The Struggle of Adults with Autism: Housing Arrangements BY: DAINA ABOOD SE_559

Reality of adolescents with autism becoming adults: Adolescents with autism grow up just like everybody else. Parents struggle with the what is best for their child. A decision must be made on permanent housing arrangements. Some adults with autism cannot make decisions for themselves regarding housing arrangements and this burden is then placed on the caregiver. Adults with autism have the same basic needs that other adults do which need to be taken into consideration with housing arrangements.

Steps to Making a Decision:  Assess the individual’s functioning level of independent living skills (Pavlides, 2011).  Determine the availability of residential options. There can often be waiting lists for housing.  Research what funds are available to help pay for the housing arrangements, whether they are in home or outside the home.  Learn about options for in-home services through state and federal programs (Pavlides, 2011).  Consider the lifespan of the adult with autism.

Residential Options:  Living with parents or family members  Adult foster care  Group home  Supervised community  Supported living  Independent living in leased or owned home (Pavlides, 2011) There are pros and cons for each of these different settings and more in depth information is available at

Living with Parents or Other Family Members  Individuals remain in the home with parents or family members as primary caregivers (Pavlides, 2011). Pros:  Proximity of parental supports  Cost savings to the government  Parental oversight of service delivery and monitoring safety Cons:  Burden and stress on caregivers  Does not prepare the individual to live independently  Eventually the caregiver will pass away and this will become an issue for the adult with autism ("Overview of current," 2014)

Adult Foster Care  Individuals live in a family setting with a caregiver other than parents or relatives (Pavlides, 2011). Pros:  Individuals still receive a family setting  Safety and services can still be monitored  Parents feel more at ease with the individual in this setting Cons:  Does not prepare the individual to live independently  Costs the state and government money  Care may not be the same as the parent would provide ("Overview of current," 2014)

Group Home  Individuals live in a home setting run by an agency (Pavlides, 2011). Pros:  Structured daily routines  Transportation  Social opportunities  Recreation/programming Cons:  High staff turn over rates  Lack of staff training specific to autism and individual planning  Room sharing and close proximity do not fit the needs of individuals with autism  No cost of living allowance ("Overview of current," 2014)

Supported Community  Individuals receive support at a less intense level and services are provided by the agency that runs the community (Pavlides, 2011). Pros:  Provides more independence for the individual  Social opportunities  Recreation/programming Cons:  Costs the state money  Does not have an allowance for individuals  Environment may not fit individuals with autism’s needs ("Overview of current," 2014)

Supported Living  Supported living in an apartment or home allows the individual to choose agencies or service providers while staying in the same home (Pavlides, 2011). Pros:  Provides more independence for the individual  Allows the individual to have more control over their wants and needs  Individuals have more responsibilities Cons:  Individuals can choose to live alone and therefore make them less social  Adults will have to set up their own transportation  Individuals do not have as much supervision ("Adulthood," 2014)

Independent Living in Leased or Owned Home  Individuals are able to live on their own and may qualify for housing assistance (Pavlides, 2011). Pros:  Provides individuals with option to make their own choices  Individuals remain in control over housing choices and support staff  Provides individual with the most independence Cons:  Rental subsides are scarce  Some landlords do not accept government money  There is more risk for isolation for the individual with ASD ("Overview of current," 2014)

Current Living Arrangements of Young Adults With ASDs (Ahrentzen, Barger, Blackbourn, Bosworth, Gerhardt, Hannah, Harris & Oakes, 2009)

The Struggle:  In all reality the struggle of an adult with autism deciding on a housing arrangement lies within the parent(s), unless the adult is capable of making the decision themselves.  The parent(s) has to weigh the pros and cons of what there life will be like with and with out the child in the home.  The parent(s) also have to decide what is going to be in the best interest of their child.  The problem that most families struggle with is the fact that what they want for their child may not actually be what's best for the child.  The adult with autism struggles as well. They do not always understand why they have to leave and this can effect them emotionally and they could act out with behaviors in response to this change of environment.

Pros to the adult with autism living in the home:  Adult benefits from interaction with family  Parent(s) have peace of mind  Adult gets good care and is secure  Adult can help around the house  Adult is able to keep parent(s) company  Adult is happy at home, not dealing with change  Family benefits and learns from the adult (Krauss, Seltzer & Jacobson, 2005)

Cons to the adult with autism living in the home:  Dealing with the adult’s behavior  Limits family activities  Stress of daily life  Negative impact on siblings  Residing at home does not challenge the adult  Social isolation  Worry of future of the adult  Difficult finding respite care (Krauss, Seltzer & Jacobson, 2005)

Pros to the adult with autism living outside the home:  Families stay married longer  Less behavior issues  Calmer environment  Adult learns new skills and grows more independent  Adult has a better social life  Adult has an age appropriate life style  Parent(s) can work  Parent(s) can have more free time (Krauss, Seltzer & Jacobson, 2005)

Cons to the adult with autism living outside the home:  Staff is not always well trained  Concerns about quality of care  Staff turnover  Lack of communication with staff about the individual  Safety concerns  Parent(s) worry and feel guilty  Parent(s) are limited to see their child  Parent(s) feel loss of control (Krauss, Seltzer & Jacobson, 2005)

When to let go:  At some point at parent(s) has to make the decision, after weighing the pros and cons.  The level of severity of the adult with autism may persuade parents more as they realize they may not be able to physically take care of them, and that a group home may be the best place for them.  For some parents it is a struggle to make the decision because their child may not be that severe.  Reality is at some point the parent will not be able to take care of their child anymore because nobody lives forever.  The key is to figure out what the best time in the adult’s life is to help transition them with this experience.

 In my opinion, I believe that an adult with autism is going to get a better experience in life to eventually leave their home. After high school at some point every person leaves their home. An adult with autism should do the same. They may need to take longer than the average person, but this is expected. I have a brother with autism and he is diagnosed as PDD-NOS (pervasive developmental disorder-not otherwise specified). He is very functional. I feel he is being enable and held back from his true capabilities in life by living at home. He needs to work on being social and having responsibilities and job opportunities. He will at some point need to leave to experience this.  Based on the information in these slides that weigh the pros and cons of the adult living in the home versus in a non-family setting, the pros, in my opinion, outweigh the cons. The family is happier and the adult is happier.  One parent states in an interview that she looks forward to the opportunities that her son will have in community support services

References (2013, July 05). CSS Adult Residential Services [Web Video]. Retrieved from Adulthood. (2014). Retrieved from Ahrentzen, S., Barger, T., Blackbourn, J., Bosworth, G., Gerhardt, P., Hannah, N., Harris, P., & Oakes, M. (2009). Opening doors: A discussion of residential options for adults living with autism and related disorders. Retrieved from Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-family settings: positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49(2), doi: /j x Overview of current adult autism housing options. (2014). Retrieved from (2014). Retrieved from Pavlides, M. (2011, October 19). [Web log message]. Retrieved from

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