wondering

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Journalists camped outside of St Mary’s Hospital in London

For weeks, the eyes of the world have been on Great Britain. We all, even those of us for whom the royals are a mystery, waited with bated breath for the Duchess to deliver an heir to the throne.

The royal family is undeniably interesting, but Kate and William are captivating. They are modern. They are real. They are open and seemingly accessible. They are poised and graceful, generous and compassionate. They smile. A lot. They are as down to earth as anyone living in that bizarre circumstance could possibly be.

So we watched. And waited. And waited some more. Every online news outlet had an entire section of their website dedicated to the Royal Baby Watch.

Finally, however many days late, the baby arrived. I’m fairly certain that one could successfully argue that no other birth has been more widely anticipated nor more closely watched, thanks to our twenty-four hour news cycle and its delivery to every device in our home. Even the one in our hand.

Throughout the process, I thought of Kate. I empathized with her. I imagined what it would have been like when I was expecting my first child to have had reporters staked out outside the hospital, to have had my every move scrutinized. I thought of how hard it had been with none of that. And how suffocated I would have felt by any part of it. I didn’t envy her, but I admired her. While it might be borne of a false sense of intimacy, I trust her to know what’s important and what’s not. To decide what tradition dictates that she has to do and what her Mama (Mummy) gut tells her that she can do her own way.

I have an autistic daughter. When she was born, I had no idea that was the case. Because of that, I have a tendency to look at infants now and wonder what the future holds for them in a very different way than I would have before. I wonder what their personalities might look like, their temperaments, how their unique constellations of challenge and talent might affect their experience of the world. It’s natural, I think, to wonder.

So when the royal baby was born, I wondered. And I did so aloud, because that’s what I do here. But this wondering came with far more layers than usual. Because the world was watching. And will continue to be as the baby grows. And, consciously or not, we will be, in some way or ways, emulating Kate. What would happen, I wondered, how would the world change for people with autism, if the infant prince turned out to be among their ranks?

442 of you ‘liked’ the question, which I assume means that you joined me in the philosophical exercise of asking it. 155 readers had something to say about it. The vast majority of those said, “I had the same thought!” but many others condemned me for voicing it. How dare I wish autism upon the prince, they said.

My reaction to the comments was as layered as my question had been. First and foremost, I was confused by the fact that wondering had been taken to mean wishing or hoping. It didn’t. It doesn’t. It means what it says – wondering. I wondered what the world would be like if this baby, with all the eyes of the world on him, were autistic. Period.

But .. I had to ask .. why would it be so awful if I had? Wished it on him, that is.

Now, I’m going to qualify this. I think that being autistic and living the life that this particular child will live would be extraordinarily (in both the literal and figurative senses of the word) challenging. As I said in response to a commenter who mentioned this, I can only imagine how difficult that life would be for me, no less for Brooke. Big events are hard for her, crowds are painful, keeping still is a Herculean challenge. That life would be harder than most for anyone, but it would be nearly impossible for her to navigate comfortably.

Nonetheless, if their child were to have the kind of sensory challenges that Brooke has, or a similar need for structure and consistency, I would trust Kate and William to find ways to creatively accommodate him.

I think their entry into this community would do the world at large a lot of good. I think their grace and compassion and realness would serve them and their child well. I would envision them educating people en masse. This is what our child needs, they might say. This is how he can succeed. This is what ALL people need, they would show the world by extension. This is how we can ALL succeed TOGETHER.

I know that my vision might sound Pollyannic. I know that royals are infamous for hiding disability. But I have faith that that would be one of the traditions that would give way to Kate’s Mummy gut, that she would eschew in the name of dignity, of humanity, of progress.

But the crux of this, the real reason that I felt the need to revisit it, is that so many of you “accused” me of wishing autism upon this child. And while I wasn’t (see above if you need the refresher), I have to wonder why the very idea is framed as an accusation. What does it say about us when we think that wondering if a child might be autistic is offensive?

When we say, “I wouldn’t wish this on my worst enemy” as one commenter did, what are we really saying? Are we truly comfortable painting autism, in any and all of its myriad forms, as a scourge that we wouldn’t wish on our worst enemies? I am not. And I shudder to think how reading that must feel to the autistic people whom I am so grateful to have as part of the Diary community.

To the parents in the crowd, I beseech you to remember that we are joined here by autistic friends. I urge you to keep them in mind when you choose your words. I urge you to remember that they are ALWAYS with us because we are all in this world together, the adults along with our children, who are watching, taking their cues about how they should feel about this integral part of who they are – about themselves – from us.

So yes, I wondered aloud about how different our world might be were the tiny prince one of ours. I didn’t wish. I didn’t hope. I wondered. But either way, I will continue to work for a world in which none of those things could ever be construed as offensive.

46 thoughts on “wondering

  1. I get what you are saying, both the wondering, and wishing…I wonder every. day. what my son would be like without PWS and Autism. I love him every. day. for the little person who he is becoming, but could it be better for him. YES!

  2. This makes complete sense. And, I told my husband last night that I thought you were going to ask this very question in today’s post. I feel like I should win some sort of award. 🙂

  3. Like it or not autism is a disability and makes life much more difficult for both the person who has it and their family. While I love my child more than anything and think he has brought out the best in all of us and those who are friends of our family I wouldn’t hope that another child would have it. I know you say that was not your intention but it felt a bit like it was teetering on that line. We are allowed to all have our opinions. It feels like you are moving into the area that you can say what you want but others aren’t allowed to have differing opinions without being scolded on here. If you are putting your every thought out there people will have different opinions and people will answer with inappropriate responses (I agree that many of the people who wrote negatively were inappropriate) But you proposed a question in the form of “am I wrong?”. The way I was raised, that would be an inappropriate question to wonder aloud. So I answered you that way.

    • And the way I was raised, sharing opinions and continuing healthy and respectful debate was prized. I didn’t scold anyone. I expanded my thoughts in order to delve into the meat of what, for me, was the crux if the debate. As I’ve often said, I believe that doing so (all of us doing so) serves us well. I also think that asking people to be respectful of the entirety of the community here, especially those who we are working with and for, is my responsibility and one that I take to heart.

      And yes, autism is a disability. But not one that comes without joy. As I wrote on FB and copied above,

      All, no, we wouldn’t want to wish struggles on anyone. But what about the unmitigated joy? What about the glorious lack of inhibition? What about the different perspective? What about the extraordinary enjoyment that our kids derive from the things they love with enviable intensity? What about the out of the box thinking that can change the world? What about those things? If one were to wish autism on anyone, wouldn’t one be wishing those things too???

