I recently read a post by Rachel Cohen-Rottenberg over at Journeys with Autism entitled “Autism Parents: It’s Time to Stand Up With Us.” My reaction to this post was mixed.
Rachel starts off addressing a very specific issue, namely parent who make comments like:
How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease
Regular readers of this blog (and probably most irregular readers, as well) know I am not one of those parents. I do not make those comments. I believe those comments stem from parents focusing on themselves when they should be focused on their child. Self-centered parents make for maladjusted kids, regardless of their diagnosis or lack thereof. So, know that I am not defending these parents in any way.
Rachel goes on to ask:
Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours?
I’m totally on board with that. Those questions—and the way she develops them—are important, worthwhile questions that stem from a very painful experience. I get that. I really do.
Then, Rachel turns this reflection around by asking: “What can we do to stop this from happening?” Considering the title of her post, “Autism Parents: It’s Time to Stand Up With Us,” I think we can assume the conclusions she draws.
But—and this is where I obviously stray from total agreement—the trouble is it’s much, much more complicated than that. See, the questions Rachel asks and the conclusion she draws creates the same line in the sand that those parents create.
It’s us/them thinking. And that is the problem.
The challenges autistics present to society and the challenges society presents to autistics are situational. A great big part of this awful situation is us/them thinking. The us/them thinking starts in the form of bigotry and misunderstanding, which leads in turn to us/them thinking in the form of autistics versus non-autistics.
It’s not us versus them. It’s all of us.
You see, I am not neurotypical. I do not identify as neurotypical. But I’m not quite autistic either. And, you know what, I’ve stopped going on certain autism blogs because of all the hate directed at me for not being one of them. And I am one of those people Rachel hasn’t seen calling out to other parents of autistic kids and telling them they language they’re using is demeaning! Yet, I’ve been hated off autism sites for not being autistic. That’s us/them thinking.
Rachel cites many other social movements. She states that it takes people on the inside and the outside of those groups to evoke the kind of social change that is necessary. She’s right, but that doesn’t just happen. And it doesn’t happen by saying “stand with us.” It happens when the people involved—both the people within and the people outside the minority group—identify more with being people than they do with being inside or outside the minority group!
So, when Rachel says, “stand up with us,” the “us” should refer to fellow advocates. Unfortunately, that doesn’t seem to be what she means. Rachel ends her post: “So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.”
I’m sorry. I don’t agree. Our fate is inseparable. No us, no them, and no yours. You cannot unite by dividing. You cannot join by categorizing. You cannot call together by alienating. The issues we all face are situational; it’s not them versus us or us versus them.
*takes a deep breath*
See, I prefer stories. Stories can show, and showing can teach, and that just makes it all the more real, at least for me. So, let me leap back a few years and show you what I mean.
Years ago, my children were in Early Childhood classes and the Birth to Three program (pre-school for children with special needs), because they had demonstrated developmental delays. We didn’t know why, and nobody was very forthcoming with recommendations on where we could get additional help or *gasp* explanations. As my husband and I saw it, our children were developmental delayed and we were working hard to address those delays; since no more help or information was forthcoming, we did the best we could with what little we had.
Then comes my sister-in-law’s wedding. We were at a special dinner with “just the family,” which happened to include a lot of people, including people I’d met only at my own wedding and some others who I didn’t remember ever meeting at all. The dinner was held in a long dining area at a local restaurant. It was loud, dark, busy, chaotic, and smelly (not bad smells, just a lot of them). I hadn’t figured out how to cope with these situations very well myself yet, so you can imagine it did not go over very well with my un-accommodated autistic toddlers.
*sigh* I look back at times like that and I cringe. I want to kick the self I was back then. I want to scream at me, saying, “Can’t you see what this is doing to your kids!?!”
The truth is I saw, but I didn’t understand. I rely very much on words to process information. I can process ideas and feelings, but I rely on words to ground them in expressible reality. I knew I needed to get out of there and that my kids needed to get out of there, but I couldn’t explain why we needed to get out there—not to myself and certainly not to my family. So, I was stuck with the obligation of being there and keeping my kids there…until we were all thoroughly melted down and had an excuse—I mean, a justifiable reason—to leave.
