Because I studied both Autism Speaks and the Autism Society of America, I was able to get a good perspective on both organizations.
Autism Speaks does a phenomenal job of fundraising. They are the more famous of the two organizations, and the one that celebrities like to attach themselves to. However, Autism Speaks truly fails as a community-based organization. No where on the website was I able to find links that allow parents to talk to other parents. Additionally, though I e-mailed multiple people on the board, I never got a response. Ever. Not after 2 months. Had I been a scared parent whose child was recently diagnosed, I would have been very frustrated. So while fundraising is a huge, important part of social change groups, so is community, especially when the group involves people related to a disease.
The Autism Society of America is successful in their ability to engage parents. They are the older of the two, and they are where you should go when your kid is diagnosed and you are scared. They are great at communicating, and all their board members are parents of children with autism. They are revamping their business model right now to imitate a more corporate model. Hopefully this will allow them to fundraise more effectively.
Thursday, May 13, 2010
Once again, it's not just the kids
When perusing the Autism Society of America I clicked on the link 'Support the Autism Society' link. The link led to a gift-shop page full of toys for children. But as the website states, their mission is ' improving the lives of all effected.' We need to stop focusing solely on kids and help the adults that autism as well.
After interviewing Ann Hart, president of the Autism Society of America and mother of a 24-year-old with severe autism, I realize that adults really need just as much help. Adults need occupation therapy, job placement, and other services that could help them function.
Children are a huge part of the autism problem, because parents are the ones who are active in legislation, fundraising, and activism, but these children are going to grow up eventually and we need to focus just as much attention on adults.
After interviewing Ann Hart, president of the Autism Society of America and mother of a 24-year-old with severe autism, I realize that adults really need just as much help. Adults need occupation therapy, job placement, and other services that could help them function.
Children are a huge part of the autism problem, because parents are the ones who are active in legislation, fundraising, and activism, but these children are going to grow up eventually and we need to focus just as much attention on adults.
Sunday, April 25, 2010
Sensory-Friendly movies
On the Autism Society of America website's frontpage, there is a link to a TIME article about sensory-friendly film screenings for children with autism and other disorders that makes going to regular movies stressful.
In these special screenings, the lights are lowered but not completely turned off, the sound is lowered, and the theater allows people to bring snacks from home. Additionally, theater staff do not kick people out for talking or yelling during the film.
These sensory-friendly movies could be great, both for children with neurological disorders that makes going to movies difficult, and to bring about greater awareness to autism. Now, captioned films for deaf people are pretty typical for theaters, and if sensory-friendly films become typical as well, perhaps the stigma of autism will be lessened. If everyone sees from multiple signs that 10:00am is the showing for sensory-friendly films, then maybe they will be more aware of how widespread autism is.
In these special screenings, the lights are lowered but not completely turned off, the sound is lowered, and the theater allows people to bring snacks from home. Additionally, theater staff do not kick people out for talking or yelling during the film.
These sensory-friendly movies could be great, both for children with neurological disorders that makes going to movies difficult, and to bring about greater awareness to autism. Now, captioned films for deaf people are pretty typical for theaters, and if sensory-friendly films become typical as well, perhaps the stigma of autism will be lessened. If everyone sees from multiple signs that 10:00am is the showing for sensory-friendly films, then maybe they will be more aware of how widespread autism is.
Wednesday, April 21, 2010
New Legislation
Recently, the Autism Society of America has come out in support of a bill that would attempt to regulate chemical substances. The hope is that by reducing chemicals in the environment such as mercury and lead, there will be less cases of autism.
Although it is hard to argue against keeping a closer watch on dangerous chemicals, there is no real proof that autism is caused by environmental factors. Chemicals like lead and mercury are dangerous, even without the risk of autism. However, there is no study that proves that autism is a direct cause of these chemicals. In fact, in the article that the Autism Society of America put on their website, they mention that "scientists suspect" that these might be triggers. They don't know for sure, and so it is hard to understand why the Autism Society of America would throw themselves into support of a bill that may or may not even be related to the disorder.
Although it is hard to argue against keeping a closer watch on dangerous chemicals, there is no real proof that autism is caused by environmental factors. Chemicals like lead and mercury are dangerous, even without the risk of autism. However, there is no study that proves that autism is a direct cause of these chemicals. In fact, in the article that the Autism Society of America put on their website, they mention that "scientists suspect" that these might be triggers. They don't know for sure, and so it is hard to understand why the Autism Society of America would throw themselves into support of a bill that may or may not even be related to the disorder.
