Some people say that parents like me are dismissive of how difficult it is to parent an Autistic child. They say that we are choosing not to dwell on the negative and that it’s important that the other side be shown. They suggest that by NOT discussing how very challenging it is, we are doing harm, that it is in the stories of horror and devastation that services are gotten. They say that pathologizing autism is necessary because without talking about it as a pathology, funding would be diminished or cut off. Many people assume that those of us who write about the positive aspects, the joys, the triumphs that we experience as parents of Autistic children, we must have “high functioning” children and that we cannot possibly know what it is like to have a child who is “severe”. We are accused of diminishing or dismissing the suffering other parents experience.
When I was fairly new to all of this, not so long ago, I thought nothing of writing about my child’s latest upset in graphic detail. Not so long ago, I wrote about my child, believing she did not and could not understand what was being written, that she would never read my words, that she could not and did not understand what I said to others, what I wrote. I posted photos of her, never once considering whether she wanted such a photo posted on the internet for all to see. It did not occur to me to ask her. Literally, it did not occur to me. These are things I now am aware of. Posts have been deleted, photos have been removed, but had I continued to listen to what I was being told, had I not seen and met non-speaking Autistic children, teenagers and adults who wrote how it felt to be spoken of, written about, and treated as though they weren’t there, I don’t know that I would have thought to stop.
It isn’t that parenting is never challenging, hell, life is challenging, it’s that in talking about parenting it too often sounds like we are blaming our child for our suffering. It’s like when my husband and I fight and I think to myself, if he didn’t do x, y and z, I wouldn’t get so angry and while there may be some truth to that, it also isn’t owning up to my part in the fight. So many people write about parenting but they don’t seem to connect it to how they respond to this situation with their child, is how they respond to stress, not getting what we want, impatience, dealing with upheaval, etc. It seems to me, the less common conversation is the one that talks about personal responsibility and honoring another person, instead of blaming them for what ails us.
In all of this, the Autistic person, whether they are a child, teenager or an adult, are being “treated as though they weren’t there.” This was the thing that changed everything for me. Realizing that there is a person there. Right there. Right here. Right in front of me. And this person has feelings and thoughts and her opinions about herself are affected by what I’m doing and saying about her. She is just like any other child, who would feel tremendously sad and even traumatized knowing that her parent blames her for their pain and upset.
This post is being interrupted by more pressing matters, so I will have to come back to this when I have more time…
Emma's Hope Book 
Yes. This. I was an “oops” kid, and I was not wanted at my birth, and my mother dropped out of university as a result of her pregnancy and was unable to follow through with her dreams, and I was never allowed to forget any of that growing up. I’m so glad you don’t want to do that to your kid.
I have friends who have experienced the same and it has colored every aspect of their lives as adults… 😦
I want both my children to know how much they are loved, valued and treasured.
As it should be.
This is why I have no plan to have kids for the forseeable future: I don’t want kids at this point in my life. Maybe that will change. Maybe it won’t. I know that I would resent having to change what I want to do at this point in life, and I will not risk that I’m too weak to resist the urge to treat a kid I have unwillingly in the same way that I was treated.
So, no kids for me for now.
I was almost forty when I had my first child and over forty when I had my second. It took me a long time to want to have children and then once I did, a long time to find someone I wanted to have them with! Very glad I waited.
I’m glad you’re accepting of it – my parents are both pressuring me to have kids & either don’t get or don’t care that I am simply not in the mental place for it right now.
Two thoughts on this very important topic: (1) As parents of a child on the autism spectrum, you walk a very delicate line and it’s hard to keep the right balance. You naturally want what is best for your child and will chase to the ends of the earth to find something (anything!) that will make their lives – and yours – better. Beware of the message you may be sending – that something is wrong, that this child is causing trouble in the family, that this child needs to be “fixed.” Ariane is so right when she writes about the critical importance of acceptance, while never ceasing to hope for the very best in quality of life for your child. And (2) please keep in mind that, despite what we’ve all been told, these children have feelings just like the rest of us, and in addition seem to take on the feelings of those around them. If you as a parent are angry, frustrated, whatever — it has a very direct effect on your child. Write on, Ariane – we all love what you have to say!
Thank you so much for adding these points, Char. Really appreciate it!
emma and i are doing schoolwork..heard a ding. so i looked. First, l love your interruption, intended or not. hopefully it is only for excellent effect. second, here is an issue to tag onto..i now cringe when i am complimented with, what a great mother,blah, blah, blah…
why…because what is really being said about my daughter? Emma just asked me why i felt i needed to write this now. well, because life can be intense and no one lives in anyone else’s physical or emotional self. so i am working hard to stay in my own. emma is able to type with support, talk and walk around all at the same time. This is a blessing. Emma just smiled and now we will also get back to more important work, macroeconomics. no, i am not kidding. the best part….it’s not my class!
