Here you will find adults with autism information and resources to help your loved one meet their unique and individual needs for today and prepare for future planning.
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
~ Barack Obama, April 11, 2008
Some adults with Autism Spectrum Disorder, especially those with high-functioning autism or Asperger syndrome are able to work successfully in mainstream jobs. However, communication and social problems often cause difficulties in many areas of life. The individuals will continue to need encouragement and moral support in their struggle for an independent life.
Many other adults with Autism Spectrum Disorder are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with ASD continue to learn and to develop throughout their lives.
The public schools' responsibility for providing services ends when the young adult with Autism Spectrum Disorder reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals.
Long before your child finishes school, you will want to search for the best programs and facilities for your young adult. If you know other parents of autistic adults, ask them about the services available in your community. If your community has little to offer, serve as an advocate for your child and work toward the goal of improved benefits, supports and services.
According to a
National Autistic Society
survey of over 450 children and adults with autism, an astonishing 70% of adults with autism are unable to live independently. Of these individuals, 49% live with family members, creating a huge financial burden on aging parents, and 32% livle in residential care facilities, which offer little or no privacy, autonomy, or stimulation.
Only 3% of adults with autism live fully independently. In terms of employment, only 6% of adults hold paid, full-time jobs. Regarding mental health, over half of adults with autism have been diagnosed with depression some time in their adult life while 11% say they have suffered a "nervous breakdown."
And even though the majority of adults surveyed had participated in at least two autism interventions in childhood, 65% continue having difficulty making friends. Of teens surveyed, 74% stated that they had difficulty making friends. Of children under 13 years old, 31% participated in no social activities at all.
Clearly this data shows the burden on quality of life for adults with autism, issues such as independence, self-determination, employment, mental health, social support, and meaningful relationships are virtually ignored when planning treatments, assessing treatment outcomes, or evaluating an overall program’s effectiveness.
Adults with autism are in need of treatment programs which focus on improving family life, self-perception, self-esteem, confidence, ability to compete in employment opportunities, the ability to live in the least restrictive environment, ability to decrease depression, anxiety, and other mental health concerns, for more successful outcomes.
J Can Acad Child Adolesc Psychiatry. 2009 November; 18(4): 322–328. Samantha Marriage, BSc,1 Annie Wolverton, BA, MEd,2 and Keith Marriage, MBBS, FRCPC2 1University of Melbourne Medical School, Melbourne, Australia 2BC Children’s Hospital, Vancouver, British Columbia
Adult outcome was poorest for those with the combination of ASD and Intellectual Disability (ID). The sub- group of individuals with Autism identified in adulthood whose functioning was assessed after 25 years of age had achieved more in the areas of education and independent living. All three groups had a high frequency of psychiatric co-morbidity.
While co-morbid ID and ASD generally imply a poor outcome, for children and youth with ASD and normal range IQ, adult functioning is more variable and difficult to predict. Because of delays in ongoing social development, some of these individuals may attain educational, independent living and relationship goals, but reach them a decade or more later than typical for the general population.
For those diagnosed with ASD in childhood, most will become adults with a significant degree of disability (Cederlund et al., 2008; Howlin et al., 2004; Seltzer et al., 2004; Howlin, 2000). As summarized by Seltzer et al, there is evidence of persisting social and communication deficits, together with psychiatric and behavioral co-morbidity.
They concluded that, despite considerable heterogeneity in social outcomes, “few adults with autism live independently, marry, go to college, work in competitive jobs or develop a large network of friends”. However, the trend within individuals is for some functional improvement over time, as well as a decrease in autistic symptoms (Howlin et al., 2004; Seltzer et al., 2004). Some authors suggest that a sub-group of 15–30% of adults with autism will show more positive outcomes (Cederlund et al., 2008; Seltzer et al., 2004).
Patients with co-morbid ASD and Intellectual Disability (ID) had significantly worse outcomes than those with normal IQ’s, suggesting that IQ may be a prognostic factor (Cederlund et al., 2008; Howlin et al., 2004). That said, previous studies have shown that even for those in the HFA/AD group with IQ’s greater than 70, many had poor social outcomes, and lower levels of independence and vocational achievement in adult life. It was also noted that co-morbid psychiatric disorders and development of epilepsy, as well as high dependence on families and institutions, were prevalent in this group (Cederlund et al., 2008; Engstrom et al., 2003; Howlin, 2000).
