Unit II: Adult Living
1. Living with family
2. Respite care & foster home
3. Independent living options: Group Homes, Cluster of homes
4. Sexuality & marriage
5. Use of community facilities
1. Living with family
Staying at home with parents or other relatives: From the limited research that exists, it is fair to say that well over half of autistic adults live with parents or other family members (siblings, cousins, aunts, and uncles, for example). Staying at home with family has the advantage of avoiding issues of transition related to living arrangements in the short term, but, should an unforeseen circumstance render the caregiver unable to continue in this role, the autistic adult may be uprooted unexpectedly. Family members provide daily living support, with or without the assistance of privately or publicly provided in-home assistance. Housing expenses and support programs are financed with a combination of parents’ income, any income the autistic individual makes, and public benefits, such as Medicaid, Medicaid waivers, Supplemental Security Income, and/or Social Security Disability Insurance.
Too many adults with autism and their parents are resource poor and are competing with single moms on welfare, people with mental illness, people with developmental disabilities, people with physical limitations and the elderly for affordable housing in a scarce market. In addition, residential funding is on the decline while the numbers of autistic adults are on the rise.
The quality of life for too many adult children hangs on parent ability to continue living with them. This, of course, is impossible indefinitely becauseparent are not engineered to outlast them. Planning and implementing successful outcomes for children’s future without parents in it is not just emotionally overwhelming, it is virtually impossible to accomplish without more support!
2. Respite care & foster home
Respite Care. Some individuals with autism remain in their parents’ home far into their adult years. Sometimes families receive respite care where a professional comes to the home and provides support services to allow the parents to partake in their own personal, recreational or social activities.
The many types of respite care include:
Another option that families enjoy is respite care offered through parent "co-ops." This is when families of kids with special needs take turns watching each other's kids. For example, you can take someone else's child for one day or evening a month, and that person can do the same for you. Support groups for families with your child's condition are a good place to meet other families.
Adult Foster Care: Adult foster care consists of an adult living in a family setting other than with his or her own parents or relatives. The states regulate adult foster care, just like foster care for juveniles. Adult foster parents may be compensated by state agencies or Medicaid or by the autistic individual and his or her family. If the autistic adult receives Supplemental Security Income (SSI), this can be used to pay the foster care family.
Foster care is a system in which children, youth, and young adults are temporarily placed outside of their birth family’s home. Placements may be with a family relative or a certified foster parent, in a group home setting or in a residential program. The state maintains oversight of this child-focused system through the involvement of the courts and child protection service agencies. Increasingly, most states have recognized that group care, in which young people are placed in group homes or in a residential setting, is not the best option for youth in need of out-of-home care. As such, other options, such as family care and foster parenting, have undergone extensive and robust development, utilized as often and whenever possible. The general types of foster care include family/kinship care where the youth is placed with someone related by biology or marriage, placement in emergency shelters, traditional county-level foster care (placement with a certified foster parent.
3. Independent living options: Group Homes, Cluster of homes
Independent living means that a person lives in his or her own apartment or house and needs limited help from outside agencies. The person might need help with only complex issues such as managing money, rather than day-to-day living skills. Whether an adult with ASD continues to live at home or moves out into the community depends in large part on his or her ability to manage everyday tasks with little or no help. For example, can the person clean the house, cook, shop, and pay bills? Is he or she able to use public transportation? Many families prefer to start with some supported living arrangements and move towards increased independence.
Some autistic adults are capable of living completely independently. Of course, like all people, it is a good idea to have a support system in place: friends, coworkers, family who can be contacted in the event of illness, tragedy, or even just loneliness. Adults may own their own place or rent (an apartment, house, room in another family’s home, etc.). Adults living on their own (or with a roommate) may qualify for housing assistance, such as housing choice vouchers, which is a program run by the federal government that assists very low-income families, the elderly, and the disabled to afford decent, safe, and sanitary housing in the private market. Other public benefits may also be used for support services, as allowed by the particular program.
Not all adults on the autism spectrum are capable or are ready of living completely independently. Fortunately there are options other than staying put and being completely self-sufficient. Which one is right for your situation will depending on the individual’s level of independence and needs for support as well as what is affordable, given any government benefits that may be available and the family’s financial resources. This article discusses some of the options for housing used by many autistic adults.
Institutions: Institutions, sometimes called developmental centers, are large care facilities, sometimes far from home, or even in a different state. All supportive services are delivered by staff within the facility. In general, the state in which an autistic individual lives will need to approve of the placement if state funding is to be provided. (A United States Supreme Court ruling in 1999 held in Olmstead v. L.C. that confining individuals with disabilities in state institutions for no medical reason is a form of discrimination that violates the Americans with Disabilities Act of 1990 and that individuals with disabilities should receive community-based services whenever appropriate.) State funding may come through a Medicaid waiver or other Medicaid program such as Intermediate Care Facilities for Individuals with Mental Retardation (ICF/MR funding). Families may also pay privately for the placement and associated services. Prior to the 1970s, autistic individuals were routinely institutionalized, rather than being integrated into the community. While institutionalization is now a less-preferred option for many families, some nonetheless choose this option because of the stability of the placement (assuming stable funding) and the predictability of care. However, as stated by the Supreme Court in Olmstead, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” Many states are closing many of the institutions which previously housed autistic individuals and those with other disabilities; thus, the stability of institutional placement is questionable.
