Living in a Community| Relationships | Self-Determination and leadership
The questions above are some of the many that young people will ask as they approach adult life. Their parents may ask related questions such as:
- “Will my child be able to live in the community when they are an adult?”
- “Where will they live when they get older?”
- “What help will they need and who will provide it?”
- “What skills do they need to have to live as independently as possible?”
The answers to these questions may be discovered by searching for information within your community about services and supports, by planning ahead and by providing opportunities for adolescents to participate in their community.
Living in the Community
Being part of the community is a key component of happiness and independence in the lives of adults with autism. Participation in recreation events, community organizations or being a part of a religious community will provide enjoyment and a sense of belonging. There are several things to consider when preparing for living on your own. A good resource for helping to explore what you will need for living as independently as possible in your community is the Autism Speaks Transition Toolkit.
Some people will need more support than others for community living. In fact, some may need specific planning and instruction to learn the skills for home living, such as: cooking and cleaning, travel and transportation, money management, and socialization. Centers for Independent Living can assist with this type of instruction and are located within regions of a state. There are twenty-two centers located in Missouri that provide four core services: advocacy, information and referral services, independent living skills, and peer support. For centers in your area, click here.
Determining where you will live can be one of the most difficult issues of the transition process for individuals with ASD. One of the most important things to do is to make sure that the needed supports are in place for whatever residential option is chosen. Having adequate support from the onset is the key to success. Sometimes finding the level of support needed to ensure that an individual can live a quality life in their community can be a challenge. Even when individuals with more significant needs have received intensive instruction through programs such as TEACCH or other functional life skills programs, they may continue to need twenty-four hour support and supervision during their adult life. Often there are long wait lists for residential services that provide the most independence as possible and also a safe environment. The PBS video, Losing the safety net: Adults with autism, shows two families who are trying to prepare their sons with autism to live in their community while facing the common barriers toward that vision.
For accessible housing resources in your area, click here. County boards provide case management and direct services for people with developmental disabilities in Missouri under Senate Bill 40. One of these services may be residential support based on the individual meeting eligibility requirements. For more information about providers in your county, click here.
Autism and sexuality is a complex issue because many people experience difficulties in social interaction, emotional response and communication. Just as early intervention is effective in treating autism, early training in sexuality can be beneficial. You can begin by teaching social skills that relate to issues like personal space and appropriate touching. It is important to teach children about personal safety to protect them from becoming victims of sexual abuse. Teenagers and adults with autism need to learn about the social aspects of sexuality to prevent inappropriate behavior and to encourage healthy attitudes toward relationships with peers. Download Guidelines for Comprehensive Sexuality Education by clicking here.
Social Competence and the Hidden Curriculum
Developing social competence is an area of need for most individuals with Autism Spectrum Disorder (ASD). It is important to use interventions that demonstrate the ability to generalize across experiences and assist the individual in building a toolbox of social skills from which they can draw upon as needed.
iSocial is a three dimensional virtual learning environment, for teaching social competence to youth who have been diagnosed with Autism Spectrum Disorders (ASD). The goal of iSocial is to provide learners with competencies that make social participation possible in both virtual and natural settings.
Individuals with Autism Spectrum Disorder (ASD) may interpret some situations literally when in fact there is a “hidden curriculum” or rule that is necessary to apply in order to have a correct interpretation. The “hidden curriculum” refers to the unstated rules impacting social interactions, educational performance and safety that are not directly taught. Violation of these rules can cause an individual to not be accepted in social situations. In the book, The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations, the authors, Myles, Trautman and Shelvan discuss various examples of hidden curriculum items and instructional strategies for teaching the hidden curriculum. For instance, do you know how close to stand to someone in the check-up line at the store? What about the rules for choosing a stall in a public bathroom when others are already in the bathroom? How can you tell if someone is angry by their body language? What about how to exchange conversation while at the dinner table? For individuals who may have difficulty understanding the “hidden curriculum” rules, the skills in certain situations may need to be explicitly taught with written rules to follow.
Part of developing a relationship with peers is having a feeling of belonging and being accepted. Fitting in with a group is important to teens. When an individual is singled out in a group for being different they may suffer feelings of inferiority and a loss of self-esteem. Erik Miller and Bobby Backus talk about the importance of getting to know someone and why everyone has the right to be treated with fairness and respect.
"“We’re all people who live on the same planet” ."- Erik Miller
When an individual is exposed, repeatedly and over time, to negative actions on the part of one or more other persons, and he or she has difficulty defending himself or herself"
they are the victim of bullying. Below are two websites that offer suggestions for what to do when someone is experiencing bullying:
Bullying Students with Disabilities: How to Fight Back
Self-Determination and Self-Advocacy
Self-Determination means that you are in control of your life. Self-Advocacy means that you speak up for yourself and let others know what you need. To become a leader and to be a self-determined person, it is important to accept who you are and to know yourself. This allows you to have control of your life and make informed decisions. By knowing yourself you will understand what supports you may need in order to live independently.
The Pennsylvania Youth Leadership Network: Secondary Transition Toolkit will help you learn the skills for self advocacy.
As a member of a community all youth need to become self-advocates to the best of their ability. Each youth has something unique to contribute based on his or her life experiences. Youth can be active in helping to determine disability policy and solving disability related issues. Often, the biggest barrier for youth with disabilities is not receiving the information that they need about issues that are important for their lives. Because of this they can not make fully informed decisions. As youth prepare for living in the community, they need information on available and affordable housing. They also need to know how to manage money, find transportation and how to develop relationships with friends. Find more information for youth about housing assistance, transportation, getting ready to work, recreation, understanding sexuality and voting from the National Youth Leadership Network.