Howlin, Patricia, Goode, Susan, Hutton, Jane & Rutter, Michael (2004) Adult outcome for children with autism. Journal of Child Psychology and Psychiatry 45 (2), 212-229. doi: 10.1111/ j.1469-7610.2004.00215.x Patricia Howlin1, Susan Goode2, Jane Hutton3 and Michael Rutter4
"Although a minority of adults had achieved relatively high levels of independence, most remained very dependent on their families or other support services. Few lived alone, had close friends, or permanent employment. Communication generally was impaired, and reading and spelling abilities were poor. Stereotyped behaviours or interests frequently persisted into adulthood. Ten individuals had developed epilepsy. Overall, only 12% were rated as having a 'Very Good' outcome; 10% were rated as 'Good' and 19% as 'Fair'. The majority was rated as having a 'Poor' (46%) or 'Very Poor' (12%) outcome. Individuals with a childhood performance IQ of at least 70 had a significantly better outcome than those with an IQ below this. However, within the normal IQ range outcome was very variable and, on an individual level, neither verbal nor performance IQ proved to be consistent prognostic indicators."
Living Arrangements for the Adult with an Autism Spectrum Disorder
Some adults with ASD are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances or dealing with the government agencies that provide services to persons with disabilities. This assistance can be provided by family, a professional agency, or another type of provider.
Living at home.
Government funds are available for families that choose to have their adult child with ASD live at home. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid waivers, and others. Information about these programs is available from the Social Security Administration (SSA). An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible.
Foster homes and skill-development homes.
Some families open their homes to provide long-term care to unrelated adults with disabilities. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.
Supervised group living.
Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Higher functioning persons may be able to live in a home or apartment where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.
Although the trend in recent decades has been to avoid placing persons with disabilities into long-term-care institutions, this alternative is still available for persons with ASD who need intensive, constant supervision. Unlike many of the institutions years ago, today's facilities view residents as individuals with human needs and offer opportunities for recreation and simple but meaningful work.
To help you better understand the various types of day programs and services which may be available for adults with autism, a description of programs and services provided in New York State is provided below.
Certified day programs are a set of services based upon regulatory requirements. Everyone enrolled must have access to the full menu of services. Although adults with autism participating in the program have a service plan based on their needs, the services are provided within the framework of the required package of services. These services are:
Day Treatment is a Medicaid funded program designed to provide individualized services to adults with autism who have intensive needs. Clinical staffing includes registered nurses, psychologists, speech, occupational and physical therapists. A wide variety of services are offered to enhance skills in self-care, communication, mobility, independent living, learning, and self direction. Day Treatment programs offer similar programs including specialized senior citizen programs designed to meet the medical, social and energy levels of senior adults with autism.
Training, structured activities, and specialized assistance is provided outside of a person’s home, which will enable the adult with autism to engage in a variety of non-vocational community activities and/or prepare the person for eventual employment.
The purpose of Day Habilitation is to increase independence, productivity, and integration for the adult with autism, using a setting away from the home. Services may occur at virtually any community setting including grocery stores, businesses, parks, and place of employment or volunteering.
Day Habilitation activities include: personal grooming (bathing, showering, shaving, toileting), housekeeping, food preparation, money skills (money awareness, banking, budgeting), shopping, social skills, leisure time skills, and traffic safety. The services may be provided to one adult with autism or to groups of people.
Day Habilitation can be provided as non-center based services, i.e. there is no day habilitation building, the participants will meet at a designated located in the community.
Day Habilitation provided as center-based services is a more structured for adults with autism, providing some services within a building and some out in the sourrounding community.
Day Training and Sheltered Workshop programs are designed to provide services that will assist adults with autism in developing skills and habits to improve their personal, social, educational, and prevocational functioning to the fullest extent of their abilities.
"Work" in the Day Training programs is defined as engaging in some productive activity for reinforcement which may be money, verbal, or something of special interest to the person. A staff-to-worker ratio of approximately 1:10 is kept, allowing for the learning of basic skills in areas such as grooming and behavioral control.
The Sheltered Workshop provides (generally lower than minimum wage) paid employment in a controlled and protective working environment and employment activities, with individualized goals to help the adult with autism progress toward normal living and productive vocational status.
