the ends, the means and the cost

To the parents who said that Suzanne Wright’s Op-ed reflected their experience with their children,

I want you to know that I hear you.

I want you to know that I do not paint Autism with just as broad a brush as Mrs. Wright did.

Autism is a spectrum. A spectrum as vast as the entire human experience.

A spectrum upon which there are indeed people who cannot manage the most rudimentary aspects of self-care without significant support.

I do not seek to erase your experience, and more importantly, your child’s experience, from Autism’s narrative, any more than I will stand for my child’s experience being twisted into a narrative that is not hers.

Autism is not unicorns and rainbows.

Not for us, nor anyone I know.

It is a disability.

A disability that can make communication challenging, if not seemingly impossible.

And with no accessible means of expressing one’s most basic needs, life can be excruciatingly difficult, not just for those who are desperate to be understood, but so too for those are desperate to understand.

There is a reason that I’ve written here again and again:

To those of you who read Diary without a further connection to autism, I am grateful. I beg you though, please, please always remember as you read …

Our autism is just one house on the block, not remotely representative of its neighbors.

Our friends need help.

And by God they need it now.

A reader left a comment here last night in which she said that even the worst things said by Autism Speaks were things that she had heard “vehemently and heart achingly” expressed by moms in her online support group every day. She went on to say,

It does suck, it is hard, and it does feel like I, our family and my marriage has suffered intensely at times because of Autism. Yes, there are joys and moments of victory, but so were there in the Holocaust. If I had the choice I would NEVER pick autism because of “everything I’ve learned from it”. All I have to do is look at every counseling session, SIBR or questionnaire that I’ve filled out to see that what they’re saying is true. Would I love to be like one of the women who say child birth is “a little intense or uncomfortable”? Yes, but that would be a lie. This has been brutal, heartbreaking and beyond anything I ever could have imagined. To be completely honest, on my part, I agree with much that has been said; but the truth hurts. Deeply. I love my son and would never give him up, even if I knew before he was born what we’d go through. But I also sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, any social gathering for that matter-even bowling or going to the grocery store can feel like I’m being beat by this awful disease! Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it. Some people have the luxury of money or extended family to rely on, many of us do not. Should we make the best with what we’ve got? Absolutely, but that doesn’t mean pretending to the rest of the world that it’s a “gift” or anything short of an ongoing challenge. They don’t advertise Boot camp as a getaway, neither should they make autism out to be just something “different than expected”. That would also be completely irresponsible & untrue. Maybe not for you, but for the hundreds of mama’s I know who share their daily challenges it’s absolutely overwhelming at times.

I share this comment not to single it out, quite the opposite in fact. I am highlighting it because I know it is representative of a lot of others out there. And I want them – you – to know that you are heard. And because I want you to see what I wrote back.

This is what I said.

I hear the hurt in your words. and I’m so glad that you have a support group where you can talk to others who have similar experiences and vent about how you feel. Because it’s necessary to have a private place to be able to say things that you would never want your child to hear. For any parent, that’s important.

Because when we write about those feelings here, or on a website, or in any public forum where they are on view and will remain accessible forever, we speak in front of our children and in front of autistic adults. When we talk about the entirety of the Autistic population as “existing but not living,” “kidnapped,” “lost” etc, we negate the vast spectrum of experiences that Autism comprises.

When we compare Autism to the Holocaust or call it brutal, heartbreaking, or an awful disease, we erode the humanity of everyone here who shares that neurology.

No one wants you to sanitize your story. This isn’t all unicorns and rainbows. Some of it is really damned ugly and hard. But I guess what I’d ask you to consider is whether or not you would say this not even just in front of, but TO your child.

Would you say, “This has been brutal, heartbreaking and beyond anything I ever could have imagined. To be completely honest, on my part, I agree with much that has been said; but the truth hurts. Deeply. I love my son and would never give him up, even if I knew before he was born what we’d go through. But I also sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, any social gathering for that matter-even bowling or going to the grocery store can feel like I’m being beat by this awful disease! Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it,” TO your child?

Because when we say it here, we’re saying it to all of our children and all the Autistic adults who are here with us.

I’d urge you to read Sharon’s comment above, about what happened when her son came upon Mrs Wright’s post and how it made him feel. Or Zoe’s response to your comment to see how it made her feel. You might say your son can’t read these words or wouldn’t understand them. I don’t by any means want to put words in your mouth, but if that were to be the case, I’d ask you to reconsider that notion as we continue to see more and more evidence that Autistic people, speaking, non-speaking and everything in between, are perfectly cognizant of their world, if not far more so than their NT peers.

I hear you. I really do. I have a lot of very close friends who experience Autism very, very differently from the way do. Who, or whose children, live with overwhelming struggles – with no discernible method of communication life is hard. And help is needed. As I said in the post, both short and long-term support is needed urgently.

