ASD and the Important Role of Financial Planning

Hello, and Happy Autism Acceptance Month! 

Every April, we have a special opportunity to foster better understanding and acceptance of autism spectrum disorder (ASD). Autism Awareness Month is officially evolving into Autism Acceptance Month, and for good reason. Simply put, awareness is not enough, and the autism community is striving for the greater goal of acceptance for our neurodiverse community members.

According to the Centers for Disease Control and Prevention (CDC),¹ about 1 in 36 (2.8%) of 8-year-old children in 2020 were identified with autism in 11 communities in the Autism and Developmental Disabilities Monitoring Network. This represents an increase from 1 in 44 children in 2018, and 1 in 54 children in 2016.

As the need for financial planning in the autism community continues to grow, financial planners can be pivotal team members serving individuals with disabilities and their families. Expenses associated with intervention and support can be staggering, and retirement plans may include support for a disabled adult child well beyond their parents’ lifetime. 

When faced with these challenges, we believe families from all wealth levels can utilize multidisciplinary special needs planning to secure necessary supports, promote independence and foster their financial well being.

Share your circumstances and communication preferences

The first step in CFP Board’s seven-step financial planning process² is “Understanding the Client’s Personal and Financial Circumstances.” Some families are understandably private and may not wish to share details about a disability. However, it’s important to develop a trust-based relationship with an advisor who can understand and appreciate the challenges and blessings of navigating disabilities, including ASD. Your personal and financial circumstances will inform your customized recommendations, both quantitatively and qualitatively.

Language is impactful, and how we speak to one another and reference an ASD diagnosis can be a sensitive topic. Person-first language seeks to avoid labeling a person by their diagnosis. For example, with person-first language, one would say John is a person with autism, rather than John is autistic.

While person-first language is generally accepted, there are still many individuals with autism who identify as autistic and prefer not to use person-first language.

My advice is to share your communication preferences so you can be communicated with in a way that best suits a collaborative and positive engagement. Ultimately, the goal should be to honor and accept that children and adults with ASD are important members of our families and communities.

Planning should be geared to the individual

How does ASD affect people? It’s impossible to paint a clear picture using a broad brush. ASD may manifest differently in boys than in girls, and so-called “high functioning” autism represents a subtype previously referred to as Asperger’s Syndrome.³

According to the CDC,

People with ASD may behave, communicate, interact, and learn in ways that are different from most other people. There is often nothing about how they look that sets them apart from other people. The abilities of people with ASD can vary significantly. For example, some people with ASD may have advanced conversation skills whereas others may be nonverbal. Some people with ASD need a lot of help in their daily lives; others can work and live with little to no support.⁴

We are all unique—hopefully this goes without saying. Just like any person, individuals who are on the autism spectrum, which may include our family members, friends, classmates and colleagues, will have their own idiosyncrasies, special interests and behaviors. Some differences can create significant challenges for those with ASD, and comorbidities may further complicate treatment and planning needs.

It's important to understand each individual and plan according to their specific strengths and weaknesses. Special needs planning can be nuanced and resources will vary based on each family’s circumstances and providers, as well as state-level public benefit programs and eligibility.

Take time to plan ahead

Day-to-day life can be hectic, especially when caregiving for those living with ASD. Financial planning may seem like a heavy lift in the midst of school, work, therapies and other appointments. Remember to put yourself first and balance the demands of the moment with your wishes for the future.

While focusing on what we know today and what we hope for down the road, we can try to build a plan to optimize resources. Depending on your circumstances, the to-do list, while long, can be prioritized and chunked to make it more manageable. Areas of focus may include:

• Retirement and investment planning, with support for a disabled adult child
• Insurance planning for life, disability and long-term care
• Tax planning for medical expenses and specialized schools
• Cash flow and budgeting to establish savings strategies
• Health insurance coverage needs and planning for medical costs
• Trust and estate planning, including multi-generational wealth transfer
• Public benefits planning, including SSI, SSDI, special needs trusts and ABLE accounts

Planning can make us more adaptable as new challenges arise. We may not know the extent to which interventions will work, or what the future looks like for younger children. As the saying goes, the only constant in life is change. In my opinion, planning can ease the burden of uncertainty and help promote peace of mind.

Acceptance and awareness make the future brighter

I believe the future for individuals living with ASD and other disabilities grows brighter with increased awareness and acceptance. Financial planners can play an important role on professional teams for families that are looking to build, preserve and transfer wealth, including crucial support for disabled loved ones.

 

¹ Source: https://www.cdc.gov/ncbddd/autism/data.html
² Source: https://www.cfp.net/-/media/files/cfp-board/standards-and-ethics/compliance-resources/guide-to-financial-planning-process.pdf
³ https://emedicine.medscape.com/article/912781-overview
⁴ Source: https://www.cdc.gov/ncbddd/autism/facts.html

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