I have mappings in my mind for Beth’s language that I call X = Y. The words that Beth speaks in a given situation are X, and the actual meaning as I interpret them in my mind are Y. For example:
1. Seat Belt Panic
- X= Beth is sitting in her car seat in the back of the car and I am driving. She looks at the passenger seat belt dangling at side of the seat back and says, “Take it off! Take it off!”
- Y=Beth means “Take the passenger seat belt and buckle it in.” When the seat belt is buckled, it immediately calms her. Then she sometimes says “Want Daddy.” My husband usually rides in the passenger seat, and I think she is missing her Daddy.
- X=Beth says, “I don’t need them anymore!”
- Y=Beth means “I need to go potty.” It is a line from her potty book (I don’t need [diapers] anymore).
- X=Beth says, “Want to see Elmo.”
- Y=Beth wants to watch TV. She used to watch Elmo, so she still says “want to see Elmo,” but she really wants to see something else on the TV. She gets upset if I put Elmo on, and calms down if I put on another video.
We have tried to help Beth replace the language over and over (e.g. I make her say, “I want to watch TV” instead of “I want to see Elmo”), but the initial phrase remains stuck in her mind. She knows what a TV is, what turning on something means, and who Elmo is, so knowing the individual concepts is not the problem. She has learned to speak in phrases in their context, and, even though she understands the individual words within a phrase, she associates the phrase “I want to see Elmo” with turning on the TV.
Beth’s language delays and peculiarities are frustrating for the entire family, but we are grateful that she can request things (most of the time, and often clearly) and we are seeing some progress. The puzzling fact is that Beth spoke early, she spoke many words when she was 2 years old, and still she ended up with a severe language delay.
Beth’s Language Development Path
Beth spoke early according to all of the developmental charts. At her 2 year old well visit, when the pediatrician asked how many words she spoke, I happily told him that she spoke hundreds of words and even spoke in sentences. She already knew letters, numbers, and loved books. Since Beth was screaming her head off, as she usually did in doctor appointments, there wasn’t much opportunity for an in depth discussion about language development. He quickly got to the exam, finished the visit, and we were on our way.
What I didn’t know at the time was that most kids learn language by starting with one word (e.g., “milk”), then they put two words together (e.g., “drink milk”), and so on. Also, there is usually a lot of immediate feedback with many back and forth exchanges between parent and child. But Beth’s language was largely delayed echolalia applied in context (i.e., she restated phrases or sentences she learned from books and people, and applied them to exact or similar situations days or weeks later), and the back and forth exchanges we had with Beth were not as advanced as her peers.
The person who gave us Beth’s autism diagnosis said, “But she has words, and that is a good sign.” After starting therapy, many therapists made similar statements like, “Beth has so many words,” “She has a lot of language,” and “With her current language, I think it will be okay in the end.” But I realize now when it comes to autism, where a kid starts with language is no indication for how well therapy will go and how fast a child will progress. Beth is almost 5, and a couple of months ago I had her language tested. She is at just above a 2 year old level, and I think that is a fair assessment. She is stuck in time, with a small bit of progression. After countless hours of therapy and a lot of effort by her dad and me, her primary mode of communication is still requesting items. Beth’s requesting gets mixed up frequently or disappears completely, only to be replaced by whining and screaming. When I tell new speech therapists our story, they tell me it does not surprise them. They have seen a lot of kids start with no words who flourish, while other kids start with a lot of words and stay stuck or progress slowly. When it comes to autism, there is simply no way to predict the developmental path or eventual outcome.
Stumbles and Small Advances
We tried the Verbal Behavioral Analysis (VBA) approach administered in intensive therapy, where the therapists tried to go back and start with nouns and build up language in the way a typical kid would develop. The approach made sense to me and I was very excited about the therapy. But very little progress was made in over a year of therapy. Beth still had a lot of trouble getting the words out, even when she clearly wanted something very badly. I suspect the VBA approach did not work well for Beth because she simply does not learn language like a typical kid, so that method of building language block by block didn’t make sense in her mind.
About 7 months ago we changed to Floortime (a therapy where you follow a child’s lead and interests, and focus on increasing the amount of back and forth communication between parent and child). A few months ago, the Floortime consultant suggested we give Beth as many choices as possible throughout the day. The idea was to take the pressure off by giving Beth the words she was struggling to get out. After months of giving hundreds of choices a day, we are at the point that Beth only sometimes needs the choices when she gets stuck. Using this approach, we have seen an increase in the level of requesting, increase in the range of items requested, decrease in frustration, and have gotten some back and forth going between Beth and ourselves. She is also answering questions more readily and following directions much better.
The Next Step
To get Beth to the next level in speech, and on the advice of our Floortime therapists, I have been on the hunt for a speech therapist who does Floortime. Many therapists say they do Floortime, because they try to incorporate a child’s interests into the session. But, as I understand it, the speech therapist who does Floortime must be attentive to subtle cues from the child and will go with those cues wherever they lead, using creativity to incorporate new speech ideas on the fly. The therapist must live in the moment and let go of agendas.
After trying the third speech therapist in a month, Michele Halfpenny, I told my husband I thought I finally found a good fit. I said to him, “Of course, this is still going to be hard, and it is going to take a long time for Beth to advance with her language. But I am encouraged that Michele uses Floortime, is a good listener, and asks a lot of questions.” My husband agreed we should go with Michele and it was a surprisingly quick and stress-free decision. And then it hit me. My husband and I are finally at the point where we are more confident in our therapy decisions, and we accept there is no quick cure for Beth’s language issues. What is important is that Michele has the same basic philosophy for teaching Beth as we do, and she is patient, persistent, and treats us as a partner in the process. So, with the help of Michele, I hope Beth will soon be moving on to her next step in the speech process, whatever that may be.
Thanks to the therapists at A Total Approach (http://www.atotalapproach.com/) for their guidance and to Play Project (http://www.playproject.org/) for creating a Floortime model that is run by parents under the guidance of therapists. Also, thanks to speech therapist Michele Halfpenny (http://www.halfpennyspeech.com/, firstname.lastname@example.org), who is working with Beth at my daughter’s music therapy site ( Milestones in Music, http://www.milestonesinmusic.com).