Emma! Macroeconomics! I love reading that. And thank you Paige for your comment and friendship!
Again, I read your post and want to shout, “Yes! Yes! Yes!” I wrote a whole book on how my children (primarily my oldest) transformed me because of their way of being, constantly conscious that the story was not mine alone, but also aware that I could not tell my story without telling their stories. When I finished, I gave the manuscript to my daughter to read before seeking publication, fully willing to not publish if she did not want the story out in that form.
Because our lives are entwined with, influenced by, and related to those of our children, it takes constant vigilance to be respectful to all involved. We also need to be willing to change and delete if we discover we’ve been causing harm or discomfort.
Yes, and “need to be willing to change and delete if we discover we’ve been causing harm or discomfort.” Oh yes, this has happened a great many times! And it’s great because there was a time when I would have given anything for my child to express an opinion. Then I learned that she had many, I just didn’t know how to help her express them!
We are the mirrors in which an upcoming generation re-cognise themselves, their circumstance and their prospect.
It’s then all about what mirrors we can be.
To be a mirror for an autistically presenting and developing child, we have to “back into” what mirroring of the autistic a collective is minded to do, we have to shield the child from the force of that collective mirroring, until they are strong enough to take autistic control of the ball of life themselves.
A human population, our collective of membership, is situated across a diverse and often cruel field of circumstance, and is there subject to a diversity of force difficult to conceptualise.
The field of mirroring of the autistic our collective yields, is then had across that indeterminately complex and varying nexus of situation and circumstance and subjection to force.
“Realizing that there is a person there”: “honoring another person, instead of blaming them for what ails us”: I so much agree.
The mirror, on the autistic, that we are able to configure ourselves to be, must orientate to mediating person (for the child) across our encounter with the autistic.
That configuring involves discounting our own life situation, circumstance and subjection: not yielding to it in our experiencing of the autistic; and instead taking on and working out from the(autistic) situation, (autistic) person and (autistic) potential of the (autistic) child.
That discounting is not then nihilistic, but is rather an extreme position taking. Our collective’s social is a wonderful thing; but as long as it excludes and misrepresents the autistic; then it’s just not yet good enough. In parenting the autistic we take steps beyond any social: to be where the child is; and as person.
At this extreme, an extreme of parenting, we must be content with our capacity to take up that extreme position and to be that mirror, and content to measure everything in the blooming and flourishing of the child.
We are privileged to be so situated and enabled.
If others have to remain more embedded in a social, in their interface with and response to the autistic, we should perhaps set out to understand the situation and circumstance and subjection to forces that sees that their best-shot positioning.
“A human population, our collective of membership, is situated across a diverse and often cruel field of circumstance, and is there subject to a diversity of force difficult to conceptualize.”
Thanks for this, Colin.
It seems a bit like walking a tightrope at times for me as an adult. I never want to deny the aspects of autism that are actually disabling for me but nor can you live any sort of life at all if you yourself feel broken and in need of something impossible.
I do indeed remember words spoken about me, shouted about me, or whispered about me by my family.. I do even now as an educated and according to the tests, brilliant adult, face situations where people think the words they say don’t register of think I cannot decode their allusions. Yes, stress me enough with strangers, bright lights, noise and chaos in general and I may indeed seem to be “not all there:” as they say. So what? Even if I were as I seem which I know not just from my own life but 24 years of looking after “severe” children and adults with various problems when I was mobile enough to do so, is seldom if ever the case so what? I used to get and sometimes still go down that path of outrage that if both are documented my intelligence and my autism and other health issues are documented in the same alerts bit of my chart why did the intelligence always get forgotten when I can no longer look at people or speak much if at all? Then I have to think to myself that this is wrong. I should be respected in any case. Not because the doctor remembers of there really is a smart person in there but simply because he remembers there is a person sitting in front of him. Not an excellent teaching subject but a person.
I played in a concert on Saturday night with a band I stepped in to help. At beer and pizza afterwards (how normal that seemed ! ) work came up and for me that includes the issue of the potential of a major move and why that would be hard for me. I had to say I had autism after having said more generally to why that I didn’t cope with change well. While no one was rude I did see a few of them studying me afterwards when they thought I was looking elsewhere. It’s not something I feel I have to be so ashamed of that when that is the answer to why I can’t just do something instantly that involves change major or minor, good or bad that I will not say it. There was a time when shame would have left me searching for a true but different answer for so long people would assume the answer was so horrific they should back off but if that is how I discuss myself not how I am discussed am I not guilty of the same sorts of thing that I can look backward in time to family and schoolteachers, and at any point since to countless people?
