Your Child With Autism: Life as an Adult & Planning Ahead

Parents can create a successful future, but it takes planning and partnering.

Posted Feb 09, 2015

“Rome was not built on the first day. I need time to build the Eiffel Tower of my life.” - Jeremy Sicile-Kira, A Full Life with Autism (Macmillan).

Source: epicphotojournalism

Thinking about the future of our children with autism - or any other child who needs supports to transition to adult life - is scary for most of us parents.  The anxieties produced when thinking about our children as adults are the night demons that keep us up at night. Instead of sleeping we are wondering: What will happen to our son  when he ages out of school services? Will our daughter be able to get and keep a job? Will he / she have friends and a social life?Where will he/she live?  And finally, the big kicker -  What will happen when we are no longer alive?

If there is anything you’ve learned as a parent of achild with autism, is that you can’t just leave it up to the system to figure it out. You have to be involved.  When your child is a student, you hope to be able to work with the school, and you hope that your child has a teacher who ‘gets’  him, and a school administration that supports good teachers.

It’s important for parents to realize that when your child  ages out of school into adult services - your child ages out of mandated services. Under IDEA – the Individual with Disabilities in Education Act – all students are guaranteed a free and appropriate education. So even though you might not agree on what is ‘appropriate’ for your child, you can argue the case.

Once your child is no longer eligible for school services under IDEA -  because he or she has graduated from high school or aged out of school services (at age 22 in most states) - there is nothing guaranteed for your adult child.  Your adult child may be eligible for services, but that does not mean that he or she will receive services. It means they are eligible to get on waiting lists.

This is why it’s important to be planning ahead while your child is still a student and eligible for IDEA services.   This  may be the last opportunity for your child to learn what he or she  needs to learn to be successful as an adult. Waiting until your child is getting ready to leave the system or until he or she is a teenager is not a good idea. There are life skills that  every person needs to learn to be able to get and keep a job, enjoy their free time, or live in the community they want to live in.

I am not writing this to scare parents. I am writing this so parents don’t stay disillusioned in case they thought otherwise. From speaking around the country at conferences, I am astonished at the number of parents and even educators who are unaware of how difficult it can be after school services end.  My son Jeremy and I co-authored A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence (Macmillan 2012) in order for parents and educators to understand what the reality of adult services is, and to offer suggestions on how to best prepare a student with autism for real life. As well, examples of model programs that parents and professionals have successfully created together are provided. 

In the past I've written here about my son, Jeremy, and his transition to adulthood.  A couple of years ago I wrote a blog-post that is still important today about preparing yourself and your family for this transition, Autism and Parenting: Preparing Yourself for Your Child's Transition to Adult Life.

 The reality is that parents can create a successful future for their child.  But it doesn’t just happen overnight – it’s about having a dream and a plan and partnering with others. In my next blog-posts here, I’ll be discussing these important topics and providing some ideas.  It takes a village to raise a child into a successful adult and as the parent, you are the most important piece.