  4. Comments from FB

    Comment: to me it is a blessing that only those of us who are strong enough to handle can receive. I truthfully believe this.. because my son has changed me and how i look at the world today

    Comment: Funny, I wondered the same thing 🙂

    Comment: I actually thought about your post this morning and then thought exactly the same thing. Why is it so bad anyway? What is so wrong about autistic children that they shouldnt be wished upon anyone? ! Thanks for verbalising things that we all think about x

    Comment: I get it. Look at what the Kennedy family did for people with downs syndrome. Until someone in power is personally touched by autism, it will continue to be overlooked.

    Comment: Probably because even people who have first hand experience with a family member/child with Autism say they wouldn’t change a thing about their child… but at the same time secretly would not wish it on anyone. Its a conundrum… Don’t change my child… but I certainly don’t want you to have to experience it daily.

    Comment: This, Jess. For all the challenges my girl faces, for the struggles– of course I never wished those for her. But I can’t wish for her to be other than she is, either. She is autistic, now and forever– and I love her right where she is. I’ll never stop trying to support her and find ways to make it easier for her to navigate the world … but autism hasn’t made her world (or mine) awful.

    Comment: We can love and accept our children for who they are but still want to improve their lives and in some cases even recover them. However this is hard, much harder than raising a “typical” child and I for one, wouldn’t wish it on anyone! That in no way shape or form dictates into not loving and finding amazing blessings in my child!

    Comment: I love my son just the way he is and believe this special child belongs with me but I would never wish for any child to struggle the way our children do and this child that was born today will have a hard enough live even though he will have the world at his disposal ‘

    Comment: I wouldn’t change my daughter’s autism, just her anxiety and struggle that come with her sensory processing. Take away the autism, take away her personality…

    Comment: I didn’t take wondering as wishing but I think the reason that wishing autism on someone is construed as bad is because no one wants to see a child- any child’s- life be more difficult. And a child with autism does have a more difficult and challenging path. Not because autism is bad but just because it’s really really hard.

    Comment: For me the distinction is wondering in your head and saying it out loud. I think it’s a big difference.

    Comment: For us, our child is a gift. The autism, not so much.

    Comment: This is a wonderful post Jess. In my particular case, I look at my son and think: ‘Only amazing parents deserve a child like him’. My son has his challenges, but he also has his special gifts. The experience of raising him is making me a better and stronger person.

    Comment: My daughter certainly has her challenges but she also has joy. Joy I don’t see in the NT kids I see around. So…would I “wish” that on someone? Yes, I think she’s blessed.

    Comment: I wondered the same thing when Kate was hospitalized with hyperemesis gravidarum. I suffered from it as well during my pregnancy and have sometimes considered that the medicine I took contributed to DD2’s autism. On a side note I’m sure you’ve read about Prince John who was possibly autistic and hidden away from the public, but in this age of camera phones and tabloids that’s impossible to do.

    Comment: I actually never had that thought pop into my head. I guess because I wouldn’t think it would change anything. Either A) they would keep it a secret or B) they would do whatever it takes for their child but it would be unrealistic for the average parent.

    Comment: I didn’t have a bad reaction today, but today I do in response to your question of “would it have been so awful to wish it in them?” yES it would! Do you wish the stress, the anxiety, the hopeless feeling you have at times, the extra worry, the exhaustion, the fatigue, and all the extra research to figure out how to raise an autistic child. Yes, that would be wrong to wish on someone. I now will discontinue following your page with that question. I’m so filled with rage right now, I’m almost sick to my stomach. I have lost ALL respect for you. Yesterday I didn’t get it, but wasn’t mad. Today I’m off the charts furious and sickened.

    Comment: Perhaps if someone in this position had a child with special needs whether autism or md or mito it could be the change in government we need to change things to get regular families additional help, programs, funding etc.

    Comment: I said this EXACT same thing to my BFF last night – as both of our firstborn sons are autistic…my mind went there.

    Comment: Your blog post today, as a follow-up to yesterday’s fb post, was perfect. Thanks for putting my thoughts into words! 😉

    Comment: Reading some of the comments below I can also see that some people totally missed the point on the question. The question is about aimed around “what is wrong with wondering how things would change on the world wide persective on autism if the ultimate public royal family had an autistic child” . Jess is not asking us to critisize her on her thoughts, if she is a bad person or not for wondering and verbalising it , the question is around why Autism is considered by some a curse of some sort? Why do we ,parents, demonize it. Yes its not easy yes its very challenging yet I dont see it as a curse or a horrible disease. I obviously hope their child doesnt face any challenges and has a happy prosperous life, but then wouldnt an autistic future king have a happy prosperous life even with the autism challenges? why would autism make him any different in the public perspective? it shouldnt.

    MY RESPONSE –

    Shoot, I don’t know where my comment went. If this is a repeat, apologies.

    @tamara, the joy, yes!

    All, no, we wouldn’t want to wish struggles on anyone. But what about the unmitigated joy? What about the glorious lack of inhibition? What about the different perspective? What about the extraordinary enjoyment that our kids derive from the things they love with enviable intensity? What about the out of the box thinking that can change the world? What about those things? If one were to wish autism on anyone, wouldn’t one be wishing those things too???

    • More comments from Diary’s FB page:

      Comment: I have never and would never “wish” autism or whatever my son has or anything else on anyone. For completely selfish reasons. While I would trade every single meltdown, heartbreak, funny look, ect that has hurt my son, I wouldn’t for one single second trade the bond, the level of trust, or the emotional connection that our family has BECAUSE of my sons special needs. And for every person out there who doesn’t get it, we are thankfully surrounded by 5 who do get it. There are tons of families with no special needs or illnesses that every touch them, and I’m sure they are all happy and live wonderful lives. I’m sure they are proud of their children’s achievements and good grades and sports trophies. Why wouldn’t they be? For me personally, and I think I speak for lots of families with special needs kids, we LIVE our children’s achievements! We truly relish each and every accomplishment of our special needs kids as well as our main stream kids. The struggle we go through, makes every single one more special. Mainstream families don’t get to celebrate their 10 year old tying his shoe, or not crying when the firetruck goes by. They don’t get to truly appreciate the wonder of the zoo, or a water slide. The see it happen, think it’s great and move on. I’m not being critical of them in anyway. My very long winded point here is that as devastating as some of the things we have dealt with are, I wouldn’t trade places with anyone else in the world. I have a deeper appreciation for every single thing each of my 4 children does, simply because of the daily struggle my son goes through to function in society. And society, for the most part, even if they “get it”, only sees the struggle, not the true reward that parents of special needs kids get. So no Jess, you are in no way wrong for “wondering”, nor do I think you would be if you wished, which you didn’t. Sadly, it will take some one “big” in the world who is willing to share their struggle with the rest of us rather than hide it, for the rest of the world to “get it”. Thank you for sharing your families life with us. You’ve gotten me through some days I didn’t think were doable, just by being you and not being afraid to share it.

      Comment: Hmmm, you’re assuming my kid’s experience is the same as yours. I didn’t see joy until after we got hip-deep in intensive therapy and heading down the biomed path. Be well and good luck.

