Autism Speaks has been advocating for people with autism since it was founded in 2005. This respected non-profit promotes solutions and research for people with autism and their families through advocacy and support options.
With April being Autism Awareness Month, The Celebrity Cafe has been doing a 360 degree report that includes featuring celebrities with autism, a report on what is autism and out of solidarity, we are also Lighting It Up Blue.
Autism is getting more media attention these days, especially in pop culture. Many TV shows and movies are featuring autistic characters. In fact, The Good Doctor is one of the most popular new shows of the season.
Autism Speaks was founded by Bob Wright, the vice chairperson of General Electric and his wife Suzanne soon after their grandson was diagnosed with the condition.
Here are some interesting facts about autism from Autism Speaks:
- The Centers for Disease Control and Prevention (CDC) estimates autism’s prevalence as 1 in 68 children in the United States.
- An estimated 50,000 teens with autism become adults – and lose school-based autism services – each year.
- An estimated 70 million people are affected by autism worldwide.
- Boys are 4 to 5 times more likely than girls to have autism.
- For most people, autism is a lifelong condition.
Approximately one-third of people with autism remain nonverbal.
- Nearly one-half of children with autism wander or bolt from safety.
- Certain medical and mental health issues frequently accompany autism. They include gastrointestinal (GI) disorders, seizures, sleep disturbances and eating disorders.
The Light It Up Blue campaign has public and private buildings around the world to show their support of people with autism. Iconic landmarks such as The Empire State Building, Christ the Redeemer, The Great Pyramid, CN Willis Tower have all glowed with blue light.
Julie C. an attorney in Los Angeles, CA had the following to say to get people to better understand the struggles her son faces.
"Hey, you know that middle schooler who sits with his behavioral aide at lunch, talks incessantly about random topics, gets in trouble a lot for yelling at authority figures, and who often appears very angry? That is MY son. He has something called autism, which severely affects his ability to communicate (not talk, but communicate), socialize, learn and to adapt to new situations and demands. He is also the most unique person I know. He is devastatingly kind but also cutting, he cries uncontrollably if people he loves are upset, he remembers mundane details (like every date a particular hairdresser cut his hair), and he never, ever complains or tries to avoid school (even though it is the hardest thing he does). I hope you get the chance to get to know him or someone else with autism. It might just be the most meaningful relationship in your life. #worldautismawarenessday"
Angela Geiger, President and CEO of Autism Speaks connected with Michelle Tompkins for TheCelebrityCafe.com about autism, the Light It Up Blue campaign, new research and treatment options and where you can learn more information.
Michelle Tompkins: Now, Angela, where are you originally from?
Angela Geiger: I was born in Pennsylvania.
Michelle Tompkins: And where do you live now?
Angela Geiger: In New York City.
Michelle Tompkins: And where did you go to school?
Angela Geiger: The University of Pittsburg.
Michelle Tompkins: And what is your job title, please?
Angela Geiger: President and CEO of Autism Speaks.
What is Autism?
Michelle Tompkins: Now, this one is the most obvious question that I need to ask, what is autism?
Angela Geiger: Autism, it refers to a range of conditions characterized by challenges with social skills, repetitive behavior, speech, and nonverbal communication.
Michelle Tompkins: How many people have it?
Angela Geiger: The CDC estimates there's about 3 million in the US and 70 million worldwide. That's 1 and 68 children.
Michelle Tompkins: That's a lot.
Angela Geiger: It is.
Michelle Tompkins: What does the term 'on the spectrum' mean?
Angela Geiger: So autism is also referred to as autism spectrum disorder, and that really reflects the fact that autism impacts people in very different ways. Some people need lots of support, other people need much less, and so it really refers to that diversity.
Michelle Tompkins: Why has the number of people diagnosed with autism increased in the past few years? Is it because there are more cases, better diagnostics or both?
Angela Geiger: It's both really, but there's definitely better diagnoses and also more awareness of the signs and symptoms and the actual rate of autism also seems to be growing.
Michelle Tompkins: Now, what percentage of autistic children also have mental retardation?
