LIFE PLANNING Foundation for Autism Support and Training

Life Planning for Adults with Autism Spectrum Disorder

A written life plan helps ensure your adult child’s needs are thoroughly understood by future caregivers. Since none of us can be sure what the future holds, it is critically important for a parent of an adult on the autism spectrum to develop a written life plan for their loved one well before their adult child may need to leave the family home. A life plan helps parents answer the question, “What will happen to my child when I am gone or unable to care for him or her?” A life plan spells out in detail the personal needs and preferences of the individual with autism. It also lays out a parent’s intentions for future care of their adult-child throughout the life-span and clarifies financial and legal arrangements made on behalf of the person with autism. Life planning is a key component of the family training and autism education services offered through the Foundation for Autism Support and Training (FAST).

Why You Need to Develop a Life Plan for a Person with Autism

A parent of an adult with autism may wrongly assume that their other children or a sibling will take care of their adult child with autism, once they are gone. This arrangement is frequently unworkable.

Many parents of adults with autism are so busy dealing with the day- to- day care of their loved ones, or are under so much stress dealing with the extreme demands of parenting, that they have not planned for their children’s futures. Some parents are not aware that life plans are needed and valuable, while others are confused about how to write a life plan or where to seek help.

Many parents of adult children with autism believe they will continue to be the primary caretaker for the remainder of their loved one’s life. Such unrealistic and magical thinking does not consider the following possibilities:

  • The fact that most adults on the autism spectrum outlive the parents;
  • The adult with autism may develop behavior patterns that may create a serious, unanticipated crisis situation that would make it unsafe for the loved one to continue living at home;
  • The parent may wrongly assume that other children will take care of their disabled sibling, not realizing that in reality, this plan would be unworkable or unrealistic;
  • The extremely undesirable circumstance where the consumer with autism might become the caregiver to his own parent;
  • The parent may erroneously assume that the government will take care of his loved one sufficiently or find quality group homes or quality residential facilities.
  • Avoiding or delaying the process of life planning could eventually cause a loved one with autism to go through some very rough times in the future or end up in large residential facilities where the individual’s quality of life is greatly reduced.
  • Some current financial benefits may be interrupted, which would affect the consumer’s quality of life.
  • New caregivers in group homes and residential facilities may have difficulty understanding the consumer’s actions, desires, preferences, communication patterns, etc., without written guidance.
  • Without written details of a parent’s wishes and desires, future caregivers may unknowingly go against the parent’s wishes for their loved ones.
  • Imagine how confused and upset the consumer would feel not knowing where his next meal is coming from or where he will sleep that night!

If life planning is accomplished before a crisis erupts, parents can gradually plan for their adult child’s future, and managers and staff of small residential facilities, group homes, or supported housing options in the community can get to know the consumer’s need and behaviors, which will determine what type of residential setting and residential care will best address his or her emotional and therapeutic needs.

Life Planning Services can and should be a centerpiece of ancillary family training and autism education services offered by supported and alternative community housing providers and day program services providers and vendors. Recommendations and resources should also be provided to help families find experts in special needs law and financial planning.

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