This is the third and last blog (for now) I am writing with regards to behavioral vs. relational approaches in intervention. We have covered essential ground in these past months and we want to take these thoughts even deeper at this time. I spoke at the ICDL conference hosted by the amazing Rebecca School in New York this year. My talk was on this very topic of symbolic thinking. I showcased and reflected on a number of seminal cases over the past years. In preparing for this talk, I was once again struck by the children who taught me and was pondering the use of “high” vs. “low” functioning Autism. I will illustrate through a special girl that I have come to care for dearly.
I have been working with a lovely girl (we will call her Amy) for multiple years now, though we have been working in a very non-traditional way. The family lives too far from our center to visit, but our Floortime player lives closer to them. We designed a program where she would visit the home once monthly for 3 hours each time, video record at least 2 hours and edit the video. I would then review and narrate on the material before it was finalized and sent back to the family. I do this practice for many clients and therapists across the globe, but Amy took this work to a deeper dimension. We always add a disclaimer on the video to not watch the footage with the child present. Well, in this case, this notion was not followed and we only realized this 3 years into the process.
The videos were numbered and upon one visit, Amy mentioned a number to her mom and mom immediately located the number of the video. Amy fast tracked to a certain place in the video! Long story short, these videos became a lifeline for this growing young girl. When Amy became a pre-teen, she would start requesting mom when it was time to have our play partner (Janine) visit her. Amy would plan the visit to show Janine different pieces she wanted to have on video. At this time, I was providing Amy with a little “life” lesson at the end of each narration, where I was talking directly to her. I had never met her, but she knew my face, my voice and she referenced me as Ms. Maude.
She would then say on the video “show Ms. Maude” or simply “Ms. Maude”, as Amy experiences great challenges verbally expressing herself. After we did Tomatis sound therapy for one year, she started vocalizing and saying many more words, so we recommended voice lessons, which mom promptly started. Since then, she has performed in local concerts arranged by her voice coach, as she finds it much easier for her to express through song. When Janine visits, Amy would do a number of things to lead us along within her mind to a topic she wanted clarity on. She would sing a certain verse, go through the house and point at different pictures, open her wardrobe and point to certain clothing and, as the time goes, we are then able to piece her communication together.
Our first discovery of this was when she wanted to explain her feelings of embarrassment when her mother corrected her in front of her peers regarding the height of her pom-poms during a cheerleading performance. She wanted me to talk with her on the feeling of embarrassment! And so many other feelings followed: rejection, disappointment, envy, her need to have what others have, etc. Many nights, Amy would fall asleep by the sound of my voice. (Please let us not make this about me, it was all her.)
We did meet once in later years and she simply could not really connect, though we all knew she was acutely aware of me. Her connection with me was through video. She could rewind and review videos for hours in order to make sense of her emotions as she is not expected to respond and is in complete control as to how much she was able manage at a certain point. In her own way, she was connecting different files in her mind and has been able over the years to connect many emotional dots for herself.
Amy is much more social today in her own way, even though she continues to struggle with verbal expression. I hope to one day work with her mom to write up her case study. She helped shape my process of understanding how much autistics do have the capability of symbolic emotional thinking. She persevered and struggled through and found a medium that she could use with which to communicate. Her mother is an amazing woman, who “feels” her daughter’s needs - Mom’s response to Amy is directly linked to Amy’s ability to follow through.
I am hoping this case speaks to you as it did to me. Autistics are symbolic, we have to help them to find a way to express in safety and security. If we only see the surface, if we only consider their atypicality as “different” from ours, we are missing the soul underneath. We are causing these very big emotions to remain suppressed, unanswered, providing a message that what they feel is not important. How would it feel to never have your emotions validated? Is it not safer to simply remain in your own world, do things by rote memory as it does make life easier, but not to be enjoyed for who you are? Each autistic has an inner sense of themselves, they are no different from you and I. We have an obligation to them to dig much deeper.
I know this was long, but a final thought as we conclude: The pendulum always swings to and fro. Right now, behavioral therapies are enjoying a great time of acceptance as it is the only model that is covered by insurance. As time goes by, more and more parents will realize that behavioral therapies do not lead to complex social thinking and, as this is a basic essence of life, they will start to question legislature for providing only 1 option of care for their child. When that day comes, I really do not want to be the person sitting in that seat that has to answer to a group of angry parents. Many years will go lost before this really happens, but it is inevitable.
Coming back to discussing high vs. low functioning autism, we really have to think about what we are saying. Are we saying “low” functioning because from the outside they appear to look more impaired, or perhaps have a lower IQ, or a slower response rate to intervention? Any of these will provide professionals an excuse to not need to dig deeper and find the real person underneath. Is it true that these options can exist? Of course it can, but it should not be a reason for us to assume by judging a book by its cover. Everyone deserves the right to be “known”, just as all of us have the right to make known what we want others to know. As professionals, it is our job, our work, to find the missing link that will provide the key to the inner world of each client in our care.