      Comment: it makes me wonder how the royals would approach living with autism.

      Comment: Can we yell this from a mountain top somewhere? I soooo agree with you.

      Comment: If we, as parents of children with autism have the right to wonder what it would be like if they didn’t have autism, we also have that right to wonder about the inevitable change of how autism would be viewed if it affected the lives of such public figures as the royal family. We, as a society should never pit against each other for wondering anything, for opening a dialogue that could be very helpful. I wouldn’t wish the ‘hard’ side of autism on anyone, but the amazing side of it… Heck, sometimes I believe people are missing out on some awesome stuff! When my five year old son can recall exact dates from years ago when we did something that was special to him, when my daughter lights up with pure joy over blueberries that are finally growing in the garden… Etc. The gut wrenching, tear inducing, hard parts of autism downright suck… But… They give way to the insatiable joy that these kiddos find in the little things. You are right on Jess.. And I am right here with you ❤

      Comment: Just keep writing, Jess! I didn't take it as anything more than "wondering" myself. It takes someone with a great amount of courage to blog in the first place, especially when it's so personal.

      • More comments from Diary’s FB page:

        Comment: Jess, I have to point out that Brooke is extremely high functioning and PDD is one of the LEAST severe forms of autism. For those who have children with severe ASD, children who will never function in society without mommy, for those who gave teenagers who don’t speak or children they are still unable to hug, touch, or even make eye contact with… To them it would be terrible of you to wish it. So if you’re asking why it would be so bad to wish mild autism, then on. But as far as just autism in general you need to remember that with all the challenges Brooke faces, in all reality you’ve got it “good” in comparison to what children, and parents of children, with severe autism have to suffer through. And those parents can’t comprehend wishing this on any other child or parent.

        Comment: It reminds me of a story that my mother used to say when I was young. Once upon a time in a village, there was a man. One day, God came in his dream and told me, tell everyone in the village that tomorrow the drinking well water will get poisoned and anyone who drinks from there will become mad. The man went and told everyone, but no one listened to him, and they all drank water from the well and they all turned mad, except this one man who knew better. Now, wherever he went, all the mad villagers started making fun of him saying look – The mad man is coming because he was so different from all of them. He got so tired of the exclusion that he went and drank the water himself and turned mad. Moral of the story – a) what is normal is very subjective. b) sometimes being on the other side can be fun or a pain, depending upon where the majority is c) any intervention cannot change God’s wishes. So I don’t think you are wrong in thinking our loud. What if we are the majority of tomorrow’s world and the definition of Normal gets twisted. !!!

        Comment: I understood completely what you meant

      • More …

        @Sarah, no form of autism is mild. Each have their challenges. For those of us who have children who are on the higher functioning end of the spectrum the challenges are different but no less challenging. Our children can look “normal” and so we have to fight for any supports because at first glance they dont look like they need services. Our children know they are different and so their peers actions hurt that much more. Our children are the ones who aren’t disabled enough for SSDI but who cant seem to get a job because they lack the social skills deemed so freaking important and thus never move out of the house and/orachieve independence. They have a very hard time forming relationships and thus battle depression from being lonely and knowing they are different. Yes the challenges are different with HFA but its NOT easier.

      • Another:

        Thanks, Jess. I had the same concerns. I think the issue is that not all of your readers have gotten to the place that you’ve gotten to you, just as at one point, you hadn’t, either. As far as struggles and autism, I don’t think my life, being autistic, is any harder than anyone else’s life. I think it would be presumptuous of me to say that is is. I do think it’s hard in a different way.

      • And … More …

        Comment: @ Sarah, wow, have we really sunk to “whose kid is more Autistic?”What a shame.

        Comment: I have to admit, I had the same thought regarding the sweet babe. I was really rooting for a little princess, not because I really cared about the gender, but because a princess would have a lower chance of autism. I get nervous anytime anyone has a baby now… everyone assumes that because the child is born “healthy,” it won’t develop any problems in the future… and we all know there’s a pretty good chance that he/she may. Maybe that’s just my outlook, but my views on everything changed after my daughter was diagnosed.

        Comment: Hey let’s expand our minds… Let’s stretch our perspectives.
        No one here( I believe ) wants any child or parent to hurt.
        But global acceptance, for all our children on the spectrum.

      • Seems FB is the place to be today ,,,,

        Comment: I have wondered about that. If the future Crown Prince should be autistic/ have autism, do they skip to the next child or appoint a Regent?

        Comment: We all know that until it hits home with someone with political power the funds and the education of others isn’t going to take place from a global standpoint. Right now we have non-profits that are trying their darnedest to make a dent. We have some funding from the government… But let’s be honest, not enough funding. You were not wishing it upon them, but why not there is beauty in autism, rather posing the question… Is that what it is going to take to get everyone involved???

      • More …

        Comment: Seriously… Do only women follow Diary of a Mom? From the perspective of a father I do think there is still a stigma for men to discuss the challenges their families face when they have a child who has special abilities. Its not macho to say you don’t have all the answers and that you can’t “fix” your child (even though they don’t need fixing). One of my worst moments with my son was when he had a breakdown at a baseball game and I had to carry all 80 lbs of him kicking and screaming from the stands to the car that was 1/2 a mile away. It was so bad I started crying and so there I was carrying a screaming/crying kid, crying myself, walking past all these people. When I was younger there is no way I would share this moment of “weakness” with anyone, but because of my son I have learned that being strong doesn’t always mean not crying or showing emotion. Also I think “we” as a community have come a long way where I can share this event with people and people actually understand and relate. 25 years ago when I was a kid I don’t think a father let alone anyone could share an event and not feel like they would be persecuted or told their child needs fixed. Re-reading this I’m pretty certain I’ve just rambled for quite some time…but you know what I feel 10x’s better.

        Comment: @Renee, no. Just making a point. My child is not severely autistic, I am just trying to be mindful of some of my friends who have children who are. My child has a diagnosis of PDD and I thank God every day for him being able to communicate with me.
        @Dawn, I agree that each faces its own challenges but I am not so consumed by what my child faces that I am unable to admit that parents of severely autistic children go through much more than I do. My hat is off to them, and I was simply pointing out that they wouldnt be able to find the reasoning behind “wishing” a child autism because they don’t GET THE PRIVILEGE of seeing some of the amazing aspects that autism brings to our higher functioning children.
        @Jess, I wasn’t at all implying that we shouldn’t wish these awesome and unique aspects of our children unto every child. They should only be so lucky! And I realize the bottom line is that you weren’t in fact wishing anything but simply asking a question to provoke thought about the many wonderful experiences autism CAN bring to our lives. I only sought to defend why some parents may not be able to comprehend that thought process because unfortunately they are unable to experience these things themselves due to the severe and debilitating nature of their children’s situations.

        Comment: @Dawn, AMEN! @ Sarah, I have two children with Autism, and my stepson had a brain injury during infancy that mimics Autism in many ways. So we have three children all across the Autism spectrum, and it’s hard for ALL of them. They all have their own battles and their own victories. It is disrespectful to their hard work and dedication to claim any of them have it easier than the other. It saddens me to watch my 5 year old son excel in areas that my 9year old stepson struggles. It saddens me to watch my 7 year old daughter make a friend in 30 seconds, but struggle to hold a pencil or cut with scissors. There is no clear outline of any person with Autism, I learned a long time ago that there is no box to fit these fantastic kids in, nor would I want to. This is an attempt to inform you, not anger you, please take it as such.

      • More …

        Comment: @Allison, thank you for sharing. I appreciate your prospective. I absolutely agree that all of our kids face challenges and they are all awesome.

      • More: (And proof positive that I don’t censor these.)

        Comment: Just not a very wise thing to say…..

        Comment: I wouldn’t wish it on anyone. Why would anyone want their child to hurt?? The amount of times my child feels terrible about himself, says out loud “why do I have to have autism?”, or has huge meltdowns many times a day, is not something I’d want another child to experience. Yes I’m glad my son is verbal. No I’m not happy that he can’t get through a day at school without having a meltdown and being looked down at by students and teachers. No. Can’t say I’d want anyone to have it. And all this ” autism is part of my child and its beautiful gifts”? – INHO that’s total crap people say to make themselves feel better.

        MY RESPONSE:

        @ann, what about those who say “autism is a part of ME and who I am and it comes with beautiful gifts along with challenges?” Would you tell an adult who said that, as so very many do, that they are full of crap?

      • More:

        Comment: With the abortion rate of DS so high, I wondered how they would handle a situation like that. I often wonder what the parents that so easily discarded a life does when they go on to have a “perfect” child but then find out that that child has a learning disability, autism, etc. I often wonder if there was a prenatal screen for autism, would children with autism be as easily discarded….
        I completely understand your point though. The what ifs… Because maybe just maybe a positive light, research etc would be bestowed instead…

      • More:

        Comment: Exactly!

        Comment: @ann, my children think outside of society’s box and that kind of thinking is sorely needed today to help solve societies problems. That is one of the gifts of autism. My eldest son may be unemployed and lonely (in the personal intimate relationship way, not in general) but he is brilliant, thoughtful, caring and passionate and active about the issues he believes in. Thats far better than many NT kids are these days who are far too self centered and judgmental. Has it been easy? no. Would he change who he is to remove the hard parts of autism – No. The tunnel you are in Ann is long but you really need to look for the light sometimes because constantly looking into the darkness isnt good for you or your child. Find a good thing/characteristic in/about your child and focus on it.

      • More:

        Comment:

        @Dawn, I think I’ve found a new friend 🙂 You are dead on. Our kids are amazing in spite of and because of Autism. Everything does not need to be tragic… And it isn’t 😉

      • More:

        More …

        Comment: @Jess…I think you have sparked quite a debate 🙂 It is a healthy, mostly constructive debate. That being said, as I have come to read your posts and follow you daily, I have but one thing to point out… Do not write a post tomorrow apologizing for anything, once we come to a point that we must apologize for our opinions, dialogue, or even debates, we have taken a step in the wrong direction. Thank you for your guidance and thought provoking posts, keep them coming 🙂

        Comment: @diary no I wouldn’t say that to an adult clearly. However when adults (NT) say it about their child I sometimes think they are trying to make themselves feel better. But, again, I’m a half empty kind of person. I just can’t understand why it’s a blessing? It is not a blessing in this house. There is a lot of sadness, depression, talk of suicide(wait til Brooke starts THAT-and I hope to God she does not!), self hatred etc. these are not blessings.

        MY RESPONSE : @ann, no, they’re not. They outright suck. As does the crippling anxiety that Brooke struggles with every day. But they don’t negate the beauty of their lives, some of which I firmly believe is just as due to autism as the tough stuff is. The intensity with which my daughter loves what she loves and the ecstatic joy that she finds in things that most of us would be too inhibited to do – those things are gifts. For me, my approach has been to look at the autistic adults who like themselves. Who are proud of who they are. Who are as comfortable in their skins and neurologies as any of us can be and to ask myself, what can I do to foster those feelings in my kid? To allow her the gift of feeling that way about herself. Additionally, I seek to create an environment for her and around her that encourages her to be who she is. Much of what you describe is not always, or even often, the manifestation of autism itself but of the internalization of society’s reaction to it. Is your son depressed because of who he is or because of how who he is is perceived by others? Is he struggling because of his neurology or because his neurology is not the norm and he may not have yet found ways to accommodate it? The difference is tremendous. Because the latter in both questions is changeable.

        Thank you for engaging in the dialogue. I appreciate it.

        Comment: @ Ann…n/t’s go through these same cycles. I know this to be true. At times it’s hard developing personhood.
        I also know we can control our perspectives and views of our children… Whatever they are going through…. Drug use, criminal activity, not doing so well in school… Or just being on the spectrum.

        MY RESPONSE: Oh, sorry – forgot my point! Lol. If you believe adults who feel that way about THEMSELVES than why is it far fetched for parents to find that perspective about their children?

        MY RESPONSE: And of course these are not always verbal or what you might perceive as “high functioning” adults (though I loathe the term.)

        Comment: @ghoul I have triplets, one with autism. I don’t have any of these issues with the other two. It’s completely autism related there. Yes I know nt’s go through all the same things or can go through them but in my case it’s autism driven.

        Comment: Can I just say pls read the book i might be you by barb. Jess, I love your writing 🙂

        MY RESPONSE: Mary, YES!!!!!!!

        MY RESPONSE: And @Allison, promise 😉

      • And more …

        More ..

        Comment: @diary my son feels horrible after ever meltdown. His are bad and they have to make him feel bad physically. I can see that in his face and body. He also feels bad about his reaction to things. He know its not acceptable to flip out about things. Some comments he has are: why do I have to have autism? What if I still do this when I’m an adult? I want to be happy. I want to be like everyone else. He doesn’t want to be different. Maybe that’s where I’m at. HE doesn’t like himself because he can’t control the emotions. I want him to like himself. So that is why I wouldn’t wish it on anyone. This part of it. Maybe you have a happy daughter who skips and squeals. I have a vastly different type of autism. Yes he’s happy sometimes. I don’t have the skipping etc. Wish I did sometimes. All I can do is praise him for the good things he does and keep working on the challenges.

        Comment: Oh and I like the other poster who said to not apologize tomorrow. You can feel how you want to feel! You can’t please everyone. 😉

        Comment: I hear you. And I know the pain of the meltdowns. It’s awful. I know nothing worse.

        The “not acceptable” part is the environment vs internal that I was talking about above. It’s not his reaction as much as his knowledge that it’s “not acceptable” in his environment. I know we can’t snap our fingers and make everyone understand, but we’re working on it. For him and for all of us. Promise.