Wednesday, April 7, 2010
I'm a Family Member, I'm on the spectrum, I'm a professional
When checking the Autism Society of America website this morning, it was impossible to miss the giant box on the front page with three people featured, a family member, someone on the spectrum, and a professional.
Clicking on their pictures leads to a personal statement from each person. The statements are compelling, especially the one from the family member. And while the statement from the man on the spectrum isn't directly about autism, it provides a great insight into the communication skills of this individual with autism. The title on top of the page reads 'Imagine the Possibilities.'
This tactic, of providing personal experiences from people directly and indirectly effected by the autism disorder is a great tool for the organization. There is no sense of 'pitying' in section and it is in general a very uplifting section of the website. The fact that it is real people and not some distant researcher or social organizer makes their stories much more compelling. Parents are able to see what people with autism are capable of, relate to other parents of children with autism, and gain insight on the life of a professional autism therapist.
Although this section of the website is relatively small, it is attention grabbing and very effective. Personally, reading those stories makes me want to know more about the disorder and the organization, which is a goal any social change group should have in regards to website content.
Clicking on their pictures leads to a personal statement from each person. The statements are compelling, especially the one from the family member. And while the statement from the man on the spectrum isn't directly about autism, it provides a great insight into the communication skills of this individual with autism. The title on top of the page reads 'Imagine the Possibilities.'
This tactic, of providing personal experiences from people directly and indirectly effected by the autism disorder is a great tool for the organization. There is no sense of 'pitying' in section and it is in general a very uplifting section of the website. The fact that it is real people and not some distant researcher or social organizer makes their stories much more compelling. Parents are able to see what people with autism are capable of, relate to other parents of children with autism, and gain insight on the life of a professional autism therapist.
Although this section of the website is relatively small, it is attention grabbing and very effective. Personally, reading those stories makes me want to know more about the disorder and the organization, which is a goal any social change group should have in regards to website content.
Wednesday, March 31, 2010
Autism Speaks and the Autism Society of America (Greater Austin)
In light of the difficult time I've been having communicating with Autism Speaks, I'd like to incorporate another Autism Social Change group into this blog.
The Autism Society of America has been around a little longer than Autism Speaks, though Autism Speaks is more prevalent on a national level. Where the Autism Society of America succeeds is in its many local chapters. While Autism speaks plans large-scale events in metropolitan areas like Dallas, New York and San Fransisco, the Autism Society of America has successfully established communities in smaller cities across the US.
Additionally, the Autism Society of America is more educator/parent friendly. They provide tips for parents about what movie theaters are providing 'sensory friendly films.' They also promote an idea called 1Power4Autism which suggest that everyday people plan events to promote autism awareness.
The differences between these groups is pretty significant. Autism Speaks is good at gaining national attention, raising funds from large companies, and raising awareness about legislation. The Autism Society of America promotes individual volunteerism, aids parents dealing with autistic children, and provides resources for adults with autism. As an individual, I find that the Autism Society of America is more personal and more informative, however there is no doubt that Autism Speaks is more successful in terms of large-scale fundraising and achieving legislation goals.
The Autism Society of America has been around a little longer than Autism Speaks, though Autism Speaks is more prevalent on a national level. Where the Autism Society of America succeeds is in its many local chapters. While Autism speaks plans large-scale events in metropolitan areas like Dallas, New York and San Fransisco, the Autism Society of America has successfully established communities in smaller cities across the US.
Additionally, the Autism Society of America is more educator/parent friendly. They provide tips for parents about what movie theaters are providing 'sensory friendly films.' They also promote an idea called 1Power4Autism which suggest that everyday people plan events to promote autism awareness.
The differences between these groups is pretty significant. Autism Speaks is good at gaining national attention, raising funds from large companies, and raising awareness about legislation. The Autism Society of America promotes individual volunteerism, aids parents dealing with autistic children, and provides resources for adults with autism. As an individual, I find that the Autism Society of America is more personal and more informative, however there is no doubt that Autism Speaks is more successful in terms of large-scale fundraising and achieving legislation goals.
Thursday, March 25, 2010
Autism Awareness Month
This month is Autism Awareness Month. Autism Speaks has launched a number of initiatives in order to raise money and awareness for autism and autism research.
