Autism Future Planning: 5 Factors to Consider

Are you overwhelmed by the thought of future planning for your loved one with autism?

Looking Ahead

A diagnosis can be shocking. You freeze. Unable to think, to move, to decide, to do. But, over time, you learn to both live in the present and plan for the future. It can be challenging just to get everyone out of bed, and wash, dress and feed them on a (semi-)regular basis. Add in ever-changing online and hybrid school schedules, telehealth appointments, and other aspects of parenting in a pandemic, and it’s no wonder you are at your breaking point.

Silver Lining

While we certainly didn’t wish for this pandemic, it has certainly afforded us the time and space to take stock of what Mr. D. needs and wants when everything else is stripped away.  He has spent most of the Covid shutdown in water, with maybe a total of 1-2 hours daily of instruction/therapy. Yet he has made great improvements, met several IEP goals and is much more proficient with his AAC device – all because we believe his sensory system is more regulated. This has caused us to entirely rethink our autism future planning for him.

Planning for the Future

Whatever age or stage your child is in, I encourage you to take some time to consider these five areas. Three were poignantly summed up by Feda Almaliti in an interview filmed just a few months before her untimely death – with her son – in a house fire.  She wished for her late son, Mu, to have “a home, a friend and something to do.” Underlying those universal wishes are two other factors that have felt all the more tenuous in recent times: health and finances.

1) Longevity: Health and Wellness

Autism future planning involves the whole person. Managing medical diagnoses are only part of this – also important to consider are ways your child stays active, their diet, their sleep habits.  Assess what needs exist now, and reflect on how they might change over time.

2) Flexibility: Finances

In the short term, this probably has a lot to do with health insurance, rent and mortgage payments, and supplying the never-ending “extras” of autism – specialized clothing, special foods, and the next new device that promises to address the biggest headache in your home. Those needs will all continue into adulthood – so now is the time to start understanding the labyrinth of public services like Social Security, Medicaid, and more — especially if your child has a high level of needs.   Autism future planning calls for flexible, creative financial planning.

3) Stability: Housing

Right now, your child is probably living with you – wherever you have been quarantined for much of the past year. Quarantine can teach you a lot about what works – and what doesn’t. Maybe it can help you project what type of housing setting would be best for your child. Housing is core to autism future planning. Hundreds of thousands of adults with developmental disabilities live with their aging parents – a precarious situation. If you feel overwhelmed at the thought of this process, start with the Autism Housing Network’s housing guide, titled A Place in the World – it really lays out the terminology in an approachable way and will help you to get a handle on the vocabulary you need to plan in this area.

4) Accessibility: Educational and Vocational

For many autistic children in the U.S., the core of education is the IEP, or Individualized Education Plan.  The plan can last until the individual is 22, at which point many parents and guardians describe their children as falling off a “cliff” of services, into a relative abyss.  As with all individuals, it’s best to focus on the zone of proximal development.  Meaning build on their strengths, and then push them just the slightest bit beyond that to achieve growth.

Again, the minimalist programming afforded us (by necessity) during the pandemic has helped us to refocus on what progress looks like for Mr. D. Our biggest takeaway – which we had strayed from under the guise of getting him more and more services – even the smallest amount of instruction goes much further when his sensory needs are adequately met.  And it seems that four to six hours in some form of water is a huge part of filling up his sensory bank.

5) Inclusivity: Quality of Life

This is perhaps the most foundational aspect of your child’s life, and often the one that falls to the bottom of the heap. If you have not already, take stock of what brings your child joy. First, try to incorporate as much of that as possible into their life now. Then try to envision a life going forward that will allow you to support, not fight against, accessing this. For us, the answer has become clear. It’s time to make our home-away-from-home into Mr. D’s year-round home. So we are wading into the world of disability housing and creating a landing pad for him to have supported independence as a young adult, as well as year-round access to warm water in Hawai’i.

In the words of Indian author and activist, Arundhati Roy, “Historically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next. We can choose to walk through it … lightly, with little luggage, ready to imagine another world. And ready to fight for it.”

So allow yourself to imagine what sort of hope and possibility lies on the other side of the gate. Our son is just 12, but autism future planning weighs heavily on us as he has a need for a high level of support.  It’s never too late — or too soon — to start thinking about the future.