So, I look back and I want to kick myself, but I also forgive myself for my ignorance. I DID NOT KNOW. I COULD NOT KNOW. So, I rest assured I did the best I could, however poor my best happened to be at the time.
Anyway, the really momentous thing did not happen until after we left the room. My mom, who was invited to help with the kids, and I took the boys out into the chilly, blissfully quiet outdoors, so my lovely children could scream their bloody heads off in peace. Because, of course, they were past the point of consolation; they were thoroughly melted down.
First, my mother in law came out, full of concern. Then, my grandmother-in-law came out, full of concern. After a little while with us, my grandmother-in-law took me aside, with someone else holding the fussy child, and said very softly, very gently: “Something’s wrong. You need help.”
Yes, I knew that on some level. Yes, we’d tried and failed to get that help. But this woman was the matriarch of my husband’s family, and had lived her life as a nurse to boot. This woman had authority, and the soft, gentle way she said those words added more impact to the words than shouting could have done.
Now, I want you to think about what she said for a moment.
*….thinking…thinking…thinking…*
Okay, how ‘bout I put it this way: She didn’t say “your kids are monsters and you need to get them fixed.” Believe me, the way they were acting there are a lot of people who would have said something to that effect and they all seem to hang out in grocery stores.
“Something’s wrong.” Not: “Something’s wrong with your kids” or “your kids are broken” or any of the number of insensitive, painful ways the subject is broached to many, many parents of children with autism. “You need help.” Not: “Take them to the doctor” or “can’t you give them a pill or something” or “you really need to teach your kids some manners” or the many other painful things parents of children with autism hear on a regular basis.
Those precious words—“Something’s wrong. You need help.”—were the foundation for us. We were very, very lucky to have that as our foundation.
I’m not saying all the good we’ve done for our children can be laid at my grandmother-in-law’s feet. Mark and I certainly have done our parts, and the information we’ve gotten from many parents of autistic children and many autistics themselves has helped a great, great deal when it comes to us having done/continuing to do our part.
But she gave us the foundation we needed to look at the situation as the problem. Very, very lucky, for us and for our kids.
*another deep breath*
I agree with Rachel that it is intolerable that people with autism have grown up and continue to grow up believing they are some kind of tragedy. That has to stop. But, it’s not going to stop with us/them thinking. It stops when we force ourselves to look at the situation as the problem, and how we—all of us who care about autistics—can address that problematic situation.
The problem is not the autistics. The problem is not the parents of the autistics, who may or may not be neurotypical. The problem is that we divide ourselves, because we believe we are fundamentally different. We’re not. We are fundamentally the same with individual differences that make each and every one of us special, worthwhile human beings.
We can stand together, as advocates and as emissaries. But we cannot stand with you; we are you and you are us. Some of us just haven’t figured that out yet.
This was wonderfully and powerfully written.
I see the point you’re making, about how there is no us/them. That they are us and we are them. I understand that on an intellectual level, but when you live your whole life feeling fundamentally different, and being seen as fundamentally different, it can be hard to feel understood. At the same time it can be hard to reach out and understand. I guess that’s your point, though, isn’t it? That in order to make progress, we’re all going to have to find a place of mutual understanding. I agree with that.
Rachel is my dear friend, but like you I didn’t agree 100% with her points. It seems it’s all just too complicated some times.
Thank you for this post.
I think you should get in touch with Suzanne Wright, and convince her that we’re not all broken, and that autism need not be “eradicated”. Then we’ll all be one big happy family!
But seriously, I can see the wisdom of what you’re saying. I see Kim Wombles saying pretty much the same thing, and I’ve learned from that and tried to “dial it down” when addressing parents who have wandered onto “the other side” thinking they would find their answers there. I think she’s had some successes in getting better information to them, and she couldn’t have done that if she had first alienated them. Thoreau, Gandhi, and MLK were all right. I’m all for it.
But who’s going to tell “the other side”? The ones who think we’re damaged by mercury or vaccines?
Laura,
I admire and respect Rachel. I did not intend to disrespect her or devalue her contributions in any way; if that’s how my post came across I sincerely apologize. She is a very valuable voice in the autistic community!
With her post, Rachel is coming from a very difficult place, and her points are all valid. She takes the hurtful words of these parents personally, and I recognize how painful that is. But I also know, from personal experience, that healing comes from not taking those words personally. You can still be an advocate and you can still inform parents (and others) on how hurtful those words are without internalizing that hurt and taking the pain into yourself.
