Most families I talk to today are always looking for facts and statistics about autism to help better educate themselves and their communities. Thanks to wearing many hats in the autism community, today I wanted to share the top 68 things I believe our community should know about autism…
- To start… 70 million individuals worldwide have autism.
- Around 50% of individuals with autism wander from a safe environment, and over 50% go missing.
- Autism is the fastest-growing developmental disability in the United States.
- 1 in 42 boys are diagnosed with autism.
- 1 in 189 girls are diagnosed with autism.
- Over 3.5 million individuals in the United States have autism.
- Boys are nearly five times more likely than girls to have autism.
- Autism-related costs average $60,000 a year per family.
- 1/3 of individuals with autism also have epilepsy.
- Rain Man has the most Oscar wins of any autism-related film.
- Temple Grandin has the most Emmy wins of any autism-related film.
- The highest prevalence of autism currently is in New Jersey with every 1 in 45 individuals being diagnosed and 1 in 28 boys.
- The average age of diagnosis of autism is 4 years of age.
- Half of children identified with an Autism Spectrum Disorder have average or above-average intelligence.
- A child can be diagnosed with autism as early as 18 months.
- In 2007, the United Nations declared April 2nd as World Autism Awareness Day.
- As part of April 2nd, Autism Speaks started the global autism awareness initiative called Light It Up Blue.
- There is currently no medical test to detect autism or a cure.
- In 2014 the Autism CARES Act was passed in Congress giving 1.5 billion dollars of federal funding towards autism for the next 5 years.
- Currently, 40 states have autism insurance reform and counting.
- 30-50% of individuals with autism also have seizures.
- Dr. Leo Kanner was the first to describe autism in 1943.
- There are five types of autism-spectrum disorders: Pervasive Developmental Disorder- Not Otherwise Specified, Autism, Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.
- You can see the signs of autism in infants as young as six months.
- In 2012, only 0.55% of National Institutes of Health Funds Allocation (NIH) went directly to autism research ($169 million out of $30.86 billion)
- About 1% of the world population has autism.
- 35% of young adults (19-23) with autism have not had a job or received post graduate education after leaving high school.
- 90% of adults with autism are unemployed or underemployed.
- 38. 1 in 5 Americans currently have a disability.
- Autism services cost U.S. citizens $236-262 billion annually.
- African-American and Hispanic children are diagnosed far later than Caucasian children.
- There is a wide spectrum of Autism-related disorders. If you’ve met one person with autism, you’ve met one person with autism.
- Some celebrities also have autism (i.e. Dan Aykroyd, Susan Boyle, Daryl Hannah, Temple Grandin, John Elder Robison, etc.).
- Autism is often labeled as a social and communication disorder, although some with the diagnosis may deal with other challenges such as sensory, cognitive and motor issues.
- The popular image of autism often falls with children. More than 80% of those currently on the spectrum are children.
- Drowning is the leading cause of death among children with autism.
- Suicidal thoughts are 10 times more likely in adults with autism than those without.
- Autism is a lifelong disorder. It doesn’t go away when you become an adult.
- Autism Speaks currently has 40 tool kits and counting to help better educate our community on everything from early intervention to adulthood. They are all available for free download here.
- Many people with autism have key interests that can be utilized by employers in the workplace. (i.e. just because you have a disability doesn’t mean you don’t have abilities)
- There is great literature available on autism today. Look Me in The Eye (by John Elder Robison) and The Reasons I Jump (by Naoki Higashida) for example, were two books on autism that made the NY Times Best-Seller List.
- Programs like Project Lifesaver and The Big Red Safety Tool Kit by The National Autism Association are helping to educate and provide resources for our community on the issue of wandering.
- Individuals with autism who need therapy should be seen on a case-by-case basis. Although some therapies are debated today some of the most universal therapies that are helping today are physical, occupational and speech therapy.
- Other therapies currently suggested to help individuals with autism include: Music therapy, Theatre therapy, Early Start Denver Model, Visual Schedules, Sensory Integration therapy, Applied Behavioral Analysis, Social Story Therapy, Pivotal Response Treatment, and Cognitive-Behavioral Therapy.
- Although therapies are pivotal for individuals with autism, other things such as a healthy diet and daily exercise are seen as ways to help them progress. In the past, a Gluten-Free diet has been seen as helpful.
- More than half of children with autism are bullied at some point in their lives and twice more compared to their peers who don’t have a disability (IAN).