I have autism. It doesn’t make me like you but according to all tests I am still human. I am no less deserving of basic courtesy whatever shape I happen to be in that day. Able to play with strangers or not able to speak. I don’t want the reason why some people do remember to treat me with some courtesy to be that they remember I am in fact so much smarter than them that it is scary because that should not have to be the case for anyone ever.
That it is a disability is evident enough even if it at the same time grants me some of my ability. Much saline pours down my cheeks with frustration at that very thing. We don’t need to treat the good things about me that others might do well to take on as pathology just because my differences have a label do we?
I remember being at a conference and the day before there was a special day long seminar. I sat as gales of laughter roared through what was probably except for me and entirely NT audience about things which seemed positive. I got upset. My friend tried to explain what was funny and to this day I don’t understand why what was being described is a problem. They were talking about the tendency for autistic people on seeing distress to do something concrete to fix things rather than saying comforting words. Well yes. So? Isn’t there even a saying to encourage that? “Actions speak louder than words.”
There are aspects of my autism I consider disabling and not just as a social construct as the other extreme would have it. There are other parts I would not be without including many things that I wish more people would give some thought to what it says about society that they think they need fixing. Why do we teach autistic kids to lie in social skills class for one? Were I NT and I heard that I would think holy beep that’s a terrible commentary on society that it is considered a deficit when someone doesn’t do it or doesn’t do it well enough.
Also, it is one thing to talk about yourself in whatever way you like, but it’s when we discuss someone else that things get problematic. I have little problem discussing many personal things, but I am writing the parts I choose and am not having them written about and for me. I would definitely not like to have my mother write about how horrible it was to have me for a child, even if she did run it by me and ask for permission to publish it. It would make me feel very sad to know I’d caused my mother such tremendous pain and then to have her publicly state this would be all the more horrifying.
I guess for me the public statement would not have made it worse. The horrible knowledge you are not at all what your mother wanted is something so painful that I cannot imagine anything amplifying that including her making published statements to the effect.
The love of your mother is something you encounter as taken for granted but for me until I was well into my 30 it seemed like something I could earn back by being more this or less that… Even though I made a peace with it to some degree thinking about all the years chasing being other than I could be to earn something that should be mine unconditionally hurts.
I have a close friend who is in her 70’s and who has never gotten over the fact that her mother did not approve of her. She told me she believed it was not something one ever recovers from. I believe her.
Thank you. I’m undiagnosed raising a diagnosed son whi is the very beat of ny heart. I hope beyond hope he knows how much I love & want him. I haven’t gotten past my mother’s feelings of me. I dont want him burdened by that. I don’t mind when he decides he can handle the stimulation to do something or go somewhere. I’m usually relieved as I cannot function in loud places with crowds. We are a team that is too strong to beat unless we are both overwhelmed. At that point people look at us like we are monsters as we shout & scream our way back to sanity. I’m scarey smart, he is very smart. He can’t stand silence, I seek it when needed. We are very different. I am fighting for his rights, proper medical treatment etc. I am now beyond hopeful that I haven’t made him feel like less or not enough or any of those nasty feelings. There’s nothing in this universe worth more to me than my son. I try to do all the not so complimentary things while he is at school. I’m often amazed at how many professionals will stillcall & try to go through tough stuff when he Iis home. He dodoesn’t need to hear his diagnostics over & over. He is not a broken vase needing fixed. He is a fabulous musician who saves dying puppies (she’s 3yrsold now) and has autism. P.S. I thoroughly enjoy his sense of style as it is his own uninfluenced by peer pressure.
You are awesome. You have said so well what I have so often wished I could say. And it’s nice to know I’m not the only one like me. I totally get the scary smart thing. I got that treatment my whole life. But our value as human beings totally trumps any economic value we might have; scary smart or dumb as a rock is no reason to rank anyone before or after anyone else in that respect. Thank you!
⇧ What Aaron said…
You know what? After so many years of thinking “Oh my goodness, what a burden to have a child with ____”, your blog helps me know that attitude is wrong. And I disagree with anyone who says you shine it on. We too often see the “bad” side. And then creates pity, not hope.
So glad. Thank you for this.
