What we know now, that we wish we knew then: Reflections from two parents at both ends of the spectrum

(Maureen)
In preparing, I decided to test some of my reflections with several parents who have been my friends since we met at the Chapel Hill TEACCH Mother’s Group 15 years ago. We have observed and supported each other raising very different children, representing distinctly different places along the autism spectrum. From my son, Justin, who in addition to his charm and wonderful personality, is at one end of the spectrum—severe autism, profound mental retardation, a seizure disorder, significant s/b and aggressive behavior and is non-verbal—to Ann’s son, Eric, also charming and a wonderful personality, at the opposite end of the spectrum with normal intelligence, academic strength, full inclusion at school, yet significant autistic behavior including stimming, socially withdrawn, obsessive interests, and a picky eater.

I asked the question, what advice would the mother you are today, of a young adult with autism, give the mother you were when your kids were small? Despite our very different children, our advice was in complete agreement.

It was then that I asked Ann to this presentation with me, to emphasize while functioning levels certainly influence what are kids need, and while some parenting issues are different (I don’t have to deal with a child like Eric who is aware of his diagnosis and Ann doesn't have to deal with Justin’s self-care issues) our parenting experience is very similar. This supports our belief that there is more that unites than divides us as parents.

(Ann)
My name is Ann and I live in Durham, North Carolina with my husband and my three children. I have a 20-year old son with autism, Eric. He was diagnosed with autism when he was almost three. At that time he was very withdrawn and didn't play with other children, had delays in speech and motor skills, was very echolalic, and had self-stimulatory behaviors. His public school career was spent in a self-contained class for autism for two years and the remaining years in full inclusion settings. He is now in his second year of college and enjoys living in the dorm, coming home for frequent visits. He is majoring in Zoology and looks forward to working with animals following graduation.

We've come up with 5 lessons we've learned that we feel have been the most important (so far). We’re learning about parenting adults with autism from the parents who are ahead of us!