FREQUENTLY ASKED QUESTIONS ABOUT AUTISM
WHAT IS AUTISM?
Autism is a neurodevelopmental disorder, characterized by its hallmark features of challenges in social communication, in some difficulty with language, as well as restrictive and/or repetitive behaviors. It it typically diagnosed in early childhood, but often times, even with appropriate services, challenges can persist into adulthood, often depending on the severity of the symptoms.What does it mean to be on “the spectrum"?
what does it mean to be on the "spectrum"?
Autism is a spectrum disorder because the presentation and severity of symptoms can differ greatly from person to person. Some individuals with autism are non-verbal, some have co-occurring intellectual disability, and some can have compulsive or self-injurious behaviors. Some less severely affected individuals might have language and more manageable behavioral challenges, but struggle with aspects of social interaction such as making eye-contact and reading social cues.
What causes autism?
There is no known single cause of autism. Rather autism is the result of a complex interaction between genetic factors and environmental factors. There are a growing number of genetic factors - abnormalities in one's genes - that have been found to play a role in autism, but only slightly increase risk. Similarly, there have been a small number of environmental factors found to increase the risk for autism, usually environmental exposures around the time of pregnancy. Autism is also more common among children of older parents, much like other neurodevelopment conditions.
How common is autism among adults?
Exactly how many adults there are with autism in the US is unknown. There has not been a adequate study to determine this. However, a small study from the United Kingdom estimated that about 1% or 1 in 100 adults had autism. Using this number, we can estimate that there are more than 2 million adults with autism in the US. And this may be a conservative estimate. By comparison, the US Centers for Disease Control estimate that among children, autism affects 1 in 59 or 1.69%. Many if not most of these children will carry their autism diagnosis into adulthood, so we can expect the number of adults with autism to continue to grow.
How do adults get diagnosed?
The majority of diagnostic tools used by medical professionals to diagnose autism are designed for use in children. This presents a challenge for diagnosing adults. The ADOS, which represents the gold-standard in diagnostic tools for autism, does have a module specifically designed for use in diagnosing adults. The test involves behavioral observation and can only be administered by a trained professional. Another diagnostic tool - the Autism Spectrum Quotient (AQ) - is a simple self-report questionnaire that may be effective in identifying autism traits among higher-functioning individuals, but is not a sufficient measure for diagnosing autism in adults. Rather, it could serve as a good starting place to have a conversation with your doctor, should you have concerns. Only a formal evaluation with a medical professional can determine an autism diagnosis
what are some of the biggest challenges adults with autism face?
We already mentioned the challenges to getting a formal diagnosis, should you not have one already, but the biggest challenge that many adults with autism fave is accessing services. While there is a growing availability of services for children with autism, once those children reach the age of 18 they can “fall of the services cliff” because they no longer qualify for school-based care. Some medical-based services may still be an option depending on state laws and parent/guardian health insurance coverage, but the system can be very complex for families to navigate. Even if services are available, there can often be long waiting lists because the supply cannot keep up with the growing demand. Similar challenges exist for adult residential housing options for those who seek varying levels of independence in living. While many individuals with autism aspire to attend higher education programs and join the workforce, challenges often exist in finding environments and employers that make accommodations for those with special needs or who need just a little extra support. Even though individuals with autism can excel in these environments and be valuable employees. At its core, many of these challenges still stem from the stigma and misinformation surrounding autism and mental health in general.
How can i help?
First of all, thank you for wanting to help us grow! The mission of Autism Tomorrow is to make opportunities available for adults with autism today - opportunities to reach their fullest potential in society. At this time, there are two ways you can help. First is to spread the word, not just about the mission of Autism Tomorrow, but about the growing number of adults with autism and the need for adult services. It is easy to forget, because autism is thought of as a childhood disorder, that children with autism become adults with autism. The second way to help is to support our fundraising efforts. Every little bit helps us grow the innovative programs that provide adult autism services focused on independent living, employment, and community inclusion.