parental grief and language

Sometimes people think I get caught up in little details and miss the big picture.

I say the little details make the big picture.

When it comes to Autism…so much gets lost in the little details that we brush aside, judge as not important to the big picture or trivial.  I get picky about language and about being positive about the person.

One of my biggest sticking points is this whole notion that parents should grieve when their child is diagnosed with Autism.  That it is normal to grieve the Autism.  That it is necessary.  That it is right.

It freaking isn’t!

I think nurturing those thoughts is dangerous to both Autistic people and to parents.  I get a lot of push back when I suggest that grieving Autism is not okay.  To me it is akin to grieving the color of your child’s hair, grieving a lack of athletic prowess, grieving any number of things that are just not okay to grieve.

Grieving an Autistic child is telling the world that this child is not what you wanted.  Grieving that you don’t have the normal child that you were expecting.  That is very different than feeling unsure how to parent effectively.  That is very different than being angry or scared that our society does not accommodate disabled people well.

I really loved Brenda Rothman’s piece, “Autism is Not a Parenting Fail.”  Instead of teaching parents to fear and dread the tragedy of Autism, teaching them that it is equivalent to mourning the death of a child with our language, we need to put on a new pair of glasses and look at Autism through a different lens.  My favorite part of Brenda’s article is this passage:

“You’ve done nothing wrong. You didn’t cause this. You haven’t failed your child. You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You’ll need more patience and time. Your child will have intense emotions and needs. But he’ll also have intense curiosity, drive, determination, desire, persistence and individuality. What you’ll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.”

This is the message that we need to be out there.  This is what is good for Autistic people.  This is what is good for parents of Autistic people.  If as parents we are grieving, what does that tell the world about our kids?  About Autistic adults?

We cannot afford to overlook the language that we use when we speak about Autism.  We cannot afford for the focus of Autism be about parental grief.   Our anger and our sadness and our grief need to be directed at the targets which are worthy of it.  Those targets should be the ways that Autistic people are disabled by their environments.  And we need to attack those targets with ferocity.  To disable the environments which keep Autistic people from thriving.

Disable to enable.  Maybe that looks like keeping strobe lights out of an environment–flashing lights cause my daughter to have seizures.  Maybe that looks like equipping kids with fidgets or bubble wrap in Evie’s case.  Maybe some people need noise dampening headphones or even better–turning down the volume in the environment.  Whatever.  Focus on the barriers to ability that we can knock down.  And that is pretty much all of them.

Can we please stop talking about how tragic Autism is for parents?  How tragic it is for people who are Autistic?  Honestly, it is insulting and offensive.  And if you cannot accept your child, unconditionally, without a grieving process for his neurology, hair color, or freckles, then I say you are unworthy of parenthood and unworthy of your freaking awesome kid.

Your kid is Autistic.  Get over it.  And stop disabling him/her further with your language and grief.

***Editing to ad this excellent essay suggested in the comments, “Don’t Mourn for Us” as it says it far better than I have here.  Thanks to “The Caffeinated Autistic” for suggesting it.  Her blog is wonderful and worth a read as well.***

24 thoughts on “parental grief and language

  1. I think it is completely healthy to grieve when you child is diagnosed with Autism. I think it’s perfectly healthy to grieve when your child is going to have a harder time of life. I think it’s asinine to claim that we should be denied our feelings of grief just because you seem to think that means we find the child less worthy. Grief over a disorder does not equal disappointment in a person,

    • Marco, I don’t see Autism as a disorder. I see it as a beautiful and unique neurology. As I said in my post, grieve the heck out of the fact that Autistic people face barriers. But do more than grieve about that, do something about it! I’m upset that my daughter’s life is made harder and more dangerous than it has to be–by her environment, not her neurology. If this is what you, too, grieve then we are probably on the same page. But if you are grieving the Autism itself, or wishing your kid wasn’t Autistic, I say that you are disappointed in your kid and I grieve that disappointment for both you and your kid.

    • When an autistic person hears that parents (even if it’s not THEIR parents) grieve over their child’s autism, you know what many of us hear? “You aren’t the child I wanted. You’re broken. You’re defective. I have to grieve because the kid I wanted doesn’t exist, and I got you; you’re second-best.” That may not be what the parents are thinking, but the very idea that a parent has to take time to mourn the loss of a nonexistent child so that they can accept the one that exists in their life is beyond baffling to me.

      I recommend reading “Don’t Mourn for Us” by Jim Sinclair. It addresses this subject very well.

    • I think there’s a difference between grieving for a child diagnosed with autism, and grieving for your expectations of a non-autistic child.

      It’s normal to grieve for the disappointment we feel when we had expectations and hopes that are not going to come to pass. Not always healthy, but probably normal. But I think that needs to be separated from feelings about who and what an actual child is–not the one you hoped for and thought you were getting–but the actual, real, whole child that you have.

