An SLP’s Thoughts on Prognosis

(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.

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Map It!

Originally posted at The Family Room blog on September 24, 2007

by Jordan Sadler, SLP

Last week, a post at the blog From Here to There and Back prompted me to suggest that the blog’s author, Kristen Spina, create a visual map of a challenging situation her son experienced at school.  The subsequent off line conversation about this with the writer – and comments from her readers showing great interest in the topic – led me to think that perhaps this is a topic worthy of further explanation.

There are many ways to use visual strategies to map out a social situation for children.  What I do in my work is ultimately a combination of ideas I have picked up over the years at numerous workshops given by Michelle Garcia Winner, SLP, who runs The Center for Social Thinking and Carol Gray of The Gray Center for Social Learning and Understanding. I give both of these amazing women full credit for the way I approach the teaching of social understanding and social thinking to children.  Their work fills gaping holes in what is considered best practice for kids with social-pragmatic difficulties right now.

The ideas proposed by Ms. Gray and Ms. Winner make perfect sense once you’ve heard them explained, but are not, apparently, intuitive to many therapists because so rarely are children (or adolescents or adults) taught this way.  In effect, we – therapists, teachers, and parents – are encouraged to approach social-pragmatic awareness not as a series of skills to be trained (as has been done in social skills groups and traditional ABA-type therapy), but as a process in which we help people to understand why we communicate the way we do. We want children to understand what kind of impact their behavior and language has on others.  We don’t say, “Look at my eyes!” to teach eye contact but rather explain, “People’s eyes are a window into what they are thinking about – if Ben is looking at the clock, he might be wondering if it’s time to go home.”   Non-verbal communication is explained in such a way that it carries meaning and becomes motivating to our clients.  Of course, there is so much more to this, and I highly encourage those interested to seek out books and workshops with the experts in this field.

I am going to provide an example of a behavior map, and in order to maintain confidentiality for my clients, I will use an experience from my own family.

When my neurotypical older son was about 4 years old, we were at a neighbor boy’s home.  Now the neighbor boy’s parents were both early childhood educators, and there was no place in the world as fun as their house.  They had a big climbing structure right in their living room!  It is no surprise that my son didn’t want to leave.  Ever.  On one occasion, after ample warnings (the “5-minute countdown”, I call it) it was time to depart.  My son refused and became quite belligerent.  After trying every strategy we well-trained adults could think of, I ended up carrying him home as he kicked and screamed; I was hugely pregnant, exhausted, and incredibly frustrated.  I know we’ve all been there in one way or another.

When we got home, I was at my wit’s end.  We were infuriated with each other.  I did all I knew how to do in that situation, which was to sit silently on the floor and pull out paper and a marker.  I quietly started to draw.  Now, let’s get something straight: I am no artist.  That is not a requirement for this!  In this situation, I sketched out the scene like a cartoon, and my son immediately sat down to watch.  It started with two boys playing happily.  Always show emotion on the faces throughout a social map! In the next frame, there was a smiling mother giving a 5-minute warning and the boys were still smiling.  As we got down to the 1-minute warning, I showed the expression on my son’s face start to shift into anger.

When the stick-figure mother announced in her little “speech bubble” that it was time to go, I drew a boy with the angriest face I could muster and limbs out of control.  But I think what was critical here was that I also drew the neighbor boy and his parents – all with concerned, sad faces – and myself looking angry.  In the midst of a tantrum, our kids are not generally aware of how their behavior is affecting anyone else.  If you can represent visually to a child the ways in which his actions affect how others think and feel, you are giving him the key to social thinking, or theory of mind. I pointed out to my son that he did not say “thank you”, nor did he say “good night” to our hosts and that when we left they were all feeling sad.  He was really impacted by this.  I explained that when you leave nicely, you are more likely to be invited back soon.

I then pulled out a new sheet of paper and we started with the same beginning but recreated the sequence of events as he would like them to unfold in the future.  He decided that he could say, “I don’t want to leave!” and he could feel as angry as he wanted to, but that he would leave without a tantrum, and we drew the whole thing as he described it.  This sounds like a very long process but we really only spent about 10 minutes doing it.  It’s not about the art – it’s about keeping the child’s attention focused on the unfolding events – so it can move fairly quickly, depending on the situation and the child’s processing speed.

We went back to that friend’s house a great many times after that night and we never, ever had a problem leaving again.

There are as many ways to create a visual map of a social situation as there are different social situations for our kids to experience.  There is no required format for this.  Depending on the situation and the age of the child, you could create a cartoon strip, a flow chart, or any other picture that shows a sequence.  The important part is that you visually and simply represent the ways in which the child’s actions impacted other people’s feelings and how they thought about him, and led to a specific outcome.  Having the opportunity to remap the situation is critical!  Your child will not learn enough from simply seeing the unsuccessful scenario portrayed; he needs an opportunity to think through an alternate ending in order to use different behavior the next time something similar arises.

Michelle Garcia Winner has a recent publication called Social Behavior Mapping which will undoubtedly provide many terrific strategies, and Carol Gray (who came up with the concept of Social Stories) has a great little book called Comic Book Conversations which outlines another means of using visual support to aid understanding of language within social situations.   There is always more to learn about helping our children and clients improve in their social thinking; we are so fortunate to have these experts as resources.

Those of you in the Bay Area might be interested to know that Michelle Garcia Winner and Carol Gray are running a workshop together December 4-5, 2007 in San Francisco. They are very parent-friendly speakers!

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