Kaitlyn O’Gorman
ENGL 384
Dr. Foss
30 April 2019
“The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world” (Jim Sinclair, Our Voices)? The role parents take on when they choose to bring a child into the world is to love unconditionally, protect, and support that child no matter what, including an autism diagnosis. While there are many parents that do accept and embrace their child’s diagnosis; many other parents treat their child’s autism diagnosis the same way one might treat a stage four cancer diagnosis. However, an autism diagnosis does not equal the end of a child’s life and autism is not masking a child’s true personality, this is their personality. In order to make an educated analysis of the parents of autistic children it is important to read not only from the parental side but also from the first-hand experiences of an autistic self-advocate; Julia Miele Rodas a disability studies scholar and Melanie Yergeau an autistic adult; give this insight. Both Rodas and Yergeau share situations in which parents of autistic children have failed to be what their child needed, instead of being their child’s unwavering support system, out of fear and shame parents forget that their autistic child is a person and begin publicly sharing their child’s personal struggles as a way to make themselves feel better.
While the cause of autism is still greatly unknown there are several hundred theories, the ones that stick the most are the theories that place the child’s parent at fault. Parent’s are often given the blame for their child’s diagnosis which not only results in undue shame but it also plays a big part in how a parent will react to and treat an autism diagnosis. Rodas writes in the “Introduction” of Autistic Disturbances, about one particular parental response that has unfortunately received a lot of attention. Celebrity Jenny McCarthy wrote an autism parent-memoir titled Louder Than Words, in which she describes her heart shattering upon learning her child’s diagnosis and states how “everything I had thought was cute was a sign of autism”, (McCarthy, 66). McCarthy could have accomplished so many things with her influential power but she chose to write her book, Louder Than Words, in such a negative tone that it only adds on to the problem. The problem is not that some children are born with autism it is the response mothers and fathers have towards their child’s diagnosis.
McCarthy used her book to identify autism as a “plate of shit” (McCarthy, 65), when she could have created much needed awareness for other parents like her. She could have maintained her adoration of all the cute things her son did and told the world how much of a blessing it is to watch her son grow and learn. Instead she made a mockery of autism and created a fear mongering memoir for everyone to read. Rodas mentions that “at the same time the doctor locates hs patient… the mother loses her child” (Rodas, 16), however this does not have to be the case. It is up to the parent to choose whether or not they will condemn themselves and outcast their child or embrace the diagnosis and continue to love all the cute things their child does.
Now to hear from Yergeau, an autistic self-advocate as she recounts the “shitty narratives”(Yergeau, 3) her mother would recite in her introduction of Involution. Yergeau was born autistic but did not receive her diagnosis until she reached adulthood. Although her parents were never aware that their child was growing up with autism, Yergeau feels as though they must have known that “there was something about her” (Yergeau, 1). Yergeau notes that what is typically authored by non-autistic people tends to cast a less than hopeful light on those with autism, “media accounts of autistic people communicate the sensationalism of savant-beings who are at once so extraordinary yet so epistemically distant and critically impaired” (Yergeau, 3). The previous statement only accounts for what the media says about autism however, this can also pertain to what parents of autistic children say as well. In Chloe Silverman’s Understanding Autism, one parent mentions “if you hang around [autism] parents enough, all we talk about is poop” (Silverman). Yergeau recounts that her mother’s favorite stories to tell about her growing up also had to do with young Yergeau smearing feces everywhere. Another thing to consider when thinking about shared narratives such as “poop talk” the parent is really only talking about themselves, “parental poop talk is perhaps the most effectively loaded of all poop talk… it relates smearing, eating, and rectal digging in graphically humanizing terms… The humanization in autism poop talk, of course, is rarely about the human whose poop has been thrust into the spotlight” (Yergeau, 3). While it may be true that by sharing these narratives with other parents of autistic children it gives parents a comforting sense of normality within the community, these narratives are not given with the proper consideration as to how this exposed information might affect the child.
There is so much mystery and countering arguments surrounding autism that it is understandable to be taken aback upon learning the child’s diagnosis. After this brief moment of shock it is now the parent’s duty to obtain as much knowledge they can so that they can overcome, adapt, and provide the best life for their child. There are several ways parents can go about this research; first, they should always ask their child’s doctor for any and all information or advice they can provide. Secondly, there is a growing community of parents who also have children with autism that are more than happy to share what they have learned with other members of the community. When all else fails the internet is a wealth of knowledge filled with research articles as well as self-advocating articles written by autistic adults. However, it is important to remember that while we know more about autism than we did ten years ago, it is still largely a mystery and not all the information put out on the internet is entirely true. Most importantly parents can not ignore the diagnosis out of fear or embarrassment. By receiving their child’s diagnosis parents are being given an answer and the opportunity to truly get to know their child. The parents are now able to learn how to properly and productively work with their child to increase their overall success in life.
The parental role no matter what the situation or diagnosis, is to protect their child. This means maintaining a level of strength and privacy for the child so that the he or she does not have to grow up battling stigmatization from their own mother and father. This means supporting and encouraging the child to continue working for improvements. Rather than feeling ashamed or sorry for themselves parents of autistic children should be working together to reach new milestones. These parents should be creating blogs and writing memoirs to inform the general public about the real truths of autism. The media and medical offices have and will continue publishing the negative stories about autism; parents have the opportunity to share the joy their child creates and accomplishments they make.
I Pledge…. Kaitlyn O’Gorman
Word count: 1,225
Work Cited
- McCarthy, Jenny. Louder Than Words , 2007.
- Rodas, Julia Miele. “Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe.” Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe, University of Michigan Press, 2018, pp. 1–30.
- Sinclair, Jim. “DON’T MOURN FOR US.” Don’t Mourn For Us, 2002, www.autreat.com/dont_mourn.html.
- Yergeau, Natalie. “Introduction: Involution.” Authoring Autism: On Rhetoric and Neurological Queerness. Durham: Duke University Press, 2017. Accessed 30 April 2019
