The history of families of adults with autism somewhat parallels the history of families of children with autism in that the understanding of the nature and causes of autism has changed dramatically over approximately the last 50 years. Although it is now widely accepted that parents of children with autism should be supported and considered part of a treatment planning team, as recently as 40 years ago parents were viewed as part of their child’s problems (Schopler, 1971). Parents were largely blamed for the idiosyncratic and difficult behaviors seen in their children, whose condition was considered an emotional disturbance, not the biologically based disorder that research and practice have shown today. As difficult as it was for parents to raise and cope with these challenging children, dealing with the added burden of blame and guilt was grossly unfair and harmful. Parents who were able to survive through sheer determination, courage, and single-mindedness of purpose still were scarred by their negative experiences with professionals. Others, who were unable to deal with a critical and markedly unhelpful professional community, gave up their struggle, placing their children in institutions. In some instances, parents were told early on to give their child up, partly because of the lack of available services and also because pediatricians and others failed to understand the parent perspective. Professionals today need to be aware of and appreciate what this earlier generation of parents went through and how the professionals of that era contributed to the stress of these parents. In the past decade, the rise in the diagnosis of forms of autism with fewer cognitive impairments, described as either high functioning autism (HFA) or Asperger’s Syndrome, has coincided with identification of these cases in adulthood. Parents of these individuals have not had the benefit of an early diagnosis and support from the autism community and now are faced with the realization that their adult child with autism may require some degree of long-term support and services.

Focusing on the experience of families of adults, although the issue of causation of autism has been more or less resolved over the past 25 years, the interest and awareness of the needs of adults with autism has trailed behind those of children, especially young children. Compared to early childhood, relatively little has been written about autism in adulthood, beyond outcome studies (Howlin, Goode, Hutton, & Rutter, 2004), parental narratives (e.g., Park, 2001), and aspects of treatment and care (Howlin, 2004). More recently, autobiographies of high functioning persons with autism have become popular and have highlighted coping and adjustment problems in this subgroup (e.g., Tammet, 2006). What is known is that the problems of autism continue to some extent, that impairment in cognitive and social adaptation persists, and that the needs for long-range sheltered care and supervised employment pertain to the majority. The assistance that families require is consistent with that required during the preadult years, but the ability of most families to continue to take the initiative in procuring services can be compromised by their declining strength.

Historically, by adulthood most autistic individuals had been institutionalized; however, the recent efforts at deinstitutionalization is likely to all but eliminate that option, and the responsibility of the home and community to arrange for residential care and vocational opportunities has become more prevalent. Expertise in how to help adults with autism has been sorely lacking. Even where there are programs and services, the concern for parents and other family members is less than for families of young children. Ironically and sadly, many parents from earlier decades who struggled to be heard and advocated for services for their young children remain on the sidelines, while the newer generations of parents have seen the proliferation of programs for their children.

Future planning. As soon as parents of a young child receive the diagnosis of an autism spectrum disorder (ASD), among the first questions they ask are “what will happen when my child becomes an adult?” “Will he/she be able to live independently?” “Go to college?” “Get a job?” “Will he/she get married?” Concerns for the future, with the parents throughout their child’s life, reemerge as their child goes through the developmental phases from childhood to adolescence and then again as they transition to becoming an adult.

As the child becomes an adolescent and then an adult, most parents of typically developing children find that their role changes from being the primary caretaker, educator, and financial supporter to having a more removed role in their child’s life. However, for parents of children with disabilities this change may not occur. In fact, for many families of adults with ASD, they may find that they are spending more time caring for children. In 1973, Kanner reported that the majority of 96 individuals who he first saw as children, and were now adults were highly dependent and living with their parents. More recent follow-up studies (Howlin et al., 2004) also show that parents in many instances continue to be the primary caregivers and/or main sources of support for their adult offspring. Mothers are more likely than fathers to be the caregiver with fathers helping with supervision rather than physical care or domestic tasks (Holmes & Carr, 1991). Limited support for caregivers coupled with limited opportunities for the family member with autism to socialize outside the family, be employed, or receive residential support adds to the burden of aging parents (Graetz, 2010).