- More than half of bullying is also stopped when a peer intervenes showing the importance of not only autism awareness but also autism acceptance.
- Autism Speaks, since it was founded in 2005, has given more funding towards its mission than any other autism organization in the world
- The majority of scholarships available for individuals with autism for post-secondary programs are for those with physical disabilities. Programs such as KFM Making a Difference are offering scholarships for those with autism to help change that conversation.
- An Individualized Education Plan (IEP) helps students with disabilities from Pre-K through High School get the services they need. If they get into a post-secondary program, they lose their IEP and instead have to advocate for their accommodations through Reasonable Accommodations.
- The Achieving a Better Life Experience Act (ABLE Act) that passed through Congress provides families with the opportunity to receive tax-free savings accounts for their loved ones to save up for when they are adults.
- Many individuals with autism are self-advocates in our community and have provided powerful quotes for our community. It’s important to remember individuals with autism sometimes see autism as a part of who they are. Dr. Temple Grandin, one of the most renowned autism advocates in the world says it best with her quote “Different not less.”
- As an autism advocate for the past eight years, I’ve traveled the world talking about disability-related issues. Last year, I was certified as a national publicly accredited speaker from The National Speakers Association. At that time, I’ve been able to write two best-selling books on autism and work on five autism-related films. You can learn more about my background at www.kerrymagro.com
- Autism is reported to occur in all racial, ethnic and socioeconomic groups.
- Those with autism can feel empathy and love. Websites such as http://wrongplanet.net/ help provide individuals with autism the chance to make friendships and relationships with one another online.
- Autism is NOT a disease.
- Autism has found a place in television today. Shows like NBC’s Parenthood (which is now available to watch on Netflix) have shown realistic portrayals of individuals with autism.
- Grassroots efforts by our community are helping our local political officials understand the importance of autism legislation. Initiatives such as Autism Votes, which you can learn about here, are a great way to get started on how you can make a difference in your town!
- People on the autism spectrum are especially vulnerable to bullying. Nearly two-thirds of these individuals have been bullied.
- Technology can be used as an advantage for those on the spectrum. Autism Speaks provides an Autism App list here of what’s helping our community today!
- College individuals are helping spread awareness and support for autism. Learn to see if your college has an Autism Speaks U Chapter and/or how you can start one at www.Autismspeaks.org/U
- Autism Speaks currently has the greatest Facebook following of any related autism organization while Carly Fleischmann had the greatest Facebook following of any individual with autism.
- There are currently 400,000 volunteers and walkers that participate to help support Autism Speaks through their Autism Speaks Walks. You can learn more at autismspeakswalk.org
- MSSNG is a project by Autism Speaks and Google and sets out to sequence the DNA of 10000 families affected by autism. You can learn more about the initiative at www.mss.ng/
- There is no known scientific link currently between vaccines and autism.
- 1 in 68, individuals are currently diagnosed with autism.
Throughout the month of April and all year round I hope you share this piece to educate our community. The number of people on the autism spectrum is constantly growing. When I was growing up, the numbers were closer to 1 in 1000 individuals being diagnosed. It takes a village to make change, and we can make it a reality.
There’s no better time to start than now…
What else would you add to this list to help educate our community for autism awareness month? Tell us in the comments!
This is a thoughtful list, with an obvious bias in favor of the work of Autism Speaks. You note that 25% of autistic individuals are non-verbal, but you make no mention of the several techniques that enable non-verbal persons to communicate, such as Facilitated Communication or the Rapid Prompting Method. The subset of non-verbal persons is often disregarded when discussions of interventions take place. The experience of a non-verbal person with autism is vastly different than the other 75%, and their families often feel underrepresented and underserved.
I feel that the majority of people believe that if they acknowledge that they know someone with autism it means they understand what it means to support autism. Acknowledgement doesn’t equal understanding or support! I need to advocate for my asd children daily and wish I could do it I a larger scale…to reach more people at one time. School is where I would start. ..from admin to students!
i would change the vaccine comment to something along the lines of genetics and environmental toxins have been shown to as applicable to the development of autism.