Angela Geiger: About one-third of people with autism also have an intellectual disability and that certainly can affect how their autism manifests itself.
Michelle Tompkins: Can you please elaborate on the condition known as savant syndrome?
Angela Geiger: Ah, so savant syndrome is people with autism— a small minority of the people who have autism—who have a real special ability in a certain area.
Michelle Tompkins: And how prevalent is this? I'd imagine pretty rare.
Angela Geiger: Yes, it is it's— I think there's a stereotype or a misconception that it—that it's frequent but it really is quite rare.
Michelle Tompkins: Is autism still treated as a behavioral problem?
Angela Geiger: Behavioral therapy can certainly help if it's a developmental disorder, but we know that people who the earlier they get intervention in childhood, the better their lifetime outcome.
Michelle Tompkins: My understanding is that parents of autistic kids tend to resent that term, because they see it as the kids are "acting out" and they say they're not.
Angela Geiger: You know, I think every individual is different and those interventions can really make a big difference. And we try hard not to label things because different people react in different ways as you say.
Michelle Tompkins: How close are we to identifying a cause and a cure?
Angela Geiger: Well, one of the things that we absolutely learned as autism research has increased is that autism isn't one thing, but it actually has many subtypes. So there never will be a "cure" so to speak, but there'll be different treatments and interventions for people depending what kind of autism they have, and what they personally want to pursue.
So we've made great advances in personalized medicine, primarily because of Autism Speaks MSSNG Program (pronounced missing), which is do we hold genome sequencing to really find out more into the genetic causes, but also into for those who don't have a genetic mutation, what's making that autism in common as well.
Michelle Tompkins: What are the benefits of early detection?
Angela Geiger: Well, the benefits of early detection are that you can have earlier intervention. So if you're a parent of a young child and you have any concerns, you really should see your healthcare provider. And the other good news is that if you're seeing challenges or concerns, you actually don't need the autism diagnosis to necessarily get early intervention, especially under three.
Michelle Tompkins: What are some successful treatment options so far?
Angela Geiger: Well, for lots of people there's ABA therapy, which makes a big difference. And then the other pieces that along with the classic autism symptoms, many people have coexisting conditions along with autism, so they may have GI problems or sleep disorders, anxiety, or other things like that. And so we're also doing research but also connecting people through the learnings of our autism treatment network on how to medically manage those symptoms that are also-- those comorbidities that can also be very disturbing to quality of life.
Michelle Tompkins: Many autistic kids, there's something wrong with them. What advice to you give to parents or teachers or loved ones to help them with this? I'm sorry not wrong with them, different. They're treated differently.
Angela Geiger: Autism Speaks just did a survey, a nationwide survey to find out more about the misconceptions about autism, and one of the things that was actually surprising to us is that 55 percent of people said they knew someone with autism. And then when you read the rest of the questions about these misconceptions, they were more likely to know the true facts if they knew someone with autism. So I think the most important thing is really continuing our work in understanding acceptance so people know people with autism, and then they're more accepting. And the other thing is that it's important to know that everyone's autism is their own individual. And so one of the things we've done this month is release an autism mosaic that allows people to tell their own stories and allows others to learn about them.
About Autism Speaks
Michelle Tompkins: Now what is Autism Speaks?
Angela Geiger: Autism Speaks is the leading organization around advocacy, research, and support, and we are enhancing lives today and accelerating the spectrum of solutions for tomorrow.
Michelle Tompkins: Now you have a new report, or is this the survey that you were just mentioning, that has some interesting findings. Can you please tell me about that?
Angela Geiger: Yes, as I mentioned the biggest finding was how many people really know someone with autism. That certainly wasn't true 10, 15, 20 years ago. One of the things that we did find is that almost three-quarters of those surveyed agreed that children with autism are more likely than other children to be bullied. But one of the misconceptions is that people with autism commit crimes at a higher rate than the general population. In fact, research dispels that notion, and it actually shows that those with autism more likely than average to be the victims of crime.
Michelle Tompkins: What's the name of the survey, then, please?
Angela Geiger: You know what? We've just been calling it our Autism Speaks Special Report.
