“The worlds created by the human imagination are far more coherent and structured than the real social systems in which we live, and the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on. We take these conventional views of our social system as matter-of-fact, true representations of social reality, but they are socially constructed realities, human artifices whose purpose is to perpetuate society, not clarify it.”
— Robert Murphy, The Body Silent, page 30
I’ve been having a discussion lately with an email correspondent who was mentored by Robert Murphy, and who is himself disabled. He asked me about my feelings concerning the neurodiversity movement, and his questions gave me a chance to further understand the complicated nature of grief and disability. Some of my thoughts in this piece come directly from my portion of our emails, and others reflect the places that my thinking has gone in the midst of our ongoing discussion.
I want to be clear that I agree with many of the core tenets of the neurodiversity movement, which I consider to be no different than the core tenets of the disability rights movement, or any other human rights movement — that all people deserve respect and safety, that all people have the right to be front-and-center in conversations that affect them, that personhood should not be defined by an arbitrary standard of normal, and that there are many ways of being, learning, thinking, and perceiving. However, I no longer identify myself with the movement, in part because I saw how easily I was beginning to slip into polarizing positions that I now consider untenable — such as the absolute insistence that autism is so essential to the person that, by curing the autism, you want to get rid of the person.
I can understand that position; it very aptly describes how I feel about myself and the way in which autism is woven into the fabric of who I am. I personally don’t wish to be cured; were you to take away the autism, I would be someone else, and I do not wish to be someone else. What I wish for most fervently is to feel welcomed as an equal, just as I am. However, these feelings derive from my personal experience. There are a lot of different manifestations of autism; some people do not feel especially happy with being autistic, and some autistic people would like to be cured. Would I prefer that all autistic people be happy just as they are? Sure, but I don’t have to live in their bodies. I just have to live in mine.
And then, of course, most able-bodied parents who hear an autism diagnosis begin grasping at straws about how to proceed, because nothing in life has prepared them for going down the road ahead of them. When you combine the fear, uncertainty, doubt, and dread generated about disability in general with the fact that few able-bodied people understand the experience of disability at all, is it any surprise that most parents grasp at the “cure” straw at one time or another?
When you’ve got a parent in this position, responding with “cure the autism, destroy the person” is extremely counterproductive. It only ends up sounding like an indictment. Parents feel pushed up against the wall and criticized, so they stop listening at the very moment that they most need to hear from us.
Of course, there are people seeking a cure who take extreme positions, and who believe that autism is the worst scourge to hit mankind since the Black Death. And there are people who lose themselves in their anger that life didn’t work out according to plan. There is really no talking to people when they’re in that state of mind.
But a lot of people are on the fence about the cure issue, and they’d be open to a conversation if they felt that we respected where they are in their lives.
What’s most lacking in the conversation about a cure, from the neurodiversity perspective, is the acknowledgment that parents of autistic kids go through a grief process. I have to admit that I feel a lot of discomfort when I hear parents talking about grieving their children’s autism; sometimes, I just want to yell, “Are you grieving me? Because I don’t need your grief. I need your respect.” But, whatever my feelings on the matter, it’s essential that the grief process be recognized and respected if we’re to have any kind of constructive conversation at all.
From what I’ve observed, the grief comes from three different sources.
The loss of the idealized normal child
This grief is largely about the parents. I’m not saying that as a judgment at all; in fact, I understand it completely, and I’ve experienced my own version of it when looking at my idealized self. The way that parents hold on to the imagined normal child derives directly from the fact that, in American society, being normal is the most important value. The socially constructed idea of normal exercises a tremendous hold on the imagination. Aspiring to be normal is more important than aspiring to be a great teacher, or a brilliant researcher, or a bringer of peace to a war-torn country. In fact, it is considered to be the prerequisite to doing just about anything else. And that is because anyone who is even minimally aware knows what normal looks like, understands that he or she is supposed to aspire to it and, at one time or another, believes that normal and natural are exactly the same thing.
Of course, they aren’t. Normal is a social construct, first and foremost. In every society, it’s a different creature. In 21st-century America, normal looks something like this:
Walking is normal.
Speaking is normal.
Seeing is normal.
Hearing is normal.
Having white skin is normal.
Being a Christian is normal.
Being heterosexual is normal.
Socializing in large groups is normal.
Having an Anglo-Saxon surname is normal.
Celebrating Christmas is normal.
Speaking English is normal.
Having European ancestors is normal.
Being middle class is normal.
Being educated is normal.
Having children is normal.
Being happy is normal.
Believing in God is normal.
Of course, this list is far from exhaustive; after all, being normal is a very complex business. But if you look carefully at even this very partial list, what becomes clear is that being normal is not normative. Anyone with a characteristic not on that list falls outside the bounds of normal, to a greater or lesser degree. Having several characteristics not on that list pushes one further toward the margins. If you put together all of us who do not fulfill all the criteria, you get the majority of people on this planet.
But the illusion by which we live is that most people are normal. This illusion is a prime example of Murphy’s assertion that “the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on.” When it comes to the myth of normal, those words are especially apt.
And part of what’s “really going on” is that parents of autistic children find themselves dragged, often kicking and screaming, out of the land of normal — a terrain that they had formerly taken entirely for granted. This phenomenon leads to the second source of grief.
Leaving behind one’s own normality
Having an autistic child means that an able-bodied parent can no longer lay claim to being normal. I don’t care if that autistic child grows up to win the Nobel Prize, marry the President’s daughter, and buy a retirement home in the Swiss Alps; the minute a parent gets that autism diagnosis, normal is over. All done. Kaput. Never to return.
You know those angels with the flaming swords, guarding the path to the garden of Eden? They’re the same ones standing between able-bodied autism parents and their formerly normal selves.
You hang out with marginalized people and, sooner or later, you get marginalized. Anyone who has ever been in a public school knows this to be the case. Parents, remember the kids you didn’t want to hang out with, the ones you avoided like the plague, the ones you secretly (or not so secretly) made fun of, the ones by whom you didn’t want to be tainted by association?
Now your kid is one of them — which makes you one of them.
This inconvenient truth is what leads people to scream their heads off about how it must be the vaccines that cause autism, or the environmental toxins, or anything other than genetics because — gah! — if autism is genetic, that must mean that you’re one of us.
I’ll let you in on a little secret: You are one of us. Bwahahaha! Welcome to our world.
Sometimes, I wonder whether parents exclude autistic people from the conversation about autism in an attempt to maintain the illusion of their own normality. Perhaps, in their heart of hearts, they want to believe that their autistic children will never grow up to be us — as wonderful as we are — so that the parents can somehow disassociate themselves from us and return to the grieved-for land of normal. I’m not sure, but it certainly seems that there is a disdain for autistic adults in the autism community that borders on the irrational. I’m not sure exactly where it all comes from, but I think that a desire to avoid being tainted for life by us is certainly part of it.
The fact is that, like it or not, autism parents have entered the condition of most people who live on this earth. Few of us are normal. In fact, the people who fit the criteria of normal are a very distinct minority, indeed. But for this minority, all kinds of accommodations, privileges, and services are available — a point that leads me to the third source of grief.
Feeling frightened about the autistic child’s future
My feeling is that grief is a natural part of the process of having a disabled child and, contrary to somewhat popular opinion, it’s not always about wanting a different child. It’s often about just being scared shitless on behalf of the one you have. You watch your kid getting bullied, you see the pain the child experiences from being made to feel apart, and you worry about whether your adult child will find a partner, have even a small circle of supportive friends, and be happy. And these fears are not unfounded. A great deal of the time, the unhappiness that we face is not caused by the autism itself, but by the bigotry and cruelty of other people.
As a parent, I see nothing wrong with grieving that your child is going to face prejudice and attempts at exclusion for his or her entire life. You’d have to be living in a fantasy world to think that a disabled person is going to avoid all that in society as presently constituted, and the question of the child’s happiness under those circumstances is crucial.
What any parent of any child wants is that doors open for the child, not close. And most people understand that being normal means that you have access to the best jobs, the best educational opportunities, and the widest range of social opportunities. Normal people get to apply to college and, if they get in, they just pay their money and show up. They don’t have to fill out several pages’ worth of information about the accommodations they need and hope like hell that those accommodations are deemed “reasonable” (by non-disabled people, no less!), so that they can go to the college they’ve worked so hard to get into.
No, normal people already have those accommodations provided for them, without even asking. It’s a wondrous thing.
And what happens when you don’t have those accommodations provided as a matter of course? An easy life, it isn’t. It’s natural to grieve that. Of course, the main thing is not to get stuck in the grief and turn your kid (and yourself) into a victim.
So what do we do?
Do we focus on a cure, do we focus on making autistic people “indistinguishable from peers,” or do we work to build a world in which all the people who fall outside the realm of normal have equal access and equal rights? If we set out to do more than one of these tasks, how do we apportion our time and attention?
I consider it vital that we not make autistic people hold all the responsibility for change. Certainly, there is nothing wrong with trying to help an autistic child communicate effectively and navigate the world, but doing so cannot be a substitute for fighting to change social and cultural attitudes about normality. And the reason is simple: We will never be normal, and idle dreams about elusive cures are a distraction from the work that needs doing.
