We asked you what you wanted to know about autism, and you responded with thought-provoking and important questions. We categorized your questions to get a better idea of what you were curious about. The chart shows these categories. Below you will find responses to many of your questions. Please remember that this information is for educational purposes only. It is not a substitute for the advice of a clinical professional.
School, Services and Policy
- Several parents asked how to get effective autism services from their public schools, how to convince school personnel that a child’s “high-functioning autism” affects his or her schoolwork and how to manage the special education process. You can listen to a recorded webinar with attorney Gary Mayerson, the founder of Mayerson and Associates, a civil rights law firm focused on representing individuals with autism. In the webinar, “Advocating for Your Loved One with Autism“, he discusses effective Individualized Education Program (IEP) meetings and how to make the case for services and assessments.
- You asked about finding a college for students with ASD. The article “Finding a College Program for Students with Autism” has information on finding a U.S. college program for students with intellectual disabilities. It also covers obtaining accommodations, aids and services for any student with autism, even those accepted to selective colleges and universities. The article “Autism and the College Experience” addresses the skills needed for the transition to college.
- Many of you asked how to find support groups for parents, in-home support services for children and adults with autism, social opportunities for teens and adults with ASD and clinics that specialize in ASD. To learn more about government services, families and adults with ASD may contact the agency responsible for disability services in their state. In the case of children, their school, case manager or special education team leader may have a list of resources. Disability organizations, such as the Autism Society of America, Autism Speaks, The Arc, Easter Seals and Special Olympics, among other groups, can also provide families and adults with information on support groups, programs, activities and services in their community. You can find a list of autism organizations that partner with SPARK here. Similarly, if you live near a major university or hospital, staff there may be able to steer you to programs and clinics for children and adults with ASD. You can find a list of autism centers, hospitals and universities that partner with SPARK here.
- A number of you asked about housing, financial support, services and jobs for adults with autism. You wanted to know why wait lists for services are so long and why your adult child cannot get assistance. The federal and state governments fund adult services, which usually vary from state to state. You can contact your state and federal government representatives about funding priorities and issues. Some organizations work to influence U.S. policies and programs related to autism. These include Autism Speaks, the Autism Society of America and the Autistic Self Advocacy Network, among others. You also can follow the Interagency Autism Coordinating Committee, or IACC, a federal committee that advises the Secretary of Health and Human Services about autism. IACC takes public comments at its meetings and publishes transcripts and other materials for the public.
- A number of you asked about managing your child’s anger, aggressive and destructive behaviors, and meltdowns. Your child’s physician and mental health care provider can answer questions about which behavior management strategies and/or medications may help your child. To learn more about research-based behavioral strategies for managing challenging behavior, you may listen to recorded webinars with Jed Baker, Ph.D., and behavior analyst Bridget A. Taylor, Psy.D., and read “Children with Autism and Aggression.” In another recorded webinar, Jeremy Veenstra-VanderWeele, M.D., a child psychiatrist, discusses “Autism Treatments: What We Know and Don’t Know.”
- A few of you asked about practical strategies for improving your child’s or teenager’s social skills and organizational skills. Jed Baker, Ph.D., director of the Social Skills Training Project, provides tips in “Managing Frustration and Anxiety and Teaching Social Skills“, a recorded webinar.
- You asked why your preschool child with ASD seems to have fewer behavior problems at school than at home, according to what the teacher has told you. Parents can request to observe their child at school to see how he or she behaves there and how the teacher responds to the behavior. Many schools will share behavior management techniques, supplies such as picture schedules and other tips with parents.
Causes and Prevalence
- Many of you asked about the causes of autism and why so many people have it. You wanted to know if autism is genetic or environmental or both. Researchers are learning that there are many types of autism and many causes. That’s why it’s referred to as a spectrum of disorders. We are just beginning to uncover the answers; we simply don’t know enough yet. Please view a TED talk by Wendy Chung, M.D., Ph.D., about what we do know and what you can do to help. Chung’s recorded webinar “Is Autism Genetic?” also provides answers to some of these questions.
- One person asked about the prevalence of autism in transgender people. Researchers are now exploring transgender identity among people with ASD. Some evidence is now emerging that the prevalence is higher than in the general population. There needs to be more research on this topic. You can learn more in the article “Living Between Genders“.
Treatments and Therapies
- Several parents asked about evidence-based therapies to improve the major symptoms of autism. The National Autism Center’s National Standards Project, which examines autism research, lists a number of “established interventions” — therapies that have sufficient research behind them — for people under age 22. Its list of 14 established interventions includes behavioral interventions, intensive early intervention involving applied behavior analysis, Pivotal Response Treatment, story-based interventions such as Social Stories, activity schedules and parent training programs such as the Early Start Denver Model.
- Several people asked about seizures, epilepsy and autism. They wanted to know if there were undetected cases and whether screening people with autism for epilepsy was part of the standard of care. Seizure disorders occur more frequently in people with autism than in the general population. Estimates vary from 10 to 30 percent. As far as we know, there are no standards or recommendations that physicians screen people diagnosed with ASD for epilepsy. Parents and physicians should be alert to the possibility that the individual with ASD may have or develop epilepsy. To learn more, visit these resources published by Autism Speaks: Recognizing & Treating Epilepsy in Individuals with Autism and Family Services Resources on Autism and Epilepsy.