Beautifully said. 🙂
😀
I enjoy your posts and I get a lot from them. They are thought provoking. Still, I think of my child’s condition as a pathology. I don’t think this is equivalent to ‘blame’ or a lack of respect. I think you can respect your child as you would any child and be sensitive to their needs, but still think of their condition as a pathology. There are adults with autism that think of their condition as a pathology. I don’t think they hate themselves, but they feel they have a medical condition that is preventing them from living as they wish.
I do think of my autism as disabling. It does to some degree prevent me from living as I might wish but unlike some pathology it doesn’t stand apart from who I am. Because autism is both pervasive and seated in the brain it becomes difficult to say where that “pathology” end and I begin. After 45 years of walking this earth viewing it from a non neurologically typical perspective it has shaped the person I am, informed the opinions I have.
When I had an extra node on my heart that killed me a few times they could burn it away with no impact other than not wondering when I would next have to be rushed to hospital. Autism is not at all like that and I have yet to meet an autistic child (or adult) who didn’t pick up more of what is being said and done and how people feel about them than given credit for.
I don’t hate myself. I don’t hate my autism all of the time or even most of the time. It’s not like that pesky extra node so there is no removing it and magically being the person I might have been in some weird universe where I was born with everything else the same but no autism (doubt that is possible) . I struggle with it. I get angry at it. I cry. Yet other times when I am say working away at my job and realize I have been reading a language I didn’t consider part of my skill set without realizing it I wonder would that be there without the autism?
I think were I a parent of an autistic kid I would be careful how I framed their condition to myself. Several ties in my life a random autistic kid has attached themselves to me out of nowhere and so I think they sense things (as several of them were pre or non-verbal) like our similarity I would guess they could also sense the notion of pathology.
Much like reconciling faith and science one can acknowledge the challenges of autism without framing it entirely in a way that could do damage. Yes it is disabling by definition but with proper support amazing things can occur.
Hi TLS. There are a few adults with autism who identify as having a pathology, but I don’t think anywhere near the majority of us identify this way, and more importantly, we do not know how your child would thrive the most in viewing him- or herself. Please consider reading my post here http://tinygracenotes.blogspot.com/2012/10/labels-also-intense-teaching-is-realer.html in which I describe a decision process modeled after Pascal’s wager to help frame concepts about how we talk about people who might not talk back. Remember that for the way we Autistics are made neurologically, there is no cure, so to view ourselves in the metaphor of “sickness” may lead to hopelessness. Also, as an aside, I think it is disrespectful to people who are actually sick. I have friends who are actually sick for real, and they suffer in ways it would be ridiculous for me to try to appropriate. But that is an entirely different line of thought. Thanks for listening.
TLS – For the longest time I thought of autism as pathology as well. And I agree, I did not blame my child. But I also know that how I thought of her was something she incorporated into her self image. Recently she wrote words to that affect and I felt awful that what I once believed made her feel negatively about herself. If I could have done things differently and much sooner, I would.
The problem with that is that autism is part of who we are, not just some sort of superficial change. You can’t take the autism out of the person without fundamentally changing who that person is. That is why it is disrespectful. When you call autism a pathology, you are saying the pathology is who that person is. You are implying that their personality itself, not just their body, is somehow broken. Imagine how you would feel if someone told you that who you are is screwed up.
I don’t want to be “cured” because I don’t want to become someone I am not. I like who I am, the way I am. Sometimes it is frustrating or painful, but never to the point that I would sacrifice who I am to get relief. Most of the pain and frustration comes from other people’s unreasonable expectations and demands of me anyway. I would say it is not a “medical condition” that is preventing me from living how I wish, but the lack of understanding of my differences in those around me that prevents me from doing so.
If the tables were turned and the world were populated with mostly autistics rather than neurotypicals, I don’t believe I would have most of the problems I have living in the world as it truly is. I think instead it would be the handful of neurotypicals trying to make their way in that world who would have the problems. Those adults who think their condition is a pathology have likely just bought into the clinical terminology, which consistently and pervasively treats it as such.
Well, most of the adults with autism I’ve interacted with who think of it as a pathology, actually don’t like or respect themselves very much.
For me it is natural. Just as I am not going to post on the Internet about the latest annoyance from my husband and hope that he won’t do the same (he won’t) just as I don’t complain about things that might embarrass my older children or post pictures of the contents of my younger’s diapers (people do that, really), I won’t ever post anything about Sophie that might cause her hurt or shame. She can read my blog, all of it. While there were moments of hurt or worry, especially in the beginning, there is nothing there that says she is the cause of those feelings- cause she isn’t.
