Autistic children sometimes need more support than neurotypical children as they grow up. Autism can come with challenges in school, social interactions, the professional world, and daily life, not to mention the various medical issues that may occur alongside being on the spectrum.
Parents and caregivers of autistic kids know they are especially important to their child’s quality of life, which may leave many wondering: What will happen to my child when I die?
This is a scary question for all parents, but especially parents of special needs children. Every family is different, so your plan will depend on your child’s needs and capabilities. Beyond the logistics, you may worry about how your child will emotionally handle your passing.
In this article, we’ll give parents and caregivers of people on the spectrum an overview of what to consider when preparing for the future and how to help your child understand death.
How are autistic adults impacted when their parents die?
Everyone’s situation differs, but research shows that people on the autism spectrum often have a hard time transitioning into adulthood. When special education services end after high school, autistic young adults without an intellectual disability may not qualify for more services. Difficulty getting a job or going to college means that many continue to live with their parents into adulthood.
A 2015 report by the A.J. Drexel Autism Institute found that 87% of adults with autism lived with their parents during their early 20s, compared to 21% of the general population. Approximately one in four were socially isolated, meaning they never talked with friends or were invited to events within the past year. Unfortunately, too many people with autism have small or nonexistent support systems outside their family.
Furthermore, employment rates for autistic young adults are low. Only about 58% hold a job in their early 20s, while 95% of people with a learning disability do. These rates improve further out from high school—six to eight years afterward, 93% will have had a job at least once—but the majority of these jobs are part-time and/or with low wages.
All in all, a variety of factors make it hard for some autistic adults to support themselves and live independently. When their parents die, this can leave them struggling with poverty, homelessness, or an early death.
DaWalt et al. (2020) studied a group of adults on the autism spectrum who died between 1998 and 2018. The average age of death for this group was just 39. The biggest predictors of an early death were, of course, age and health. Those with low scores on the Activities of Daily Living (ADL) scale also often died earlier. This scale measures how independently someone can complete tasks such as toileting, preparing meals, managing finances, house-cleaning, etc. Low rates of social and community interaction were also a predictor for earlier deaths.
Clearly, autistic people face a number of challenges, from higher mortality rates to low employment rates. As parents, you will have to prepare for your child’s long-term living situation, either by ensuring that they can be independent or finding services to assist them.
What support measures can parents put in place?
The following suggestions are applicable primarily for people living in the United States.
Financial
Social Security Disability Benefits
The United States Social Security Administration (SSA) may consider autism a disability if the person has…
- Limitations in activities of daily living
- Limitations interacting socially
- Limitations in completing tasks at a reasonable pace
The SSA has two disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
SSDI generally applies to adult workers who already have a job history, have built up SSA work credits, and can now no longer work due to disability. However, adults who became disabled before age 22 may also receive SSDI benefits under their parent’s Social Security record. For example, if you, the parent, start receiving retirement or disability benefits from the SSA, your adult child with autism may be eligible as well. The “adult child” must be unmarried and have limited earnings to be eligible—as of 2021, they cannot earn more than $1,310 a month.
SSI is available to children and adults regardless of work history. The applicant must have limited income in order to qualify.
When applying for Social Security benefits, be sure to have plenty of medical documentation to back up the diagnosis, as well as financial records to prove limited income.
Medicaid
Medicaid is a government health insurance plan for people who are elderly or disabled. Only adults who receive SSI are eligible for Medicaid.
Not all health care providers accept Medicaid, so if your child with autism already has another source of health insurance, it’s best to keep both. If you do have other health insurance, that one must be used before Medicaid unless the first insurance provider rejects the service.
Medicaid also covers long-term residential care, which some autistic adults require. Job training and other services may be covered by Medicaid as well.
ABLE Accounts
These savings accounts were created by Stephen Beck Jr. Achieving a Better Life Experience Act of 2014, also known as the ABLE Act. They are specifically designed for individuals with disabilities and their families, and income earned by an ABLE account won’t be taxed.
Because SS benefits depend on having a limited income, many families have to remain poor in order to get any support for their autistic child. ABLE accounts are intended to let families accumulate income that won’t affect their eligibility for SSDI/SSI, Medicaid, and other programs.
Someone is eligible to open an ABLE account if:
- Their disability began before the age of 26
- They’re already receiving SSDI/SSI or they meet the SSA’s disability criteria and have a letter of certification from a health professional
- Psychologists, therapists, and counselors don’t count
The account can only be used for expenses related to the disability, such as food, education, housing, health care, job training, assistive devices, etc.
Check out our article Answering Your FAQs on ABLE Accounts for more information.
Special Needs Trusts
A special needs trust is a “fiduciary relationship” that, like an ABLE account, lets someone with autism or other disabilities receive income without jeopardizing their eligibility for government aid. Fiduciary relationships are arrangements where a trustee manages the money on behalf of the beneficiary—in this case, the person with autism.
