I have a great contribution from Paul Napier, who is the executive director of Reaching Milestones. Reaching Milestones is one of the leading providers of Applied Behavior Analysis (ABA) in Jacksonville. They are a privately owned organization dedicated to improving the lives of children and adults with disabilities by providing highly-effective, research-based behavioral interventions.
Since Autism Speaks’ foundation in 2005, the organization has helped the nation and the world better understand autism and better ways to treat the condition. Here are some facts about autism that Autism Speaks has brought to the forefront:
1. The number of people discovered to have autism has grown rapidly over the past 10 years.
In 2005, the number of people diagnosed with autism was only one in 166. Ten years later, the numbers of people who have been diagnosed with the condition have grown to one in 68, more than a 100% increase over the past decade.
2. Direct screening studies suggest that the number of people with autism may be higher than one in 68.
In a recent study conducted in South Korea, Autism Speaks-funded researchers discovered that every one in 38 children had autism. Most of these children had not been diagnosed before this study. The organization is now negotiating with the CDC in the US to perform a similar study using direct screening in United States classrooms.
3. Reliable diagnoses of autism in children can be made by the age of two.
Earlier diagnosis and subsequent intervention can improve outcomes. Autism Speaks is making early screening available to more people, particularly among communities who have been underserved in years past.
4. With a top-quality early intervention, a child’s brain development and brain activity can show improvement over time.
Because there is a degree of plasticity in the brain, the earlier the intervention, the better the chance that it will have a positive impact on the brain’s development. On a practical level, such interventions will help reduce the need-and the subsequent cost-of extensive behavioral and educational support during childhood.
5. For people with autism, behavioral therapy can change their lives for the better.
Research shows solid evidence of the benefits of behavioral therapy. With this evidence, Autism Speaks has been able to push through new laws in 38 states that mandate that healthcare coverage pay for the costs of behavioral therapy for people with autism. Those people and their families, once denied needed treatment, are now making progress.
6. Approximately one-third of people with autism are nonverbal.
For this reason, Autism Speaks supports research and development of new devices to assist these people to communicate. The organization has donated these assistive communication devices to many thousands of families affected by autism.
7. Assistive communication devices can encourage speech in many children who are nonverbal.
Research sponsored by Autism Speaks found that some children with autism who haven’t spoken by the age of 5 do not necessarily stay nonverbal for the remainder of their life. Some can learn to speak-and assistive devices help them with this process.
8. Autism-related gastrointestinal issues are real.
Research conducted by the Autism Treatment Network has discovered that 50% of children affected by autism have gastrointestinal disorders of various kinds. In fact, the pain from these disorders can cause behavioral symptoms to worsen. Autism Speaks has created treatment guidelines for pediatricians who treat children with autism as well as tools for parents to use in dealing with these issues experienced by their children.
9. Sleep disorders are common in people with autism.
Though sleep disorders occur often in individuals with autism, they are treatable. Autism Speaks has sponsored research that has provided evidence-based tool kits for parents to help their children overcome these disorders. They have also provided medical guidelines for clinicians who treat sleep disorders in people with autism.
10. Epilepsy occurs in nearly one-third of people with autism.
Though they have the potential to be dangerous, not all seizures are obvious to the untrained eye. Special testing is essential in autism health care to rule out epilepsy in people affected by autism.
11. Autism can be a whole-body condition.
Because people with autism have an increased incidence of sleep disturbances, GI disorders, and epilepsy, Autism Speaks recommends that doctors use the “whole-person approach” when providing health care to people with autism.
12. Personalized treatment can now be guided with the aid of whole genome sequencing.
The MSSNG program sponsored by Autism Speaks has changed the future of autism treatment. By performing genome sequencing on thousands of families affected by the condition, researchers receive actionable information that can help them develop new, more focused medications for autism.
13. The environment plays a significant role in causing autism.
A few years ago, experts thought that autism was entirely hereditary. After more research, the Autism Genetic Resource Exchange, a branch of Autism Speaks, discovered that influences that are non-hereditary contribute about half of the risk of a child developing autism.
14. Research has identified a few of the environmental factors that can give rise to autism.
If a mother has had an infection or has been exposed to air pollution during her pregnancy, the risk of her child developing autism increases. Prospective mothers who take prenatal vitamins prior to conception and continue to take them after they become pregnant can reduce the risk of their child developing autism.
15. Almost 50% of people with autism have a tendency to bolt or wander off.
Autism Speaks funds programs to prevent people with autism from wandering or bolting. They also educate first responders about these tendencies in people affected by autism.
16. Bullying affects almost two-thirds of children who have autism.
Together with the National Center for Learning Disabilities, Autism Speaks has raised awareness of bullying children who have special needs.
17. Eighty-four percent of adults with autism still live in their parents’ home.
Autism Speaks has petitioned government officials, both federal and state, to enact policies that will provide more options for living arrangements for adults affected by autism.
18. Almost half of 25-year-old adults who struggle with autism have never had regular paid employment.
In partnership with employers and educators, Autism Speaks continues to advocate for more support for young adults with autism at both vocational and post-secondary institutions, as well as for employment opportunities for them following graduation.
19. Every year, 50,000 teenagers either graduate from high school or become too old to receive school-based services for autism.
Autism Speaks works with private and public institutions to support individuals with autism as they make the transition to adulthood. With their support, these individuals can share their many valuable gifts with their communities.
20. The cost faced by families affected by autism over one person’s lifetime is usually between $1.4 million to $2.4 million.
Depending upon if the person with autism also has an intellectual disability, these costs can increase or decrease. Early diagnosis and quality interventions, along with support when people with autism make the transition into adulthood, can help to decrease these costs considerably.