        Comment: Ha. Thank you!

        Comment: @ Ann you have a full plate. I have a 23 yr old with Tourette’s( she is now in her second semester of cosmetolgy school) Our son Has severe autism and non verbal.. We have gained great ground with OT and sensory play…. Buckets of beans in our home. Excersise that would wear out a young man in his prime. my husband and I over the happy 40 mark. Playtime with Easter seals was a great help to us as well.

        Comment: @Ann, my heart aches for you and your son… Boy have I been down that road, and still experience it every day. I don’t presume to know your exact situation or assume that I have any answers. I will tell you one thing though, my children with Autism have just as much right to ‘tap out’ of any situation and experience as my 4 NT children do. Yes, it is excruciating, yes, we miss out on things, yes, it downright sucks! That being said… Two of my three with Autism used to pound their heads into concrete, hurt themselves in any way possible, and completely meltdown. It took a fabulous OT and a TON of tears and love for me and them to learn that some things were just not okay. Some situations just couldn’t be worked through, some things may never be in the realm of possibility for them. I remember the ER trips, cat scans, stitches, and the utter feeling of hopelessness. I wish I could promise you it would all get better, but I can’t. What I can promise you is that you are in a safe place here.. With a lot of people that have the same t-shirt as you, I personally have to choose to focus on the amazing moments so I can find peace for myself and my family. The bad stuff is still there… It just doesn’t get to win.

        Comment: I agree that wondering is not wishing. However, I would not wish any hardship on any parent or child. My oldest was born with a birth defect. It was relatively minor and she was repaired and home after 32 days. Some babies that have the same defect were in the hospital 6+ months and some babies for whatever reason, never make it home. If it were in my power, NO parent would have to endure NICU stays. I feel the same way about autism. I would not wish the therapy, the meltdowns without apparent reason, the seeming lack of connection to people, etc on anyone. Sure, I see positives in my ds. He has a pretty good memory. When he is happy, he is really happy. A book keeps him entertained.
        And sadly, I don’t think that even if he did have autism, that WE would see benefits. There are plenty of famous people that either have autism themselves or have children with autism. Dan Marino has a foundation in Miami, FL. Has it changed ANYTHING for me or my son who also lives in FL? Nope, not. a. bit.

        Comment: @Ann: My heart goes out to you as well. What you are describing sounds difficult. However, I wanted to share this: Last week someone told me I saw the beauty in my child to make myself feel better, to appease my ‘guilt’ I can assure you, in my case, it simply isn’t true. In the past, I was guilty of thinking ‘Why my son?’ and ‘Why our family’. I decided to stop that talk. If I want my son to accept himself for who he is and see that he is a wonderful valuable person, if I want society to see this as well, I must believe it. And I do.

        Comment: I totally understood your comment. Some people make of a statement what they want to. You didn’t say anything to upset anyone. It was just a fact and or Question???

        Comment: The idea that you were ‘wishing’ autism on anyone never crossed my mind. I just know that most new moms (admittedly some more than others) are very concerned about their child’s development. It’s pretty safe to say we all want our kids to be happy and live life to the fullest. I love every little bit of who my daughter is, but the fact is that her autism makes life hard for her sometimes. How hard? I don’t always know, since she also has developmental delays and has great difficulty communicating. Its painful for her, and its painful for me when I don’t understand how I can help her or what she is trying to express. Does she ask to go to the doctor because something’s hurting? Or because she knows she’ll get a special treat afterwards? So yes, I’d probably ‘lose’ her autism if I had the chance, just as I would lose anything else that made things hard for her in any way. But she is who she is by the grace and wisdom of God, and that’s good enough for me.

        Comment: Perfect Wendy

      • And … Even more ..

        Comment: Exactly Jess! I couldn’t agree more. Individuals with Autism have soooo much to offer this world. They’re a blessing. That’s why I can’t understand the harm in ‘wondering’ if the royal couple may have been blessed with an incredible kid like ours. I think that would make them lucky. The people that are putting shame on you for voicing it… I don’t even know what to say to them. We’re supposed to be a community. Of course we all think differently and we all have different experiences and opinions, but that doesn’t mean it’s ok to say hurtful things or put shame on others for having a thought! We should be supporting each other. And yes, Brooke may be on the high-functioning end of the spectrum (like I saw someone mention below), but she (and your family) face a unique set of challenges for that reason, just like I do with my low-functioning non-verbal daughter. It doesn’t make your path easier than mine. It’s just different. xx

        Comment: it’s a very interesting point to ponder that Jess puts forward: would would happen if….? for our particular family the emotional and financially ruinous fallout of having our beautiful son be on the spectrum suggests that the royal family would not be subject to that stress – possibly the #1 stress (how to pay for all the therapies). The financial stress is closely related to the ‘fear of the future’ stress – this prince, whether on the autism spectrum, or not will be cared for long after his parents are gone…if i had those financial and future assurances, i don’t think it would seem horrifying to wish ‘this” on someone else – and by ‘this’ I mean financial ruin, I don’t mean being on the autism spectrum.

        Comment: @Ann I am an autistic adult. I feel for you and your son. I had years when I just be very depressed about being different and wishing I could be “normal”. It’s hard and life was tough as a kid. I also have UC so it’s fun all around! #sarcasm. But I do think he will get better as he gets older. I can’t say for sure but I have. Not every day is great but I for sure know no one is normal and I like my personality, I just get down about the hard stuff at times. (As I’m sure everyone does). I really wish you and especially your son well! 🙂

        Comment: My son asked if he could go for a walk when he was feeling angry today. His teacher called me delightedly. What is normal these days? We just want our kids to be healthy, happy, loved and accepted. Oh and let’s throw in gorgeous – that is a given, right Mums?

        Comment: @Holly Thank you so much for your reply. I can’t tell you how much it means that someone with similar challenges can tell me about their journey. Really, the hope I have is based on my son getting better as he matures. That maybe he will start to be able to reason with himself when he has difficulties. I know that he will still have challenges but I also want him to be proud of himself and happy.

  5. I wondered the same thing. And even if it was a “hope” instead of a “wonder,” I fail to see where that would be hoping for something bad. Challenging – absolutely. But bad? My husband and I are constantly in awe of our three autistic children. While we, as parents, have only been blessed to be on this journey for a few years now, instead of the lifetime of experience your autistic readers have under their belts, that’s exactly how we feel about it- blessed. My kids are at three very different points on the spectrum – so this is not a my kid is high functioning so it’s all rainbows and butterflies. It has just been such an amazing experience to get a glimpse of this world through their eyes – they see things in such an amazing and different way. And even those difficult time – and there are many- help us to understand just a bit more. I wondered too. And there is just a little piece of me that does hope – yes hope- for friends to get even just a taste of how truly awesome the experience of parenting, of getting to know on such an intimate level, an autistic Person. It is hard, but wow, I just wouldn’t have them any other way.

