Just two weeks ago I was publicly agonizing over the questions of when and how to tell my six-year-old son that he has autism. The great outcome of my public agonizing (the private agonizing had been going on for many a month), was the outpouring of advice and reassurance from my blog readers; not only in the comments section, some contacted me privately too. The upshot was that I decided to tell my son sooner rather than later; particularly that the next time the conversation about people’s differences naturally arose, I would take the opportunity to expand the discussion to talk about his own “special difference.”
That day was today.
I’m splitting this story into two parts. This first part is about “the book that couldn’t be found”. The second part will be about how the eventual “revelation of autism” actually went.
I was determined to have visual supports for the conversation; my son learns well from, and responds well to, visuals, particularly in book form. And so began the endless and fruitless search for the appropriate book. Despite numerous suggestions from well-meaning people, and hours spent trawling through long lists of books on charity and blog sites, no book was appropriate. They all fell short.
The vast majority of the books were aimed at those in the life of the autistic person, rather than the actual autistic person. Book after book aimed at siblings and classmates, where the autistic person is the “other”. My son is very literal and would have found this approach somewhat confusing, and I didn’t want a book told so strongly from that “otherness” point of view.
Most of the books aimed at the actual autistic individual, were specifically about Aspergers, and used that term too. My son does not have Aspergers, that would have added confusion, not clarity.
Just to make things worse, almost every book I was able to get more information on, spent time explaining that autistic people like to be left alone or don’t have many friends. My son is a highly sociable boy; yes he struggles with it, but he sure does not like to be alone, and neither do I want him to see himself as someone destined for aloneness. The very few books that came close to being appropriate in content, were all aimed at a much higher age range.
Frankly some of the books were plain ridiculous or offensive, with aspects or wording that made me cringe. Like the one entitled “Little Rainman.” And yes, that’s really its title.
After many hours trying to track down the right book, I decided to do a social story myself. I evolved the idea into doing a personalised home-made book, with my own art-work. Then a more professional one, using free-to-use images from the net to support the words. Eventually I went with using photos of himself, his own experiences, and the people in his life, put together in a properly bound photo book that I made and ordered online, using a standard photo ordering website (“Snapfish” is my regular). I was very pleased with the end product, and the two people I showed it to in advance were so impressed that they said I should mass-produce it, or something very much like it. I’m still thinking over whether I can or should, but for now I had made something that suited my purposes.
The overall message of the book is that everyone has differences, and his difference is called autism. That autism comes with good aspects, and not so good aspects, but that he’ll get lots of help to learn those things that are harder for him to do. I supported the words with examples and images that mean the most to him. I wanted the overall tone to be up-beat but also realistic, and personalised to his autism and the challenges (and advantages) that autism has brought into his specific life.
The book arrived in the mail today.
I put the it away in a drawer in the house where my son wouldn’t stumble across it, and felt far more settled; knowing I was now (more) ready for the day whenever it may come. I suggested to my husband that I actively might choose to raise the issue next Wednesday if our son hadn’t raised it before then. I didn’t want to try sooner than that, because my son has a few big things planned over the next three days (including his first movie-experience!). But I also wanted to deal with the topic before he returned to school in February, so he had time to adjust and absorb the new information (without raising awkward discussion issues for his fellow classmates, many who also have autism and might don’t know it yet; let their parents tell them when they want to.)
I was down in the lounge going over “the right time” in my mind; what time of day would be best, even what room would be best for the conversation… and then the moment had arrived.
(Part Two to come!)