      There’s nothing wrong about life being hard. Life IS hard. Life is hard in a hundred thousand different ways. If you’re not autistic, it’s something else. And frankly, I question the wisdom of people becoming parents who can’t tolerate the thought of a child having a harder time in life than some idealized, non-existent, normal child. Because literally anything could happen…and plenty of those things are a whole lot harder than being autistic.

      And grief over a disorder DOES equal disappointment in a person when the “disorder” is an inextricable part of the person. When *nothing* a child could ever do would make them non-autistic, then they know they can *never* be the child you really want.

      This isn’t “Fringe.” There’s no non-autistic version of an autistic person.

      • You are more forgiving than I am. I don’t see why anyone should have expectations or hopes about what a child will be–gender, neurology, coloring, whatever. For me, grief is reserved for loss of or the threat of losing someone you love. You can’t lose what you never had. Having a protracted grieving period over not getting the kid you wanted just makes me angry!! I’m so tired of reading that grief is a right of passage for parents of Autistic kids.

      • “I think there’s a difference between grieving for a child diagnosed with autism, and grieving for your expectations of a non-autistic child.”

        That is what I was trying to figure out how to say last night but couldn’t figure out how to say it. Thank you for taking care of it for me.

  2. My grief definitely stems from our environment and societies view of autism. I mean, you know it’s bad when your daughter isn’t offered water and at my sons school they can’t even change his diaper during the day. We have to fight to get their basic needs met. If that doesn’t take the wind out of your sails sometimes, I don’t know what will. There are times when I would like to be able to communicate with my son in a way that eases his frustrations, but I know we’ll get there. Would I like my family to be able to look at my son with happiness and understanding instead of having looks of confusion and pain? Certainty. It’s things like that that are hard to move past, it’s totally others and our environment. Do I think it’s ok to be sad about that? Yes. Am I sad about my son? No. I’m glad he’s different. He’s a better person than anyone and everyone I know, that’s a fact. He loves and he loves and I just wish he could always receive that in return, that’s all.

    • Hi Erin,
      Yes, I’m sad about the ways that my child is received in the world too. I’m sad that the world doesn’t accommodate and support her unless I fight tooth and nail for that to happen. Certainly, there are times where the world around us takes the wind from our sails. That is very different than being sad over who my child is if that makes sense. I guess my point was that we need to distinguish between being angry at the world and angry about the brand of kid we got. Hope that makes sense.

  3. I concluded early on I was a “dud” . That being one of the first real words I knew to express my failure to be what my parents wanted. Because I was often silent and often under things much was said about me that spelled this out. Dud was the word I latched on to because as the child of a three family extended immigrant family working construction, belonging to the newest arrived one I would sometimes need to be taken on the job (duck if the peoples from WCB (enforced working safety) which meant viewing the part of where supplies were kept where the duds were stored for return, and as my uncle who had the earliest start in the day and thus the earliest finish would sometimes wind up picking me up from my father’s site while he took things to the dump where I could view a wider variety of objects that seemed perfectly good but that were broken enough to be there.

    I suppose in a way my uncle was a bit of a counter-repair but not enough for the negative things I heard about being defective, but with great enthusiasm he would resuce things found there that often became prized possessions of someone in the family. I do understand the sadness about the way the world will treat a parent’s offspring. I do get that will sometimes spill out even. In the over 20 years I have had internet from my home the gains in destigmatization of autism and acceptance I used to think would be the logical outcome of more autistic people being able to tell their story haven;t happened. Instead that same potential instrument of conveying a reality has been used more effectively by the autism as industry folk to paint an even bleaker picutre than in my childhood when parents were still urged to forget about their autistic kid and start over.

    I grieve for myself so I can’t really say don’t grieve but clarifying what it is that upsets you is a good idea.

    Grief isn’t synonomous with rejection or the reversal of love in all cases sometimes it is because they do love their childf and can see heartwrenchingly clearly that life will be harder than it should have to be for both themselves, having to fight insanely hard to get what are considered basic rights and needs met for their child in an appropriate way and that child who may grow up to have the very bleak stats that current autistic adults have.

    Grief isn’t always anger I don’t think although there is a component of anger. Everytime my complete and total ability to adjust to even a good change blows my world apart I grieve. I don’t wish I never was, I don’t even wish I wasn’t autistic as I assume the good aspects of myself also have a root there I just grieve that is so darned hard.

    • Thank you, Gareeth, for your very thoughtful reply. You say it better than I do…”clarifying what you are upsets you.” Yes. Because what I most often hear is grief over the child not about what the child faces because of a world that isn’t built to accommodate. I really appreciate and thank you for what you’ve shared and hope that it won’t always be “so darned hard” for you and other Autistic people. Love to you.

