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.
WRITTEN BY SAM BLANCO, MSED, BCBA
Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.
Recently I received a phone call from Barbara, the mother of a 14-year-old boy who was displaying inappropriate behaviors on the train during his commute to school. We had put an intervention in place that had been successful for two months. But Barbara reported that it wasn’t working as well anymore, and the inappropriate behaviors were increasing in both intensity and frequency.
Barbara was concerned and fearful that her son’s behaviors could put him in danger. As we began discussing each incident in detail, it became clear that Barbara and her son’s other caretakers had unintentionally stopped following the intervention. A strong intervention will have multiple components, so straying from the intervention is quite common for both parents and teachers (including myself). It’s important to try to address it before it happens to help ensure long term success for your learner.
There are two simple strategies you can implement to help everyone stick to your intervention.
Write it down. Some parents I work with choose to print out the steps for their child’s intervention and place them near their computer or in their wallet so they see it on a regular basis. Having access to a reminder of the steps can be an essential part to ensuring success. For example, one of the steps in Barbara’s son’s intervention was access to his favorite comic books with new comic books available every 7-10 days. Barbara put a recurring reminder in her phone that was scheduled to appear every 7 days. Having the visual reminder helped Barbara and her husband stay on schedule with replacing the comic books in their son’s travel backpack, as well as stay on track with all the steps involved in the intervention.
Check in on a scheduled basis. Barbara and I have set up monthly conference calls for the two of us and any other adults that supervise her son on the train. Each call lasts about 30 minutes and focuses specifically on maintaining the intervention, promoting independence, and systematically reducing the supports her son requires. Depending upon the behavior, you may need to check in more or less frequently.
Barbara’s son has now gone eight months without experiencing any increases in the inappropriate behaviors he once displayed. Because Barbara has instituted the two strategies above, we have also been able to systematically reduce the number of prompts and the frequency of reinforcement so that her son is coming closer and closer to independence.
**Name and identifying characteristics have been changed to protect the identities of my clients.