One of the campaigns involves 'Toys R Us.' Donations will be collected at stores in both Canada and the U.S. Additionally, certain toys marked 'Top Ten Toys that Speak to Autism' can be viewed online. It will be interesting to see if this effort is effective. At this point it seems that Autism Speaks is focusing mainly on children in order to get information and awareness out. Since it is mostly parents that shop at 'Toys R Us' approaching them to support children with autism is a good strategy.
However autism effects more than just children. Research for adult autism is just as important, especially since we are realizing that the autism spectrum covers such a wide range of people. When looking at the Autism Speaks website there are multiple pictures of children but almost none of adults. Autism Speaks mission statement states that they wish to change the future for "all who struggle with autism." Doesn't that include adults? Or is it simply easier to raise money for children?
One of the campaigns involves 'Toys R Us.' Donations will be collected at stores in both Canada and the U.S. Additionally, certain toys marked 'Top Ten Toys that Speak to Autism' can be viewed online. It will be interesting to see if this effort is effective. At this point it seems that Autism Speaks is focusing mainly on children in order to get information and awareness out. Since it is mostly parents that shop at 'Toys R Us' approaching them to support children with autism is a good strategy.
However autism effects more than just children. Research for adult autism is just as important, especially since we are realizing that the autism spectrum covers such a wide range of people. When looking at the Autism Speaks website there are multiple pictures of children but almost none of adults. Autism Speaks mission statement states that they wish to change the future for "all who struggle with autism." Doesn't that include adults? Or is it simply easier to raise money for children?
Wednesday, March 10, 2010
Autism Votes in New York
Recently, Autism Speaks officially endorsed New York state legislation aimed to end insurance discrimination against autistic individuals. The bill would require private insurance companies to not only cover screening for autism spectrum disorders, but any therapy that has been proven effective for autism treatment.
This bill is pretty groundbreaking. It would make a huge change to insurance laws regarding autism, however Autism Speaks could be doing a lot more to promote the New York bill, and campaigning for other states to alter their insurance laws.
The main priorities of Autism Speaks is to raise awareness about the disorder and to gain money for research. Autism research is thriving, in part because of effective campaigns about the prevalence of autism in today's society. (Though this is debatable based on the the transient definition of autism.)
However, autism is not going to be cured any time soon, and while the research is working on solutions, it is essential that groups like Autism Speaks attempt to alter laws that discriminate against individuals with this disorder. The fact that some insurance companies won't cover speech therapy for people with autism, but will cover it for people with 'real' disorders like cerebral palsy, is not fair. Laws must be changed while we wait for results from research. Although the Autism Speaks subgroup- Autism Votes is dedicated to legislation, there needs to be more public awareness about the insurance issues related to autism.
This bill is pretty groundbreaking. It would make a huge change to insurance laws regarding autism, however Autism Speaks could be doing a lot more to promote the New York bill, and campaigning for other states to alter their insurance laws.
The main priorities of Autism Speaks is to raise awareness about the disorder and to gain money for research. Autism research is thriving, in part because of effective campaigns about the prevalence of autism in today's society. (Though this is debatable based on the the transient definition of autism.)
However, autism is not going to be cured any time soon, and while the research is working on solutions, it is essential that groups like Autism Speaks attempt to alter laws that discriminate against individuals with this disorder. The fact that some insurance companies won't cover speech therapy for people with autism, but will cover it for people with 'real' disorders like cerebral palsy, is not fair. Laws must be changed while we wait for results from research. Although the Autism Speaks subgroup- Autism Votes is dedicated to legislation, there needs to be more public awareness about the insurance issues related to autism.
Wednesday, March 3, 2010
Autism and Environmental Causes
As groups like Autism Speaks push for more research funding, new types of research start to pop up. Autism research has led to theories about autism as a result of genetics, autism as a result of parental behavior, and now some scientists, including Dr. Philip J. Landrigan, believe that autism may be linked to environmental causes such as toxins, or differences in the early pregnancy environment.
In a recent NYtimes.com Op-Ed featured on the Autism Speaks website, columnist Nicholas D. Kristof explores the idea that the early environment might be the culprit for causing autism.
http://www.nytimes.com/2010/02/25/opinion/25kristof.html?em
The research behind these prenatal toxins is much too broad to be effective. Scientists say the problem could be anything from sedatives given during pregnancy to certain perfumes. However, Autism Speaks as a social change organization is really running with this topic. They mention current research with animals that exhibit autistic symptoms, where they examine both the genetic implications of the animals' autism and their early prenatal environment.