Surveys of parents of adults indicate that their needs are quite varied (Eaves & Ho, 2008; Hare, Pratt, Burton, Bromley, & Emerson, 2004). The needs of parents of adults are generally comparable to those of parents caring for children with ASD (Bromley, Hare, Davison, & Emerson, 2004). The overriding concern for parents is about future planning including where they will live, where will they work or spend their days, and who will care for them when “I am no longer here.” As their children become young adults, parental dreams change from thinking about whether their child will go to college and get married to hoping that their child will have a happy and meaningful life. In addition to concerns about finding services and planning for the future, parents who are caring for their adults with ASD also need respite and breaks from the day-to-day responsibilities (Hare et al., 2004).

Guilt. When parents first get the diagnosis of autism or any other developmental disability, another frequent response of parents is that they feel guilt and worry that there is something they did or did not do that caused their child’s difficulty (Shea, 1993). It’s important to note that as their children grow up, this sense of guilt never totally disappears. In fact, at each new transition in development the parents once again have concerns that they are not doing everything they need to do to insure their child’s well-being and continued development (Morrell & Palmer, 2006; Van Bourgondien & Griffin, 2011). For parents of adults, the often heard message of the importance of early intervention and the often implied or sometimes directly stated belief in a critical window for intervention during the preschool years can add to their sense of guilt and concern for their child’s future. Many parents recognize that their adults with autism are in fact lifelong learners, yet the relatively limited information about adult issues and interventions adds to the parents of adult’s sense of lack of support (Van Bourgondien & Griffin, 2011).

Guardianship. When adults with ASD reach 18 years of age, in the United States, parents no longer automatically have the legal right to make decisions for them regardless of the individual’s level of intelligence or the ability to care for themselves. The parent needs to make a formal legal petition to be appointed the adult’s guardian. Depending on the laws and statutes in the state, the parent or sibling or another responsible adult can be given full guardianship (usually involving financial, medical, and all decision making) or partial guardianship (responsible for some aspect of care such as health issues, but the adult maintains some rights, e.g., to vote). The decision to seek guardianship of their adult may seem clear cut for parents of individuals who clearly have an intellectual disability and autism. For parents of more able individuals on the spectrum, this decision is more complex. As parents try to respect their children’s desire for adult status, they are also acutely aware of their children’s vulnerability and problems with judgment. Unchecked credit card spending or other poor judgments regarding managing a budget put parents in the difficult dilemma of trying to protect their children while not taking all their rights and decision making away.

Transition planning. In the United States, the federal law IDEA requires that a transition plan be put in place by the time a student with an Individual Education Plan is 14 years of age. Unfortunately, not everyone has a meaningful transition plan developed, and the transition plan is only as good as the available community resources for individuals with ASD as they transition from school between 18 and 22 years of age. A 2008 online survey conducted by the University of Miami/Nova Southeastern University CARD program (Gerhardt & Lanier, 2011) of approximately 200 families of transition age and adults with ASD in Southern Florida found 67 % of families surveyed had no knowledge of available transition programs and settings. The majority (83 %) relied on family members as their primary source of transition planning.

Blacher, Kraemer, and Howell (2010) in a study of parents of 246 young adults (18–26 years of age) with a variety of learning and developmental disabilities found that parents of young adults with autism were significantly more worried about various aspects of transition than were parents of children with Down syndrome, cerebral palsy, or individuals with intellectual disabilities. This concern seems justified given the frequent lack of autism-specific information (Hare et al., 2004) and the results of outcome studies (Howlin et al., 2004) that show the majority of adults with ASD unable to do well in work, personal relationships or independent living. Almost 1/3 of families in a Canadian study (Eaves & Ho, 2008) reported lack of supports, work or an awkward transition to adult funding sources. Adding to the anxiety for parents is the movement from the educational entitlements available up to age 22 into the adult services world with no guarantee of services. At a time when in most families of typically developing youngsters their children are leaving home and becoming more independent, for families with children with disabilities they may actually be spending more time with their adult children because of lack of services (Seltzer & Krauss, 1994). Shattuck, Wagner, Narendorf, Sterzing, and Hensley (2011) reported in a study of children with ASD leaving high school that most children lived with their parents (79 %) and most had a reduction in services as they left school. The odds of not receiving services were significantly higher for African American children and for youth from low income homes. For parents, the adult services world can be more confusing with the greater number of people involved, different agencies and amount of paperwork (Morrell & Palmer, 2006). Hare et al. (2004) cautions service providers that longstanding psychological distress together with social economic disadvantages not only reduce families capacity to provide care, but also affect the parent’s ability to negotiate effectively with the service systems and to take and act on advice.

