By Liliane Rocha
Autism Spectrum Disorder (ASD) is a lifelong health issue. While with early intervention, some children may improve to the point that they don’t meet criteria for the diagnosis anymore, most people diagnosed with autism will carry the diagnosis for life. There is a lot of emphasis in treatments for autism during childhood, and not so much guidance about the adult life of individuals with ASD. For example, when describing how autism is treated Autism Speaks describes treatments for early intervention through adolescence (you can read it here). The Center for Disease Control and Prevention (CDC) in their page about “Living with ASD” also emphasizes transitions from adolescence to adulthood (you can read it here). So, what should parents expect for the adult life of their child with autism? Here are a few points to keep in mind:
- Each person with autism is unique, and treatment and supports need to be tailored individually.
- Think about adulthood and preparing your child for independence since the day you first hear the diagnosis. It is natural to want to do things for your child because you feel like you are protecting him. The reality though, is that parents aren’t eternal, and learning to do things for himself gives your child a better chance at success.
- Involve your child in family activities and get-togethers. A natural support network will help your child be supported through life. The more people that care for her, the greater chances that she will be supported for life.
- Connect with other families experiencing ASD. There is strength in numbers, and it is likely that someone in the network has a child who has reached adulthood and you can learn from their experience.
- Believe that your child can be a happy, healthy and productive adult.
Adults with ASD can live a healthy and productive life. They can go to college, work, form relationships, marry. All they need is support. The Organization for Autism Research (OAR) has several guidebook series that offer information on topics such as college and employment. It is a good idea to familiarize yourself with these topics before your child is transitioning to adulthood, so that you can better support him. The Arc for People with Intellectual and Developmental Disabilities (The Arc) offers guidance on this process through their Center for Future Planning.
It is also important to educate yourself about health issues that are common in people with developmental disability such as gastro-intestinal issues, sleep disorder, anxiety, depression, asthma, and seizure disorder. Some of these conditions can be exacerbated by medications, and some may lead to challenging and disruptive behaviors, especially if the patient has expressive language difficulties.
Autism Speaks describes common medical conditions associated with ASD. When planning for adult life, it is also important to take into consideration medical needs. Talk to your healthcare provider about conditions associated with autism and discuss the risks every time a new medication is prescribed. Engage the pediatrician in a discussion about transition. She can be a good resource in finding providers that will be able to support your adult child and can make sure that the transfer of care is seamless.