In a recent NYtimes.com Op-Ed featured on the Autism Speaks website, columnist Nicholas D. Kristof explores the idea that the early environment might be the culprit for causing autism.
http://www.nytimes.com/2010/02/25/opinion/25kristof.html?em
The research behind these prenatal toxins is much too broad to be effective. Scientists say the problem could be anything from sedatives given during pregnancy to certain perfumes. However, Autism Speaks as a social change organization is really running with this topic. They mention current research with animals that exhibit autistic symptoms, where they examine both the genetic implications of the animals' autism and their early prenatal environment.
Wednesday, February 24, 2010
Autism Awareness and Use of the Ad Council
In light of the 2010 Winter Olympics, Autism Speaks and the Ad Council have come together to create an ad promoting autism awareness.
http://blog.autismspeaks.org/2010/02/23/did-you-know/
The ad features a child in snowsuit on skis with the text 'Odds of a child becoming an Olympic athlete 1 in 29,000. Odds of a child being diagnosed with autism 1 in 110.
The ad also features text at the bottom that highlights some of the signs to look for such as no smiling by 6 months, no babbling by 12 months, and no words by 16 months.
This ad seems effective, especially since so many parents have big dreams for their kids when it comes to sports or other types of extra-curricular achievements. The numbers next to each other are haunting, and the ad is very memorable. The blog post that the ad premiered in included a link to autismvotes.com which encourages people to talk to their representatives about raising autism research funding.
http://blog.autismspeaks.org/2010/02/23/did-you-know/
The ad features a child in snowsuit on skis with the text 'Odds of a child becoming an Olympic athlete 1 in 29,000. Odds of a child being diagnosed with autism 1 in 110.
The ad also features text at the bottom that highlights some of the signs to look for such as no smiling by 6 months, no babbling by 12 months, and no words by 16 months.
This ad seems effective, especially since so many parents have big dreams for their kids when it comes to sports or other types of extra-curricular achievements. The numbers next to each other are haunting, and the ad is very memorable. The blog post that the ad premiered in included a link to autismvotes.com which encourages people to talk to their representatives about raising autism research funding.
Tuesday, February 16, 2010
Autism and Insurance
Recently, autismvotes.org, which is a subsection of autismspeaks.com has launched a FAQ section regarding each state's policy on autism and insurance reform. For instance, in Texas if a child under 10 is diagnosed with autism, the health plan required will need to cover all autism-related health problems, as specified by the child's primary physician. Some of these health problems may require Occupational Therapy, Speech Therapy, Physical Therapy, in addition to medications or dietary professionals needed to aid in the child's nutritional well-being.
This varies by state, and some states have not yet voted on the bill. In addition, small-employers are not required to cover general recognized services relating to autism spectrum disorders.
This varies by state, and some states have not yet voted on the bill. In addition, small-employers are not required to cover general recognized services relating to autism spectrum disorders.
Tuesday, February 9, 2010
Top Ten Research Achievements in Autism
The most recent news coming from the 'Autism Speaks' social change group, is their announcement of the top ten research achievements in autism, of 2009. Some of these include, early intervention for toddlers, new genome studies, and break-throughs on language regression studies.
Additionally, the autismspeaks.com website touched on a recent news story about a Texas mother who is asking for increased teacher training after she found bruises on her autistic son.
Additionally, the autismspeaks.com website touched on a recent news story about a Texas mother who is asking for increased teacher training after she found bruises on her autistic son.
Monday, February 1, 2010
First Entry
This blog is intended to examine how the social change group 'Autism Speaks' presents information and pushes for change, including increased public awareness and legislative action regarding people with autism.
Currently, 'Autism Speaks' is raising awareness by alerting people about a new study by the CDC, which reports that autism effects 1 in every 110 American children. 'Autism Speaks' is now asking the government to increasing funding on autism research.
Currently, 'Autism Speaks' is raising awareness by alerting people about a new study by the CDC, which reports that autism effects 1 in every 110 American children. 'Autism Speaks' is now asking the government to increasing funding on autism research.
Subscribe to:
Posts (Atom)