Michelle Tompkins: Where can people find that survey or that information?
Angela Geiger: People can go to autismspeaks.org to find the story, to find out about what you can do during World Autism Month, and also to take a quiz to test your own knowledge about autism, and, as well as give your picture and post, or read those of others.
What is Light It Up Blue?
Michelle Tompkins: Now what is the Light It Up Blue campaign?
Angela Geiger: Light It Up Blue started nine years ago, and the effort was really to light up buildings all around the world blue, in celebration of World Autism Awareness Day, which is April 2, and people in more than, or buildings in more than 140, 150 countries, actually, are lighting up blue this year, as well as that transition to people wearing blue. So, we're encouraging people to wear blue, not only on April 2, but throughout the month, to show their understanding and acceptance of people with autism.
Michelle Tompkins: You should know, we bought a blue light bulb, and have been showing it since yesterday. We plan to keep it up all month.
Angela Geiger: Oh, thank you so much.
Michelle Tompkins: Do you have any idea how many people participated in it last year?
Angela Geiger: Oh, my goodness. Thousands and thousands. I know we had a million people turn their Facebook blue and, certainly, far beyond that, as well.
Michelle Tompkins: Now, you talked about this a little bit, but can you go into what is the Autism Speaks Story Mosaic?
Angela Geiger: Sure. The Autism Speaks Story Mosaic is a first of its kind collection of this many stories of people with autism themselves telling their story, as well as friends, and family, and loved ones, and you can go to Autism Mosaic.org and you really just get lost. All these pictures, and peoples stories, and moments of caring, it's really fantastic.
Michelle Tompkins: Now please tell me about your new PSA campaign.
Angela Geiger: Our new PSA campaign is called Get The Full Picture. Because we know that autism affects each person differently, this campaign tells the story of six individuals who have really different life experiences with autism. It was created for us pro bono by the New York creative agency JWALK, and it's a really lovely depiction of what autism is.
Michelle Tompkins: Now what are future plans for Autism Speaks?
Angela Geiger: Autism Speaks is continuing our work around early detection and certainly increasing understanding and acceptance, our really important advocacy program to increase federal funding for more research, and helping people every single day. A newer part of the work we're doing is also working towards helping people successfully transition to adult outcomes. 50,000 kids a year graduate out of the school system, and they need community supports like employment, and activities, and housing, and those kinds of issues, so, we're working on solutions there.
Michelle Tompkins: What do you want people to know most about autism?
Angela Geiger: I think the most important thing that people should know about autism is that every single person with autism is their own unique individual, and what's good for them, is good for them and that we should really be understanding and supportive of individual situations.
Michelle Tompkins: Now where can we get more information?
Angela Geiger: You can go to Autism Speaks.org.
Michelle Tompkins: Is there anything you'd like to add?
Angela Geiger: Oh, you asked a bunch of questions. I think you got everything. Thank you.
Michelle Tompkins: Yeah, I'm trying to get the whole picture. My best friend's son is autistic, so I want to make sure we do a good job for her, too.
Angela Geiger: Oh, that's great. And certainly let us know if she needs any support. We also have our Autism Response Team. It's 888-Autism-2, and we can offer personalized assistance if she has questions or needs local resources.
Michelle Tompkins: Oh, that's wonderful to know. Please tell me a little bit more about that, and I'll add that in, as well.
Angela Geiger: Sure. It's called ART, or the Autism Response Team, and they answer phone calls, as well as emails, and people will call us. The most frequent question is "Where can I find X," a doctor, whatever that resource may be. And we're also able to send out, we've got tons of toolkits. So, whether it's when you're first diagnosed, that first 100 days, whether you're an adult who discovers that you might have autism, there's toolkits for that. There's transition toolkits, all sorts of ways that really help navigate and ease that path for families.
Michelle Tompkins: Oh, it sounds great, very helpful. Well, I wish you luck with the campaign. I hope you have millions of people Lighting It Up Blue. We are at The Celebrity Café.
April is Autism Awareness Month. Learn more about Autism Speaks here.