9 autism facts the presidential candidates (and you) need to know
The final 15 minutes of the second Republican presidential debate last Wednesday night saw the discussion surrounding vaccines — and the misguided and unfounded idea that they cause autism — thrust back into center stage.
The entire exchange, though relatively brief, was uninformed, and helped spread misinformation that directly and negatively affects the autism community at large.
CNN’s Jake Tapper, who moderated the debate, asked candidate Ben Carson about Donald Trump’s publicly stated beliefs of a link between childhood vaccines and autism. “You’re a pediatric neurosurgeon,” Tapper asked Carson. “Should Mr. Trump stop saying this?”
Carson replied that numerous studies have debunked Trump’s and other anti-vaxxers’ claims, but went further to say “we are probably giving way too many in too short a period of time,” which the medical community asserts is not supported by evidence and is a potentially dangerous assumption.
The Autistic Self-Advocacy Network (ASAN), a grassroots nonprofit run for and by the autistic community, released a powerful statement following the debate, explaining that “the use of autism as a means of scaring parents from safeguarding their children from life-threatening illness demonstrates the depths of prejudice and fear that still surrounds our disability.”
ASAN Statement on #GOPDebate Comments on Autism and Vaccination http://t.co/gkNm351JBY We need to focus on needs, not causation!
— autselfadvocacy (@autselfadvocacy) September 17, 2015
Julia Bascom, deputy executive director of ASAN, says they were disappointed by the discussion at the debate, as it did little to help the progress they’ve seen over the last few years to inform the general public that there is no scientific basis for the idea that vaccines cause autism.
“When you spread myths and misinformation about this sort of thing, and also imply that you’re better off dead than disabled, that has a direct, harmful impact on autistic people and their families,” Bascom tells Mashable.
She also says that Tapper should have known better than to ask “such an irresponsible question,” without multiple medical professionals to provide answers based in fact.
To shed some light on advocacy surrounding this developmental disability that’s so often misunderstood, we compiled nine important and perhaps lesser-known facts about autism that the presidential candidates — as well as the general public — should know.
1. There is no link between vaccines and autism.
Let’s start with the matter at hand. The myth that vaccines lead to autism in children came from a discredited and since-retracted 1998 study; since then, many studies and leading medical organizations have shown that it’s simply untrue.
“Even if there were a link — which, again, there’s not — it would still be preferable to be autistic and alive than to be not autistic and dead,” Bascom says.
Even the rhetoric around how people talk about the lack of a link — as was the case during the debate — can have an impact, she adds.
2. There is no one cause of autism, nor one type.
Autism is a general term that describes a group of complex developmental brain disorders, often characterized by difficulties in communicating, social and behavioral challenges, and repetitive behaviors.
These disorders, which have roots in early brain development and are therefore usually diagnosed at a young age, fall on the “autism spectrum.” Science suggests both genetics and environmental influences play a role in autism.
This means that not all people on the autism spectrum have the same challenges, needs or outlooks — just like everyone else differs in those areas. It’s a part of diversity — the Developmental Disabilities Assistance and Bill of Rights Act of 2000 even states that “disability is a natural part of the human experience.”
“There are lots of different ways to have a brain,” Bascom says. “There are lots of ways to be a person. Autism is one of them.”
It’s also important to underscore that autism is not a disease, but rather a neurological variation that can be disabling. Using the same rhetoric and comparisons as diseases like epilepsy or cancer (think “cures” and “treatment”) doesn’t make sense, Bascom says, because they work in very different ways.
3. Increased autism prevalence is likely due in part to better diagnoses.
A photo posted by Centers for Disease Control (@cdcgov) on
Based on the latest numbers from the U.S. Centers for Disease Control and Prevention (CDC), approximately one in 68 American children is on the autism spectrum — 10 times higher than 40 years ago.
However, it’s unclear whether the increased prevalence reflects better evaluations due to awareness and access to services, as opposed to “true increases,” the CDC says.
ASAN takes the stance that there are gaps in the CDC’s research due to vast disparities across gender and race, as well the fact that the report did not include data on autistic adults. Other studies have indicated that rates of autism in children and adults are the same, which helps “debunk public hysteria over a so-called ‘autism epidemic,'” which is language Trump used during the Republican debate.
