autism

Don’t Mourn for Them, Learn for Them

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Don’t Mourn for Us // Jim Sinclair

Summary:

Don’t Mourn for Us is an essay written by Jim Sinclair about the complexities of birthing and raising an autistic child. The author explores the processing period for parents who have autistic children; they break down the misconceptions and reframe thinking from mourning, to learning. Autism is described as foreign-ing. By this, I mean that autism is not a dismissible characteristic, but rather a way of being outside of our preconceived notion of “normal”. Sinclair gives tips as to how to refashion perspectives in a way that honors autism.

Quotes/Analysis: 

“I urge parents to make radical changes in their perceptions of what autism means” (Sinclair pg. 2).

I believe this quote gets to the heart of the essay. This is what the author is requesting. 

“Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, very aspect of existence. It is not possible to separate the autism from the person, and if it were possible, the person you’d have left would not be the same person you started with” (Sinclair pg. 2). 

I believe this quote is why the author feels so strongly about training parents of autistic children. This quote explains the true meaning of autism, which is often misunderstood and then poorly approached. 

“Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you” (Sinclair pg. 4).

This quote is part of the authors recommendations for moving forward. 

Reflection: 

There are aspects of the language used that made me uncomfortable, but maybe that’t the reality of having an autistic child? I was surprised the way the author closed with a scenario of an alien child, referring to them as “it”. But overall I think this was a very insightful read. I think it would/will take so much unlearning to think in the way the author is recommending. The framework they are coming from is so foreign for so many people, but it is worth sharing. 

To Grieving Parents: “Don’t Mourn for Us”

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“Don’t Mourn for Us” by Jim Sinclair

Sinclair begins their letter to parents by calling out the “trauma” that parents feel upon receiving a diagnosis that their child is autistic. They define autism as a way of being, and wishing for your child to not be autistic is akin to wishing for a different child. Then they talk about parents learning a new way to communicate with their children that is often outside of their expectations. Sinclair then talks about the grieving process that parents go through upon diagnosis, relating the grieving not to the loss of their child to autism, but the loss of their dreams of a neurotypical child. They tell parents instead of being sad at their child’s condition, they should be sad about the world that fights against their existence. Sinclair ends the letter with telling parents to look at their children and assist them in the world around them, help them where they can and fight for better living conditions for people with autism.

Quotes:

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5)

Analysis:

Sinclair is clearly responding to the immense amount of parents who exaggerate the grief over their child with autism, the ones who champion for cures or attend autism support groups because their “lives were ruined by autism”. It seems to me that they drafted this letter as a response to those parents, and to new parents, to let them know that while their grief is real, autism is not a death sentence nor an impenetrable wall. Here they are speaking specifically to parents of children with autism, with the hopes of giving them insight to the autistic experience of their exaggerated grief. Sinclair is speaking within the realm of someone with autism, someone who has worked within the autism community, and someone who likely has been the recipient of this exaggerated grief.

Thinking about this article, I think that they do a great job at calling out parents for their traumatizing behavior, saying that the “trauma” that parents experience for their kids is valid, but they have to be careful not to re-traumatize their own children with their grief. Part of why I am so adamant that they are speaking to exaggerating parents is the heavy emphasis that they put on the idea that the “normal” child never arrived. In the following quote, Sinclair discusses that the parents have a loss of a dream child that they could relate to and that would understand them fully.

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

Parents, with reasonable expectations of the birth of their child, should have a level of expecting their child to be different in some way. I know that in my family’s experience, my sister and her husband were fully of the mind that no matter what child resulted from the pregnancy, there would be happiness and joy at the life that they could provide for the child. We talked about the prospect for disability with my nephew, and are still watching as he grows to see what kind of child he will be. But regardless, he is their dream child because he is *theirs*.

That is to say that I do take issue with the following quote toward the end of the letter.

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5).

I take issue with this quote because Sinclair is equating children with autism to aliens who just “land in (your) life by accident”. While yes, some pregnancies can be accidents, my nephew included, it is very clear that you are having a child. The child who is born to you is not an accident, regardless of however they experience life. I know that Sinclair was trying to make the point that for a parent, the way that their child will learn and experience the world will be foreign to them, but to me alien provides connotations of “unknowable”. And saying that you don’t know who the child *is*? They’re your child, plain and simple. Sure we don’t know what they will become, but that is true of every child. On top of this, I do not agree with calling a child, autistic or not, with the marker of “it”. Color me from flashbacks of reading “A Child Called It”, but if you must, at the very least name the child with “they/them” pronouns.

Perhaps I just have strong feelings towards parenting and the raising of children, but I definitely struggle to empathize with parents who see their own child as “other” or “alien”. Do you have to adapt to a whole new learning style on behalf of your child? Yes, but a similar notion can be said of every child.

Away from my parenting rant, I do think that this letter would be helpful to parents with children who are autistic. I think it is a validation of their feelings of loss, but also a call to action to not project their grief onto their child. It certainly sends a powerful message that doesn’t use flowery language to distort its purpose.