- You asked about the use of psychiatric medications in children with autism, including drugs prescribed for symptoms of attention deficit hyperactivity disorder. In a recorded webinar, Jeremy Veenstra-VanderWeele, M.D., a child psychiatrist, discusses “Autism Treatments: What We Know and Don’t Know.”
- You asked how to manage sleep problems in a child with autism. Beth Ann Malow, M.D., a nationally recognized expert on the sleep problems of people with autism, discusses sleep challenges faced by many with ASD, as well as the causes and treatment, in this recorded webinar.
- Several of you asked if alternative treatments, diets and natural remedies are effective for autism. A good way to evaluate a treatment is to see if it has been studied for safety and effectiveness by researchers using the scientific method. One resource is the National Autism Center’s National Standards Project, which examines and summarizes autism research in reports that you may download for free. Similarly, the Cochrane organization evaluates and summarizes research on medications and health care. Researchers need families like yours to participate in autism research so that therapies and treatments can be scientifically evaluated.
- You asked about the link between ASD and schizophrenia and whether stress can cause someone with ASD to develop symptoms similar to schizophrenia. Psychiatric conditions including schizophrenia, bipolar disorder, and depression are more common in adults with autism than in the general population, according to research by Kaiser Permanente Northern California. Researchers do not know exactly what causes the linkage. Some psychiatric conditions tend to run in families and may have genetic causes.
- We received a number of questions about girls and autism. Scientists are still exploring the differences between what autism looks like in girls and in boys and whether some girls with ASD are going undiagnosed. To learn more about the current research on girls, this recorded webinar, this Q&A and this article are good places to start.
- Several people asked about the relationship between gut (gastrointestinal/GI) problems and ASD. Researchers are learning more and more every day, but questions remain. You can learn about the current state of gut research in this article and by exploring this set of stories.
- We were asked where to find good information about connections between autism and gut bacteria. Scientists are just beginning to explore this topic. A great place to learn about our current knowledge is this article about how microbes shape autism.
- You wanted to know how to help people with autism deal with the challenges that come along during the teen and young adult years. Several articles address these issues, including “Autism in the Teen Years: What to Expect, How to Help“, and “Daily Living Skills: A Key to Independence for People with Autism.” Also, Mary E. McDonald, Ph.D., discusses how to prepare children and teens with ASD for adulthood in this video presentation on “Adulting.”
- Currently, clinicians make an ASD diagnosis by observing behavior. Several people asked how the diagnosis of ASD might change as we learn more about genetics and autism gene variants. Will individuals receive a genetics-based (or neurobiology-based) diagnosis instead of a diagnosis of ASD (which is largely based on behavior)? For some single-gene causes of ASD, this may be the case, especially if the gene variation is also associated with other characteristics that are not part of the core symptoms of autism. More likely is that children will receive both a genetics/neurobiology-based diagnosis and the behavior-based diagnosis of ASD. People with both fragile X and autism, for example, currently receive such dual diagnoses. Many children will likely have multiple genetic variants that work together to produce the symptoms of autism. For these children, it will probably be many years before we understand enough about gene-gene interactions to group them into specific diagnostic categories. So behavior-based diagnosis of ASD is likely to stick around for some time.
- Many of you asked about the return of genetic results from SPARK. We will provide genetic results in the form of a clinical report only if a genetic change associated with autism is discovered. We currently return results to individuals based on a list of over 50 genes that are associated with autism. Using this list, and given our current understanding of genetics, we estimate that only 5 to 10 percent of participants will have a result to return.
- However, we expect the percentage to increase quickly over the next few years. As more genetic research (including SPARK research) is done to understand autism, we will discover more genes that are related to the condition. Even if we do not discover a genetic finding related to autism this year, we will reanalyze participant data every year, so a result may be forthcoming in future years. Experts in the field of genetic research believe that there are over 300 genes related to autism.
- We can learn more together through your participation! For more information, please visit our FAQ page. You can also watch a recorded webinar on genetics on our website. This webinar provides more information about the SPARK study and about genetics and autism in general.
- We received a question about publications from SPARK. We will begin publishing results from the SPARK study in 2017! Stay tuned through our newsletter and our Facebook page for the latest updates.
General Questions about Autism
- A couple of you asked how the spectrum of autism manifests in people with different needs and abilities. A good place to start is the TED talk given by Wendy Chung, M.D., Ph.D.
- You wanted to know why some children with autism repeat words and phrases and have other repetitive behaviors. Repetitive motions and obsessive interests are a core symptom of autism, and they are among the first signs of ASD to appear in toddlers. Researchers have various theories as to why they occur. Sensory sensitivities appear related to repetitive behaviors in some people, as do anxiety and other issues. You can learn more about these behaviors and interests in this article.
- An adult on the autism spectrum asked how he/she could participate in local research. Thanks for asking! Research participation by adults is of critical importance. Currently, there are few studies with adult participants. But you can find out if there is a study that you qualify for by going to the websites of nearby autism clinics and universities and searching their sites. In addition, we recommend that you find out more about participating in SPARK. SPARK is open to adults with ASD. By joining SPARK, not only will you be participating in the SPARK study but also SPARK will contact you about other local and national studies that are looking for participants like you. You can learn more about participation by reading our FAQ page.
- Someone asked how life experiences can be shared with others. SPARK offers two ways to do this. You can participate in our research study so that your information can be collected in a standardized manner and interpreted along with the information from others. You can also email us at info@SPARKforAutism.org to let us know that you are available for interviews that will be used in the ‘Stories‘ section of Discover SPARK.