Where Do High Functioning Adults With Autism Live?

Some young adults in the US have their first taste of independent living after leaving high school. They may move out of their parent’s home and begin living in a college dorm with a roommate or on their own. It may happen when a young adult goes to college or gets a job too far away from where the parents live to commute, or it may happen simply because the young adult and/or the young adult’s family believes it’s time for more independence.

Our society generally regards “moving out” as developmentally appropriate for 18-30 year olds; however, you may wonder if your autistic adult child will ever be ready for this rite of passage. The majority of high-functioning young adults on the autism spectrum continue to live with a parent or guardian in the first years after high school, but with additional options available to them, this is starting to change.

What Is High-Functioning Autism?

High-functioning autism (HFA) is an unofficial term used for people whose autism symptoms appear mild. The official diagnostic term is Autism Spectrum Disorder (ASD) level 1.

In the past, people who fit the description of HFA would likely have been diagnosed with Asperger’s syndrome. Asperger’s was removed from the Diagnostic and Statistical Manual of Mental Disorders in 2013 when the fifth edition (DSM-5) was published.

Since then, the severity of autism spectrum disorder is described by a level from 1 to 3, based on how much support a person needs:

• Level 1 requires some support
• Level 2 requires substantial support
• Level 3 requires very substantial support

Living Arrangements for Those with Level 1 High-Functioning Autism

In a recent report by Drexel University Autism Institute, they examine living arrangements and factors related to independent living using data from the National Longitudinal Transition Study-2 (NLTS2), collected when young adults were 21 to 25 years old. These are some of the findings.

• Five times as many young adults with autism lived with a parent or guardian in their early 20s, compared with those who lived independently or in a supervised living arrangement.
• Overall, few lived in supervised settings (group homes, medical facilities, boarding schools) or independently (on his/her own, with a spouse or roommate, college housing). It is important to note that some people who lived in independent settings may have received supportive services to do so.
• Nearly 45% of young adults with the highest level of conversation skills ever lived independently compared to none (0%) of those with the lowest conversation skills.
• One purpose of special education is to prepare students for independent living.
• Some individuals with autism are completely capable of living on their own; others will learn through experience, and still others will need to be taught specific life skills tasks before being able to live on their own.
• Some individuals will always need some help and will never be able to live completely independently. There are community supports to assist these autistic individuals, which can provide supplementary services.

Teaching Young Adults with HFA the Skills They Need to Live Independently   

Parents of children with HFA spend a great deal of time preparing for and agonizing over whether their child will ever be able to live independently. The following are some things to consider when it comes to “new” skills young adults need to live on their own:

• Managing money to pay the bills, rent, utilities, food, etc;
• Eating right, creating a shopping list, purchasing food, preparing dinner, ordering take-out;
• Getting to appointments, work, stores, social engagements, etc.
• Attending to the not fun chores of cleaning the house, washing and folding the laundry,
• Getting places: arranging for transportation to school, work, doctor’s appointments, social events, etc.;
• Remembering to take medications and maintaining health and hygiene;
• Practicing good social skills: getting along with neighbors, co-workers, grocery store clerks, etc.;
• Managing free time;
• Staying safe: locking doors, turning off the burners/oven, having and knowing how to use a fire extinguisher, replacing batteries in smoke detectors, etc.

All of this and more is necessary for independent living.

Other Factors for Independent Living

– Financial Considerations

Being able to afford to live away from home is a challenge for most young adults. What if your adult child does not have a job and cannot afford to live independently? Portions of public benefits (such as Supplemental Security Income — SSI, or Social Security Disability Insurance — SSDI) can be used for housing, but you or your adult child will often need to find a way to supplement these dollars. Agencies in the community can help you determine what supports are needed and help access these services.

– Social Considerations

If your adult child has always lived with you at home, he or she may be used to having other people around to talk to. If your adult child is considering moving out, make sure he or she has social opportunities so that he or she does not feel isolated. Rather than living completely alone, ask your adult child to consider a roommate or a group home. In addition to providing social connection, these options can help reduce the financial cost of living independently. If needed, roommates can share support staff, or a “roommate” may even be a support person who is there to assist when necessary.

Independent Living for those with High Functioning ASD

Group homes for those with HFA have become more popular. Supportive housing offered in a group home gives your adult child with special needs the assistance he or she needs to be as independent as possible. Provisions are also in place to meet your child’s physical, emotional, and mental health needs.

The staff in a group home varies based on the home and your loved one’s needs and can include personal care attendants, counselors, and other professionals who understand their specific needs and provide residential, behavioral, and other support.

This housing placement provides your loved one with opportunities to interact with other group home residents, help with chores, and participate in social activities.

Funding for group home care for adults with HFA comes from employment and private payment, whereas most group homes (meaning those for adults with ASD who are not high functioning) only accept payment via SSI, meaning that the residents of most group homes must be receiving SSI in order to live there.

Resources for Group Homes for those with HFA include:

• AANE – Aspergers/Autism network: They have life coaching and an independent living support program as well as some support groups for adults with HFA and for parents of adults with HFA.
• Autism Housing Network is a platform for sharing great housing options and resources for adults with autism and others with intellectual or developmental disabilities.
• First Place in Phoenix, Arizona is a supported independent living program for adults on the spectrum.Independent Living Experience is an independent living program in Denver, Colorado which offers services designed to help those with HFA live fully independent lives.
• Chapel Haven in New Haven, Connecticut is a place where adults with HFA can live and learn how to be independent through the community’s Asperger Syndrome Adult Transition Program.
• New Perspectives for Young Adults in Orem, Utah provides life coaching for independent living.
• Housing and Community Living at Autism Speaks

Planning in Advance for Children with High-Functioning Autism and other Special Needs

If something happened to you and you are taking care of your child with autism or other special needs, what would happen to that person? A special needs trust is often an essential tool to protect the financial future of an individual with special needs. Also known as a supplemental needs trust, this type of trust preserves eligibility for federal and state benefits by keeping assets out of the name of the person with special needs, while still allowing the trust funds to be used to benefit the person with special needs. Learn more about Special Needs Trusts here. Although many adults with HFA will not ever need a true special needs trust, because they will never be recipients of public benefits such as SSI or Medicaid, they might still need to have their inheritance left in a special type of trust that is managed by someone else, typically a trusted family member or family friend or a Trust Company or a law firm that has a focus in special-needs planning.

Planning for a child with HFA or other special needs is about your child getting the best possible care after your death or when you become unable to make decisions for your child because of your own incapacity. For children with special needs who have turned 18 and are capable of signing incapacity planning documents such as a power of attorney and an advance medical directive, it is strongly suggested that they sign these documents as soon as possible after they turn 18. At the Farr Law Firm, our proprietary 4-Needs Advance Medical Directive® includes our proprietary Long-term Care Directive®, an extremely detailed and comprehensive planning document which can be used in addition to, or in lieu of, a formal life care plan or letter of intent for a loved one with special needs.

For children with special needs who are approaching age 18 and are likely to need ongoing support and supervision from their parents after age 18, then guardianship and conservatorship should be strongly considered; we can often file a petition for guardianship and conservatorship once your child turns age 17½.

When it comes to special needs planning, estate planning, and retirement planning, the attorneys at the Farr Law Firm can guide you through this process. Please contact us to make an appointment for an initial consultation: