Makayla Harrington
Dr. Foss
English 384
April 30th, 2019
1152 Words
Autistic Narratives Should Be About Autistic People
When speaking about communities that are too often misunderstood, the specific narratives that readily available to outsiders are crucial to the community, and directly impact how society views them. Stories about autism are often not centered around the autistic person themselves, but the caretaker, or some other person in their life. Historically speaking, parents of autistic children have not, by any means, had it easy. There are some reasons why parents are often centered in autistic discourse and stories. There was once a very popular and now outdated, but still relevant belief that parents are the root cause of their child’s autism. Additionally, there’s the aspect that parenting an autistic child, like most other disabled children, is sometimes harder and requires more/different care than a non-autistic child. But those two things still don’t justify the rising amount of parents victimizing themselves, because when they do that, they’re failing to make opportunities to speak about their autistic child about the child themselves. However, I believe that while parenting an autistic child is hard, and a roller coaster, and worthwhile, and whatever other adjectives one can list, it’s ultimately not about the parent, but the child. And the constant shifting of narratives from being about the parent instead of the autistic child themselves ultimately hurts autistic people, and is unjustified.
Stuart Murray’s book, “Autism,” is an excellent source on multiple topics involving autism, but in chapter nine of part two, he talks about the history of psychoanalysis used for research and treatment. In the nineteen sixties, one of the most common thought, “causes” for autism was having distant parents. The most influential doctors who advocated for this now disproven theory was Bruno Bettelheim. To quote Murray on Bettelheim, “Bettelheim’s attitude towards parents was savage. He claimed that they prevented ego development in their children because of their own inadequacies, and his continual use of language that stressed parental ‘coldness’ or ‘rigidity’ produced despair among those who had children with autism” (Murray, 57). This is now an outdated and disproven approach, and as a society we have once again gone back to understanding that we don’t know what causes autism. However, it was so widely spread in the disability and psychiatric communities back in the day, that the effects of this line of thinking are still present in modern times.
While the theory that distant parents are what cause autism isn’t nearly as common now, it’s one of the first huge movements in the autism community that take the control, and the story, away from the child. We know that this dangerous line of thought contributed to mindsets that are still present today, but it might have also contributed to the start of the community justifying and being complacent in the focus being shifted from autistic children to their parents. In the present day, we still really don’t have any evidence about the cause of autism. However, hopefully whatever future research and conclusions are made in the future shifts the focus back onto the autistic person, instead of their caretaker, thus producing more accurate results.
In households belonging to autistic individuals, especially “low-functioning” or younger autistic people, the parents are the decision makers. They decide about what therapies, and more often than not, what strategies and approaches are taken to better teach and integrate their child into society. It’s a complicated issue, because shouldn’t the parents get a say in what happens to their child? The answer is yes, they should, and there should be a place for them to talk about shared experiences with other parents of disabled children, and tell stories to raise awareness. The issue comes in when the majority of speaking opportunities- and almost every day is a speaking opportunity, only on a much smaller scale- are dedicated to parental struggle caused by having an autistic child. This is particularly harmful when the parent’s viewpoints of how autism has affected their family are consistently and constantly negative, and/or drastically different than the autistic child’s perspective of how living with autism has affected them.
To quote Murray again, “Far too often, the heat and light created by autism controversies are disassociated from the realities of those who have the condition, and a lot of energy is wasted that could more profitably be used in thinking about actual autistic lives” (Murray, 76). But how does that happen? The reason why the discourse strays away from how to improve the lives of people with autism, and understand it better, and onto things that many autistic people don’t care to put research funds towards, like finding a cure, is because autistic people aren’t the ones speaking or making the decisions. Instead, it’s the caretakers, or someone who knows someone with autism. Even sometimes people who aren’t really close with anyone who has autism. This is dangerous because due to the lack of narratives from those with autism, the stories that the general public hear are often all negative. The stories become about how it’s hard to dress their child, or go to public gatherings, or do various things, and not about how often the child is happy, or their interests, or what it’s like to be in their shoes. This makes it harder, and less likely that people who have not known anyone with autism to view autistic people as people, becauses instead of being represented as a complex person, they’re seen as one-sided, static children who cause problems, which is a dangerous way for society to see them,
Then, it gets to the question of how and why are parents inclined to tell their own story instead of their child’s. Parenting a disabled child can come with a lot of frustration, just like any other child. It’s natural to want to talk about how autism affects them personally, instead of their child. Another important thing to consider is the aspect of “signing up for” disabled parenting. Excluding adoption, the majority of autistic people’s parents didn’t expect to have a disabled child, and so the unexpected amount of care that they need can leave parents feeling exhausted and burnt out. But, when one has a child, they’re accepting the chance of having a kid who isn’t exactly how they expected.
In conclusion, the parents of autistic children have a huge role in the community, and it’s crucial that the narratives that they tell are about their children, painting them in a complex light. Through being more conscious about how they’re advocating for and talking about their child, they can entirely change how society views the average story of an autistic child’s life. While parents of autistic children have been harmfully, and wrongfully been criticised in the past, and potentially have more difficult times being a parent, there’s still no reason good enough to justify why the majority of autism narratives being spread should be centered around the parent, instead of the autistic person themself.
Works Cited
Murray, Stuart. “Autism.” Academia.edu, Routledge, 2012, www.academia.edu/1160813/Autism.
I pledge, Makayla Harrington
