I have just spent a fascinating afternoon with Willow Marsden via her Video Blogs. She explains on one video blog that she knows she is pronouncing Asperger Syndrome wrong but she does not like the hard G so she is going to say it the way she likes--with a soft G. It is a tiny little detail and just for the record, I too think the soft G sounds better. Like so many little details that Willow explores on her blog posts, it seems significant in her life story. Willow has an unusual ability to articulate aspects of growing up as a girl with a form of autism and this would have been reason enough to enjoy her video blog. But what was truly compelling was that after watching a year's worth of Willow's life I came to believe that she has not just decided to pronounce Asperger Syndrome as she chooses--she has decided deal with Asperger Syndrome on her own terms.
I have included one Willow video blog post, just as a sampling but it was hard to choose which to select. On the video posted below, I loved how she explains that it has been helpful to her that her parents stay calm as she and her brother, who also has a form of autism, have melt downs, anxiety attacks, and socially inappropriate moments.This is quite a tribute to her parents. We often expect that an intelligent person with autism (even a young child) should be able to mask all the neurological difficulties of autism and behave in a socially acceptable way at all times. It is as though we believe that we manage this though sheer will power when we actually can do it because we are neurologically compelled to act as we do in most situations. Willow makes it clear that being intelligent and articulate does not provide her with everything she would need to consistently act normal "whatever normal means" (and I am quoting her here). Even if some children, especially girls, can mask many of the difficulties inherent in having autism, one has to question if this would be ideal. How confusing to have many serious sensory and social difficulties and not be able to get any help with these because no one knows. Should we teach children to pretend to be like everyone else? This might be like a dentist teaching a patient not to grimace--how then does the dentist know what to do to reduce the pain? Unfortunately, we do teach this in a thousand different ways and particularly to girls. Willow explains that it was hard for her to get anyone to believe or understand what she was experiencing and this may be a common girl version of the story of having autism. Willow knew that others viewed her reactions as bad behavior or mental illness. Eventually, the effort became too hard as Willow conveys in an amazing series of seemingly unstudied little video chats. The Willow story does not end here, though it gives me pause here.
Listening to Willow pushes me into thinking and rethinking my own role as a therapist. What should I be saying to the many parents I see each week? A great deal of what we talk about seems to be premised on the idea that these children should behave in a more "normal" manner. Parents are given so many confusing messages, in fact, that I don't know how they can sort it all out. I tell them that their child is neurologically different but infer that I can help the child become more "typical". I really believe that neurologically unique children learn skills as all children do--skills that that can lead to opportunities for life-long joy, connection, learning, adventure, love, and hope--but they don't really become neurologically normal (whatever that means). A second confusing message is the issue of how "severe" or "mild" the autism is with any given child. Willow brings this second point home by appearing to have about as mild a form of autism as one could have but then conveying how her autism, Asperger Syndrome with a soft G, brought her life to a screeching halt in early adolecence. To say that any child has a mild fom of autism may be misleading.
It is confusing to give the message that one means to give to parents. For example, I saw a little girl not too long ago who had received a diagnosis of "severe autism" and her parents brought her to me for a second opinion and for ideas on how they could help her. "Why", I thought, "would anyone characterize this little girl as having severe autism?" The little girl I saw was playing and chatting and using many nonverbal communication behaviors. She was able to engage in pretend play activities, even with me, someone she barely knew. So, I said that in my opinion, she had a "mild" case of autism--if she had autism at all and that has yet to be determined. But, I did see some red flags for neurological differences. After listening to Willow this afternoon, I was re-thinking what I said to this child's parents. The road ahead could be severely challenging for this little girl not because she has severe autism but because she has a small neurological difference and she might struggle with sensory and social difficulties. Did I give too rosy a prognosis? While I want to dispute any characterization of her as having a severe disorder, I don't want to convey that her parents can just ride this thing out and hope for the best because it is "mild". On the other hand, the parents have every reason to hope and strive for a wonderful future for this little girl. How does one communicate all that? Somehow, Willow did communicate all that in her video blogs, though.
So, what is this thing that we call Autism Spectrum Disorder anyway? Is it still wider and deeper than we historically imagined? Does it, like Willow believes, include as many girls as boys only we just fail to diagnose the girls? Or, as I may have done, perhaps we understate the significance of neurological differences in girls but actually many girls find a way to cope and even thrive because they have a few advantages that boys do not. What is the best course of treatment and support that we can give any child if we see that child has a unique neurological make-up? Is it appropriate to focus primarily on teaching the child how to behave in a "normal" manner despite very real differences? Should we focus more on teaching parents and child to accept and enjoy being a child with a neurological difference.
Willow offered some insight into all of these questions. She set out, apparently, to explore these issues for herself but in consultation with anyone who would join her in the discussion. I ended up believing that the best outcome for Willow,( not unlike the rest of us), would be to enjoy being herself with all her amazing talents and all her challenging differences. There are many of Willow's blog posts that give me hope that Willow might pull this off.
Note: the last (previous) link I included is Willow answering the question about whether she would choose to be "cured". It is a great blog post.