It can be very difficult to do. I do understand what it is like to feel fundamentally different. I know what’s it’s like to be ostracized and belittled because you don’t think, act, speak, and move like “everyone” else.
But at the core–at those surface and deep places where we reach out and touch each other with the words we use–we are all fundamentally the same. When those of us who are atypical are “them” it hurts. I know that. I’ve lived that. The same is true the other way around, though. When those of us who are not autistic or who are “merely” parents of children with autism are “them” it hurts just as much.
Clay,
Anti-vaxxers (spelling?) are actually a fairly small minority in the entirety of the autism community. They are a loud, well-funded, obnoxious minority; but small nonethless.
How can people who honestly believe that their children’s autism is proof they were harmed by vaccines be reached? I don’t know. I have no idea how to reach people who completely abandon reason. I’d rather try talking sense into a group of fundamental religious right-wingers or a group of ultra-liberal lefties–or both together!–than deal with the anti-vaxxers. I lack the scientific background to fight them with facts; and I’m too grounded in reality to fight them with anything else. I’ll leave that front to those who are better equipped for it.
However, not all parents–not even most parents–who are traumatized by their confrontations with their children’s diagnoses of autism are anti-vaxxers. Most are just trying to make it through one more day, with inadequate understanding, inadequate services, and misinformed and/or apathetic doctors, teachers, aides, and therapists for guides. Those are the people I want to reach. They are the people who hear “Autism Speaks” and hear hope, because they don’t know any better. They honestly, truly don’t know there are other options, other ideas, and other points of view, because they are just trying to make it through one more day.
There are more than two sides in the autism community. There are actually quite a lot of sides. If all willing advocates do their part, and address those issues they are well-equipped to address–and acknowledge those that they are not well-equipped to address–then change will happen. It’s too slow and very painful at times, but it will happen.
Thanks for your interesting blog, and your post today. All food for thought.
Sharon,
Thank you for stopping by. You’re welcome to share whatever thoughts you’d like with us in the hopes of attaining some mutual understanding. I noticed that you recently wrote a post addressing the same or a similar topic. For now, it’s late and I’ve been up for 23 hours, so I’m not up to reading it now, but I’ll be checking out your post once I’ve gotten some sleep.
Thanks Stephanis, I will be keen to hear your thoughts. BTW – I have thick skin
Oh! I’m so sorry! I didn’t mean to imply that you had been disrespectful or whatever to Rachel at all! Not in the least. I think it’s wonderful what you wrote, here, and they way you presented it. I’m sorry. I don’t always come across well. My apologies.
Laura,
I have trouble reading when people are offended by something I said when no offense was intended; I wasn’t sure if you were, but I prefer to err on the side of caution. No apologies necessary!
This is an excellent post, Stephanie!
I am always rather worried by parents of any disabled children who seem stuck in a permanent bereavement for what might have been, but I am always rather hopeful. With any unexpected event in life, there are some people who take a long time to come to terms with things, when others take things in their stride. And the wonderful thing about children (one of the wonderful things) is that they are changing all the time, and there are always new opportunities for the people around them to learn and grow themselves.
Amoung the wider disabled community, I’ve known so many people who once had a very negative view of themselves as disabled people, who saw their experiences as tragic, themselves as freaks and in some cases, their lives not worth living. And when folk are like that, as well as feeling very sorry for them, you don’t really want them speaking out, in case people think they’re speaking for us all. And yet so many of us were like that for a time, myself included, that I try my best to see them as actvists in the making.
Thank you. The issues of grief and respect definitely relate to all areas of disability, but there is reason to hope. Parents and people with disabilities–all those who are in their lives–do have the opportunity to change grief to acceptance to advocacy; and those of us who have made that transition have the opportunity to help.
It can be hard. Our society seems to focus on the disability as the tragedy; whereas I see that becoming disabled may involve tragedy and the disability as one of the challenges faced after the tragedy. For example, a child getting hit by a car is a tragedy; the child’s loss of the use of her legs is a challenge in the aftermath of the tragedy, as is the trauma of having been hit by a car. While the challenges stemming from the tragedy may last a lifetime, the tragedy is a few moments in time. It gets more complex with illness, and it’s different still with something like autism, where discovering the disability may be traumatic but the disability was always really there. But the person is never the tragedy, and so many fail to see that.