Everything is focused on early intervention. What about the toughest years…middle school and high school age? My son is 16, still has meltdowns, can’t handle any sort of change, and now has spend down medicaid. Which means in order to have any sort of therapy, that would be $1800 a month out-of-pocket. I can bearly afford food on the table, let alone therapy. What about vacations? You can kiss that goodbye. We as parents are exhausted, have no life, and think about what’s going to happen when our son becomes an adult. He can’t be left alone. Group home? Round the clock care? No one talks about the middle school, high school, and adult years.
You can have autistic traits, you have to fit a enough of the symptoms to be diagnosed autistic. :/
We could address the lack of services due to funding in the public school sector?
Addendums… I am meaning well, and I am Autistic….
“59. Rain Man has the most Oscar wins of any autism-related film…” and created more spillage of cocktail sticks and caused irritation to more Autistic people than any other film… And the ‘Autistic Savant’ it was based upon was found to not actually be ‘Autistic’
“58. Temple Grandin has the most Emmy wins of any autism-related film…” And she is a person too NB… We hardly ever like cows quite as much as she does
“55. Half of children identified with an Autism Spectrum Disorder have average or above-average intelligence…” Last I heard it was 40% with average to higher IQ, and 60% below average, but I might have old data
“51. As part of April 2nd, Autism Speaks started the global autism awareness initiative called Light It Up Blue…” But because it is related to ‘Autism Speaks’ many actual Autistics refuse to support ‘Light it up Blue’. A lot of what ‘Autism Speaks’ calls ‘awareness’ we call ‘fear-mongering misinformation’.
“45. Dr. Leo Kanner was the first to describe autism in 1943…” – Actually, he wasn’t… Dr. Downs, accurately described Autism in a lecture he gave over 50 years before Dr. Kanner’s paper… but Kanner’s paper is what foundations current understanding of Autism.
“43. You can see the signs of autism in infants as young as six months…” …and even younger, right down to days after birth, but they are not conclusive enough to be noticed without looking, or to draw a diagnosis.
“32. The popular image of autism often falls with children. More than 80% of those currently on the spectrum are children…” Of those *diagnosed* maybe… but the ‘epidemic’ is a myth and so, though not identified, I’d say the ‘80%’ is to do with the fact so many adults, presently are left undiagnosed – so its more likely to be 24% of the Autistic population.
“19. Autism Speaks, since it was founded in 2005, has given more funding towards its mission than any other autism organization in the world ($525 million)…” Not to be mistaken for funding towards helping Autistic people, or funding spent sensibly. ‘Autism Speaks’ is more responsible for mis-information in the manner of frightening families about the diagnosis than helping with real understanding. Many Autistics oppose ‘Autism Speaks’ – me included.
“15. Many individuals with autism are self-advocates in our community and have provided powerful quotes for our community. It’s important to remember individuals with autism sometimes see autism as a part of who they are…” ‘Autism Speaks’ does not include the voices of Autism Advocates in its decision making or aims… the most high ranking Autistic person involved with them, resigned due to him *not* being listened to. There is a disjunct between how Autistic self-advocates see themselves and how ‘Autism Speaks’ portrays Autistic people.
“12. Those with autism can feel empathy and love…” Absolutely we do… and there is a theory that some of the characteristic behaviours associated with Autism may stem from Autistic people feeling empathy and certain emotions much more strongly than we can cope with.
“11. Autism is NOT a disease…” Absolutely true. Though ‘Autism Speaks’ insists it is.
“8. People on the autism spectrum are especially vulnerable to bullying. Nearly two-thirds of these individuals have been bullied.” And this does not only mean at school, but also college and the work place… as well as outside.
“5. Autism Speaks currently has the greatest Facebook following of any related autism organization while Carly Fleischmann had the greatest Facebook following of any individual with autism…” Since undergoing ECT, Carly Fleischmann is currently mainly unable to communicate and not active while on a long recovery.
“4. There are currently 400,000 volunteers and walkers that participate to help support Autism Speaks through their Walk Now for Autism Speaks events.” …And I have seen videos posted by Autistic protesters of such volunteers being very abusive towards the Autistics protesting… I am sure it is the minority of those volunteers and that most would be more respectful even if disagreeing.
“2. There is no known scientific link currently between vaccines and autism…” This should simply be “There is NO link between vaccines and Autism”. The whole idea of the link stems from a fraudulent paper and many studies have shown there is no link. A lot of money has been wasted on this now.
“1. 1 in 68, individuals are currently diagnosed with autism.” ONLY in the USA… world-wide the rate remains around 1 in 100 and not 1 in 68.