Group home: Group homes are community-based houses in which several unrelated people with disabilities live alongside rotating support staff, who ensure that there is help available at all times. Some are exclusive to autistic individuals; others are not disability specific. State and local regulations may cap the number of residents allowed. In general, a group home may contain three or four residents with disabilities. Group homes are owned by agencies, which also employ, train, and supervise the staff. Support staff are charged with fostering independent living skills both in-home and out in the community. Finding a group home placement can be difficult, however. Zoning regulations as well as funding limit the number of group homes available in a particular community or state. Group homes may be financed with a combination of parents’ income, any income the autistic individual makes, and public benefits, such as Medicaid, Medicaid waivers, Supplemental Security Income, and/or Social Security Disability Insurance.
Cooperative Living: “Co-ops” are similar to group homes, except the house itself is owned by a group of families or individuals who have formed a cooperative agreement. The group hires an agency or independent caregivers to support the residents within the home. The families or individuals involved in setting up the co-op may choose to form a limited liability company (LLC), an entity similar to a corporation, which provides liability protection. If you are interested in setting up a co-op, be sure to consult an attorney who can not only guide you through the legal technicalities of setting one up, but who can also help guide you in securing a location that doesn’t violate zoning or other ordinances. In addition to personal finances, public benefits may be used to pay for support services.
Supervised Living: Supervised living is similar to a group home or co-op in that the autistic individual may live with a support provider. However, the support provider in supervised living may not provide as much hands-on support; instead the support provider’s role is to “supervise” and be available as needed. Depending on the number of unrelated individuals living in the home, zoning may be an issue. Funding for supervised living may come from a combination of parents’ income, any income the autistic individual makes, and public benefits.
Supported Living: Adults who wish to live in a home or apartment, but who need some level of support to do so successfully, may contract with agencies or independent service providers to check-in and help with tasks of daily living. For example, an aide can be hired to come to the house on weekday mornings to help the autistic individual get ready for the day (work or a day program, for example), to help prepare meals, and/or to assist with finances. The adult may live on his or her own or have roommates. Funding for supported living may come from a combination of personal finances and public benefits.
4. Sexuality & marriage
Sexual development is a complex process that includes sexuality in relation to oneself and others. Sexuality encompasses a broad variety of physical, emotional, and social interactions. It includes sexual beliefs, attitudes, knowledge, values, and behavior and concerns the anatomy, physiology, and biochemistry of the sexual response system. Sexuality involves one’s thoughts, feelings, behaviors, relationships, roles, identity, and personality.
Like nonaffected adults, individuals with autism spectrum disorders (ASDs) show the entire range of sexual behaviors. However, due to the core symptoms of the disorder spectrum, including deficits in social skills, sensory hypo- and hypersensitivities, and repetitive behaviors, some ASD individuals might develop quantitatively above-average or nonnormative sexual behaviors and interests.
The sexual experiences of individuals with ASD are often guided by mischaracterizations of what sexual activity looks like for someone with autism (Barnett & Maticka-Tyndale, 2015). When engaging in sexual behaviors and activities, people with autism often experience sensory dysregulation and difficulty interpreting social cues, which may negatively influence their sexual experiences (Byers et al., 2013; Rosqvist, 2014). Additionally, an individual with autism’s engagement in sexual activities is influenced by their sexual identity and the sex education received (Ballan & Freyer, 2017). The unique qualities and challenges of an individual with autism warrants a sex education that targets the specific educational needs of ASD individuals (May et al., 2017). The current research on the sexual experiences and sex education of individuals with ASD is limited and has been primarily conducted on people with ASD who require limited support, and excludes those who require very substantial support. Therefore, future research should include individuals with autism who require substantial, or very substantial support and explore how individuals with both an ASD diagnosis and a non-heterosexual identity engages in sexual experiences. With more research on this topic, comprehensive sexual education programs can be developed for people on the spectrum, in turn promoting a safer and higher quality of life for individuals with ASD.
A diagnosis of ASD does not need to prevent anyone from getting married. Just as in any relationship, individuals with ASD need partners who are understanding and respectful of their needs. Sometimes they may need to have a more direct communication style in which partners clearly explain what they want and need instead of waiting for them to intuit it. This is not necessarily limited to couples where one individual has ASD. All couples need to find their own mode of communication that works for them. An experienced couples therapist can often help adults with ASD to navigate a romantic relationship. In fact, couples therapy techniques already focus on teaching couples to take turns talking and make sure they understand each other, and are not created with ASD in mind.
5. Use of community facilities
Individuals on the autism spectrum can often feel isolated from their communities. They may not be integrated into social activities or have a lot of opportunity to try new recreational outings with peers their age. This can be especially true for older teens and adults. As their classmates and co-workers tend to socialize without the support of their parents, students with autism can be left out.
Studies have found that young adulthood is a high-risk developmental period for the onset of mental health conditions, particularly depression and anxiety, in the ASD population. Creating opportunities for social engagement for individuals with ASD during adulthood may improve quality of life as well as lessen the impact of co-morbid conditions or exacerbated autism symptoms.
Adults with autism can be active participants in all areas of community life including social and recreational activities. Community Partners help facilitate programs and services for children, youth, and adults with autism by providing spaces and places for learning opportunities and engagement.
Organizations such as these can provide a range of services from the early years right through to adulthood. The aims of these types of organizations are:
Awareness and understanding can be gained from campaigns and also from different kinds of workshops or conferences where service providers, professionals, and parents can be trained and educated about the different aspects of autism (i.e., interventions, therapies, and approaches or understanding behavior).
Local family and community services are available for both children and adults such as respite care and short breaks. This enables primary caregivers to have time to catch up with appointments, have some leisure time, or simply have a few private hours. Parents can offer a cheap or no cost day care option to one another by agreeing to take turns in looking after a child with autism. Belonging to a support group is a great way to meet other parents and share information and experiences.