I passed for normal, to a greater or lesser extent, for most of my life. I still can, in certain contexts. Does that mean that my problems are solved? No. Does it mean that I can walk through the world, assuming that I will be respected and included? No. My difference becomes apparent eventually and, given the wrong circumstances, immediately. Being married, having a child, earning a graduate degree, writing books, and owning a house — none of it changes the fact that the quality of my life is deeply affected by the attitudes I encounter regarding my difference, by the degree to which people accommodate it, and by the ways in which people exclude me on the basis of it. No amount of passing, and no amount of achievement, will ever change that.
Autism parents, do you not want to know this?
I have always known that I am different. Others have always known that I am different. At some very blessed and happy times in my life, other people have seen my difference as a very good thing. And at some very low and very unhappy times in my life, other people have found my difference something to be derided, shamed, even beaten out of me.
Over the course of my life, I’ve acquired skills and learned to adapt, but at my core, I’ve never really changed. I’ve always been autistic. My context changed — sometimes for the better, sometimes not — and those changes had a tremendous influence on whether I succeeded at work, in relationships, and with friends. They made the difference between being abled and being disabled. And the impact upon my self-esteem and self-respect was directly proportional to how much support and respect I received.
So, if you aim for apparent normality as a way to resolve your fears about your autistic child’s life, please be aware that you will not fully solve the problem. Yes, helping your child to navigate the world is crucial, but it can’t be the end of the story. Your child will always be different. Your child will always know that he or she is different — as will others. Your child will never blend completely. Accepting a socially constructed reality called normal, as though it is available to your child means, to borrow Murphy’s words, being complicit in one of the “human artifices whose purpose is to perpetuate society, not clarify it.”
Perpetuating the status quo will not help anyone who has left the land of normal. Clarifying the status quo and fighting to change it means creating a world in which many millions of people — including your child — will finally take their place in the full light of human dignity.
© 2011 by Rachel Cohen-Rottenberg
wow. only yesterday i had a conversation with my partner about just this (essentially), though i was much less articulate, and kind of upset
sometimes my mind wanders into grief. it’s nice to know i’m not alone.
No, you’re definitely not alone. It’s entirely human to feel grief when faced with these kinds of situations.
The grief I feel over my autistic daughter does stem from fear that acceptance and happiness as an adult will never be hers. In a society that refuses to acknowledge biases, the chances for lasting change is slim.
Yes, it’s getting people to acknowledge their own biases that’s really the hard part, isn’t it? Once they get it, there’s something there to work with. Until they do, it’s very hard to have any meeting of minds.
I can’t agree. Look at how far acceptance of gay people and gender non-conforming people has come in only a few decades, or even just since Matthew Shepard’s murder in 1998. Remember how astonishing a thing it was when Ellen DeGeneres came out on television? I was in high school, in a school where it was not safe to be gay or have anyone suspect it of you. Now I’m only 10 years out of high school, and portrayal of LGBT people in the media, and as a simple fact of life, is utterly commonplace. I’m not saying that our culture doesn’t have a long way to go in how it treats LGBT people, only that real change DOES happen, and sometimes really unexpectedly.
Look at how recently it was legal and taken for granted to discriminate against ethnic minorities in education, how recently prestigious universities had maximum admissions quotas for Jews. I was a member of a student organization in college that had only admitted women in 1970. When I joined in 2000, it was unremarkable that a woman was president of the organization. In my career field, 30-40 years ago, my job was almost never done by women. Now it’s almost never done by men. In one generation. (Not that men are discriminated against in it, just that a variety of conditions have changed such that they tend not to gravitate towards it and stick with it.)
I’m not saying “yay, everything is right with the world now, we’re done,” but yes, things do change. Have grief, but have hope.
Another very relevant post!
I’ve been thinking for a while now on how to approach my son’s school, and talk to them about providing some kind of “diversity training” for the children. It seems like if they start at a young age, and talk to them about how everyone is different and unique and valued, that as they get older they will carry those values with them.
That might be wishful thinking.
If you have any thoughts/suggestions on that, please let me know.
@Flannery Don’t have any specific advice on how to approach schools, however I think that’s an excellent idea. Racing children to accept mental difference would be a massive step in the right direction. Do everything in your power to put your idea into practice.
Hi Flannery,
I think that’s an excellent idea. There’s an organization in my town called The Vermont Partnership for Fairness and Diversity, and they do a lot of trainings regarding racial and ethnic diversity. Part of their mission statement is to bring disability into the diversity conversation, so I will send them an email and see whether they have any experience with bringing that message to the schools.
