Your Child's Autism Diagnosis Long Term

In the years immediately after a parent learns of a diagnosis of autism, it can be especially challenging to think of your child’s autism diagnosis long-term. But as parents advocate for their child, and as practitioners work with the family to create goals for that child, the long term must be considered. Here are a few suggestions to help with considering the long term, while focusing on short-term goals:

• Create a vision statement. One of my favorite books is From Emotions to Advocacy: The Special Education Survival Guide by Pam Wright and Pete Wright. This book covers everything parents need to know about advocating for a child with special needs. One of the first things they suggest is creating a vision statement. They describe this as “a visual picture that describes your child in the future.” While this exercise may be challenging, it can help hone in on what is important to you, your family, and your child with special needs in the long term.

• Look at your child’s behaviors, then try to imagine what it might look like if your child is still engaging in that behavior in five or ten years. Often, behaviors that are not problematic at three are highly problematic at 8 or 13 years old. Such behaviors might include hugging people unexpectedly or (for boys) dropping their pants all the way to the ground when urinating (which could result in bullying at older ages). While it is easy to prioritize other behaviors ahead of these, it’s important to remember that the longer a child has engaged in a behavior, the more difficult it may be to change.

• Talk to practitioners who work with older students. Many practitioners only work with a certain age group of children. While they may be an expert for the age group they work with, it may be helpful to speak with a practitioner who works with older kids and ask what skill deficits they often see, what recommendations they may make, and what skills are essential for independence at older ages.

• Talk with other parents. Speaking with other parents of children with special needs can be hugely beneficial. Over the years, I’ve worked with hundreds of parents who are spending countless hours focusing on providing the best possible outcomes for their children. And while it’s impossible to prepare for everything that will come in your child’s life, it may be helpful to find out what has blindsided other parents as their children with special needs have grown up.

Sam Blanco, PhD, LBA, BCBA is an ABA provider for students ages 3-15 in NYC. Working in education for sixteen years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges, and she is the Senior Clinical Strategist at Chorus Software Solutions.