(This article in its original form was posted on The Family Room blog on May 27, 2007)
Susan asked an excellent question of The Family Room contributors recently: How do we as therapists talk to parents about a child’s prognosis?
Parents of children with autism spectrum disorder (ASD) sometimes ask, “What is my child’s prognosis?” and that is understandable. As a parent, it is likely that I’d be asking it myself. However, it may be as difficult for therapists to answer as it is for parents to ask. For one thing, what do parents mean by “prognosis”? Does it simply mean, “What will the outcome be for my child after all this therapy? What will his future look like?” Or is it a way of asking, “How close to typical do you think my child will become? Will he eventually blend in with his peers more?” I always ask families to bear in mind just how broad the range of “typical” really is; it’s a moving target. Is your typical the same as my typical? Is “quirky” as okay with you as it is with me? I like to think more in terms of, “How comfortably will this child be able to socialize, play, learn, and work with others? How can we help him be his best self and be happy with who he is throughout childhood and into adulthood?”
The short answer is, we don’t know for sure. I do wish I had a crystal ball. I wish I could look a parent in the eye and say with confidence, “Oh, your child will be just fine. Simply do x, y, and z like the Smiths did!” But that would do the family a great disservice.
Over the years, I’ve occasionally started working with a child who appeared to have everything in place to make changes rapidly and yet the progress was slower than I expected or we hit unexpected plateaus. Conversely, there have been times when I doubted in my heart of hearts how far I could move a child up the developmental ladder and then was happily surprised to see him gain new skills quickly once a few new strategies were in place. Without a doubt, I am better at predicting this than I was when I started out as a therapist; experience makes a big difference. But I can still be surprised, because children with special needs are as unique as everyone else, and each has to follow his or her own developmental path. We often wish we had it ahead of time, but the child holds that map and the path is only shown to us gradually. This is as it should be, because in fact it has not yet been drawn.
What I can say to families is that I pay attention to a cluster of “good indicators” of a positive prognosis, which to me means that the child will have the best shot at growing to his or her fullest potential, no matter what the diagnosis or how old the child is at the time.
When a parent asks me, these are my top suggestions for a positive outcome:
1) Involved caregivers. Now, hold on a minute! You do not necessarily have to quit your job, no matter what the pediatrician suggested or that mom informed you in the waiting room at OT. But you do need to be highly involved with your child’s intervention program. You do need to make sure your child’s IFSP or IEP has appropriate, attainable goals and addresses your concerns. You do need to know all of his therapists and what they are working on. You do need to carefully hand pick any private therapists you hire and be as involved in sessions as you possibly can be. Organize team meetings with any private therapists. Have regular communication with them. Ask lots of questions. Get terms defined clearly. And you need to know what you can work on at home – and do it! It’s a great deal of work to do this well, whether you are working outside the home or not, and there is no point in sugar coating that.
2) Quality therapists. Another key to a positive prognosis is the quality of your child’s intervention team rather than the quantity of therapists. You need to hear from the therapists on a regular basis; if you don’t see the therapist every week, be sure you are receiving notes or regular phone calls to discuss how things are going. I’d prefer to see a child working with just a couple of excellent therapists rather than running around to see many different people who are working on different goals in different ways. Because if your child is doing that, how on earth can you as a parent keep track of what each therapist is doing, and generalize the goals at home? And also, isn’t everyone in the family stretched too thin? In the long run, who does that benefit?
3) Quality, prioritized goals. When it comes to goals (just like therapists), my rule of thumb is “less is more”. It is far better for your child’s team to be working in a coordinated manner on a set of prioritized goals than to have them each working on their own set of many. In the most effective team meeting I’ve ever attended, the parents asked each therapist to bring their top three therapeutic priorities for their son and share those. We found a great deal of overlap among disciplines and as a team our job was to choose 3-5 main areas that we would all focus on for the next six months. It made a tremendous difference. It is not common practice yet, but school programs using the SCERTS Model are already doing this. The entire team chooses no more than 8 goals for each child, and some of those goals are what we call “transactional supports”, meaning that they are goals for the child’s teachers and parents.
4) A developmentally-based program. This cannot be stressed enough. If I see a child with a therapeutic team that is focused on teaching only academic skills before foundational skills are truly in place (e.g., joint attention, referencing, reciprocity, emotion-sharing, perspective-taking, non-verbal communication skills), I won’t feel as good about the prognosis. Perhaps he will succeed academically in school, at least for a few years, but his program has not addressed his social-emotional needs. And believe me, when it comes time for your grown-up child to get a job, it is not going to be those discrete academic skills that pay off in an interview or help him keep the job. It is going to be his ability to interact with others and work as part of a team. Every child needs an appropriate program that meets him right where he is and facilitates his climb up the developmental ladder. It’s not that academic goals should be put aside completely, but rather that we need to look at a child more holistically.
5) An integrated team. Your child’s team, whether it is made up of public therapists, private therapists, or both, have got to communicate with each other and with you. Caregivers must always consider themselves a critical part of the team. Team meetings are an excellent way to do this, although they can be challenging for busy parents and therapists to coordinate. (Most of mine end up as dinner meetings, either at the family’s house when the children are asleep or at a restaurant.) I have seen many families in Chicago set up a Yahoo! Group or Google Group for their child’s team, and this has been an excellent forum for therapists and parents to communicate notes, reports, comments, and questions. These are private and you can have an email sent to you each time there is a new post; I highly recommend it. A coordinated team is a committed team. And a committed team is working hard on behalf of your child. Therefore, integration of services will naturally lead to improved prognosis.
Every child is different. But until someone hands me that crystal ball I am comfortable relying on these other factors.