Clara Park (2001) in writing about her daughter’s transition from childhood to becoming an adult titled her book “Exiting Nirvana” which is descriptive of Jesse’s changes as well as the transition process itself. Coping with their “children’s” development into “adults” presents families with new challenges in finding services, at the same time they experience the familiar guilt and fear that they may not be doing the right thing for their children (Van Bourgondien & Griffin, 2011). For some families their sense of guilt may also make them tenacious advocates for services as they are concerned about not doing everything possible to meet their adult’s needs.

One of the most fundamental challenges of the transition process is what some parents refer to as “Letting go” (Morrell & Palmer, 2006). Regardless of whether it is a parent of a classic individual with autism and intellectual disabilities or the parent of a college bound individual with Asperger’s Syndrome or HFA, the role of the parent changes and the adults with ASD take on a bigger role in advocating for themselves. Professionals working with adults, while still involving family members in some aspects of decision making, develop more direct relationships with the adult. In the ideal situation, the adolescent with autism has been involved in the Individualized Education Plan (IEP) process during high school so that they are taught how to identify their strengths and needs and to learn to ask others for the accommodations they needs.

Post secondary education. A growing number of children with autism especially those with Asperger’s Syndrome or HFA are going on to attend community colleges or 4 year degree programs (VanBergeijk, Klin & Volkmar, 2008). For families, who have been actively involved in their children’s education through public school and the IEP process, they are used to meeting with teachers and school officials to share information about their child’s learning style and to advocate for accommodations and services. In post secondary education, this responsibility falls completely on the individual with ASD. The college student needs to be the person who contacts the college Disability Services program and to be able to talk with the professor about individual learning needs and accommodations. This change in responsibility for advocacy takes preparation for both the individual (young adult) with ASD and their parents (Palmer, 2006). In addition due to the student’s difficulties in organizational skills, interpersonal skills and general self care, families find themselves focusing more on how to help their children with the non-academic aspects of college living (Palmer, 2006) or else some college bound students continue to live at home with parental support in order to only change one aspect of their life at a time. For most typical students, it is often the indirect aspects of the college experience that prepares them for a job after graduation (Van Bergeijk et al., 2008). These skills include communication skills, work habits, team building, time management, and problem solving skills. Parents of individuals with ASD often have to recognize and then help their college bound children understand the difference between having a degree and having the skills needed to do a job.

Day services/employment. Parents hope that their child will have fulfilling work that is meaningful to them (Morrell & Palmer, 2006). Unfortunately, the data indicate that most adults with autism are either underemployed or unemployed (Gerhardt & Lanier, 2011; Howlin et al., 2004). In the 2008 CARD Center online survey (Gerhardt & Lanier, 2011) only 19 % of parents reported being familiar with agencies or professionals who can help with job development. Individuals with ASD and intellectual disabilities may be provided with day services in the form of a sheltered workshop or day program that may include some combination of work, volunteer, leisure activities or chores (Gerhardt & Lanier, 2011; Howlin et al., 2004; Saldana et al., 2009), though the availability of these services varies greatly upon the person’s location and available funding sources. Lack of day services puts stress on families as parents end up staying home to care and supervise their adult offspring with the possible loss of income from the parents not being able to work (Hare et al., 2004; Saldana et al., 2009). In their study of 26 families of adults in England, Hare et al. (2004) found a significant positive correlation between formal support, family’s weekly income, receipt of autism-specific day care and families’ total satisfaction scores with day services.

Living situations. One of the top concerns of families is finding an appropriate living situation for their adults with ASD. Outcome studies have shown a wide range of variation in the number of individuals with autism who have left home to live independently, in a group home, or some supported living arrangement. A number of studies have shown that the majority of young adults continue to live at home with their parents. Shattuck et al. (2011) reported 79 % of adults with ASD aged 19–23 still lived at home with their parents in the few years after completing high school. The CARD program in their online survey found 85 % of adults still lived with their families. In a Spanish study, Saldana et al. (2009) reported 87 % of adults out of 74 lived with their families. In one of the few studies that showed a majority of adults with ASD leaving home, using data obtained from the State Mental Retardation Developmental Disabilities agencies in New York (n = 7,941) and Massachusetts (n = 1,198), Seltzer, Krauss, Orsmond, and Vestal (2000) reported that only 1/4 to 1/3 of the adults with ASD lived at home which was lower than those with other intellectual disabilities.

