A Better Life for Adults with Autism
The aim of the Academy for Adults with Autism is to foster a better life for adults with autism. Founded six years ago by parents of a teenager with autism and epilepsy, the Academy is a registered non-profit and public benefit organization in Cape Town, South Africa. The organization aims to establish and develop urgently required facilities to support young adults (ages 18+) and school leavers with intellectual disabilities, special needs, and autism spectrum disorders.
A number of professionals serve in an advisory capacity for the Academy for Adults with Autism and support the organisation’s aims and objectives including:
- Cecil Reed (Headmaster of Vera School for Learners with Autism);
- Maggi Golding (Founder of Vera School for Learners with Autism and Makaton Certified Workshop Leader in South Africa with more than 40 years of experience in the field of autism and in the establishment of schools and services for adults with autism in Great Britain and South Africa. Maggi currently serves on various boards for autism in South Africa);
- Deborah Stodel (Speech and language therapist, private practice psychologist, highly experienced in the field of autism);
- Jana Forrester (highly experienced in the field of autism, currently in private practice);
- Robin Allen (Psychiatrist and parent of teenager with autism, consulting in hospital clinics and serving on our driving committee of parents);
- Chantal van Ginkel (from “On Spectrum”, Specialist Educator, vast experience in the Far East in the field of autism);
- John Louw (Attorney); and
- Dee Cranswick (Labour Lawyer).
It is estimated that about 300,000 persons currently have autism in South Africa. Autism affects people of all races, colours and creeds. It is found amongst all economic and cultural groups. The aims and objectives of the Academy for Adults with Autism are to:
- Establish an enrichment centre and later a residential care program that provides vocational opportunities and support for adults with autism,
- Establish a residential home for persons with autism in their adult years,
- Raise public awareness and understanding of autism,
- Provide support through parent groups and referrals to professionals, and
- Fundraise for the aforementioned programs and facilities for adults with autism.
The Academy identified the need for a centre to be established in Cape Town to cater to the specific needs of young adults with autism as they near the end of their eligibility for the currently available education and life skills programs. Education and therapy programs might be offered at one of the schools supported partly by the Western Cape Education Department; however, there are only two in Cape Town with a two-year waiting list for learners to be accepted into one of these schools.
The Enrichment Centre, with a structured daily program, offers young people with autism the opportunity to take part in constructive and creative arts and crafts activities, be as productive as possible, and follow a supervised exercise program. The Centre also provides opportunities for vocational skill development, life skills continuation, social interaction, and support and care (as needed based on individual profiles), and learners are encouraged to reach their highest potential with regard to communication skills and independence. It offers all of this while operating on an extremely limited budget.
This Centre, based out of a church facility in Lakeside, Cape Town, is a pilot project which requires further development and management. By making use of visual learning support, it benefits learners/students with autism who have difficulty with verbal communication (some cannot speak at all, but do understand instructions). Staff members are specifically trained in specialized communication and educational approaches such as Makaton sign language, PECS, and TEACCH.
Existing protective workshops, special care facilities, and residential care facilities and institutions do not cater to the specific needs of individuals with autism and lack adequately trained staff. Additionally, many existing facilities are at maximum capacity and do not have room for expansion.
Persons with autism require structure, support, and predictability in their daily lives. They require empathy and understanding of their condition. Many on the spectrum benefit from the use of a low-arousal approach to dealing with and managing their behavioural and sensory integration difficulties. Clearly, there is a need for a specialized centre such as the one that we propose to develop for young adults with autism ages 18+.
In communities that lack facilities for adults with autism, autism can have a tremendous socio-economic impact on families and can present enormous difficulties within the home environment. It is extremely challenging and stressful for a parent, family member, domestic servant, or caregiver to manage a day-to-day program at home that would satisfactorily meet the complex needs of an adult with autism. Often persons with autism are isolated within the home. They need more opportunities for inclusion in society. They need to be able to practice communication skills in social situations and to observe “neurotypical” persons. Challenging behaviour comes to the fore when the needs of the person with autism are not being met.
There is a crucial need to provide centres for persons with autism and intellectual impairments to attend on a daily basis. Such centres will enhance motivation for the person with autism, provide them with appropriate opportunities to reach their potential, and offer assistance and support to their families and caregivers.
With the right types of supports in place, individuals with autism can demonstrate amazing progress in their productive abilities, life skills, independence levels, and behaviours, increasing the possibility of future employment. An established centre will also provide ample opportunity for university students to participate in hands-on activities alongside persons with autism which could inform research on autism.
The Academy for Adults with Autism assumes responsibility for its own fundraising for general operating costs. Our organization currently receives no support from the government, health services, or social services. At present, we operate within a church building and we have to move out on weekends so that church services can be conducted. There is no office space and no storage space. To continue this service to the community, we need to secure premises to house the centre and our offices. Suitable premises will include large rooms and outside grounds. We also need premises to establish an urgently needed residential home. If suitable, one property could be used for both.
The need for full-time residential care arises from the fact that many persons with autism require lifelong support and continued training in various areas. Although they often enter adulthood after receiving specialized education focusing on the development of life skills, many continue to require constant supervision, care, and assistance with daily activities. This issue weighs heavily on the minds of parents and family members responsible for individuals with autism. There is also a severe shortage of care centers in South Africa that can cope with persons with autism.
Persons with autism require highly specialized environments to meet their complex needs. The most economic and effective approach to housing is to establish a residential care facility where persons with autism can reside permanently in their adult years. A group setting is ideal as it offers opportunities for social interaction, communication and learning through modeling. For this facility to be operated properly and safely, several staff members are needed including a manager, house mother, house supervisor, day and night caregivers, and administrative staff.
It is important to provide relief to families caring for an adult person with autism. The use of residential facilities allows more family members to be employed and contribute to household income and also reduces levels of stress, anxiety, and other forms of psychological distress. This specialized residential care facility will not just be a “babysitting” service, but will offer residents opportunities to develop and participate to their full potential within a safe, supportive, and protected community environment.
The residential care program will give residents space to develop job-related skills in a safe environment. Jobs and responsibilities that residents would be encouraged to assume include the following: planting and growing fruits and vegetables in small gardens, participating in recycling and other environmentally-friendly projects, and working on arts and crafts projects. Many of the resulting products could be sold to enhance funds for the program. The main focus will be on keeping the adult suitably and productively occupied, thus giving this person a feeling of self-worth and reducing anxiety levels.
Perhaps most significantly, parents of program residents will know that should anything happen to them, their adult child with a disability will be cared for in a place of safety for the rest of their lives.
We have identified a suitable place in Noordhoek with two wings identical to each other separated by a communal kitchen which could comfortably accommodate eight residents. It sits on a two-acre flat ground with borehole water, and has three double garages which can be turned into a Vocational Centre and a separate flatlet. We currently seek funds to purchase it.
The Academy for Adults with Autism
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.