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Independent living goes beyond simply maintaining a personal domicile so that it is a comfortable place to live. Any individual committing to independent housing is taking on an entire new set of relatively new responsibilities, typically with few supports to guide them through day-to-day decisions. Individual housing means paying bills, balancing budgets, getting and remaining organized, doing laundry, preparing meals, setting alarm clocks, utilizing personal or public transportation, preparing for any number of emergencies, and more. In 2010, nearly 80% of adult individuals with autism aged 19 to 30 lived at home compared to 32% of their neurotypical counterparts.1 Whether or not an adult with ASD lives at home or branches out into independence is determined in large part by his/her ability to maintain a productive life with little supervision.2
Having a successful social life can be challenging for any member of society attempting to break the chains of dependence, but this can be especially difficult for individuals with ASD. In fact, a 2011 study found that adolescents “with an ASD were significantly more likely never to see friends out of school (43.3%), never to get called by friends (54.4%), and never to be invited to social activities (50.4%) when compared with adolescents from all the other groups.”3 These trends tend to extend into adulthood as individuals generally have fewer and fewer interactions with peers as they get older and leave school. Independent living can magnify feelings of isolation for some individuals on the autism spectrum. The Asperger's Association of New England recommends that individuals on the autism spectrum plan social activities throughout their schedule, such as meeting with colleagues from work, obtaining a membership in hobby clubs, participating in religious activities, or any number of social activities.4
When considering independent living it is very important for members of the autism spectrum and their families to maintain a sense of organization. Family members should not only help organize the physical aspects of the apartment/house so that it aesthetically pleasing, but should also aim to create an environment tailored to that unique individual. This organization can be similar to the accommodations an individual with autism might receive in the work place, such as written out directions for using the phone, doing laundry, or other day-to-day activities. It may also be helpful to create an environment in the person’s living area that plays to an individual’s strengths and challenges. Families may find it helpful to organize medical, legal, and other transition service documents in binders and/or on flash drives for the entire transition process.5 The following is a list of skill sets, summarized in the handbook "Life Journey Through Autism: A Guide for Transition to Adulthood" published by the Organization for Autism Research, that can help prepare individuals on the autism spectrum for independent life:6
- Phone Skills: Important because they allow an individual to place emergency calls, are a common social skill, increase independence, and may be necessary in the workplace. Practice basic phone skills by prompting an individual on what to say and what information to write down for message taking. Important numbers should be memorized or programmed into the individual’s phone.
- Cleaning: Significant because it increases independence, reduces the caregiver’s workload (if necessary), is important for a productive workspace, and helps promote social inclusion. When teaching about cleaning, be sure to demonstrate which cleaning products are to be used on each surface and when to use rags or paper towels. Gradually work your way up to have the individual clean his/her own living space by having him/her shadow you while you clean different environments and surfaces.
- Laundry: This will help increase independence, teach responsibility, and is important for maintaining healthy social and workplace relationships. To help teach the laundry process, provide written out step-by-step instructions. Provide details on sorting clothes, measuring detergents/fabric softeners, dryer sheets, and safety information concerning cleaning the lint trap and ironing.
- Banking: These skills are essential for financial freedom as they allow the individual to make more decisions independently and decrease the likelihood of being taking advantage of financially by others. The best way to teach these skills is through practice. Create a simple checking/savings account to help teach frugality and budgeting. Visit with the customer service representatives at the bank to discuss the different banking options for the individual. Provide details about the purpose of a checking account and how it can be used to pay bills and oversee transactions. Provide specific directions for how to write a check (perhaps a cheat sheet within the checkbook) and record the amounts in a ledger. Be sure to explain how credit cards work, but you may want to start the individual out with a low limit to avoid costly mishaps.
- Budgeting: This can be a difficult skill to master for anybody who is new to independence. Teaching this skill will increase an individual’s independence and allow him/her to make more independent decisions. A helpful way to demonstrate the need for a budget would be to show the individual one of your own. Allot what you spend in terms of food, clothes, gas, and entertainment for a given week. Demonstrate a healthy amount to spend in each category based on the individual’s entire budget and be sure to monitor his/her spending. A monthly meeting may be necessary to review his/her’s spending in each category and to solidify that he/she is mastering this skill.
- Public Transportation: This will not only increase an individual’s independence, but will also provide increased opportunities for work and social activities. Provide the individual with a bus schedule that should be with their person throughout their travels, and be sure to study the schedule so that the individual knows the various routes, the symbols, and the times of arrival. It may be helpful to quiz the individual to make sure he/she is retaining the information discussed. If your town requires a bus fee, discuss appropriate ways to acquire change at a local store or look into acquiring a bus pass from the city. Individuals or their family should contact the local transit department to determine if they offer “No Fare IDs” for individuals with a disability. Important phone numbers should be included with a map and schedule to assist the individual if an obstacle should arise.
- Driving: The importance of acquiring this skill is similar to public transportation listed above. Driving lessons can take place from a driving school or rehabilitation center that attends to individuals with disabilities. Emphasize important driving rules, skills, and safety precautions. Important directions and phone numbers should be kept in the glove compartment for emergency.
Although individuals on the autism spectrum who undertake independent living may not be offered many in-person services or supports, they may qualify for financial supports. Some individuals may be eligible for Supplemental Security Income (SSI), which is a Federal income supplement program, funded by general tax revenues.7 Other Federal assistance is available through Medicaid (Title 19), which is available to individuals who qualify for Developmental Disability Services in their state.8 Individuals who require financial assistance may also find it helpful to research the Housing Choice Vouchers Program in their state, by contacting the local Public Housing Agency. There is often a waiting list for Public Housing Vouchers; however, some public housing authorities express a “preference” towards individuals with disabilities.