The reaction of mothers to the out-of-home placement of their adults with autism is very complex. Families who seek an out-of-home living situation for their adults, often experience anxiety and guilt about their decision. On the one hand, they worry that no one will be able to care for their son or daughter as well as they do, at the same time they are afraid that their child’s behavior will be so problematic that they won’t be able to remain in the placement. The guilt feelings are often a result of feeling that as parents they should not be placing their son or daughter outside the home (Lehmann, 2009; Morrell & Palmer, 2006; Sullivan, 1997). There does not seem to be a single answer or a particular living situation which is right for all adults with ASD and their families. Kraus, Seltzer, and Jacobson (2005) compared maternal impressions of the positive and negative consequences of adults with autism living at home with their families versus placement in a residential setting. The main perceived benefits for the out-of-home placement were for the adult with ASD with fewer benefits for the family. For the adult with ASD, the mothers perceived more opportunities for learning and growth experiences in a residential program, but a greater likelihood of quality care and security in the family home. For other family members, having the adult with autism stay with the family provided the benefit of peace of mind for the parents and the enjoyment of their child’s company. While out-of-home placements resulted in a calmer, more typical family life with less stress and more free time for the parents. Parental concerns about finding the right living situation are no doubt complicated by these competing benefits for the individual with autism and for their families. Some parents of adults have reported that they would never place their adult child with autism outside of their family home if they could guarantee that they would outlive their son or daughter. Since this is an unlikely outcome, many families pursue out-of-home placement in order to facilitate this process while they are still around to advocate for their offspring. The parental concerns for the future care of the individual with ASD continue no matter where the person lives.

Regardless of whether an adult with ASD lives at home or in a group home, supported living, or independent living situation, research and clinical experience suggest that they continue to be highly dependent on their parent’s support (Howlin et al., 2004). This need for continued parental support crosses the entire spectrum of individuals with autism. In a Swedish study of individuals with Asperger’s Syndrome and HFA, all of these more able adults, whether living at home or elsewhere, continued to be in need of their parent’s support (Cederlund, Hagberg, Billstedt, Gillberg, & Gillberg, 2007). In fact, people with ASD without intellectual disabilities may have greater difficulty qualifying for funding for living supports than individuals who have both ASD and intellectual disabilities when funding is based on the severity of the disability. Even when adults with autism live outside the family, their families especially their mothers have extensive contact and involvement in their care. Kraus et al. (2005) reported that 50 % of families visited their adult with autism at least weekly and an equal number of adults came weekly to visit at their mother’s home. The role parents play in the life of their adult child who is living away from home can vary from social outlet to being an integral member of a treatment team. Many residential programs/group homes have Medicaid funding which requires an Individual Habilitation Plan (IHP) for their residents (Gerhardt & Lanier, 2011). These IHPs like the Individual Education Plan (IEP) for students are developed by a team and parents are instrumental members of these teams.

In addition to the concerns about where will their adult children live and how will they spend their days, parents of adults have concerns that cross all aspects of their offspring’s life.

Provider knowledge of autism. A frequently voiced concern among families about providers of adult services is the lack of knowledge about autism, the learning style of an individual with autism, and specific intervention techniques that will enable the individual with autism to be successful as an adult. Hare et al. (2004) reported significant positive correlations between receipt of autism-specific day care and families total satisfaction scores. While residential, work, and recreational programs for adults with disabilities are growing in many places, programs specifically designed for individuals with ASD or have staff training in understanding autism continue to be insufficient (Gerhardt & Lanier, 2011; Hare et al., 2004; Kraus et al., 2005; Van Bourgondien & Schopler, 1990). While many intervention programs for adults have required training programs for staff members, the core of these training programs are typically generic trainings on first aid, CPR, medication management, client rights, and confidentiality with less required training on specific intervention techniques related to autism. It is interesting to note that many families are not aware of specific intervention techniques that may be used for adults with autism (Hare et al., 2004). This is a sharp contrast to parents of young children who often request by name a specific intervention technique.

Parents continue to want the adults with autism to be actively engaged in learning new skills (Kraus et al., 2005; Morrell & Palmer, 2006; Van Bourgondien & Griffin, 2011). Speech and language interventions and other skill-building activities continued to be valued by parents of adults (Ellison, Clark, & Langford, 2005). Yet few adults appear to receive this intervention (Hare et al., 2004). Learning new skills or even maintaining the skills and the degree of independence acquired during school years require that adults be able to participate in activities outside their parent’s home with staff members who understand the learning style of individuals with ASD.