I often write about the popular image of the “autism parent” portrayed in the media- harried, struggling, overwhelmed. If they say they are happy they are accused of writing about “rainbows and unicorns” (whatever that means, I really have no idea). And the newly diagnosed parents look at those stories, see the despair of their further-along-the-journey counterparts and imagine they are seeing their own future. And that causes them to become depressed, which fulfills their own prophecy of “apparently our lives will suck now”. So i think blogs like yours are crucial in changing perceptions, and some parents DO find them. Sadly, the majority does seem to get sucked into the “poor us” genre.
It is those parents with newly diagnosed children that worry me the most. The level of beyond horrible descriptions and predictions of our children is enough to terrify even the most level headed.
The sad thing since that is what makes the funds that pay bloated salaries to trendy charities (or to be honest charity) this is all getting worse. I thought the image of autism couldn’t get worse in this day and age from when we robots incapable of love essentially back in the day sigh but it is. How does the counter image get popular enough that a facebook page supporting an attempted murderer of her child doesn’t have more likes than yours?
I see bad science and eugenic like thinking thrive and reap in money despite the bad science and I worry a lot. Not for myself so much but every child who is at the mercy of the newly stunned parent. I used to talk to them in masses on IRC and I don’t judge them for feeling stunned, overwhelmed and even reaching the conclusion nearly all around us that autism is a terrible affliction.
The thing is even if you have an offspring that has autism with actual mental retardation instead of the speculated about variety, and a host of other problems thrown in you have an offspring. There is still life in need of nurturing and you will still get the best results by expecting more than what the experts may be telling you. Enjoy what it is you have. I have yet to meet a child, any child however severely disabled with things that to me seem a lot more horrifying than autism, that doesn’t have things that give them some pleasure. Seize that, Work with that spark of who your kid is and enjoy it.
I have a friend who kept his sister out of an institution for fear of what might happen to her in one. She is many of the things that people who demonize autism is but you know what else shines through that? She is happy and safe. If that’s as far as things can go that’s still quite the journey.
Gareeth this is a really powerful and moving comment. Thank you for your eloquence.
Precisely what Sophie says about the “feedback loop” of parents of newly- (or even not-so-newly-) diagnosed kids reading blog after blog, e-list post after e-list post about despair and/or desperate seeking for a cure in the approach-du-jour. I was in that loop; I am thankful that I managed to break free — and my daughter is unquestionably better off for it. And certainly your contributions to the discussion, Ariane, made that break possible and have reinforced its wisdom in a positive feedback loop. Thank you, yet again!
Thanks so much. It’s good to be out of that loop and so glad to have found people like you!
I have been thinking about this a little more lately. I’m a self admitted Facebook Junkie, and tend to post a lot about my kids. For me, this is a two fold issue. My kids are 3 and 4 now, so at some point it is not appropriate to be posting things they did or pictures of them on FB just because they are cute or silly. It might be embarrassing for them in the future (or now if someone brings it up). Then there is the autism issue. I totally agree with you about not complaining and whining about how hard autism is. Because one day Nathan will read what I wrote, and I would never want him to think that he is a hard kid. I guess for me it just comes down to being respectful (of both my kids) and wording things in a way that is both honest (when I need to be) but not condescending or demeaning toward them.
And who doesn’t love an adorable baby picture? Or a photo of toddlers doing whatever hilarious thing they do?
It’s tricky, I have one child who’s mortified by any mention of him, forget photographs, and another who is happy to choose which photograph to post.
I don’t believe that expressing the sunny side of having any child is wrong. It’s that point of balance that is needed. No craved. It’s craved by the parents and the child. But this is the thing. It’s that sunny side of parenting a child on the spectrum that should be what drives you. Moves you. Leads you. It’s seeing the happy moments that pushes a parent for more. This is natural. As a parent you would naturally want to see and feel happiness and delight. It’s when we see this in our lives that makes the difference. It makes a difference in the child. If we are truly talking about services and therapy. I think that’s what is the thing people are worried about. Then let’s see it another way. To never acknowledge that a child is having success would to me decrese services. Imagine paying for a service that was pointless, and had no success. This is what we show people when we say nothing is working or making our children have a productive life. Why pay then. Why not cancel all support if it’s so helpless. Why not just throw our hands up and stop trying to make life better for a family. I personally try my best to paint a full picture for professionals. I want them to see what is working for us. What their work and mine has achieved. I want my child’s success to be what drives them. I also show them our areas of weakness. The balance. By presenting as many strengths as weaknesses I’m able to see balance. But my child feels balanced as well. Every time they grow in a moment I point out how they have achieved. Even if it was small. If we celebrate the little stuff the big stuff comes faster I find. If professionals are able to celebrate with us I find they try harder. If the people who fund programs hear of the great things they have done and the success they have brought to a child’s life they get motivated. Their is nothing more motivating then success and seeing joy in a family. Seeing doom and gloom brings on a feeling of pointless effort. Just my silly point of view. Maybe not what others think or what you were getting at but that’s what I take from the topic. So moms why not tell people about how something good is going for you and your kids. How the work of others has made a difference. How your kid thrives because of your own efforts to raise them. Should you say their needs as well. Yes. But don’t forget to say what’s going good. Or what joy you do have. Motivate with positivity.
