I wrote some thoughts about the parents of kids with autism several years ago (The Real Mama Grizzlies), and now hope to add just a little to that particular discussion.
Some time back, I attended a conference focused on recent research in the field of autism. With our awakening to the very real challenges of kids on the spectrum becoming adults, one of the more relevant and interesting topics that day was quality of life for adults with more severe autism, specifically those who have little or no spoken language and require ongoing care throughout their lives. The young person (doctoral student maybe) giving the presentation struck a nerve with me when describing an unexpected observation coming from their research. Essentially what they found was that quality of life was generally perceived to be better if the person on the ASD spectrum had a mother who was actively involved in their life. I am taking great liberties here in my paraphrasing of what was said, and since this was not originally part of the research design, but rather an aside that became more and more obvious to the researchers over time as they collected their data, I am not sure if it even made it to the written summary of the study.
A dad in the audience challenged the statement that it was the mother who needed to be involved, but this was explained as a simple reflection of the reality that almost without exception it was a mother who was responding to what was being asked in the questionnaire. It wasn't that dads were unimportant or uninvolved; it was just that the researchers were dealing with mothers almost exclusively in this particular study. Meanwhile, I experienced a chill throughout my entire body as I looked around and realized that I might well be the only one in the audience old enough to have actually experienced the stigma of the "refrigerator mother." While not a mother of an autistic child myself, as a young teacher I certainly DID hear the theories and know that mothers around the world were living with the knowledge that many, many professionals did, in fact, hold them responsible for the challenging behaviors their children were presenting. Other than that one father and myself, no on else seemed the least bit troubled. And the discussion continued.
I gave some serious thought afterward to pulling what I call the "Grandma card" --- I could contact someone at the center and suggest they educate their young researchers about the early history of autism. I certainly should save them all from further embarrassment going forward. Grandma's wisdom, you know. But a little time went by and in the end, I did nothing.
Well, not exactly nothing. I did a whole lot of thinking and reflecting, and gradually came to the realization that they might be onto something. My second career, post-retirement from teaching, has involved working closely with many families who have non-speaking adult children who require care and support 24/7. They come to see me because their families recognize that these individuals, while unable to speak, may actually have a lot to say - and for most of them, typing is highly effective.
Day after day, I interact with mothers who believe in their grown children. These moms continue to be highly involved in their kids' lives. Many have made the choice to put their own lives on hold and devote whatever time, energy and resources might be available to them to providing the support their child needs to have the highest possible quality of life. They actively advocate for their child, they continue to seek out appropriate programming and community involvement. They schedule therapies and medical visits. They modify diets and menus, provide nutritional supplements, buy organic and cook from scratch, do their own research into what might be most beneficial to good health. They travel to conferences and stay up late at night to check for the latest Internet updates on what is new in the field. Some even uproot their whole family and move in order to access better support services.
Yes, of course, dads are involved also. But I see mostly the moms, and the ones I see are amazing. To carry this one step further, you might want to search for such terms as "awesomism" or "awetizm" to get a relatively new and exciting view of autism and all its special gifts. These parents REALLY believe in their kids!
I don't want any of us to forget the damage done by the image of the refrigerator mother, but I think we can all agree it is better to see the gifts that mothers, fathers and their children bring to our world. Let's focus on that, and let's agree that a child whose parent believes in them and never ceases to do all that they can to provide love and support is almost certain to have a higher quality of life as an adult than one who is unappreciated or underestimated.