Also, are you familiar with the blog of Mom-NOS? She did her own mini-diversity training at her son’s school, explaining to the kids about his autism. He is in an inclusion classroom with highly conscious people, so that was her way in the door. She posted her whole presentation on her blog. Perhaps you could use some of what she wrote? The posts on the presentation start with the following link: http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid-in-toaster.html
Let me know what you think.
This article highlights the main reason why I chose to live in denial of Autism for my whole childhood. I was afraid of the consequences of this idealistic world of normality. I was afraid of being excluded from opportunities. But later I realized that it was my denial which was causing my exclusion. By outright denying my differences, I never learned ways to work with them, making the whole problem worse.
Your perspective on the issues parents of autistics face are interesting, exposing how social differences can migrate across people. And people graving out of a fear of the future. I think this is is just a side effect of our cultures single focused nature, rarely exposing the differ ways of doing things. What most people don’t realise is that there are always other ways to do things.
From my point of view, the life most people chase is one of complete and utter boredom. Go to school, go to university, find that illusive high paying job, work your ass off to fill your house with useless junk, Marry, have children, die. Yawn.
Why be like everybody else, when you can be unique?
I’ve always liked being unique — except when it’s cost me grief at the hands of other people. It’s quite a double-edged sword.
I know what you mean about the denial borne of fear. It’s probably the main reason I came out about my diagnosis immediately; I didn’t want to let my fears get the better of me. To hide myself always tends to increase my fear, rather than soothe it. Better to just be myself. At least, then, I can spend more time dealing with “what is” than with “what if.”
Agree about the double edged sward thing, I’ve had more positive experiences than bad, but then thats just me
I’ve always wandered why you immediately accepted autism, rather than denying it. Interesting how you went public out of the same fears that drove me into hiding for much of my childhood. Hiding defiantly makes problems seem much bigger than they actually are in reality. This same problem keeps many people down, not just those on the spectrum.
Really enjoyed reading your book. While it contains much of the same information from your archives here, it also has enough to stand on its own. Particularly enjoyed the sections about your early relationships, something many people would not be comfortable talking about.
Oh, and I emailed you an interview about the book last weekend, did you get that?
Hi Robert, I did get your interview questions and will do my best to make time to answer them soon.
Thanks Rachel. Only asked because I’ve been getting an unusually large number of no replies on that address, and wandered if it had gotten on a blacklist or something.
I was puzzled over my son’s diagnosis, because so much of his “odd” behavior was a part of our family. Now I realize that autism has been with our family for generations. Many aunts and uncles have lived reclusive lives. Others have just one child or none. Some of us can “pass” other’s cannot. I think of them, and how alone they were with their thoughts and fears.
I don’t want my son to be alone. It is reassuring that others who have “left the land of normal,” are there to support and comfort us.
Thank you for the wonderful post.
Ditto, Lori. Been in my family for generations. We have a transcription of a journal written by my great-great-great grandfather in the 1870′s, in which he bemoans his intractable loneliness and inability to connect with his children. A relative wrote a foreword/introduction much later, saying something along the lines of “we just can’t understand why such an admirable man, so intelligent and talented, was never able to settle himself into a normal family life.”
People say “but where were all the autistic people when I was growing up?” and I think, everywhere, but, as you say, alone with their thoughts and fears, possibly ashamed, trying desperately to be something they could never be and failing to various degrees, becoming more marginalized in the process rather than less.
Your son will be far less alone than we’ve ever been before.
Chavisory,
I must have botched my reply last week. It is reassuring to hear that others can trace autism back to their ancestors. I believe that autism is largely genetic. Your comment sent me back to my Grandmother’s journals for some insightful reading.
You wrote:
…and I think, everywhere, but, as you say, alone with their thoughts and fears, possibly ashamed, trying desperately to be something they could never be and failing to various degrees, becoming more marginalized in the process rather than less.
Thank you for this. This sums up many parts of my life. I wish I could find my own words, but the best I can do is nod, smile and rock.
“Your son will be far less alone than we’ve ever been before.”
And thank you again. That is all I really want for him.
Thank you, Lori. I also come from a family in which I can trace autism at least two generations back. My great-aunt, unfortunately, was consigned to state mental institutions from the time she was 11; my father had many more opportunities, but lived a very painful and lonely life. As hard as things have felt for me at times, I know that just being able to find others like myself has made a huge difference.
Rachel, have you ever read Ursula K. LeGuin’s “Earthsea” books? If you haven’t, I think you’d love them. She was fed up with the tendency in fantasy and sci-fi literature to idealize the white American male version of “normal,” and so she wrote a world that made obvious the ways our world actually is that we’ve simply been trained not to see: that most of the world is water, that most people are dark-skinned, not Christian, and lack access to much of a formal education, etc.
