From Child to Adult, Challenges and Resources for People with Autism
- Planeta Venus
- hace 6 días
- 5 Min. de lectura
Wichita Kansas | April 9, 2025
By Claudia Amaro | Planeta Venus
April is Autism Awareness Month. We often hear or read about autism, especially in children, but what happens to those children when they reach adolescence and adulthood?
According to the renowned Mayo Clinic, autism spectrum disorder is a brain development disorder that affects how a person perceives and socializes with others, causing difficulties in social interaction and communication. The disorder also involves restricted and repetitive behaviors. The term "spectrum" in autism spectrum disorder refers to a wide range of symptoms and severity.
There is still a lot of misinformation about autism in our society, which makes it even more difficult to include people with this disorder in our social circles.
Brenda Amaro, mother of a young man with autism, has dedicated her life to supporting parents who have children with autism or other disabilities. She founded the Facebook page Mamás con Mayúsculas to share information about autism. Amaro has not only lived the experience of having a child with autism, but she also volunteered and worked for years with organizations that educate parents of children with disabilities about their rights, both in schools and in civic life.
Amaro simply describes autism as a condition of life. When asked what has been the greatest challenge of having a child with autism, she responds: “Educating. Educating about autism without feeling judged.” As a community worker, her greatest challenge, she tells us, is facing society’s taboos and finding the middle ground to avoid confusing families when she gives talks or is asked for advice. She also shares that there are many stereotypes that seek to label people with autism, such as when people comment that a child or young adult doesn’t seem to have autism because they appear very intelligent. Amaro says that having autism doesn’t mean a person can’t be intelligent and that there are many variables in each individual with autism.
There are several organizations that offer services to children with autism, but there are few places or programs for young adults and adults with autism. Adults with autism spectrum disorder (ASD) face a unique set of challenges and opportunities that affect various aspects of their lives. Understanding these factors is crucial to developing effective support systems and resources in our communities.
According to VeryWell Mind, a reliable website that provides mental health resources, the challenges faced by adults with autism include:
Employment: People with autism often have difficulties securing and maintaining employment due to challenges with social communication and workplace dynamics. However, many individuals have strengths such as attention to detail and dedication, which can be valuable in suitable jobs. Some companies have implemented neurodiversity programs to better support employees with autism.
Social Interaction: Managing relationships can be difficult due to differences in communication styles and social understanding. This can lead to feelings of isolation and the need for personalized social support.
Daily Living Skills: Managing daily tasks such as time management, budgeting, and self-care may require additional support.
Transition to Adult Services: Upon turning 22, individuals often lose access to services under the Individuals with Disabilities Education Act (IDEA) and must transition to adult services, which can vary widely in availability and quality.
Another taboo topic Amaro shared with us was sexuality: “Many teenagers face hormonal changes, but mentally they are still in a childhood stage. Many become more aggressive because they don’t understand what is happening to them, like in the case of girls whose breasts start to grow and young men begin to experience erections, and often families aren’t prepared to talk about sexuality with their children or to understand them.”
The legal aspect is crucial for families with a person with a disability or, in this case, with autism. Amaro has accompanied many families to school meetings where they must advocate for the rights of children with autism. Brenda points out: “From childhood, it is very important to understand the legal aspects. Families don’t have to wait until the person grows up or turns 18.” Amaro gives the example of the IEP (Individualized Education Plan): “It’s a legal matter. Many people avoid the IEP because they don’t want to label their child. It’s not so much labeling, it’s also protecting them in some way. Besides, it’s an individual plan for the child, and it also protects them if the child becomes aggressive, because the behavior plan, or 504 plan, also applies. These are plans that protect both the child and the family.”
Another important legal issue is guardianship. Caregivers of people with autism who interact with their doctors are often required to become guardians to make appointments, access medical records, and make important decisions in case of an emergency. Amaro recommends that those who plan to be guardians of adults with autism not wait until they turn 18. Many people skip this step, and if an emergency arises, it can be a very stressful process. The recommendation is to do this while the person is still in high school, as at that time, the documents, such as school records and up-to-date vaccinations, are more readily available.
Support Strategies and Recommendations
Strengths-Based Approaches: Focusing on the strengths and unique abilities of people with autism can improve self-esteem and generate more effective support strategies.
Community Integration: Encouraging participation in community activities and support groups can help build social networks and reduce feelings of isolation.
Workplace Support: Utilizing vocational training programs and seeking employers who offer supportive work environments can improve employment opportunities.
Advocacy and Self-Determination: Empowering people with autism to advocate for their needs and preferences ensures that support systems are aligned with their personal goals.
Amaro describes her experience of transitioning from being a mother of a child with autism to being a mother of an adult with autism as a duality of feelings: “It’s a difficult experience, but also one that makes me feel proud. Why? Because you realize that you’ve overcome many challenges you thought you wouldn’t, and you enter into a very different phase where you have to start from scratch and leave behind everything you had been advocating for and learning about for so many years.”
Rainbows United, an organization based in Wichita, has compiled a comprehensive list of local resources for people with autism. You can download it HERE.
Other Resources:
Offers resources tailored for autistic adults, including information on employment support, social networks, and advocacy opportunities.
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