Program basics include:
diagnostic assessment and testing,
ontrolled and supervised working experience for training,
work adjustments, or employment together with other services,
progress, referral, and follow-up.
Skill training may include automotive, porter/matron, food service, shipping and receiving, clerical, bench assembly and machine/tool usage, as well as work adjustment services which help adults with autism adjust to greater demands of the work environment (e.g. acceptance of supervisory demands, flexibility to change tasks, and co-worker interaction).
The Workshop staff-to-worker ratio is approximately 1:30. Vocational counseling and adult education is provided under both Day Training and Sheltered Workshops.
This program provides meaningful work for wages in community settings for adults with autism who need long-term supports before starting or restarting unassisted competitive employment (regular job in the community with no assistance). The perosn must be engaged in a full or part-time schedule for at least 15 hours per week. The work setting must provide frequent social integration with non-disabled co-workers who are not paid caregivers.
Supported employment may be offered in the following models:
Supported individual jobs: Adults with autism and other developmental disabilities are matched and begin jobs with no prior training.
One on one job coach starts and fades as needed.
Enclave/Work Stations in Industry-rehabilitation agency offers support and supervision to a group placed together.
Mobile Work Crews focuses on grounds and maintenance contracts. Usually small crews with one supervisor and five crew members.
Entrepreneurial Model: establishes a business employing both disabled & non-disabled workers.
Source: OC Department of Mental Health/Developmental Disabilities Services Guide
Self-Determination is the right of persons with disabilities to make choices about their own lives, to have the same rights and responsibilities as everyone else, and to speak and advocate for themselves.
Person-Centered Planning are service options that are based on the choices, strength, and needs of someone who has a developmental disability - rather than set options of services.
Circle of Support. A circle of support is a group of people interested in getting together to assist a focal person enhance and expand his or her life by helping to reach key personal goals.
Self-Advocacy. Parents are their children's best advocate. However, it is very important for able adults with autism and other developmental disabilities to learn how to advocate for themselves and become self-advocates. Learning to speak up for yourself is generally a process.
Social Security Benefits Parent tips on applying for Social Security and Supplemental Security Income disability programs.
are actually Home and Community-Based Services Waivers provided by most states to persons with developmental disabilities or long-term illnesses to receive certain medical and non-medical services. These services may help a person at any age remain living at home or within their community instead of an institution or residential placement.
Residential Placement There are various types of residential placement options available for an individual with autism depending upon the level of care a person may need. This page also offers dozens of valid questions to help you select a residential service provider, as well as an agency interested in providing support and residential opportunity for your loved one.
What is Guardianship? A parent is considered by law, the natural guardian of his or her child until that child reaches the age of 18. Once the child reaches the age of 18, however, a parent or sibling (or other potential guardian) must petition the court to grant guardianship status over the said adult with disabilities.
Your child's school district Special Education Department or Committee is required by both federal and state regulations before age level 14 to begin to help you and your child develop a transition plan from school to life after school -- meeting with you, your child and community agencies to discuss what skills and knowledge your child will need as an adult.
Supplemental Needs Trust Individuals with mental retardation and/or developmental disabilities who have assets over approximately $2,000 are ineligible to receive state and federal services i.e. HCBS waivers and must spend their money down to this amount first. However, the government does allow "special needs trusts" to be set up for children with disabilities.
Our family’s Autism Action Plan shares information, resources and ideas to help you put together a plan for both children and adults with autism.
Colleges with Programs for Learning Disabled Students (2006)
Americans with Disabilities Act
mandates that colleges and universities provide services and/or accommodations for students with learning disabilities. The American Educational Guidance Center offers a list of colleges and universities designed specifically to support students with learning disabilities. A number of colleges go a step further —they offer programs, some are quite comprehensive.
Our personal recommended book list for adults with autism is also available at our
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Enhancing the Lives of Adults With Disabilities: An Orientation Manual Self-acclaimed #1 training curriculum for supporting adults with disabilities in their own communities. Covers practical information from natural supports to self-determination. Includes impact of a disability on the life of a person and family, review of community living, principles of behavior change, teaching and learning, health and safety, and discusses empowerment, rights and advocacy. Each section ends with a post-test to see if the reader recalls and understands the concepts presented.
Older Adults With Developmental Disabilities This book provides discussions on characteristics of older adults with developmental disabilities, transitions in later life, social life and family relationships. Includes a Planning Guide for parents and siblings.