Having never, for 28 years, been a member of the land of the normal myself, I was actually stunned, when I was diagnosed, to discover how good it felt to know just how normal I was within the autistic world. My vividly detailed long-term memory–normal. My ability to be enraptured by visual detail–normal. Extreme emotional sensitivity–normal. I’d grown such a thick skin to criticism or disapproval for not being normal, such a defiant sense of self-worth that said “no, I’m not normal, no I don’t care, and you can go suck it if you’ve got a problem with that”…that it was a little hard to admit what a relief feeling even a little bit normal for the first time was. That I wasn’t really so unique. That it was actually *okay* to be normal, and even to like it a little bit.
Chavisory, I’ve never read the Earthsea books. I’ll be putting them on my list.
I know what you mean about feeling normal for the first time. I got to a point a couple of years back in which I realized that I’m normal *for me* — and that I share that feeling with many others. I think that’s the best way to define normal — internally, rather than externally.
I have had no such epiphany and struggle daily still with the desire to be more like others. It’s very , very hard. Some days are better than others, but it’s still a struggle.
Yeah, I know that struggle. I think I just got old and tired and decided to stop fighting with myself. I still have my self-esteem issues, as we all do, but being able to see these things in a larger context really helps me.
((((((((((((hugs)))))))))))))))))
The Earthsea books are awesome!
Normal, ya. I left an ex-partner over him trying to make me ‘normal’ by hitting on the one thing I can not change. When dealing with new information I am slow. I can’t change how fast I process stuff, and its very very frustrating when people step in and do it for me. Or remove me from a task/job because I’m taking too long.
I’ve learned to hate the ex’s version of ‘normal’ its not normal, and its boring. I like unique people, I prefure people that are their own selves. Quirks and all.
I remember being taught as a child that everyone has their own strengths and weakness’s. I have strengths that are very strong, and weakness’s that are extream. I sure as hell don’t appreciate people pulling me apart because of my weaknesses.
On study of my own family. I strongly suspect my fathers family has it… and possibly even my mothers. Its more normal then the ‘normal’ that people call normal.
Jack, that’s really awful to have your partner be so unaccepting. I hope you find someone who will value you for who you are, with all your strengths and all your weaknesses, too.
I really hope so too
I can only speak for myself, but I found a great relationship with a great guy at the age of 36. Sunday, we celebrate our fifth anniversary (okay, it’s not 20 years, but fantastic for me!).
Possible, but difficult to find. It helps that he’s on the edge of weirdness himself, and understands difference better than most.
[...] began this as a comment to Rachel’s May 18th post about neurodiversity, a cure, and acting normal, but it go so long I decided to put it here [...]
[...] began this as a comment to Rachel’s May 18th post about neurodiversity and finding a cure, but it go so long I decided to put it here [...]
This is a great post. I started to write a comment but it got so long that I decided to make it into a post on my own blog. If you would like to read, you can do so at http://thoughtyautie.wordpress.com/2011/05/18/sometimes-a-comment-grows-into-a-post/
The comments on this post are also wonderful. I can relate a lot to what I am reading. I’m winding down for the night, but I will try to come back tomorrow and comment on comments
Hi Emma,
I love your blog post. Very thought provoking! So glad you found us here.
(I didn’t get to address the issue of normal in my post, but I would very much like to do so in the near future. I have been giving all of these things a lot of thought lately and I was happy to stumble upon this post tonight!)
Great post. I completely agree. For me it is the third issue that generates the anxiety about my sons future, yet I also feel great optimism. Viva la Difference.
It’s much better to live in hope, isn’t it? It’s hard to let go of the anxiety, but it’s so important to counterbalance it with optimism.
Thank you, thank you for the SHARE button ! All ready used it !
Thanks for pointing out that I ought to include one!
I found this very interesting. After our diagnosis for our son I did grieve, but it was mainly for the loss of what I perceived him growing up to be. I came to the conclusion that all my kids are going to be whatever they want, regardless of what I want them to be. It’s my job to help them get there, Autism or no. Truth be told, we have Autism on both side’s of the family and none of us are close to normal.
Something I kind of like–not to be like others. I love my kids for who they are, how they are. Guess we passed down the dominate gene and a good one at that!
Lizbeth, yes! We need more of those genes in the gene pool!
I know what you mean about the loss of who you perceive your child growing up to be. I think that all parents of healthy, happy, empowered kids go through that. You have a picture in your mind and then they become… themselves! For me, the real Ash is so much more amazing than all my grand ideas when she was 4 years old, and I’d much rather see her fulfill her own dreams than mine. But sometimes, I look back, and I think, “You know, I would have done a lot of things differently if I’d known who she’d become. I’d have concentrated more on what she’s ended up loving, and less on what she’s cast aside.” But hindsight is always 20/20.
