It’s Puzzling When There’s a Question of Autism – A Table Talk Wednesday Recap

Written by Julie Higginbotham, Senior Case Coordinator, Mecklenburg County CDSA

Wow, what a great crowd we had this month for our Table Talk Wednesday event!  It surely was a hot topic as we discussed what happens when there’s a question of autism when working with families in early intervention, quite appropriate for April’s Autism Awareness Month.  Pamela Orf, CBRS Provider and Owner of Learning Connections Unlimited, got us started with our round-robin introductions so we could put some faces with some names (you really should come and meet some of your wonderful colleagues and teammates!).  Then Christine Milano, Licensed Mental Health Clinician with the CDSA, brought in some interesting statistics from the Center for Disease Control and Prevention:

• 1 in 68 children are diagnosed with autism.
• In North Carolina, the statistic is a bit higher, 1 in 58.
• For boys, the statistic is even higher, 1 in 42.

That’s a lot to take in, and as the group discussed several aspects related to serving children and families when there is a question of autism, they all came back to establishing relationships and teaming.

• How should we approach a possible diagnosis of autism?  In some cases, when we first meet with families who have been referred for Infant-Toddler Services, we may feel like we know on the front end that there is potential for a diagnosis of autism.  We certainly don’t want to scare parents by bringing it up just as we’re trying to establish a rapport, but we do want to find out if it’s been mentioned to them by anyone else, like the pediatrician.  We can ask questions about their last well baby visit, as well as questions about the referral and the parents’ concerns related to that information.  Parents may even have other members of the extended family or contacts in the community who have brought it up.  Sometimes parents will say it, sometimes they won’t.  We want to be careful, though, about bringing it up on the first visit.  One person talked about some flags seen on a first visit with a family that weren’t present on the second, so it was a good thing that autism wasn’t mentioned too quickly.  We really have to look at each situation individually – some folks felt like we could be doing a disservice by not mentioning it at some point along the way, while others talked about the fact that our role could be to address what we see and hold off until parents are more ready to talk about it.  Someone else mentioned approaching it from the “rule-out” perspective, rather than from the view of confirming a diagnosis.  There are any number of ways to support families in general, and we need to get to know each family individually to get a better handle on how best to proceed.
• Sharing the load with other providers is invaluable.  This was a very impactful statement made during the discussion.  As professionals, regardless of the role we are fulfilling on the IFSP team, we often feel some stress with potential or confirmed autism diagnoses.  We want to make sure that we’re working together to be consistent and helpful with families, and the group talked about several proactive ways to promote more teaming within the IFSP.  Not only is this a great thing for families, but it also keeps us from feeling like we’re out there on our own.  One way to support teaming is to keep up with communication with other providers in the home.  IFSP reviews are a perfect time to collaborate on outcomes, but it’s also important to put faces with names and exchange updated contact information.  The service coordinator should also double-check to make sure that the team page on the IFSP is up-to-date since everyone gets a full copy of that as well.  Providers can consider completing joint visits so they can collaborate with families when there are outcomes that need a bit more support, and the team can always communicate between visits to help keep information consistent for families.  Being open to constructive feedback from team members not only can help the bigger picture, but it’s also an opportunity to learn from your colleagues.
• Just because it didn’t come up in the beginning doesn’t mean it won’t come up later.  One person talked about a tough situation in which the providers were seeing several things that were consistent with an autism diagnosis, but the family just wasn’t ready to talk about it.  The door opened, however, when the family expressed concerns about a lack of progress that had been made thus far.  The service coordinator was able to ask the family some open-ended questions about why the family thought that might be the case and facilitate a conversation with the team.  It makes for a much more positive experience for families when we are able to engage in more joint planning and really take their point of view into consideration.  It could be that additional assessments would provide helpful information for the IFSP, and we always want to be asking parents how they would define progress in their own routines.
• “Where I am is always the right place as a parent.”  This was, by far, my favorite quote of the session.  As the group discussed possible scenarios when there are already considerations about autism for a child, there were many perspectives to think about.  Some parents may be ready to jump in head-first into anything they can access, while others may feel defensive or just sad.  One person mentioned that some families have cute ways to “explain away” behaviors, such as flapping, spinning, or other things we might find consistent with an autism diagnosis.  Because we know that early intervention is so impactful, we have to temper that with assessing where the parent is in the process because it’s not about us.  We might be thinking about the child exiting the program at 3 years old, but the parent could be thinking about their child in high school and driving.  Our job is to respect their emotions and thoughts, and if we keep focusing on the parents’ concerns and priorities, we’re doing everything we can to be supportive, regardless of where that conversation ends up. 

The bottom line is that there is no “right” way to bring up a possible autism diagnosis with a family, and there is no exact formula to what that might look like.  It may feel uncomfortable to address it, but when the time is right to do so, we should always keep in mind that we’re talking about a child and a family, not just a diagnosis.  Autism doesn’t have to be a scary word, and even though it’s so prevalent in the media and in the forefront of many parents’ worries, we have the opportunity to do amazing things to help families feel more confident and competent as they support their beautiful children in their daily routines.  The most successful scenarios discussed were the ones where there was positive support within whole teams that started where the family was in the moment, and that should be consistent regardless of the situation.  So what do you think?  What works best on your teams when there’s a question of autism, and what turned into a learning experience for you?

Locally, we have many available resources for families.  Smart Start of Mecklenburg County has developed an autism collaborative called Guiding Parents to Services, or GPS, and they provide varying levels of support to children under the age of 5 and their families.  The Autism Society is another wonderful resource on both a local and national level for both families and professionals.

Last, but not least, be sure to join us for our next Table Talk Wednesday, where we’ll be talking about The Tiniest of All…Preemies.  Please invite a colleague to come enjoy the conversation – there’s much more information than I could ever fit into these Recaps!