But it can’t come at the cost of the safety, dignity and self-esteem of your son, or Sharon’s son, or Zoe, or my daughter. And I firmly believe that it doesn’t have to.

Help and support are needed. Urgently, desperately needed. No one here is denying that fact nor asking that anyone else do so. I have spent my time, my money and every bit of energy I’ve got trying to get that help. And I will continue to do so and to stand beside those who do. But not in the way that Mrs Wright is going about it. Because the ends do not justify the means when the means ultimately destroy our children and any hope they may have of being a part of the greater community.

The children who are right here, along with Autistic adults and who, whether we see them or not, are reading over our shoulders.

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45 thoughts on “the ends, the means and the cost

  1. Well said, Jess.

    “Help and support are needed. Urgently, desperately needed. No one here is denying that fact nor asking that anyone else do so. I have spent my time, my money and every bit of energy I’ve got trying to get that help. And I will continue to do so and to stand beside those who do. But not in the way that Mrs Wright is going about it. Because the ends do not justify the means when the means ultimately destroy our children and any hope they may have of being a part of the greater community.

    The children who are right here, along with Autistic adults and who, whether we see them or not, are reading over our shoulders.”

    Love you,
    Mom

  2. Jess,
    I stumbled on your blog a while back as a newish mom when a friend “liked” a post you had put on Facebook about offering up a prescription bottle as proof for using a credit card at a clothing store (Ann Taylor?) Anyway- I started following you on Facebook because I thought you were hilarious. I had no idea what your page was really about.

    In my sons first 24 months of life I was,perhaps, overly concerned that he was on some level of the spectrum. We had him him screened, a few times, and he- as it turns out, “fine”. (the word that was used by our ped and an early intervention assessor from the state, still not sure what that means).

    Anyway I digress. I sit here, 4 weeks away from having number 2 and realize I have, NOT ONCE, even considered if this baby would be anything but “fine.” Maybe I have been too busy with life to stress about the what-ifs I have no control over, maybe my fortitude as a mother has taken hold a bit but I would like to think that this page and your beautiful writing has made me truly see that we, as mothers and women, can truly handle anything. With grace and humor.

    I am not sure that this rambling makes sense- but in the end please take away a heartfelt thank you for reminding me (and i suspect others) that we can truly handle anything. I so look forward to your posts every morning- and although this page is about an experience i do not share, and the struggles and joys in it – I have found it to be about a bigger experience, Motherhood. And it has made me feel connected at times when i needed it most.

    Thank you!

    Erin

    • Welcome, Erin! And, you’re right…we all share that special bond of motherhood and we come here for love, laughs, truth, tears, advice, or simply to reassure ourselves that we are not alone. You don’t have to be on the spectrum, be raising someone on the spectrum, or even know someone on the spectrum to help, or to care.
      Blessings to you as you prepare for your next amazing gift!!

  3. I have been in the pit if despair. I know what it’s like to feel desparate, and alone, and scared. I know what it’s like to live and breath autism, mourn a life I think I lost, and to hate autism. Mostly because I thought that’s what I was supposed to do. But, I think how you live is a choice. Regardless of the struggles you face, because everyone faces hardship in life, you can choose to be consumed by misery, or you can choose to be…happy. I was tired of being sad all the time. Of fighting my kid, trying to reach that Holy Grail of “passing”. It took a while, and it wasn’t easy, but I changed. Honestly, you get one life, and I never want to look back with regret. Yes, there are things that need to be addressed as our children grow older, and there are changes that need to be made so that services can be provided to individuals and families who need them. I know what it’s like to have incredibly dark days, and would never push aside the struggles others face. But, must we go after these changes by making our children into walking tragedies? Must our message to the general public be one that makes our kids look less than human? Why can’t we bring about change by showing the world that our kids are wonderful human beings, who deserve to live happy, fulfilled lives? Why can’t we stop looking at autism as the Big Bad, and instead stop to enjoy the children and lives we were given? We can’t blame our kids because our lives are hard. We just can’t. We can’t blame our children for how we, as parents, feel. That’s on us. I would never want my children to read the message put out by Autism Speaks. That is the biggest thing:would you want your child to see themselves in that light? As people who basically ruin lives? Please let your answer be no.

  4. I came by your page by chance, I am not sure how. It is helping me understand much even though my son has a different condition. I was just vacumming and thinking..:when it struck me the hardest part in all this is to the outside world my son looks fine. That has made this journey harder most of all because I feel alone. Because I am tired of trying to explain to those who chose not to listen, who sit in judgement of me as a parent, who can not stop to think that not all difficulties are visable.
    Whatever the condition I think we all need a little understanding, support and just a ear to listen.
    My son probably has a rare form of this condition, not well understood by the medical profession. We are waiting for test results.
    I know there are many more more sinister conditions and we are fortunate but that still doesn’t stop me feeling lost at times.
    I also know his progress is down to much hard work and effort yet this is not recognized by many if any.
    One of the best starting points I do believe is by sharing our collective experiences to help those starting out on this journey. I learnt alot from your post about the water. Young children can struggle to explain how they are even if they have language. I know my son had GI issues but he couldn’t express what he was feeling because he didn’t know any different. All the professionals framed him in a fussy eater box. I knew it wasn’t. We are doing much better now but I had to learn to trust my own instincts..
    Sorry for the rambling but my head is full of thoughts..