Grief is natural; but so is healing of the spirit.
Wonderful post, powerfully written with good, compassionate arguments. I hear you…and Rachel.
I think you were very lucky with a very insightful Grand parent on board! In our case it was our parents who didn’t get/accept our diagnosis. “Sure in our day we just did….” etc; etc.
So here’s what I think. In ALL things where there our divisions and them/us situations information/awareness is King and the place to start is with the youth. Create awareness in school age children.
I say this because I was at a recent Young Scientist’s Exhibition here in Ireland and there were two projects on Autism by teens. Their findings were interesting. There is more awareness out there but still needs improvements. More awareness amongst girls than boys and more awareness amongst the younger secondary school (High School) kids…and that’s interesting.
This is the 2nd time this morning I’ve mentioned this in blog comments… I really should do a post on it! If/when I do I will certainly link to this, if I may?
xx Jazzy
Jazzy,
I totally agree! Information/awareness is king and it’s easier to raise awareness by providing new information to the younger generation than it is to change the thinking of the older generations. Investing our efforts in teaching children the value of neurologically diverse individuals is a worthwhile and necessary part of advocacy.
I also think it’s important to give the older generations that chance to change, though. Societies tend to be ruled from elder to younger, though that is certainly debatable in some contemporary social structures. But, even as younger generations are dominating certain cultural areas, the tendency is for older generations to dominate organizations–government, business, university, ect. If we don’t reach out to these older generations and exert the pressure necessary to create change, then whole generations will be forced from their potential while the youth rise to power.
I hope we can avoid that, but only time will tell.
And you are most welcome to link to this, or any other post, always!
I am glad I ran across this post as I had read Rachel’s post with great interest. As the parent of a child with autism and someone who may be on the spectrum herself (or is at least closer to it than not), I have had many feelings of grief over the years and think it is a natural reaction to any disappointment in life.
I think the most important thing is what you do in response to the grief. Do you get stuck in it and not allow yourself to see the opportunities and blessing you have, or do you look at where it is coming from and figure out what needs to change in your outlook or the way you do things? And for some people that can take a lot longer than others, for a variety of reasons.
One thing I appreciate about Rachel’s post is that she was specifically talking about community blogs or sites, which are supposed to be inclusive, as opposed to personal blogs which people may be using for their own therapeutic venting purposes.
I don’t have any grand conclusions, but I just wanted to share my thoughts and thank you for taking the time to write about this.
Aspergirl Maybe,
I do understand about the maybe on/maybe not. I’m right there with you. I, too, have had my feelings of grief. And with new obstacles there’s new moments of grief.
But, I agree that your reaction is a key factor, as is your relationship with your child. If your grief over the child you didn’t have negatively impacts your long-term relationship with the child you do have, that’s a problem. If you use it as a stepping stone to take life as it comes, that’s healthy for both you and your child.
I agree that Rachel’s focus on inclusive blogs was an important point.
You are most welcome to share your thoughts here any time you like!
Oh Stephanie-thanks for writing this..I agree. I had read that blog post-and I understood some of where she was coming from-and there were some good points. But I too was a tad bit frustrated. Firstly, because she claimed that she has never seen a parent speak positively(i.e. blogging) anywhere..and I thought-WHAT??!! If we continue with an “Us and Them” mentality-there will never be community. It is ALL of us that make up the world. This was one of the driving forces behind the creation of the autism blogs directory. It is something that both Kim and I discuss on a regular basis.
In my own blogging-autism is a part of it..but it is really the story of my family..all of us. I figure that if someone who is knowledgeable about autism comes along and reads-they will be able to relate…but I also want someone who is not knowledgeable about autism to be able to relate as well..It is one of the reasons I write the way in which I do..
I too prefer stories. Your Grandmother-What a fabulous way of putting things. I am so very glad that she was there at that moment.
Your very welcome, Kathleen! I agree it is frustrating. There is such an extensive autism community, but at the same time it is many communities and they don’t get along. But for those who are, essentially, advocating for the same things, getting along shouldn’t require so much effort.