New challenges emerge as persons on autism spectrum move towards adulthood. When neuro-typicals themselves find it difficult to manage the teenage challenges, they are much more harder for persons on the spectrum. Three major challenges of teenage and adulthood that are strenuous for handling are managing puberty, independent / assisted living and matrimony.
Managing puberty is a huge challenge. Most of the persons with autism will not understand the changes happening in the body and how to be comfortable with those changes. Both boys and girls have their own challenges. During puberty, most people start to experience sexual urges. It is normal for children to feel sexually aroused. But for teens with autism-associated sensory issues, these new sensations can cause anxiety. Families need help from experts and doctors at this stage to manage this effectively. Almost all parents of persons with autism goes through this tribulations.
In an earlier post I had indicated that when the autistic children become adults, the main worry in the minds of parents is how are they going to live, independent or assisted. Having a “good” quality of life is what all parents would look for. In western system, generally children start working and live independently after they cross 18 years. Good number of autistic adults too move to community living and other shelter houses. The agencies that run shelter houses provide care giving services too. Many high functioning autism adults move to shelter homes and community living. In developed / western countries state provide some level of support for such community housing and care giving.
In India we are culturally very different. Here we want our “special” sons and daughters to stay with us.
The National Trust Act has provisions for modalities for assisted living of adults with autism and other intellectual and developmental disabilities. Not much push has happened in this direction. There are couple of privately run high end housing and full support facilities. I have seen couple of initiatives by few parents supported by schools /NGOs. They were failures. Some builders have come up with idea of a separate block for autism and other developmentally disabled persons, along with normal housing blocks. Parents can buy houses and stay. “Special” houses also to be bought. Difficulty is right care giving services, vocational activities and possible work opportunities. Because of such challenges, none of such projects have taken off, to my knowledge.
A group of parents in Kerala are working on a solution to this problem. About 100 parents together are creating a village, with facilities for staying, training for assisted living, skill development and activities to engage and enrich the beneficiaries. The concept is “each 100 child in the village having 100 parents”. It is a community living concept with common kitchen and common facilities for all families. We are also part of that project. Expected to start operational this year.
“Getting married” and having a family for autistic adults is a dream for many parents. I have seen few cases of marriages of autistic persons. It is not easy for many of them to manage themselves, then managing a family together is going to be a huge challenge. If one of the partner in such matrimony is Neuro-typical person, I think, there is a good chance of success in the married life. Here, at least one person understands the nuances of life and “married life”. If both are “clueless” in many real life situations and how to deal with them, it is going to be difficult. Few mothers of autistic persons have come together and started “inclusive matrimony” site, for parents to search and find suitable groom / bride.
I will conclude this post with a quote “Autism is about having a pure heart and being very sensitive… It is about finding a way to survive in an overwhelming, confusing world… It is about developing differently, in a different pace and with different leaps.”
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