  6. I had wondered the same thing. The operative word is “wondered”. Here’s the thing….I wonder about it every time I’m around a baby. What if? Not that it’s a worry/fear/wish/hope it’s just there….what if?
    Ok, maybe it’s I “worry” that there are enough resources, I “fear” the ignorance of the general population and I wish/hope that the parents, family and friends of one of “our kids” knows the blessings and life lessons that I have learned from my son.
    So, yes, when I hear about a “famous” child, I wonder the same thing .

    • “I wonder about it every time I’m around a baby. What if?”

      Me too. All the time. I think most of us looked down at our newborns and just saw the beautiful innocence reflected back in our eyes. Now, as a special needs mom, I peer into the eyes of other people’s babies and ask silently, “Who will you be?” Not in a negative, accusing way. In a smiling way that says, “We have no idea what your future holds, and that is the beauty of life.” Yet another gift that my son’s autism has given me. No assumptions. All accepting.

  7. Oh my, Jess. That post from Facebook, the one where it was said that you’ve got it good with Brook’s high-functioning autism…I might need to go look in the mirror. I think my eyebrows just popped off the top of my head. Let me congratulate her in causing me what I thought was a physical impossibility. And I am so relieved to know how easy you have it. Wow, you should start a blog to tell the world about your easy life with autism. (I sure hope you can hear the sarcasm dripping from my post.)

  8. There is nothing wrong with wondering. I thought it was a valid question and one that I asked myself. Why is it so wrong to wonder and question how our world would be should that happen? It is not a wish or a desire for the little Prince to have autism but just a “What if?” moment. Especially a Royal couple like Will and Kate that seem so down to Earth and “normal” that it would be interesting to see how they parent a child with autism. As for the “would not wish it on my enemy” that is just hurtful as a parent. In my opinion, that sends out the wrong idea about our children – that even though there are good times, the bad is so horrible that it is as bad as the plague. Even on my toughest days with my children I could never say that.

    Thank you for once again being so eloquent with your words and thoughts. It is touching to see such honesty and sincerity in a world where many are cautious to speak from the heart because of the possible backlash that may come.

  9. Jess, I respectfully have to agree with what Michelle wrote. To be honest the blog actually stung a bit to me because the baby was just hours old. I guess I could see if he was two years old and we saw him interacting or not interacting with others and noticed that he was displaying traits that we saw in our children. The question that you posed was (in my case) too raw for me because it felt a bit self serving. Could this infant possibly help our community? Of course I want all children and adults with autism to have the best life possible. I just do not know if wondering about it happening to a famous family means that they would want the duty of being the champions for the cause. In my opinion, the Royals do not have to raise a child with autism to help out in a huge way. Look at what Princess Diana did for Aids relief.

  10. wow – what a dialogue this created. I will echo the masses that appreciate (always) your amazing ability to articulate your thoughts. I will add myself to the masses who absolutely had the very same ‘wondering’ thought. And I will simply say that with the extremely high rate of autism we are now dealing with in the world, I believe the negative voices on this thread are not being completely honest that the very same thought didn’t cross their minds.

  11. Reblogged this on Diversity is Art and commented:
    I was going to leave a comment but I wrote too much so I thought reblogging would be better and my very long (and bitter) comment is on my own blog. I’m writing with little energy and on my iPod so expect less coherence, I’m tired of editing my posts and leaving them on my drafts folder. Please read the original post to understand my writing (and the original post is great) .

    Most important words in that post: “To the parents in the crowd, I beseech you to remember that we are joined here by autistic friends. I urge you to keep them in mind when you choose your words. I urge you to remember that they are ALWAYS with us because we are all in this world together, the adults along with our children, who are watching, taking their cues about how they should feel about this integral part of who they are – about themselves – from us.”

    I need to say thank you for writing this.
    I rarely see non-autistic parents care about that, their opinions matter more than our emotional health, including the emotional health of their own children. It’s selfish and egoistic to think that what you say is more important than the effects it has on us, I know how it is to live with family members like that in a society that hates us. Our families should support us and be like sanctuaries in this world, the safe place where we truly belong and are fully accepted and valued, our loved ones should be an example of how we belong and are valued, in reality most of our families are just a smaller version of society and we learn how little we are valued from every side, most comments by parents of autistic children remember me of that, it makes me happy to read the comments of the good parents and sad that I am happy to read someone behaving like a decent human being and acting like parents are supposed to act, I shouldn’t have to be so happy about the basic.

    People have a lot to say about the burden of having an autistic child but I think no one cares about the burden of living with non-autistic people who see the autistic person in this view and don’t censor words that are nothing more than acceptable bullying and emotional abuse against autistic people, than people wonder about the mistery of their children depression, anxiety, aggression and low self esteem but just chose to assume it’s a side effect of autism itself. It doesn’t matter if the words hurt, if it makes us angry or make us want to be away from them. They can’t put themselves in our place.

    Some go farther and attack anyone who say anything positive or even neutral about us.
    (Obviously there is a double standard here because criticizing any parent or care taker is polemic, considered selfish, wrong and a proof of lack of empathy which is ironic. Nothing about this makes sense since society doesn’t constantly remember non-disabled care takers that their lives are worth less and that who they are is bad and that they hurt who they love by existing. This defensiveness is being spent on the group who needs it less.)

    The way our families talk about us also makes a point to strangers that it’s okay to treat autistic people badly, after all if our own parents talk badly about us and the fact we exist or cause to much problem, if our own families talk about that in public with no sense of shame or trying to change, what does this says about us and the way we deserve to be treated?

    Some parents almost sound prideful about it, they talk about how they are mourning for their living children or that we are burdens and make sure to say there is nothing wrong in feeling this way and that this is the natural and healthy way to feel, that every parent feels like this and there is no shame in it and that anyone who says that this hurts their child is bad.

    If there is really a need to speak about those emotions in public it would be almost as a confession of something to change, like when you did a hurtful thing and it’s trying to change because you recognized it hurts people, it would be appropriate to say you expected a non-disabled child so much and was so full of misplaced expectations that you mourned your living child and that was wrong and hurtful, or to recognize that you lack the resources to care for a child because you were not prepared for this or to say you are overwhelmed and didn’t know what to do and things are so bad for you that you almost feel that your child is a burden but you are working to change since that’s not a reality, it’s okay to say you are scared or tired without offending and hurting us.

    You are free to say anything you want, that doesn’t make it right or removes all consequences of your words.

    Basically you should be making the subject about you and not your child since parents feelings are never the responsability of their children, the parents are the adults, children have no power over adults, a child’s feelings are supposed to be protected by the adults, not the other way around.

    I will never understand non-autistic people who put the value of their opinions on a pedestal and the value of autistic people as non-existant. People like that are the real tragedies in our lives.

