Ageing and Autism

Currently, we are seeing the first generation of individuals recognized as affected by ASD mature and even become elderly. How will society deal with this ageing generation? What services and supports do ageing individuals with ASD require? Students affected by ASD need transition plans that take into account their individual needs and preferences. This plan should speak to their particular sensitivity to changes in their environment, and alterations to their schedules. Transition planning should begin as early as age 14 and must be a team effort involving the parents, teachers, therapists and the student. Community options to address employment, social, recreational and therapeutic needs should be identified in this plan. The goal of the transition planning process is to help the student move seamlessly from school to community services. Students who leave school without identified community service options often loose skills and regress.

Changes in older individuals with ASD

Hyperactivity in individuals with Autism often decreases as they age. Ritualistic and compulsive behaviors also tend to decrease somewhat during adolescence and adulthood. In some individuals hyperactive behaviors are replaced by inert under-activity and the person shows little impetus to engage in even proactive activities. In regard to behavior problems, while some studies show that destructive and self injurious behaviors decrease as the child enters adulthood, other studies do not show this result. Even if the frequency of behavioral problems decrease with age the intensity of those problems may actually increase because of the larger size and strength of the individual. 

Another factor that makes predicting the future behavior of people with ASD difficult is the problems many experience in handling change. Many support systems for children with Autism are based in or associated with schools. When a child ages out of the educational system they and their families often loose the support services that helped the individual maintain stability and optimum functioning. Just at the time a person with ASD needs support to deal with the physical changes associated with maturing and the social role changes associated with becoming an emancipated adult, the services are suddenly removed.

Family issues and adults with ASD

For many adults with ASD quality of life can best be achieved by living with their family. The home is usually the setting that feels most familiar. Their parents and siblings are their most well informed care providers. They have had years to adjust to the routine and pace of the family lifestyle. However, as the person with ASD ages so do their parents. At some point the parent will be unable to successfully fulfill the role of primary care giver. Before that time, they and their family should again engage in the development of a transition plan.

Hope for the Future

More research has slowly begun to be directed toward adolescent, adult and elderly people affected by ASD. As the results of those studies are published the needs of this group will become more widely understood. Another important and underused source of knowledge and creative ideas are the many adults who themselves are diagnosed with ASD. If the wisdom and experience that this group possesses can be successfully accessed then services that match the real needs and desires of older individuals with ASD can be developed.

Noura’s Transition

Noura Mohammed (نورة محمد ارحمة) is a young woman challenged by autism who has just transitioned from the Female Vocational Unit at the Shafallah Duhail Campus to the Shafallah Post School Community Services Unit located in West Bay, Doha.

Change is often difficult for individuals with autism. The attachment to routines and the reluctance to explore new environments are well known traits. It is thought that these characteristics may also relate to difficulties in sensory integration. New sounds may seem a chaotic jumble of noise rather than the modulated speech of colleagues. New sights may seem to jump out of nowhere and represent alarming and even frightening experiences. By maintaining sameness they seek to manage this chaos. It takes real courage for individuals on the autism spectrum to successfully handle changes.

If toleration of change represents a brave act for people on the spectrum then Noura is one of the most courageous individuals in Doha. In the last few weeks she has been removed from the setting she knows, travelled on an entirely new bus route, explored the new environment of the Community Services Building, met new peers and has been taught by new staff. She has done all this without protest and without the inappropriate behavior that was often her response to change in the past.

Noura has many skills. She reads, writes, uses a computer and can play beautiful music. Her behavior problems however caused many to think she could never work in an office with others. However, at the Community Services building she is already at work, copying and binding notebooks for an external business client. She also participates in classes and eats lunch with her peers without incident. She follows a written schedule very well. She has perfect attendance.

Noura has just begun her steps toward independence but these first steps have been solid purposeful strides. No one knows how far she will go but all can see she is on the right path.  We look forward to our next progress report on Noura and, God willing, she and adults like her will be out working in the community at jobs which bring them great satisfaction.