“If the people who fund programs hear of the great things they have done and the success they have brought to a child’s life they get motivated. Their is nothing more motivating then success and seeing joy in a family. Seeing doom and gloom brings on a feeling of pointless effort.” Yes, really agree with you!
I can usually carry on a conversation, so on the rare occasions where I can’t, people usually do think to ask me how I’m thinking and feeling. The idea that they would ignore this basic step of human rights just because I might not be in the habit of speaking is terrifying, truly horrifying, and I’ve sworn to myself to NEVER do it to anyone else, nonverbal or not.
That said, G-d bless you, Ariane. I literally once thought there wasn’t a single autism parent besides my own mother who didn’t pathologize us, who didn’t see us as burdens and invisible not-people, there to be discussed but never asked our opinions. Reading your posts gives me hope.
CC – thank you for saying this. I think there are more and more of us joining your mom!
Thank you, Ariane, for another thought-provoking post. I am enjoying following your blog. The issue you discuss today is one which is exercising me at the moment. I am new to blogging though have written as a poet about life with my autistic son. Keeping the blog is raising some challenging ethical questions for me and I find myself reviewing and adjusting my practice as I go. I think the interactive nature of blogging encourages this and I’m grateful to the dialogue for that. I’m sure I have and will make mistakes as I find my way and it was reassuring to read your post and hear that you have revised some of your positions too. Blogging feels more public than poetry, and the audiences tend to be larger – this ought not to demand a different ethical approach but in practice I think it can. Keeping the blog is potentially making me more rigorous about thinking ethics through and hopefully I’ll take that back to my poetry too. Liz
I have deleted a great many posts in recent times. It’s a good thing, though. I used to never think about it. Very few people read my blog during those early years, and looking back I’m really grateful for that now!
I understand just where you are coming from. I am so glad you addressed the issues that other parents have with “positive” autism blogs. When I started writing, it was before my son was born. I wanted to put my life in order and to share with my son our life. My grandmother kept journals and I loved reading about her life. My parents, aid photographers have ample documentation of my growing up. I seemed natural to pick up the torch for Tyoma.
I write positive for him. Life is hard, people! Parenting is hard, too, whether your child is on the spectrum or not. Parents model life for their children and I can’t think of a single child who has benefitted from negative attitudes toward them. Self esteem is crippled, functioning is damaged. Parents can stand up to schools without villainizing their child or telling household horror stories. In fact, firmness and compassion go further in making cases for accommodations.
The trend toward including the opinions of autistic adults is a vital one. When we had school issues, they listened to me and respected me and the results for T have been amazing. I thank you again and again for being such a marvelous ally. You seem to pluck the very thoughts from my head and heart and publish them with eloquence. ❤
Lori
Lori, thank you so much. I eagerly await a new post from you and love your wonderful artwork that accompanies each post!
The positive posts are SO important, especially for new parents… And yes, respect of privacy online or with the children present..can’t be said enough. I see parents using their kids pictures daily, as mere illustrations of THEIR life account, their way of seeing and experiencing things… It’s the child’s life too!
I’ve posted about this before, but the post that changed my life, was Julia Bascom’s The Obsessive Joy of Autism. It rocked my world because it was the first time I’d read anything even remotely positive about autism and being Autistic. It shifted everything. And that post is such a great example of hitting the perfect balance. It wasn’t all roses and fabulousness, but it wasn’t all about the horrors either and it gave me such wonderful hope for my child. I will forever be grateful to Julia for her blog and that post.
As someone with a child who may have hfa ( still in the dx process) i am finding myself thinking of it as a pathology already and i find myself hovering over her “symptoms” with a magnifying glass wondering if they will be placed “on the spectrum”. It is a horrible feeling and i want to do better. Reading your blog is helping me tremendously to try and view this process differently. I already feel like i have made her more self conscious 😦 trying my best to change my viewpoint and raise her to feel proud of every aspect of herself.