Of course, for special needs kids, the consciousness of the disparity between the dream and the reality happens much more quickly, and there’s very little time to prepare. So it’s a lot for parents to get used to.
Brilliant post. A fantastic piece for sharing with a parent who has just received a diagnosis for their child, and equally as important for us parents who have been doing this for a while. You beautifully share some vital truths.
Thank you for understanding that the grief we go through isn’t an ongoing personal attack on our autistic children, it’s just something we have to go through to come out the other side ready and able to do the best by our children. (For most of us anyway, and definitely for me.)
Thanks so much, A&O. It’s taken me awhile to get past the defensiveness about the grief issue.
My main concern, at this point, is the way the grief is sometimes expressed, not the grief itself. When people say things like, “My daughter having autism is like my father dying of cancer,” I really feel the need to ask them to take a step back and consider the implications of that analogy. Do they really want to go around comparing autism to cancer? How will that make the child feel? How will that make others view the child? What will that comparison mean to the child’s self-esteem and sense of self? To how the child is treated in the world? These types of issues concern me.
But the grief itself — how can you argue with a feeling, you know? You can’t. You can only try to understand it.
Well said, and good points about being aware of and careful about how that grief is expressed.
Wow. I think you make excellent points about grief. I experienced all of that. My son regressed, and I immediately fell into the “Something happened to my baby! He’s slipping away!” crowd and then I’d cry when I’d watch children have wordy conversations with their parents. I was very aware of it, too, and felt guilty because I knew I was grieving for me. I also flinched when I first walked into his school because I saw all the different mannerisms of the other children and I felt like I had just left “normal”. I also felt that way when I first checked out support groups. And then came the waves of fear for my son, and they still happen here and there, and I suppose some of that just comes with the territory of being a parent, and having concern for a child, any child. I never felt any pain like the pain I felt the first time I saw a cousin of his tease him. That was a lot worse than a little diagnosis.
I am not going to be ashamed of my grief, but I feel it is SO important to get past it. I thought tragedy had entered my life and that seems ridiculous now. Maybe it is even a little unfair that here I am, the mommy, and my 2 year old has taught me so much and made my life SO much richer by a) existing and being awesome and b) opening me up to a world that may have made this “able bodied” person uncomfortable at one time. It’s like my blinders- that have been up my whole life- are off for the very first time. And without my son and his quirkiness, would I be as good a person living as good a life as I am right now? Would I have enough character? Decency? It’s scary to think.
What a wonderful comment, Sunshine! Just beautiful. Your son is so fortunate to have you.
A very well written post, once again, Rachel. I think, for some, the grief depends on many things, as you know…but with those severely affected, who cannot live without constant supervision and support, there is the fact that the future is so scary: no good places to put a child/adult once the parents can no longer care for them.
Thank you for pointing this out, Claire. I’ve become very aware, after reading your blog and others by parents of severely disabled kids, just how frightening the future can look.
But the fear is there, to a greater or lesser extent, even for parents of so-called “high-functioning” kids. There are young adults with Asperger’s in my community who would be homeless if not for services that are now on the chopping block in Vermont. They talk about cutting “caseload,” as though actual people aren’t involved. And if Paul Ryan’s horrific federal budget plan had gone through, Medicaid would have been cut for people who depend on it to live independently, with the result that a lot of disabled people would end up in nursing homes.
What a world, eh?
Claire touched on an important issue: grief can be for the difficulties the child will have, difficulties that have nothing to do with discrimination or lack of understanding or not being ‘normal’. All the acceptance in the world can’t change the fact that BB must live in a world where dogs run, babies cry, flies buzz and all the other triggers that make his life so hard. Personally I felt a huge sense of liberation when I realised that BB allowed me to leave the conformity of ‘normality’, but I still sometimes grieve over the aspects of his life that cause *him* grief, and they have nothing to do with other peole’s attitudes. I realise my experiences are different from most, and I don’t want to deflect attention from the important issues that you’ve raised, I just wanted to point out that sometimes grief isn’t about parental expectations.
You’re right on all counts, bbsmum.
I had been thinking about this question from the perspective of parents who are struggling with the question of how to help their kids “blend” and whether that will resolve things; I’ve been doing a lot of reading and thinking on that particular issue lately. It’s clearly a whole different ballpark from what you and Claire and others deal with. I apologize for the temporary blinders there.
And of course, for parents of any child on the spectrum, watching a kid be in pain from sensory issues and the resulting anxiety, is part of the grief. I should have included that, since acute sensitivity and anxiety are things with which I still struggle, and I know how difficult it is for my loved ones to see me dealing with things that are a breeze for them. They’re not grieving for themselves at all; they’re having compassion for me.