Staff retention. Complicating the staff training issue is the issue of staff recruitment, retention, and ongoing supervision (Hare et al., 2004; Kraus et al., 2005). The turnover rate of staff members in programs that serve adults with disabilities has been reported to be as high as 50 % with ongoing staff vacancies of 10–11 % (Gerhardt & Lanier, 2011). Both families whose adult children are living at home and receiving support and families whose adults are living in a residential program are concerned about staff turnover and lack of consistency. The lack of consistency in caregivers creates difficulty for parents who rely on support within their home and for the individual with autism who seeks predictability. The frequent turnover also makes staff training critical yet in a way very ineffective. For the family, it always appears that they are starting at step one in interventions as the new staff member is getting to know the adult with ASD and his/her learning style and intervention programs. The progress for the person with autism seems to be determined more by the staff’s training and experience and less by the readiness level of the adult. The families find that they can never truly relax and feel certain that someone will be there for their son or daughter next month, let alone when the parent is no longer present. For families the turnover rate in staff members adds to their concerns about their adult’s future. Many parents have had the experience of having worked with the same teacher, resource teacher, speech therapist, occupational therapist, psychologist, etc. for an extended period of time when their child was younger. Now that there is an adult with a lifetime ahead of them, this relatively shorter time frame for providers fuels concern for the future. Eaves and Ho (2008) found that when parents of adults report what has been most helpful to them over the years they mention specific people—family members (52 %) or individual teachers, social workers, etc. (50 %) and not a specific treatment approach or program. It is therefore not surprising that the lack of stability in care providers is an area of great concern to families.

Health and safety concerns. The protection and safety of their children with autism continues to be a high priority for families as their children become adults (Hare et al., 2004; Ivey, 2002). Within the home even if the behavioral difficulties of most children with ASD decrease with age, those who are aggressive as adults are bigger and stronger and harder to manage. Families can struggle to find the right balance between giving their adult increasing independence and responsibility while worrying about their ability to truly care for themselves and protect themselves from harmful behaviors from others. Parents of adults with autism with behavioral difficulties are more likely to give in to their children’s demands compared to parents of adults with Down syndrome who can more readily say no to their children (Holmes & Carr, 1991). Another concern is that if being mistreated by another person, their son or daughter may not have the communication skills to tell others. For parents of more able adults, determining when they are truly ready to drive, live independently, or even navigate chat rooms on the Internet are areas of concern.

For the parents of the nonverbal adults, there is also the concern that other caregivers may not know when they are sick in order to seek medical attention (Kraus et al., 2005; Lehmann, 2009). Medical care in itself can be challenging for some families of adults with disabilities (Eaves & Ho, 2008; Hare et al., 2004). Most physicians who are trained to work with individuals with disabilities are pediatricians, pediatric neurologists, or child psychiatrists. It is much more challenging to find a provider for adults who also understand developmental disabilities or autism. Finding a gynecologist for a female with autism or a GI specialist for an adult with gastric distress can be difficult.

Social outlets. In examining what parents report as unmet needs, Eaves and Ho (2008), found that 75 % of 48 families reported a need for more social outlets whether that be in the form of a specific social program or a friend or support persons who could take their adults with ASD out to do things. Again, this lack of social outlets increases the time many adults with ASD spend with their parents or siblings, therefore decreasing the ability of family members to pursue their own lives. With typical adolescents and adults, one way they assert their independence is in their desire to do things with someone outside of the family. It is harder for adults with autism to find these outlets.

Financial security and estate planning. A recurring theme in parents of adults support groups is the question about what resources will be there when I am gone to help support my child with a disability. Based on our clinical experience, there are families who try to assure their child’s future by purchasing them an apartment/house that they can live in or possibly share with a roommate. Unfortunately, the bricks and mortar or capital expense of having a home is often the easiest part of developing a long-term living situation for the adults with ASD. Funding the supports the person needs, the ongoing operational costs is far more important and costly. Many families rely on state or federal funding through a combination of Medicaid, social security, and state dollars to pay for the supports and interventions their offspring require. These funding sources while supporting personnel costs and some room and board do not typically pay for all of the individual’s clothing or leisure materials or activities. Many families continue to provide these material needs for their children. So families, who have some resources, plan for the day when they are gone by looking for how to establish trust funds or other financial arrangements that will leave some source for funds to supplement the care of their offspring with ASD without jeopardizing their eligibility for state or federal funding. Organizations and lawyers who specialize in estate planning are an important resource to families who are thinking of the future. Some advocacy organizations in addition to managing a trust will also agree to provide an advocate to make sure the individual with ASD’s needs continue to be met.