Parent for life

February 23rd, 2016


The issue of caring for children even into adulthood never occurred to me until a woman asked for help with her son. He was employed a few hours a week and needed a ride home from work. The mother was able to drop him off on her way to work but she couldn't bring him back home after his shift just a few hours later. Her son had just graduated from high school and this was his first opportunity to work in the community. For young adults with Asperger Syndrome, transitioning from high school can be tricky. An opportunity to gain work skills can not be passed up. I was free at the time her son was done his shift so I offered to give him a ride home.

I wasn't sure what to expect. He was waiting for me outside his workplace when I arrived on the first day. We chatted on the way home about his responsibilities at work and whatever he purchased at the store. He was able to cook his own lunch and was looking forward to eating whatever was on the menu that day. As the weeks went by, I discovered his sense of humour and he opened up about his issues with family members, clients and the neighbours. I enjoyed our chats. He was very intelligent and interesting.

I have met other parents since then and learned about the tremendous pressure of loving an adult child with Asperger Syndrome. One of my mother's colleagues has an adult son who lives with them. She is worried about the future. She and her husband are aging and they worry about who will take care of their son when they are no longer able to do it. They have another son but they don't want to burden him with the responsibility. There aren't as many options for AS than for individuals with other needs.

A friend of mine has a teenage son on the spectrum. His friends are all getting their driver's licence but he is not able to get his. There are little realizations along the way that are challenging for individuals with AS and their loved ones.

In theory, there seems to be housing options. The Asperger Autism Network website (www.aane.org), recommends factors to consider when choosing adequate housing for individuals with AS. "It's important to choose housing that will support their sensory, social and environmental needs". They must have a place where they can be alone, comfortable and quiet.

According to an article in www.autismdigest.com dated July/August 2012, "it is estimated that approximately 500,000 individuals with ASD will reach adulthood in the next 15 years". This website proposes the use of the Functional Skills Screening Inventory (FSSI) in order to "improve services through observable behaviour change and by focusing on the functional living skills needed to be an integral part of the community". Once you have assessed the individual's strengths and needs, you can examine the variety of housing options ranging from adult foster homes to supervised apartments.

As you read about independent living, supported living and group homes, it can seem that finding appropriate accommodations is simply a matter of choice. However, as I speak to parents of adults on the spectrum, the reality is that these options are not available in their community. Therefore, parents are left to care for their adult offspring on their own or, with some assistance from an agency, while their son or daughter lives with them.

I did some research and found an exciting program in Texas. You may wonder why I am bothering to report on it since it is so far away. I think it can serve as a starting point and role model to inspire discussion and innovation in our community.

Marbridge is a residential program for individuals with AS. It "fulfills all nine of the Autism Society's quality of life indicators". Young adults come to this program after high school and Marbridge provides an individualized program for them to meet their personal goals. The focus may have to do with personal skills like self-care, life skills like cooking or washing laundry or, if the individual wishes to find employment, job skills including writing a resume and preparing for interviews.

The program was founded in 1953 but it has been re-vamped in 2001 to integrate "education, socialization, recreation, independent living skills and employment instructions". Their website is www.marbridge.org. Their home page boasts a success story, detailing the many steps that were taken to get this young man to his current independent life. We need more programs like these to support the many families seeking adequate solutions.

Anne Walsh
www.artnsoul.org