Autism is a lifelong condition for most. The perception of most people when they hear “autism” is always related to children. Majority of persons with autism continue to be affected by the disorder and continue to need support through out their life. In today’s poster, I am touching up on “Autism through the life span” and a state transition of parent’s thoughts.
Like anybody else, persons with autism will continue to experience changes, triumphs, challenges, victories and difficulties. It is not easy for parents and care givers to take persons with autism reach their full and optimal potential.
Just like any other “Neuro-typical” persons, autistic persons also goes through the pre-schooler, child, adolescent, young adult, middle aged and senior phases. But, the difficulties and challenges they go through are way different than the ‘Neuro-typical’ persons.
“Pre-schooler” phase is very critical for detection and early intervention. If it is possible to successfully pass through the “early intervention” at this stage, challenges would be relatively lesser in later stages. Parents are in “Why Us?” state of mind at this phase.
“Child” phase is where the parents struggle to find the “right” school, obviously a ‘special’ school. As ‘inclusive’ school system is yet to get realised in India, invariably most autistic persons end up in ‘special’ schools. School life helps in socialisation, control of behaviours and and try to acquire few basic skills. The degree to which these happen, depends on the severity of autism and abilities developed. By this time, normally the parents moves from “Why Us?” to “What Next?” stage.
“Adolescent” phase also is spent in school. A survey in Mumbai reveals that on an average, an autistic child goes through 4 different schools till 18 years of age. Reasons could be many. During this stage, the person goes through many therapeutic interventions, special education, acquires new skills and applies basic skills. Learn to make choices. Most importantly tries to learn and deal with puberty. By this time, most parents / families more or less reaches “Acceptance” stage.
“Young Adult” phase is where he/she has to leave school and move to a job or a workshop. Very few high functioning autistic persons get opportunity to work based on their abilities. Majority joins different sheltered workshops, where they get into engaging activities. It is not easy to sustain these engaging activities for many years. Many may require support of care givers in addition to parents and family members. This is the time they have to learn to solve life problems. Parents worry starts increasing during this stage regarding settling their ward somewhere or the other. Some think of matrimony, but for many it may not be possible. Many parents moves to “Advocacy” stage during this phase.
Once the person gets into “Middle Aged” phase, parents starts worrying more and more. The biggest problem that parents worry for is “What after us”? Not at all an easy problem to solve. The way this stage problems are solved differ based on cultures. In western society, the autistic persons are made to stay independently in shelter houses, with support of care givers. Whereas, it is not easy for Indian parents to leave ‘a son or a daughter with autism’ to leave alone or somewhere else. A huge community supported infrastructure is needed to address this problem in India.
“Senior” phase is the most difficult for the autistic persons, with health issues and coping with loss of near and dear ones. Parents don’t have any clue about who is going to take care of their son / daughter, after them. There is only one prayer in the minds of parents everyday “Oh god, please give a long life to our son / daughter.. and allow us to live one more day than him / her”.
I will conclude this post with a quote “An Autism diagnosis is life changing, but NOT life defining”.
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