Experiences with Autism and Following a Schedule

Following a schedule as a treatment is a new one on me. Yes, most children with autism like sameness and routine and for many following a schedule is not a treatment but a necessity, like breathing, because the horrific meltdowns that can occur when there is change can make life unbearable. For some children it can be as silly as taking a different route home in your car. They will insist on the same route, every time. There is a story of a child who would only eat chocolate pudding and it had to be cooked a certain way, and she would watch her mother and if she deviated in even the tiniest way, she would not eat it. So, I have never heard it referred to as a treatment, in fact in my mind it would be the opposite of treatment. A treatment to me affects or changes the behaviors that are part and parcel of autism but are so different as to be unacceptable to the general public or make life unbearable for other family members and hence need to be addressed. Insisting on routine, sameness, and following a schedule to me are "symptoms" of autism, not a treatment. And when they have a huge impact on family, parents, and total strangers it is something that should be tackled if possible as part of a behavioral program. My approach was just the opposite of routine. Once we had made some huge headway with the GFCF diet and with ABA, all was fair in love and war, and autism. I took the approach that the only thing she could now expect was the unexpected. I had decided already that the world was never going to come into her world, so I had to do everything in my power to bring her into our world. So, I took her skiing, skating, on airplanes, to zoos, museums, birthday parties, etc. If I could think of a scenario or situation where she might need to learn to reign in her own feelings, find ways to deal with over-stimulation or feeling overwhelmed then that is what we did. Even if it failed and entailed a 3 hour drive home, I took that chance. We did social stories prior to try to prepare her for what might happen, and the series of events that typically take place at such and such a place. We talked about it and what her fears might be. And this approach has been a huge success. She is now adventurous and daring and actually relishes in the surprise or unexpected. But this was training, just like everything else we did, it was well thought out, planned, and alternative planned.
But I will also admit that you have to attain a certain level of functionality before you can take on this approach. They have to have some experience in calming themselves, reigning in their own feelings and emotions when overwhelmed, demonstrate that they have some personal self-control when the unexpected happens. The school tells me that she is sometimes thrown when a fire alarm goes off or once they had to initiate a school lockdown, which might be scary for any kiddo to deal with, but she quickly brought it into perspective, calmed herself and went on her way with the others. I think this was a learned or taught ability that carries through or is generalized to other things in her life now. For us....and those two words are critical here...for us, this was a success beyond imagination. It is why she can now play in a symphony, try out for community plays, be a cheerleader, and compete in table tennis. She still can get overwhelmed, but she knows how to pull herself back. And if things have been especially tough on any given day, she heads for her grandparents house next door, where they offer calm, routine, sameness, a place where she can rock, put on headphones and shed the worries of the day. It is her refuge and why it works for us to offer these two polar opposite worlds to her with great success. So my advice is to start slow, work on self-control at home first, then school, then on to other things. You can't just take them to the symphony on a whim and pray it all works out. Nothing in autism is easy, but when it works the rewards are priceless. It could be the new Visa advertisement....Wasted symphony tickets $200.00, 6 hour round-trip ski adventure that never materialized $150.00, birthday party early exit $20.00, watching you child with autism ski down a mountain.....Priceless!