I’ve had this post in mind for almost 6 months now, since I first learned the phrase “Refrigerator Mothers” at one of the many autism related speaking engagements/conferences/workshops I’ve been to in the past few years. I’ve finally been inspired to sit down and write it because of the Twitter trend #YouMightBeAnAutismParentIf. If you’re not familiar with Twitter, if you want a particular topic to be found, you can use a hashtag to qualify it. Then, people can search that hash tag and see what people are saying about it.
##YouMightBeAnAutismParentIf has been running for two solid weeks now. I’ve found myself spending quite a bit of time on it because I find comfort, support and a little bit of awe in what I’ve read. The overall themes are that these parents, no matter what, pour their blood, sweat and tears into their children. They fight, claw, crawl, shout, yell, haggle, negotiate, and write to make the world a better place for their child. To get the support their child needs to live a quality life. They read, educate themselves, become advocates not in the name of some higher good but because they have to. They’re the only ones who will. They’re the ones living with autism day in and day out. They do it at the expense of themselves. And they do it out of love and necessity.
Overall, the single thing that is most apparent is that these parents love their children. Fiercely, determinedly, unconditionally and forever.
Hmmmm….I keep saying “they”. I should probably say “we”.
It’s hard. It’s hard as hell to constantly be proactive with your kiddo. To be understanding when you’re really just a little tired and worn out. It’s hard to have to fight with insurance companies, our government, our schools, our jobs to do what we need to do for our kids. It’s hard to have to reconsider your entire life, refocus it, accept it for what it is and eventually embrace it.
But it used to be a helluva lot harder.
According to Wikipedia,
The term refrigerator mother was coined around 1950 as a label for mothers of children diagnosed with autism or schizophrenia. These mothers were often blamed for their children’s atypical behavior, which included rigid rituals, speech difficulty, and self-isolation.
The “refrigerator mother” label was based on the assumption that autistic behaviors stem from the emotional frigidity of the children’s mothers. As a result, mothers of some children on the autistic spectrum suffered from blame, guilt, and self-doubt from the 1950s throughout the 1970s and beyond: when the prevailing medical belief that autism resulted from inadequate parenting was widely assumed to be correct. Some present-day proponents of the psychogenic theory of autism continue to maintain that the condition is a result of poor parenting. However, others merely point out that some conditions are perhaps psychological in origin rather than physiological, and that this is not necessarily a reflection on parenting skills.
In 2003, Kartemquin Films released Refrigerator Mothers, a documentary that takes a look at American mothers of the 1950s and 1960s and the blame leveled by the medical establishment for the mothers causing their children’s autism. The documentary gives voice to women who no longer accept the blame that was once common for mothers of autistic children. Making its television premiere on PBS’s P.O.V. series, Refrigerator Mothers was featured in a January 2010 issue of Psychology Today that focused on the racial and class stereotyping of autism.
Take a look at the documentary. Go ahead, click the link and settle in. It’s a little long but well worth the time. And, don’t forget to grab a box of tissues. I’ll be here waiting when you’re done.
According to Bettelheim, autism is caused by the mother’s emotional rigidity. You got that, right? So, back in the 1950s and 1960s, if a child had autism, it was the mother’s fault. And the best solution was to institutionalize said child to get them away from their mother and put them in an environment that could work on undoing all the bad the mother had done.
If you saw the movie, Temple Grandin, you probably remember the scene in the beginning of the movie where Dr. Grandin’s mother is told just that. And she refused. But, she was one of the few. Imagine that you’re told your child has no hope of communicating, no hope of leading a “normal” life….and it’s your fault. And the best thing you can do for them is to put them in an institution. We’re so programmed to believe everything a doctor tells us, it’s no wonder these parents followed that advice.
We can look back now and think, “No, I’d never do that.” or “I can’t believe they didn’t fight, that they just accepted it.” But, hindsight is 20/20. I don’t think most of us would question that authority. Especially as women in the 50s and 60s. We’d do what they said we should do and then live with the guilt and questions for the remainder of our lives.
Things are better now. Certainly not perfect, but better. Yes, there are miles to go in fighting the school systems for IEP services, Fair And Appropriate Education (FAPE) and inclusive education. Miles to go in dealing with insurance companies and government policies. Miles to go to combat bullying and lack of acceptance. But I’d much prefer that over being told I was a Refrigerator Mother.
I think @jodigomes says it best in her Tweet:
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