No need for apologies Rachel – we all speak primarily from our own experiences, which is why we benefit so much from listening to each other
Thanks, bbsmum.
Thank You. Thank You from my heart. AS a parent of an awesome, incredible and loved autistic child.
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That was my fight with my family when they learned their grankid/nephew/cousin/ is autistic. The first answer I had was : ” they will find a cure” I do not want him to be cured!. He is PERFECT that way. Because he is HE.
I did had my grief moment, but af you mentioned not because I wanted a “normal” child – socially denominated normal- but because I fear for him. I fear he will be rejected and suffer more than what he would had in other enviroment/situtation. But then instead of hidding the fact I chose to be honest and direct if someone ask. As I think as honest and direct as I can be will also make people see things are not “as bad” as they think. Things are great. My son is magical. And it is not because he is my son. It is because he has showed all of us we are so wrong about what autism is. Because we werent paying enought attention.
Since the beginning of his pre diagnosis I did said “well but what is really normal in this damn world?”
He is in therapies. But since the beginning I was clear I do not want to change him. I just want him to receive help to learn to speak and express himself. that is my mail goal with him. For him to learn to talk. so he can express himself. He is little so writing is still not an option, he just has his voice right now. And all he uses it for is chanting, singing with out lyrics and memorize music, music and more music. ( I told you he is awesome
. ( And of course.. He says Dora -the explorer-)
Sabrina, I agree: I think it’s important to teach life skills, but not to force autistic people into a narrow mold of “normality.” Having recovered from my attempts at full-time passing, I am a much healthier and happier human being.
I agree that the people who hold all the normal traits you listed are in the minority. But for each normal trait listed – that trait is the most common, or majority, of our American society. My same list would go like: _____ is most common. And wanting to be like others, a part of the group, is natural, is normal.
I had to use a bit of self-discipline to not lead my comment with: Your excellence in writing near-overwhelms me, Rachel.
Appreciating your voice.
Thank you, Barbara!
Thank you for this post. I find myself easily confused by so many of the terms associated with neurodiversity and am sometimes afraid that I will say something that will be seen as going too far one way or the other. I just haven’t had the time to do enough reading yet to feel like I have a grasp on everything, and I really appreciated hearing your take on the subject.
With regard to grief, I have a much different view on my own response to things since I have started examining my own ways of thinking and perceiving the world. Looking back, I can see that my grief over having a child born with severe hypospadias and then having him later diagnosed with autism came (partly) from feeling like my one chance to do something “normal” had been taken away from me. I had the feeling that having a baby would give me a way to fit in with other women and have a common experience and language with them.
I have come to realize over the years, and especially lately, that my son’s issues had nothing to do with my difficulties becoming a part of the group at church or in the neighborhood or anywhere else. I have started separating my view of him from my view of myself and that has given me a lot of freedom to help him where he needs help, as well as to see where I am the one who needs the help.
AM, I can completely identify with the desire for our children to “normalize” us and provide us an entry into the society of “regular” people. To a large degree, my NT daughter gave me just that, and I’m now realizing that much of the grief I feel about her growing up into adolescence and adulthood has to do with the end of that era in my life. Now I’m just myself again — feeling different and awkward as usual, and having to make my way on my own. It’s not so difficult as before she was born, though, because I know myself better and have grown up so much since then.
This is a good post, and I agree with much of it. While I am not interested in the idea of a cure for myself (if such a thing were possible – I don’t believe it is), I don’t think everyone should agree with me and it’s not up to me to tell other people what they should be willing to live with.
I find the attitude that there is one right way to approach this sort of thing tends to come with particular other assumptions that I don’t really care for* and that honestly make little to no sense to me.
Not fond of other extremes I’ve come across, either.
* I’ve seen a lot of “aspie supremacy” for example, or even the assertion that Asperger’s is not a disability, but only a difference. Or authoritative statements that it is only disabling because of society, or only the social deficits are disabling, and so on.
I think the thing about the disability/difference thing is that for many people–not just those on the spectrum–society is constructed in ways that compound the difference, either making it into a disability or making it worse than it needs to be. Most commonly, this stems from a lack of willingness to compromise (which is probably the biggest problem spectumites deal with–and they say we’re the stubborn ones?) If we were all more willing to listen to each others needs and deal with them, rather than deny them or fall back onto the ‘rugged individualism’ paradigm, this world would be better for everyone.
(The ‘rugged individualism’ thing pisses me off because the idea that we have only ourselves to rely on denies the existence of society at its most fundamental level–that of being able to rely on others. Without that interdependence and reliance, we would never have come as far as we have as a species.)
