“I can’t ever die….” (or, Fear of the Future)

Not long after a child is diagnosed with autism, and the realization that the child will quite likely require lifelong care/support, many parents go through a phase of fear about what will happen once the parent dies.  Because of the incredible amount of effort and involvement required of parents as children grow, it is common for parents to believe that they are the only ones that can provide their child what they need to grow and thrive.  The comment, “I can’t ever die, what would happen to my child?” is all too common among parents of autistic children.  This unknown future adds an extra level of stress to parents who are already at the breaking point of trying to figure out what is happening and what they can do for their child. 

Though this will be an ever-present anxiety for parents, there are things that parents can do to help ease this stress.   In most cases, these are things that all parents should do anyway.  Some things you should do when your child is still a minor, in no particular order:

• Establish a Special Needs Trust for you autistic child
• Maintain a current Will, that includes guardianship for your child.
  • It is important to make sure you discuss this with the people you want to take guardianship of your child
  • The Will should include, as much as possible, the resources (money, etc) that the new guardian will need to help raise your child
• Ensure you have adequate life insurance, and that your child’s Special Needs Trust or designated guardian are the beneficiaries
• Maintain an updated (annually is probably good) file of paperwork related to your child’s treatment to date, and keep it with your important personal documents (like your Will).  This file should include anything related to diagnosis, meetings with school district to establish need for support, past IEPs, etc.  (This is also very useful to have for yourself while you are alive, and will greatly ease the transition from one school district to another if you ever move.)

This is not an all-inclusive list, but provides some basic guidance.  Obviously, you should consult an attorney qualified in the areas of Special Needs Trusts and Wills (may not be the same), as well as a tax attorney/consultant to understand the tax implications of the trusts, life insurance beneficiaries, etc.

This can all be daunting, especially when added to the stress and expense of just trying to figure things out in the early days of living with autism.  But this is short-term investment of time and resources that will pay off well in the end.  And once you get this fear out of your mind and dealt with, you can start focusing on the present and helping your child live in the world.

What happens when the autistic child becomes and autistic adult?  I’ll cover that in a later post.