See Finding the Special Needs Trust That’s Right for Your Family to learn about the different types of trusts and the differences between them.
Residential
Where your child with autism lives as an adult will depend on their level of functioning. Some autistic people can live perfectly independently, while others will fare better with around-the-clock care.
If you can, start helping your child build the skills needed to manage daily activities, from shopping to cleaning to personal hygiene. The earlier you help your child establish independence, the better. It will not only prepare them for an easier future, but also increase their confidence and self-esteem. As your child gets older, consider seeking out opportunities for part-time jobs or internships that can prepare them for the workplace.
If employment or fully independent living aren’t a reality for your autistic child, there are resources out there.
Section 8 housing
Section 8 is a program that helps low-income individuals pay for housing. Section 8 housing vouchers are provided by local public housing associations, which are funded by the federal government.
Many people who use SSDI/SSI benefits also qualify for Section 8. However, wait lists can be long. This option also only applies to independent housing, so it’s best for autistic people with less severe needs.
Group homes
Group homes are places where adults with autism or other developmental disabilities live together with support from staff members. These are typically in residential neighborhoods and have a small number of occupants.
Group homes are usually run by private agencies. They may be tricky to get into because of limited spots and long wait lists.
Supported living/Home care
In this model, an adult with autism lives on their own but hires staff to check in based on needs. For example, an aide may come by every other day to drop off meals and help with household chores.
Skilled nursing facilities
Adults with the most severe needs, especially older ones, may need the support of a skilled nursing facility. These homes provide 24/7 care and supervision. They are often very expensive, but Medicaid may help cover the costs.
Tips on how to prepare your child for grief
No matter how old you are, it’s difficult to lose your parents. Adults with autism may have an especially hard time coping.
Do what you can to teach your autistic child about death from an early age. Try using examples from nature or age-appropriate books, movies, or TV shows. When close family members or friends pass away, don’t shield your child from the events—they’ll have to deal with loss eventually, so don’t set them up for confusion later. Explain that death is permanent and that it’s okay to be sad, but that life will go on. Don’t use euphemisms like “he passed away” or “he went to sleep,” because autistic people often take language literally.
Social stories may also be useful for explaining grief and the rituals around it. These stories are designed to help people with autism understand different situations and learn how to respond.
When your child first learns about death, they may ask if you will die one day. Naturally, you should be honest about this and do your best to answer any questions they have. Uncertainty about the future can cause lots of anxiety for people with autism, so consider explaining what plan you have in place for your passing. Tell them how their life will change, but reassure them that they won’t be left alone in the world.
Read Autism and Grief: What to Do and How to Prepare for more tips on helping your child with autism cope with loss.
In conclusion
It’s normal for guardians of children with autism to worry about their child’s life as adults. The most important thing to do is start preparing as soon as you can. If possible, access early intervention services that will strengthen the skills needed for independent living in the long-term.
Start researching the different financial and residential options available in your area. Local autism charities, financial advisors, attorneys, and government agencies can help you navigate this world, which is often confusing.
Once you have a plan in place, you’ll be able to better reassure your child that they’ll be taken care of once you die. Preparing as early as possible will result in less stress for you, your family, and your child.
References:
ABLE NRC. (n.d.). About ABLE Accounts. ABLE National Resource Center. https://www.ablenrc.org/what-is-able/what-are-able-acounts/
A.J. Drexel Autism Institute. (2015). National Autism Indicators Report: Transition into Young Adulthood. Drexel University. https://drexel.edu/~/media/Files/autismoutcomes/publications/National%20Autism%20Indicators%20Report%20-%20July%202015.ashx
Center for Autism Research. (2020, June 16). MEDICAID FOR ADULTS WITH DISABILITIES. CAR Autism Roadmap.
DaWalt, L. S., Hong, J., Greenberg, J. S., & Mailick, M. R. (2020). Mortality in Individuals with Autism Spectrum Disorder: Predictors over a 20-Year Period. Autism, 23(7), 1732-1739. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6713622/
Kagan, J. (2020, August 8). Special Needs Trust. Investopedia. https://www.investopedia.com/terms/s/special-needs-trust.asp
Powers, D. (2019, May 22). APPLYING FOR SOCIAL SECURITY DISABILITY BENEFITS WITH AUTISM. Organization for Autism Research. https://researchautism.org/applying-for-social-security-disability-benefits-with-autism/
Special Needs Answers. (2015, February 1). Housing Options for Adults with Special Needs. Special Needs Answers. https://specialneedsanswers.com/housing-options-for-adults-with-special-needs-14975
US Department of Housing and Urban Development. (n.d.). HOUSING CHOICE VOUCHERS FACT SHEET. US Department of Housing and Urban Development. https://www.hud.gov/topics/housing_choice_voucher_program_section_8