  4. ((Thank you.)) I think parents are looking for support for the kind of intense parenting they are doing. But I think looking for that support in overwhelmingly negative ways (with public discourse of pity, fear, and tragedy) serves no one well – parents or autistic people

  5. I guess I’m pretty forgiving of the fact that what people feel when in shock, or when they’ve had their expectations upended, is often not what they “should” feel, or what we wish they would feel, or even what they may eventually feel. And people are systematically taught all kinds of things about what they should be able to expect from the experience of parenthood and from their children…and our society still has a pervasive attitude of autism being a shocking and catastrophic problem. Those things are wrong…but I have a hard time blaming individuals for the sheer fact that they’ve absorbed those messages, which are *everywhere.*

    People go through personal evolutions and epiphanies to get to better places. I, too, once thought terrible things about autism (and treated myself terribly in a lot of ways for it, even without knowing that’s what it was at the time).

    So where I get judge-y is when people have access to better information, and are given opportunities to reconsider their experience and think differently, and STILL refuse to listen, learn, and consider the impact of their words and thinking on their children and on how autistic people are treated by the world.

    So Marco, I’m asking you to seek out writing by autistic people, to understand our experience and how it affects us when you talk this way. Several of us are linked here in the comments and in the blog roll to your right. I also recommend the Loud Hands Anthology and the Thinking Person’s Guide to Autism (both book and blog).

    • Thanks Emily. You’ve given me something to think about. I guess I just have a gut reaction to that kind of language because I think it harms my kid and I rail against it. Perhaps things were easier for me because we were, first looking at terrible diseases which would eventually kill my daughter in a really painful and gruesome way. Maybe if I were suddenly confronted with Autism, things would have been a little different–especially given all of the misinformation that there is out there and I was afraid of it before Evie was born. Okay, so Beth needs to be a little gentler and more forgiving 🙂

      • Eh, I also work in theater. Other people’s cognitive dissonance is something I have to manage on a daily basis. 😉

        I’ve heard what you say described before, though–there was a father interviewed on NPR a couple of years ago, I think, after his son had been evaluated, and the things they had to rule out first were deadly or degenerative conditions. He talked about the doctor being confused at his happiness and relief to hear it was autism.

  6. I agree. To be completely honest, however, I’m not quite comfortable with “it’s not your fault,” either. I understand the intent, and at a literal level, it’s quite true: that a child is born autistic is not the parents’ fault. But the statement implies that there’s fault to be had. Even if it’s framed as “it’s nobody’s fault,” the implication is still that the situation is a bad one.

    • That makes sense. I hadn’t thought about it that way; although, I read Brenda’s passage differently. I read it as it is not your fault that you were given the wrong parenting manual–information about Autism. Maybe Brenda will clarify. Thanks for sharing your thoughts.

  7. I should also add…this is a huge part of the harm of organizations like Autism Speaks. That by promoting the fear-based view of autism that they do, that is the first thing that parents think of when they hear that their child may be autistic. Hence the fear and grief and despair. The doom and foreboding of what their child will supposedly “never” be able to do…not that they simply process language and sensory information in different ways, may need different and more intense kinds of help, will need extra understanding but that this is a normal and perfectly fine variant of human neurology, and in no way incompatible with having a rich and full life.

  8. Fear is the best marketting tool there is and the organization you mention (I have stopped ever naming them as they need no promotion) is largely about raising more funds to raise more funds to pay their directors salaries. If you question their budget they will tell you the bulk if it goes to programs which isn’t even consistent with their own finanancial statements. That organization has to be recognized as not an ally of autistics or parents but a money sucking parasite intent only on spinning autism in ways that will bring in more money. They will never overcome how they came to my attention which was sitting in a chat room trying to comfort somene on the spectrum who’s parody site had made them rush to bring the full legal weight to getting it down. Parody is protected speech in the US (and many other countries) but intimidation is powerful. That no one apparently questioned the ethics of intimidating the heck out of someone on the spectrum from their inception made it quite starkly clear what their agenda is.

  9. For me, grief is not the correct word to describe how I felt when we got our diagnosis. Fear was my primary emotion. I was/am scared that I might not be up to the job, that my son might be endlessly challenged by being an autist in a world designed for NTs, that he might be bullied or feel excluded, or find it hard to make friends. I was worried that his neurology might make his aspirations and dreams difficult or impossible to achieve (my hope is some of these fears will prove unfounded). Those were the kind of emotions that I experienced. Certainly not grief for some fantasy child. My son is my son is my son. I did feel some sadness about missing out on some parenting *experiences* I expected to have, but that is very different from mourning an imaginary child.

  10. Rachelle Frame, I have deleted all of your comments on this thread without posting due to the fact that they all contain personal attacks. If you would like to post in a constructive way, I will certainly allow it through moderation.

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