Joslyn, you are already way ahead of the game! The fact that you see yourself doing this and realize you have alternatives is HUGE! The whole diagnosing process is all about the medical model and illuminating all that is “wrong”. This is something I’d really, really like to see change. A diagnosis can still be made without it being a brutal and demoralizing.
Yep.
It really isn’t fair all the negative response talking about happy moments as/with an autistic person can sometimes garner. Maybe it’s sort of like J.R.R. Tolkien said about how the least pleasant things to live through are the best to read about… people want conflict in their stories. I, however, love to read about your happiness. I wish Emma went to my school. She’s great!
Aw… thank you so much!
Aaron (above) — I agree that if the tables were turned and most of the people in the world were on the autism spectrum, we NT’s would have a major struggle trying to fit in. Now, wouldn’t that be interesting!?! Who knows – that day may come!
I think about this often, actually. What it would be like if the majority are in the minority… I do not think we would fair so well.
This is why your blog and others like it are so very important. The media does paint a very dismal picture and sympathizes with psycho’s who harm their children. So when your child is is labeled with autism and you turn to the internet it can be very discouraging. Fortunately there are people like you who choose to emphasize the joys children bring. Thank you, thank you.
Thanks Kari. It’s very kind of you to say this. I appreciate it.
People who need 24/7 supervision in order to survive safely, even if they are super intelligent, and especially if they are super intelligent, need to understand that the care giver is going to be overwhelmed sometimes. It doesn’t mean that your mom/caregiver doesn’t love you or care about your feelings, just because you drive her/him nuts sometimes. Cut people some slack! I love my autistic daughter. She is adopted and we chose her and her disability. She was seven years old when she joined our family. It was very clear that she had autism. Since she was a child who had been severely neglected in her birth family, and she was institutionalized for four years when the state removed her from her family of origin, we thought having a real family life would help her, and we were right. It helped a lot. Still, she is severely autistic and even though she is almost forty, our job as parents and caregivers remains very intense. I wouldn’t change my job as her mother for anything in the world. She is a blessing and I believe I am a better person for the things she has taught me, and for her unique perspective on the world. Still, do I like having to live in a house where all the exits have keyed deadbolts, because she likes to run cross the street and visit other people’s bathrooms? No. And is it OK for her to know I don’t like it? Yes. Is is OK for her to know that I don’t like having to pay for the tons of fingernail clippers she has shop lifted? Yes. Is it OK for me to have a sense of humor about all this if it helps me keep my sanity and keep on being there for her? Yes. Living with autism is an adventure. Sometimes it is painful and sad, sometimes it’s really funny, and sometimes it is just wonderful to be a part of a miracle in progress. I think my feelings about autism are as educational for my daughter as her unique situation is educational for me. We are here to teach and learn from each other. We are going to hurt each other ‘s feelings sometimes. That’s life. if it happens, say “sorry” and move on. Hopefully our family love is stronger than the fact that we irritate each other sometimes.
Loved this article.
‘It seems to me, the less common conversation is the one that talks about personal responsibility and honoring another person, instead of blaming them for what ails us.’
So much truth in that.
Aw… thanks so much!
” We are accused of diminishing or dismissing the suffering other parents experience.”
I don’t understand how the idea that children with Autism cause suffering came to be the norm. Was it too hard to see the joy in a child that might be different from his peers? Too difficult to think someone with Autism can be just the way they are and still have a rich, full, and amazing life?
So many parents seem to champion their own suffering – through Twitter and Facebook and talks with their kids sitting next to them. They talk about the terrible life their child has caused them, how they suffer with therapists in their home, schedules of this and that, and the “knowledge” that their child will “never be like the other kids.” On top of all that, so many therapists only continue to support the myth – that the parent is suffering, that they need relief, and that it is all the child’s fault. If only the child weren’t Autistic, if only they were “normal.” Then everything would be ok. And if that weren’t enough, Autism Speaks, and organizations like it only continue to promote people with Autism, and their families, as victims of a terrible affliction. There is no talk of celebration, or acceptance, or joy. Only cures, therapy, and coping.
It is sad Ariane, that voices like yours are not the norm. They should be!!
“Was it too hard to see the joy in a child that might be different from his peers? Too difficult to think someone with Autism can be just the way they are and still have a rich, full, and amazing life?”
Apparently, yes. A lot of parents are really, really afraid of their kids not being normal.
Thank you for your kind words Melanie.
