I tried to explain what autism looked like describing Deane’s “symptoms” in 2011 and another update two years ago. I used terms in a way I would not now. Re-reading that post opened my eyes to our evolution in the last four years. There has certainly been a progression from ownership as a family of all-things-autism in our life to recognition that it is Deane, an individual, who has autism. We are simply his family trying to figure out how to support and work together considering some unique parameters.
To continue to document his progress, I will attempt an overview of how the symptoms of autism have evolved within Deane or how they impact Deane in the world.
Speech -
Since the loss of communication and lack of phrases is what led us to originally seek a diagnosis, I cannot fully express how far we have come. Although Deane does not have extensive conversations, he will continue to speak with us for several questions and answers. He sometimes gets very excited about a preferred topic and will share everything of which he can think. This is not a disassociated list, but he is very much sharing his enthusiasm assuming the listener will feel the same. He is no longer echoic. He sings at random, which is an amusing mixture of praise music and whatever latest pop or hip hop song his dad has played for him. His spontaneous language is rich with a variety of words and ideas. For whatever reason, Deane experiences periods of time (usually a few days to few weeks) where his communication will come more fully alive. It seems to occur around a vacation. He shares many more of his feelings and the thoughts that we can see being formed the rest of the time. These are my favorite days.
Sensory -
Through Occupational Therapy and maturity, Deane has overcome many of the tactile (touch) aversions he had when smaller. He manages sound very well. You may see him cover his ears at times, but this is rarely to avoid a loud noise. He uses this method to block out sound because it is one sense he can control when he is overwhelmed. I find this happens primarily when he is encountering something too emotional - a scene in a movie, a crying sibling. Temple Grandin’s book, The Autistic Brain, gave words to Deane’s sensory behaviors better than any other collection of information. It is common to want to understand whether a child over or under reacts to sensory input. Temple discusses Carly Fleischman (a non-verbal woman with autism and co-author of Carly’s Voice) and how in a scenario of sensory over-stimulation, she is equally likely to shut down as she is to have a tantrum. This has been Deane, but I am seeing his ability to communicate through these scenarios improve regularly. He still avoids sloppy foods. His diet is still pretty narrow. He often walks with his body pressed against us looking for input. He can appear hyper-active as he pursues enough input to regulate himself. The theme of our sensory journey has been that as his ability to communicate increases, so does the ability to tolerate or modify the sensory experience.
Social/Emotional -
This is another area where ability to communicate and understanding is paramount. I would consider this my primary focus for Deane at this time. As a parent, it feels like this is an area with few research based tools available and few people with significant training. Managing the unique social and emotional needs of each child with special needs makes this work too large for schools and therapists and too daunting for parents. This is not untrue of all developing children, but most do not need all social scenarios explained, hand over hand instruction, prompting during interactions, or someone recognizing needs for breaks, etc. Over time, Deane has developed better understanding of the boundaries with his siblings. He is motivated to “teach” his little brother, Reed, new things. He is a warm and loving boy. Although he doesnt always participate, he is beginning to see the value, in sharing or taking turns with items, ideas and being in control. Hopefully a day will come when he sees how lucky he is to have a sister like Kate to constantly want him to play with her. And of course she is so lucky to have a big brother like Deane.
Deane continues to attend ABA therapy 18 hours each week. He has a weekly speech session that is shared with 1 or more peers working on social speech skills. He continues OT every week or bi-monthly depending on the time of year. He attends kindergarten for two full days each week. He spends his free time researching his greatest interests - Skylanders and dinosaurs. He uses his own laptop and printer to make books, posters, puppets and checklists of his interests. He loves to spend as much time as possible in his pajamas. His favorite foods are ice cream, french fries, peanut butter and various fruits. He reads above grade level. His favorite books (which we are reading together) are the Magic Tree House series.
This most certainly does not cover it all. Deane is a complex, fascinating, very smart, sweet, and awesome boy. I can’t wait to see our shared journey of facing autism continue to morph into how he independently overcomes challenges to reveal his strengths to the world.
So much has happened in four years for which we will be forever grateful.
