This is the third in a series of reports on local FEAT-of-Oregon families' experiences with autism. This report is not an endorsement of specific treatments: first, every child is different, and second, FEAT judges treatments by data-based scientific studies.
Seven years ago, I volunteered for an ACAP fund raiser at the Galleria downtown. I think I brought my older son to help me, he is perpetually my support. One day two women came to the table. They started to talk to me about autism, and one said she was a special ed teacher, and she knew a lot about autism. The conversation went on for a little while, and then she asked me why I didn't cure my kid, like Barry Neil Kaufmann? She was very angry with me, and she scared me.
Ned (not his real name) is eleven now. Ned will never be indistinguishable from his peers. But this summer, for the first time, Ned asked "Where is Matthew?" completely spontaneously. He has also told myself, my husband, and one of his tutors, things that have happened in the past. He brings these things up by himself. Ned must be closely questioned to obtain more complete information, but we never expected even this much from him.
Ned can read. He learned to read with Kathi Calouri and with me. We saw Kathi twice a week for years, and during the time he was learning to read, I also worked with him every night. I am not a teacher, I have no training, and no one pays me. I am motivated because this is my child. But, it seems to me that this disabled child and his future are meaningless to special-ed administration. It seems that only their bureaucracy and bottom line are relevant. So Ned is homeschooled now. I do not foresee myself ever sending Ned back to public school. We had some safety issues, but our problems are more far-reaching than that.
Ned has made much progress, but he did not see Kathi Calouri until he was nearly six and a half. Were it not for Kathi's determination, I do not believe Ned would be verbal today. One day in the first year of therapy, Eric was working with Ned, and had been working to get him to say YES, for months. Ned had a three syllable approximation that did end with an S sound. I listened to Eric, "Ned, say YES" for about 20 minutes, then I listened to "Ned say E ES" for another 20 minutes. I stood up, and took a step. I thought this sounded impossible. Then I heard, "YES", as clear as a bell from Ned!!!
I want to make it clear that my son makes progress long after the magical age of five. And he continues to make progress even today. He still needs intensive one to one help, and if he is to learn, he always will. This is just part of autism. It is shortsighted and in the long run far more expensive not to help Ned. And I do not need a cure to be pleased with Ned’s progress. Yes, I am plagued with the "what if" of inadequate funding, and earlier help, but I try to push these issues away from me, and give my resources to Ned, now. Also, I believe it is possible that some children are so severely affected by autism, that they may not be able to make progress until after that magical "cut off" age. So it is best not to give up, or take discouraging words from anyone.
Comments on Ned's Story from our Board of Advisors:
Sandra L. Harris, Ph.D.: Ned's mother is right--it is never too late to learn. Although very young children make the most dramatic progress, older children who are very autistically involved make progress too. We owe them a quality education that will maximize their ability to be part of the community.
Tristram Smith, Ph.D.: Ned's story shows that one-to-one, behavior analytic instruction may benefit individuals with autism of any age (though classroom instruction is also important because it helps children learn to interact with and work alongside peers). Ned's burgeoning communication skills are exciting!