Although Autism Awareness Month isn’t until April, it’s never too soon to talk about autism, especially with schools opening soon and the mainstreaming of many diagnosed children. For starters, back in 2000, the CDC estimated that one in 150 children was being diagnosed. Today, that figure stands at an astonishing one in 68, with an estimated one out of every 42 boys being identified and one in every 189 girls, whose cases are usually more severe. The total now stands at an estimated 3 million affected Americans.
Those figures are mirrored here in Pennsylvania where some 55,830 individuals received services in 2011, three times the number in 2005, with 80% of them males and 20% females:
- 49.4% were between the ages of 5 and 12
- 24.9% were between the ages of 13 and 17
- 11.2% were over 21
That last number, however, is expected to grow to about 32.1% by 2020 as our younger autistic population ages. In the meantime, the three Pennsylvania counties with the highest number of cases were Allegheny with 4,895, Philadelphia with 4,617, and Montgomery County with 1,691, and the numbers keep increasing. About 60% of all these children and adolescents are served by the Pennsylvania Department of Education and are included in our classrooms for 80% or more of the day.
One reason attributed to the one in 68 figure is that, in May 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), was updated and combined autism disorder, Asperger’s syndrome, and other pervasive developmental disorders into one category: autism spectrum disorder, ASD.
Meanwhile, researchers have now identified about 500 gene mutations related to autism. It’s been determined, though, that just a few, together with certain environmental factors are to blame. These include the ages of both parents at the time of conception, illness during pregnancy, and oxygen deprivation during birth. At the same time, it’s thought that prenatal vitamins containing folic acid and/or a folic acid-rich diet before and after conception might reduce the risks.
What is well known, though, is that the most common sign of ASD is impaired social interaction. Other early indicators identified by the National Institute of Neurological Disorders and Stroke include:
- No babbling or pointing by age 1
- No single words by 16 months or two-word phrases by age 2
- No response to name
- Loss of language or social skills
- Poor eye contact
- Excessive lining up of toys or objects
- No smiling or social responsiveness
Later indicators include:
- Impaired ability to make friends with peers
- Impaired ability to initiate or sustain a conversation with others
- Absence or impairment of imaginative and social play
- Stereotyped repetitive, or unusual use of language
- Restricted patterns of interest that are abnormal in intensity or focus
- Preoccupation with certain objects or subjects
- Inflexible adherence to specific routines or rituals
Remember, however, that ASD varies in character and severity from child to child. Indeed, there even more differences than similarities between autistic siblings.
And unfortunately, not only are the numbers on the rise, it’s also one of the costliest of disabilities. Caring for someone with an autism spectrum disorder who also has an intellectual disability tops $2.4 million over a lifetime; it’s about $1.4 million for those who don’t. Says Michael Rosanoff of Autism Speaks says, “We’ve known for a long time autism is expensive, but we’ve never really had data like this to show us the full magnitude of the issue.”
It goes without saying then that unraveling the mysteries of ASD and finding treatments are crucial. Last year, President Obama signed the Autism CARES Act, thus reauthorizing the Combating Autism Act of 2006 that includes more than $1 billion in federal funding for research, monitoring, and services. Prior to that, over a 5-year period, about $1.5 billion had been dedicated to research.
Already, stem cell technology is showing promise, and this summer the National Institute of Health has teamed up with the Simons Foundation Autism Research Institute in a $28 million effort to identify autism biomarkers. Here, brain tissue is being grown from the skin cells of autistic people. The result: “organoids,” which are bits of brain tissue under an inch in diameter for study. Researchers will follow children 3 to 5 and 6 to 11 over many months at five sites across the country.
Hope comes, too, from a truly unexpected place: the diuretic bumetanide, typically used to treat fluid retention in those with high blood pressure. Researchers have actually discovered that “the drug given during pregnancy could reverse autism symptoms in newborn mice bred with a genetic condition that often causes autism in people, and in rats exposed to valproic acid which is known to trigger autism.”
And, even as more and more discoveries are made, exciting things are happening right here in the Philadelphia area:
- Autism Expressed in Philadelphia provides digital skills training for students with autism. Every lesson includes an activity designed to measure how much a child has learned.
- The Step Up Academy located on the grounds of the Abington Friends School in Jenkintown is missioned “to provide the supportive educational environment that children moderately affected by autism spectrum disorder need to potentially re-enter a setting with typically developing peers.”
- Pee-Vee, a humanoid robot is debuting at the Perkiomen Valley School District this fall. It “talks, reads stories, solves math problems, sings songs, sits down, stands up, dances, and a whole lot more,” thus engaging autistic children. And for non-verbal students, Pee-Vee incorporates pictograms and has touch sensors.
Plus, there are organizations offering information and assistance. Among the best known:
- Greater Philadelphia Autism Society is nearby, and its mission is to “promote lifelong access and opportunities for persons within the autism spectrum and their families to be fully included, participating members of their communities through advocacy, public awareness, education and research related to autism.”
- Autism Speaks is “dedicated to funding global biomedical research into the causes, prevention, treatment, and a possible cure for autism.”
- Association for Science in Autism Treatment calls itself “the go-to source for research summaries of the full array of autism treatments for families and professionals to make informed choices before considering treatment options.”
Nowadays, help also comes in the form of apps, such as:
- Emotions and Feelings—Autism “uses social stories or simple illustrations to show what different feelings look like.”
- Agnitus—Games for Learning “offers a variety of interactive games, some of which focus on identifying and matching shapes, colors, letters, and managing self-help skills.”
- Time Timer “helps those with Autism see time pass. Even young children instinctively understand that when the red disk is gone, time is up!
- Choiceworks “combines the typical visual schedule app with a behavioral app that helps kids to make the right choices throughout their day.”
So take heart; help is out there, and the outlook improves a little bit every day.