    About the post topic of wondering about the possibility of autism.
    I think such a public figure would suffer more if they were autistic because the publicity, invasion and stalking public figures have to endure can only be extremely harmful for anyone, especially an autistic person.
    I think I live under a rock since I had no idea this was happening, who are those people and I don’t really care about the lives of famous strangers, I think it’s highly unethical to make a child a public figure like that, it’s not like an adult actor who choses to be public but a new born child that will be stalked and have no privacy in their life.

    About wishing autism.
    I wish there were more autistic people and see nothing wrong with that, diversity is good and amazing, maybe the world would accomodate our disabilities more, not because of caring and good intentions but because of cold things like profit, in a world with more autistic people if a public place is inaccessible it would have less clients and that is a realistic motivation for people to make things accessible, I no longer have faith that places and people would accomodate us, people don’t really care, people want to cure/eliminate us (which is strongly motivated by profit), people don’t want to accept us but give them a reason that benefits them and we stand a chance.

    More autistic people, more social pressure about our rights, maybe a more accessible and less overwhelming world, more chances and places for us and maybe less loneliness.

    [Insert here obvious disclaimer about good parents, not everyone being bad, all the things I’m not saying in this post but people might think I said, etc]

    Thank you for the original author.

    I need to stop writing now, right now.

    • Thank you. I do not allow anyone to treat my son like he is less. I don’t do it myself. He has a lot offer the world. His gifts may not be the norm but they are gifts. I try to imagine how hard some things are for him and yet he is a very happy guy.

      I wish you peace and kindness.

      Jersey

    • Thank you for this. It was all incredibly important to read and remember, not just as a parent of two autistic children but as a member of our community in general.
      This part: “More autistic people, more social pressure about our rights, maybe a more accessible and less overwhelming world, more chances and places for us and maybe less loneliness.” That’s what I want for my sons. Thank you for speaking up and being a part of that less lonely world for them.

  12. GRATEFULLY COPIED WITH PERMISSION FROM DIVERSITY IS ART:

    A NOTE TO PARENTS: PLEASE READ THIS GENTLY AND IF YOU CHOOSE TO RESPOND PLEASE DO SO WITH CARE AND RESPECT. THIS IS EMOTIONAL STUFF. THANK YOU.

    I was going to leave a comment but I wrote too much so I thought reblogging would be better and my very long (and bitter) comment is on my own blog. I’m writing with little energy and on my iPod so expect less coherence, I’m tired of editing my posts and leaving them on my drafts folder. Please read the original post to understand my writing (and the original post is great).
    Most important words in that post: “To the parents in the crowd, I beseech you to remember that we are joined here by autistic friends. I urge you to keep them in mind when you choose your words. I urge you to remember that they are ALWAYS with us because we are all in this world together, the adults along with our children, who are watching, taking their cues about how they should feel about this integral part of who they are – about themselves – from us.”
    I need to say thank you for writing this. I rarely see non-autistic parents care about that, their opinions matter more than our emotional health, including the emotional health of their own children. It’s selfish and egoistic to think that what you say is more important than the effects it has on us, I know how it is to live with family members like that in a society that hates us. Our families should support us and be like sanctuaries in this world, the safe place where we truly belong and are fully accepted and valued, our loved ones should be an example of how we belong and are valued, in reality most of our families are just a smaller version of society and we learn how little we are valued from every side, most comments by parents of autistic children remember me of that, it makes me happy to read the comments of the good parents and sad that I am happy to read someone behaving like a decent human being and acting like parents are supposed to act, I shouldn’t have to be so happy about the basic.
    People have a lot to say about the burden of having an autistic child but I think no one cares about the burden of living with non-autistic people who see the autistic person in this view and don’t censor words that are nothing more than acceptable bullying and emotional abuse against autistic people, than people wonder about the mistery of their children depression, anxiety, aggression and low self esteem but just chose to assume it’s a side effect of autism itself. It doesn’t matter if the words hurt, if it makes us angry or make us want to be away from them. They can’t put themselves in our place.
    Some go farther and attack anyone who say anything positive or even neutral about us. (Obviously there is a double standard here because criticizing any parent or care taker is polemic, considered selfish, wrong and a proof of lack of empathy which is ironic. Nothing about this makes sense since society doesn’t constantly remember non-disabled care takers that their lives are worth less and that who they are is bad and that they hurt who they love by existing. This defensiveness is being spent on the group who needs it less.)
    The way our families talk about us also makes a point to strangers that it’s okay to treat autistic people badly, after all if our own parents talk badly about us and the fact we exist or cause to much problem, if our own families talk about that in public with no sense of shame or trying to change, what does this says about us and the way we deserve to be treated?
    Some parents almost sound prideful about it, they talk about how they are mourning for their living children or that we are burdens and make sure to say there is nothing wrong in feeling this way and that this is the natural and healthy way to feel, that every parent feels like this and there is no shame in it and that anyone who says that this hurts their child is bad.
    If there is really a need to speak about those emotions in public it would be almost as a confession of something to change, like when you did a hurtful thing and it’s trying to change because you recognized it hurts people, it would be appropriate to say you expected a non-disabled child so much and was so full of misplaced expectations that you mourned your living child and that was wrong and hurtful, or to recognize that you lack the resources to care for a child because you were not prepared for this or to say you are overwhelmed and didn’t know what to do and things are so bad for you that you almost feel that your child is a burden but you are working to change since that’s not a reality, it’s okay to say you are scared or tired without offending and hurting us.
    You are free to say anything you want, that doesn’t make it right or removes all consequences of your words.
    Basically you should be making the subject about you and not your child since parents feelings are never the responsability of their children, the parents are the adults, children have no power over adults, a child’s feelings are supposed to be protected by the adults, not the other way around.
    I will never understand non-autistic people who put the value of their opinions on a pedestal and the value of autistic people as non-existant. People like that are the real tragedies in our lives.
    About the post topic of wondering about the possibility of autism. I think such a public figure would suffer more if they were autistic because the publicity, invasion and stalking public figures have to endure can only be extremely harmful for anyone, especially an autistic person.
    I think I live under a rock since I had no idea this was happening, who are those people and I don’t really care about the lives of famous strangers, I think it’s highly unethical to make a child a public figure like that, it’s not like an adult actor who choses to be public but a new born child that will be stalked and have no privacy in their life.
    About wishing autism. I wish there were more autistic people and see nothing wrong with that, diversity is good and amazing, maybe the world would accomodate our disabilities more, not because of caring and good intentions but because of cold things like profit, in a world with more autistic people if a public place is inaccessible it would have less clients and that is a realistic motivation for people to make things accessible, I no longer have faith that places and people would accomodate us, people don’t really care, people want to cure/eliminate us (which is strongly motivated by profit), people don’t want to accept us but give them a reason that benefits them and we stand a chance.
    More autistic people, more social pressure about our rights, maybe a more accessible and less overwhelming world, more chances and places for us and maybe less loneliness.
    [Insert here obvious disclaimer about good parents, not everyone being bad, all the things I’m not saying in this post but people might think I said, etc]
    Thank you for the original author.
    I need to stop writing now, right now.