“Autistic people have always been here,” Bascom says. “We’re seeing more and more research demonstrating that you see the same rate of autism in adults as you do in children. So, it’s not some sudden, new thing.”
4. There needs to be more focus on autistic adults.
Within the next 10 years, an estimated 500,000 autistic children will become adults, and there isn’t much of a safety net for them when they turn 18.
“We want people to know that autistic people grow up … We aren’t eternal children,” Bascom says. “There are huge needs on the part of the adult population for services and supports as it relates to employment, housing, health care, rights protection, and those things see very little focus. That causes people to suffer.”
She adds that there isn’t a lot of knowledge or research on what adult autism “looks like” — in other words, how autism impacts people over the course of their lives.
“I would emphasize, I think especially for the [presidential] candidates, that the autistic community needs there to be a focus on the services and the support that we need … to have a good quality of life … We vote. We do vote. So, we’d love to see that focus reflected a little more accurately,” Bascom says.
5. The autistic population has a particularly low rate of employment.
Hear from a young professional how early work experiences helped lead to long-term success https://t.co/SDM5lO4IXt #workearly #disability
— autselfadvocacy (@autselfadvocacy) September 19, 2015
An April report from the A.J. Drexel Autism Institute found that two-thirds of young people with autism do not have a job or educational plans for the first two years after high school, and more than one-third of young adults with autism have the same issues continue into their early 20s.
Autistic people in their 20s are also less likely to be employed than people with other disabilities.
Students with autism can often access special services, like tutoring and other support, through special education programs, but after graduation those services disappear. That’s why many are advocating for better social support for autistic people, especially when it comes to jobs.
6. There are too few housing resources for autistic people.
While all people with disabilities deserve the right to independence and adequate housing, more than 80% of autistic adults between the ages of 19 and 30 live with a parent or guardian.
“This isn’t necessarily because we want to,” Bascom laughs, “or even because our families want us to, but because there aren’t adequate supports to enable us to live in environments that are in the community where we have what we need. There’s very little funding for these things.”
There have been autism-specific housing projects, but Bascom says many autistic people and advocates don’t support that due to increased isolation and vulnerability to abuse and neglect. Instead, she sees a need for more funding for services that would allow autistic people to get their own apartments and live with a friend.
7. Health care access is especially challenging for autistic people.
The Centers for Medicare and Medicaid Services (CMS) recently recognized people with disabilities as a medically underserved population, and autistic people especially face generalized health care access issues.
For one thing, young people with autism may lose the health care access they had before they turned 18.
“We often find situations in which a pediatrician might do well … [and] over the course of 18 years they’ve gotten to know you pretty well and understand how your disability impacts your health and vice versa,” Bascom says. “But when you reach adulthood, it’s very difficult to find another physician who would be more appropriate and who’s, frankly, willing to serve you, let alone having space available.”
ASAN has detailed the various other health care obstacles the autistic community faces, and has also created a toolkit to empower people with disabilities transitioning into adulthood.
8. Autistic people can speak for themselves.
The shirts for the House Committee Hearing on Autism on Thursday, November 29th!
Posted by The Autistic Self Advocacy Network on Tuesday, November 27, 2012
“We want people to know we can speak for ourselves, both in the sense that most autistic people can talk, but also in the sense that even those of us who can’t talk can typically gain access to an alternative method of communication,” Bascom says, citing everything from pointing to pictures to using helpful iPad apps.
But generally speaking, autistic advocates want everyone to know they have opinions on their lives, disabilities and how they want to be treated.
“It’s important that when we’re talking about autistic people, we’re included in that conversation — that we’re not having conversations that are about us without us,” Bascom says.
9. Many autistic people lead happy, healthy lives.
Despite many of the facts on this list highlighting the various inequalities autistic people face, autism — and disability in general — does not preclude someone from having a meaningful life. Even though everyone’s experience is different, autistic people go on to accomplish all sorts of things.
“We learn,” Bascom says. “We grow. We participate in our communities. We have valuable lives that are worth living. Many of us are quite happy. We’re not always our worst moments.”
Have something to add to this story? Share it in the comments.