When my daughter was first diagnosed we were told a great many things that frightened us and somethings that were very encouraging, but when those things did not come to pass, both the good and the bad, we became even more frightened. It became clear no one actually knew what they were talking about. Add to that our expectations, no one talked with us about any “positive” aspects of the diagnosis, nor did anyone suggest anything that sounded remotely “good”. It was framed in the “disease” model with people alluding to cancer as an appropriate analogy. As I have family who have both died and survived cancer, this was particularly awful as I took it literally and began to see any and all “treatments” no matter how risky as potential life savers. Now add to this the financial toll of all those unverified “treatments”, the appointments, dealing with schools etc and a parent who has expectations that something she does will “save her child’s life”, and that’s a pretty great recipe for discontent, depression and upset. None of it is because of a child’s neurology, but is very much the result of the commonly held ideas and views of autism and what it means to be autistic. (Thinking this should be another post…)
So yeah, there are things that really do need to be addressed and changed because the stress of parenting is massively exacerbated by society’s use of the medical model. It isn’t that a child who has all kinds of medical issues and co-occurring diagnoses will not be cause for concern, it is that to add to these concerns – oh-and-by-the-way, autism-is-an-epidemic-that-is-analogous-to-cancer-try-anything-and-everything-to-erradicate-it is increasing everyone’s pain and suffering, including our children’s.
I completely agree with you. Personally I think the best help we can give is one on one support to each other. I offer to babysit autistic kids. I do it for free. Other people have done it for me as well. The autism community needs to be encouraging and supportive of both the children and their families. Nurturing marriage relationships is very important for the long term security of the children. My husband and I have been married 42 years. We go on a date as a couple every week, and we encourage our friends to do the same. We enable the marriages and families of our friends whenever we can. The most effective support in the world of autism, and probably in the world in general, is one to one and hands on.
Thank you for respecting your daughter and acknowledging that she is a person with thoughts and feelings.
Yes it’s wonderful to respect and acknowledge our children no matter what their situation. It is also important to recognize that everyone has personal strengths and weaknesses. I take my daughter’s autism in stride. It’s just part of our life. We have learned to accommodate and thrive. Still, I do have friends with autistic children who are suffering from the fact that their child has autism. Some of the kids are bigger than their moms and they have tantrums and the moms and dads can’t handle it. They cry because they had to put their beloved child in a group home, and they cry because when he comes home for visits, they still can’t find happy ways to interact. Just because we are strong and accepting, who are we to judge another person’s feelings or coping skills? Just as autistic people can have very high anxiety, parents of autistic children can have very high anxiety too. It could just be the way the family is wired. We who have had lots of happy times, don’t truly understand parents who have tough times every day trying to cope. A lot of these parents feel like failures because they can’t “reach” their child. Usually They don’t blame their child they blame themselves and they think they are always “not getting it right.” If you meet a parent like this, be kind, listen, and offer to babysit.
My daughter does a social skills group once a week at a local autism center. I find that sometimes I have a difficult time relating to the other moms because I know that my daughter is what she is and does what she does, good and bad, because she is genetically like me and my husband. She is 100% ours. She has problems coping emotionally and socially, but she is by no means the alien in our house, and I feel as if some of the other parents see their ASD kids that way. Also, frankly, I am *glad* she’s my only child. Apart from the practical fact that we just don’t have the resources for more than one, I don’t particularly *want* to be comparing her to another, “normal/better” child all the time. She is my experience of mothering, for better or worse, and I am content with that.
We have 8 adopted kids. My experience is that every child is an individual. No one child is better than any other, only different in some ways, and different is good. When we had one child, I wondered how spreading out the love would work. Actually its like lighting candles. Spreading the love around makes more love, and the first love is not diminished.
That’s pretty nifty, Marie. It sounds like you’re making it work at your house. 🙂
” it is in the stories of horror and devastation that services are gotten. ”
I disagree. The stories of horror and devastation get people talking and sharing and resharing links on Facebook, but not much else. Services are achieved by people who are, as the saying goes, putting in the sweat: not accepting “your child is fine” from a doctor who is rushed and doesn’t want to really evaluate the child’s case; gathering other parents whose insurance carriers don’t want to cover services. People can talk about the awful parts all they want but that is not what brings about change. Actually working for – not talking about – change is what makes change happen.
I really can’t relate to the people who want to get all maudlin about things. I only find myself thinking, “Okay, I get it. We have a situation, so *how are we going to solve it*?”
I also think talking about possibilities is more important than talking about suffering for getting services. Which is more likely to motivate someone to teach a non-speaking autistic kid to type – knowing how bad it is when a child can’t communicate, or knowing that autistic kids can often learn to type when they can’t speak? I know that the parents of AAC users I’ve encountered, when they talk about their inspiration to try AAC, they often talk more about success stories and never about doom and gloom stories.
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