantially more efficient than CFLs. But the main point is, you will not be required to use CFLs if you don't like them! This one provision will save our country $10 billion every year on our national energy bill and reduce tons of pollution from power plants. Michelle Bachmann is not right!!
You accuse me of claiming that incandescent ( a word you should really learn how spell) bulbs will be banned, but of course that is not what I wrote. I wrote that current incandescent bulbs will be banned-- and that's a fact. You also do not address any of the actual concerns that I did bring up. Here they are again, in numbered form, in case you have interest in dealing with them.
1. Lighting that meets the needs of people with autism is not currently universally available-- please send me any research you have available that indicates that the choices you list have been tested with people who have sensory problems with light
2. I am worried that lighting that meets my needs will be prohibitively expensive. Please send me any information you have that indicates that lighting that meets my sensory needs will be reasonably priced or that you or your organization have recommended any steps to lessen the financial impact on people hurt by your new lights.
3. I am worried about the impact on myself and others with sensory problems caused by lighting in public spaces. Please send me any information you have indicating that the concerns of people with sensory issues are being given any attention as public buildings change to the new standards.
When I called your organization the day after your appearance, the person I spoke to thought I must be referring to mercury in CFLs when I called to voice the concern that the NRDC was ignoring the impact of this legislation on people with autism who are caused physical pain by fluorescent lighting. I was laughed at and hung up on when I became flustered, and was later emailed some information that did not address my concerns at all. When I responded to that email with a request for information explaining how this legislation would not harm people who are hurt by harsh light, I got no response.
Ms. Bryk, I would like to believe that you are not the sort of person who goes on TV and encourages people to laugh at the concerns of the disabled without finding out anything about them first. I'd like to believe that at some point someone in your organization showed people like me anything like basic respect. So, please-- send me the research you are relying on that indicates autistic people who are sensitive to light will not be hurt by this legislation. Send me the names and contact information for the autistic people you discussed this issue with before deciding it was a joke.
|The Colbert Report||Mon - Thurs 11:30pm / 10:30c|
|Light Bulb Ban|
Dear Mr. Colbert,
Because I've followed your career for many years, I know that you have a genuine concern for people with autism. You've shown this both by helping to raise money, as through your participation in Night of Too Many Stars, and by helping people to understand autism by hosting guests like Dr. Paul Offitt. That's why I was disappointed to see your segment last night ridiculing the concerns of people who are caused pain and irritation by fluorescent light bulbs.
Your guest last night talked about how superior new CFLS are to older ones. That may be true for neurotypical people, but people with autism report that they continue to be irritating. The cycles at which CFLs operate cause flickering which most people do not see, but can cause people with autism to feel anything from mild distraction to painful headaches. Although newly wired buildings with brand new fixtures are less likely to have this problem, in reality, most fluorescent lights still buzz in a way that can be almost as irritating.
Living with autism means living in a world which feels hostile to me in many ways. I cannot help being as bothered by sensory issues as I am. The lights in many places hurt me. After January 2012, I am afraid that lights that do not hurt me will be harder to get, more expensive, and less powerful. I worry about the effect it will have on the price of lighting my home. I worry that I will not be able to visit any of my friends for extended periods unless they promise to keep all of their lights off-- another way that I get to ruin the party. And I worry that there will be no public spaces that are not uncomfortable for me to be in. Shopping is already traumatic for me because of the light and the noise. It's going to be worse.
I cannot blithely assume that new products are going to magically appear to meet my needs, as your guest suggested. Those of us with autism are only 1% of the population, and many of us have a great deal of trouble speaking up for what we need. We already have to buy special versions of so many things-- even underwear that doesn't hurt is expensive! We need products that aren't on the market because we are such a small niche.
And we are, in case you didn't notice, still in a recession. Schools and government buildings do not have the money to upgrade entire lighting systems for the sake of 1% of the population. Businesses are going to go for the cheapest options rather than the most autism-friendly ones, and many more of us are going to be forced to work in places that cause us pain.
And maybe the savings in money and the benefits to the environment are so worthwhile to you that it's worth causing 1% of the population a lot more pain and irritation. But that cost should be included in the discussion, and it shouldn't be ridiculed. Please consider doing a segment on the legitimate concerns of people who are bothered by CFLs. I know we aren't as entertaining as vanity and Easy Bake Ovens, but we matter at least as much.
I can't believe I'm saying this, but Michelle Bachmann is right. Please contact your Representative in the House and ask him or her to support her "Light Bulb Freedom of Choice Act," which will repeal legislation prohibiting the sale of current incandescent light bulbs. No one seems to be discussing the impact of this legislation on people with autism, and I am very worried about it. If you are bothered by fluorescent lights, this is really a last chance to let people know about our concerns before it's too late.