You’re so right about the “rugged individualism” paradigm, Jayn. It’s largely responsible for the lack of services available to disabled people.
Yes, it’s definitely the people at the extremes who have taken over the conversation, and that’s just plain unproductive, as far as I’m concerned.
I haven’t really understood what the described ideas of normal had to do with disability all this time. When I think about the mental disability I suffer, those concepts of normal aren’t in my mind really. I don’t think significantly many out there are pushing such ideas of normal, or whose negative perception of disability is contingent upon that concept of normalcy. I’m not one to value conforming to some arbitrary set of tastes and customs.
But I’m not handling it calmly that I have mental impairments as part of my position on the spectrum. I don’t think of it in terms like or normal/abnormal, but in terms of weak/strong, unable/able, and submissive/dominant. I loathe having weakness and hate losing. I’ve felt miserable cause of working so hard and not accomplishing and learning what I needed to, and consequently not getting truly rewarded for it, while I just screw up even basic things. I loathe my dependence while having to rely on others economically and to do things for me.
I feel disappointed when seeing those who I’ve known growing up moving on to better things and careers, while time just passes me and my string of failures by. I would have liked to have gained the kind of success my parents had, even if not really to please the family members I know, cause I feel like part of some dead end otherwise. Others being nice to me or whatever accepting me would mean, wouldn’t ease my feelings either. I don’t want to have to be pitied and sentimentally handed down kindness. I want to be an equal. I would love to be like the successful high-aptitude autistics and wish I had what they had. I know that what I’m saying could be kinda disturbing, but I can’t feel any other way.
Hi lurker,
I don’t at all mean to suggest that all of our struggles come from a yearning to be normal; some struggles are just struggles. I have had many feelings similar to yours, especially regarding watching old classmates and colleagues meet goals that are out of reach for me because of my sensory issues. I don’t have anything defined as a a mental disability, so I would never presume to understand your experience or tell you how to look at it. All I can say is that much of my pain has to do with trying to live up to an idea of “normal” that is absolutely arbitrary. Yes, I can’t do all the things I once aspired to, but I can meet other goals that, when I look at them clearly, are just as valuable.
Oh, I agree with this so much.
Personally, I never had a grieving process in regards to any of my children not being “normal”, but I wonder just how much of that is due to parents who grieved and refused to accept a (misdiagnosed as) brain damaged daughter.
Darcy, your insight is very keen on this. I find that I’ve done and felt many positive things with regard to raising my daughter that have come out of my parents’ lack of acceptance of me. I think there are only two choices when you’ve had less-than-loving parents: you either repeat their mistakes (which is anathema to both you and me), or you bring out the positive (which is what we’ve both done).
After 61 comments, it seems almost silly to put in my two cents, but I want to thank you for this post. I hadn’t read your blog in a few weeks, and I’ve been shocked (no other word for it) at how it feels like you’ve been thinking the same thoughts as I have been. We have some different conclusions, as I mentioned in another comment. I really admire your ability to communicate about these subjects, especially this one, without sounding angry, bitter, or strident. You seem to always maintain a cheerful tone, which, I think, makes this difficult (for some) material easier to digest, and since it’s so important, that’s a very good thing.
Yesterday, I had come upon the fact that it seems as if the majority of so-called advocacy groups for those with mental illness were founded by the parents or siblings of those with the diagnosis, and my conclusion? They all want to find a cure, and they also want and must believe in the disease model of mental illness, for otherwise, there may be something in the family that needs to be addressed. If it’s not a disease, then the “normalcy” of everyone is suspect!
When I was blogging about this, I had thought about a post you’d written a while back about autism advocacy groups that were founded by parents. All I could see is the desperation of holding on to the disease model, and so I didn’t mention any of the other disability advocacy groups. I just couldn’t see the connection clearly. That simple and obvious thing, the illusion of normalcy and the loss of it, is the thread that runs through almost all of them.
I’ve known and been told I’m not normal throughout my entire life. The quest for attaining the mantle of normalcy has practically destroyed me. If instead of being told I was not okay, and in need of fixing, and my gifts were focused on instead, I would have been better off. That’s my story, but I know it’s the story of everyone else with any “disability.”
Yes, the quest for “normalcy” does run through all the different “cure” efforts, and it’s terribly destructive when people cannot be “cured.” After all, we need to live with ourselves in the here and now, and that means having healthy self-esteem and familial/community support for being the people we are.
[...] Neurodiversity, Grief, and the Normal Minority and is republished with permission. Part two will appear here tomorrow. [...]
[...] Neurodiversity, Grief, and the Normal Minority and is republished with permission. Part one can be found here. [...]