  13. I just want to gently point out that you are quite often writing about your family’s challenges on your blog and FB, how you mention that you are “paying” for a great day with a difficult evening, how your child’s sensory challenges affect her and her meltdowns are whole body experiences and tear you up, how stressed you are at times. Of course there is great joy – but you yourself are always talking about the stress and worry. Or (gently) am I wrong? I didn’t take your wondering as anything but an intellectual exercise but when you ask what’s wrong with wishing it on them – I think it’s because we all wish we could take the wonderful parts of autism and alleviate the challenges for our children.

    • I don’t deny that there are very real challenges that my girl faces. As I said to Ann in the comments above, her sometimes paralyzing anxiety just plain sucks. And yes, her sensory challenges are indeed, well, challenging. But if taking away those challenges meant taking away the intensity of her joy, the incredible enjoyment that she gets from the things that she loves in a way that I simply cannot compare to any non-autistic person I’ve ever met, her different perspective on the world, her inhibition, her humor, much of which stems from her unique experience of the world, well, I’m not so sure that’s a trade *she* would be willing to make, so it’s not one I’d be willing to make for her.

      I don’t deny that autism is difficult for my daughter. I never have. It would be desperately dishonest. But the fact that it comes with some incredible gifts is, to me, equally undeniable.

      Thank you for posing your question so respectfully.

  14. Reading this and the other comments on Facebook etc, as well as your responses, I actually had to sit back a moment and take a breath. I agree with you Jess. Autism is one heck of a challenge, seeing your child struggle with basic living, is heart wrenching. But oh the beauty of it! It enriched me beyond measure, it taught me that there are ALWAYS important small detail in the bigger picture, that we always tend to miss and are poorer for it… It is sad to think and hear that most people think Autism is a death sentence. It has many faces, and a lot of it just isn’t pretty. And is tiring. Very tiring carrying the responsibility of making sure that our autistic kids will be ok… But the miracle of small wonders happening every now and then makes it all worthwhile. To learn to see beauty the way they do is life changing. I will not choose a different fate for anything in the world. My little girl, in her immense daily struggle, has definitely made me a richer, better person.

  15. Pingback: In the World this Week: my favorite posts | The Penniless Traveler

  16. Can I ask–would you wish autism on your older daughter? On any children she might have? she would be better prepared than most to deal with it, but is that something that you would want for her? I am not trying to be catty, at all, I just wonder how far wishing upon goes.

    • Would I wish autism on Katie? No, I wouldn’t. Because I can’t conceptualize what inserting autism into a twelve year old could possibly mean. Autism is an integral part of who Brooke is – it affects everything she sees and smells and tastes and feels. By definition, it is pervasive. It colors the way that she perceives and experiences the world in its entirety. It’s not something that could be added or subtracted from who she is. Therefore I don’t know what wishing it on Katie means.

      But would I wish it on my grandchildren? The honest answer is that it would probably depend on how much progress we’ve managed to make in the fight for recognition of human dignity and true equality of access and accommodation and opportunity and understanding of the need for diverse participation at all levels of society by the time it was relevant.

      When I was in high school, I had a close male friend who was black. I was shocked when my extremely open-minded father was relieved to hear that we weren’t dating. He explained to me that he was not making an inherent judgement about him (he never would – he’s not that person) or our relationship, but that he knew that the world (or at least vast swaths of it) was still a less welcoming place for interracial families, especially the children. Having interracial friends, I unfortunately know this to be true.

      Same with wishing that my child were gay. Would I want one of my children to be gay if given the choice? In a vacuum, I honestly couldn’t care less. But I want my child to be happy. And watching friends struggle to have their marriages recognized, be accepted by their own ignorant and homophobic families, repel ugliness and fear every single day … well, it certainly gives me pause – but not because I wouldn’t want them to be gay. Because I wouldn’t want them to suffer through society’s current reaction to them being gay. My thinking is very similar regarding autism. It’s not the difference itself that I would hope to avoid. It’s the environmental / societal challenges that attend it that I truly wouldn’t wish on anyone.

      But the hardest part of this for me is that almost no one is making that distinction in talking about autism. The suggestion that my proposing the philosophical question, “What would happen if the prince were like my incredible, beautiful, joyful, differently brilliant and yes, challenged, autistic child?” is inappropriate or insulting is horrifying to me. There are far worse fates, I assure you.

      Might his life be more difficult in some ways? Of course. And I’ve touched upon the fact that as a royal it would be even more difficult to navigate. However, would it also likely be more joyful in some ways? More satisfying in others? And if his parents, with all the resources in the world at their disposal, were able to create an environment that would work for him, might he just be one pretty happy kid? I’d have to say yes.

      I hope that sort of answers the question. At least kinda. 😉

  17. Well, I think Wills and Kate would still be proud dotting parents. However, I am reminded of a Royal Prince Centuries ago who did have learning disabilities and was hidden away from public view. If my memory serves me (because I cannot remember the dates or the Prince) he was not even allowed to live in the palace, but in another little house on the grounds. Of course, all his needs were met, apart from the parental love he must have yearned for.

    Incidentally, I live 2.5 miles from the palaces, so have a touch of the buzzing baby fever

  18. I hear what you’re saying. I read your post as “I wonder how “our” world would be impacted if someone who has the attention of the world BY DEFAULT were impacted by Autism…how would that change things?”. I did not hear “I wish the child had Autism”. You wished nothing on them.

    I think what you DID wish for was greater visibility for the challenges we face as parents, those of us with “just quirky” kids to those of us for whom every day is a challenge; for those who are Autistic and want understanding of who they are, how they think, the challenges they face, the pain and the joy, etc.

    As humans, we have a real talent for putting our heads in the sand and not wanting to deal with things unless they are right smack in our laps. Princess Diana was moved to help others even though she was not “directly” touched by Aids, land mines, etc. (If I’m wrong about this, I apologize, as I’m not a Royal watcher). But that level of charity seems atypical – most of us are motivated by the things that impact us directly.

    What your post made me think about is – who do I know that has a large audience? How can I reach out to see if they will come on board to help?

    One of my favorite TV shows is Dr. Who – I found this article by following the “how can I spread the word” train of thought – http://peapillybean.com.au/2012/07/26/the-lessons-doctor-who-is-teaching-my-asd-kid/. Shows like Parenthood, Big Bang Theory are shedding a little light on the world of Autism by getting it “out there”.

    I’m not sure how we can help do it outside of the fundraising/awareness bubble. It’s the “real life” bubble that I think may have a deeper, far reaching impact – the stories, like yours, that you share. How do we connect our stories to the neurotypical world so they can see the overlap, the impact? How can we change the world from the inside out where Autism is concerned? How far can we reach and how can we connect?

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