“What does my child’s future hold?”

Dania Jekel, Executive Director
Blog Post

In years past, when a child received an autism diagnosis, it was often with a grim prognosis. Parents were told a long list of things their child would probably never do, like live independently or go to college. Today, we realize the diagnosis of autism alone doesn’t foretell the future. However, we don’t know why some children become independent and even very successful adults whereas others continue to need significant, ongoing support.

There are few long-term studies to explain which neurological factors predict a child’s path as they grow into adulthood. But the truth is, I doubt very much that research in this area would be terribly accurate in predicting any individual’s future ability. There are so many variables to consider, such as age of diagnosis, a person’s particular combination of strengths & challenges, environment, effectiveness of (and willingness to accept) supports, and co-occurring medical or mental health conditions. Ultimately, it’s extraordinarily hard, if not impossible, to predict the future of someone on the autism spectrum.

If you have a child on the spectrum, I want to acknowledge that this uncertainty can take a toll, especially for parents who prefer or need clarity for what’s coming next. Parents may see their children’s peers have a much clearer path, and the uncertainty for their own child can be very difficult to handle. Not knowing also makes it particularly hard for parents to make practical and financial plans for the future.

The main questions I hear families ask about their children are:

  • Will my child be able to live on their own?
  • Will they need support and if so, how much support will they need and in which areas?
  • Will they find friendship, love, or a partner?
  • Will they find a community that accepts them?
  • Will they be able to use the incredible skills they have?
  • Will they be able to find work that will allow them to be financially independent?
  • Will they be happy?

I know that uncertainty can exist for neurotypical children as well. Life takes unanticipated twists and turns. But in general, the question surrounding neurotypical children tends to be more along the lines of, “What kind of independent life will my child have?” rather than, “Will my child be able to live independently?”

Of course I can’t answer these questions, but I can offer some advice to parents from what I have learned from seeing children with an Asperger profile grow up during the past 30 years.

Have Patience
Remember that children on the spectrum may take a longer time to grow up than their neurotypical peers. When you are in the middle of a 2nd grade meltdown, things look and feel bleak. It won’t last. On the other hand, your child may reach a period of stability and you may think all of the challenges are over, only to be blindsided by a difficult period down the road. Be patient, and expect set-backs. Over the years, I’ve seen many kids with significant difficulties in school gradually gain maturity as they grow older and become an adult who successfully finds their place in the world. Even when a person is 25 or even 30, it doesn’t predict what the future might hold. Folks on the spectrum continue growing and maturing all their lives.

Reconcile Yourself to the Level of Support Needed
There is a wide range of possibilities here, but try to accept that your child may need on-going or intermittent support in certain areas. Sometimes very minimal support (or even just the accessibility of support) can make the difference between being dependent and achieving independence.

Be Prepared
Since you really don’t know the future, the best thing is to be as prepared as possible in case your child does need assistance as an adult. Research all the different kinds of supports available which could be relevant to your situation. No matter your income level, get information on how best to plan for the future of your child. There are private, public, and community resources to help. And don’t be shy about seeking advice from professionals who know these resources. And keep in mind many children do become semi- or fully independent needing minimal or no support. If that happens, you may have prepared unnecessarily, but you have reduced anxiety for you and your child.

Address Mental Health Issues
Over the years, I’ve seen that one of the biggest obstacles to living an independent life is when a person on the spectrum also has to manage overwhelming anxiety or depression. I would suggest that helping your child understand and address these and any other mental health issues is vitally important in order to live independently.

Involve Your Child
It is crucial to plan together with your child and give them a voice in their future. Not only will you lessen the anxiety surrounding what lies ahead, you will also help your child develop decision making & self-advocacy skills, gain an understanding of their needs, and determine what supports if any they will need in life.

And, most important:
The more understanding, insight, and acceptance your child has, the more they will be able to build a successful life. Conveying your love and unconditional acceptance will help your child be more resilient during life’s set-backs and give them confidence to find the path that’s right for them.