  5. I agree with you 100%. I haven’t been able to bring myself to discuss with my son the fact that he’s on the spectrum. I’m afraid of the day he will come across a commercial, radio ad, or something in writing that describes how awful autism is. What if I’m not there to explain to him that it doesn’t mean HE is awful? What if he reads an article about how kids on the spectrum are more likely to have depression and suicidal thoughts? He’s eight. He doesn’t need to know all of those things right now, but once he associates the word “autism” with himself, how can he not take the negative writings and ads to heart? I get it. Thank you for seeing them as people and not as kids with disabilities who won’t notice the negativity surrounding the word that is such a part of them.

    • Hi Michelle – I am also worried about what my bright, observant, hears-every-word-from-another-room, autistic 5 year old would learn about himself when he hears about autism in media… he will hear he needs to be cured. He will hear that there are millions of dollars being spent so there is no one else like him ever born. Those are frightening messages.

      So I decided to start brainwashing him, before the world gets their hands on his opinions. I’ve told him truths – that he uniquely wired. That he may even have extra wiring that makes him brilliant. It also makes him extra sensitive. That wiring can make some things a little harder to learn and to master. I’ve told him told more. I just decided that letting him know, and being open about it, would let him know I’m not ashamed or hiding and that he is a-okay.

      And of course, I learned most of this wisdom from DOAM.

      • I just wanted to say I think your explanation is fantastic. I too have told my son that things are a little harder for him because his muscles and joints work differently. It helped a lot for him to know that we know some things are harder for him.
        When he was about 4 he asked me why I wore glasses. I explained because my eyes work differently and it is important that I wear them to see properly especially when I was driving or I could get in trouble with the law. It led to a discussion about being different and that that it is ok.. With all the wisdom of a four year old he said ‘ and being different isn’t against the law’…A lot of adults could learn form him.

  6. I have been watching and reading and listening and thinking and hurting, along with everyone else. We, too, live on Autism Street, but our house looks very different from yours and from the commenter you responded to. I live in a house of five, four of which are autistic. We are representatives of the former diagnosis of Aspergers. Our autism is not even remotely similar to the lives described by Suzanne Wright, but we are here. We are not struggling in the exact ways that others have described, but we have our challenges to face. And I deeply appreciate the fact that you are pointing out to parents, those with incredible tunnel vision, the pain they inflict with the carelessness of their words. With my oldest daughter’s permission, I want to share what happens in THIS house on the street.

    I keep hearing the word “burden” floating around. That word makes me feel physically sick. My oldest daughter is NOT a burden. Her struggles are NOT a burden. Unconditional love is not a BURDEN. But, she thinks that SHE IS A BURDEN. She thinks that the family would be better off without her. She thinks that the world would be better off without her. Because, she is (in her mind) a burden. No matter how many times I tell her she is NOT a burden, she points out that she is no longer able to attend school…she causes worry and heartache and…wait for it…financial BURDEN. I cannot even begin to tell you how difficult it is to convince a 16 year old that there is no aspect of this journey that is a burden to me. When I struggled with a serious bout of depression last summer, she saw me struggle. She made the conclusion that my depression was her fault and was even more convinced that she was a burden. I had issues with depression long before she was even born. My issues are my own. But, she just could not see it. Because she whole-heartedly believes she is a burden, she hates herself. On top of her autism, depression, and anxiety, she has crossed over into some major mental health issues. When she finally reached the point that she was ready to end her time as a burden, I had to release my precious daughter into the care of professionals. It was the hardest thing I have ever done…because I want to be the one to make it better for her, not strangers. But, we do hard things when we want to save our children. She is precious and irreplaceable. And how dare anyone imply that she, or any part of her journey, is a burden? How dare anyone state that she has vanished or is invisible? I spend every day with her, all day long, trying to convince her of the opposite. She is not a BURDEN. She is my DAUGHTER!!!! She is beautiful and talented and intelligent and creative and a thousand things beyond a burden. And she is autistic. Autism is hard-wired into her…it is a part of her genetic code. She is not sick. This is not a disease. She cannot be cured. She comes from a long line of autistics on both sides of her family tree. SOME of the autistics in our family have worked on Apollo missions, are serving in high levels of the military, have successful businesses, are exceptional teachers, are extremely musically gifted, and are PEOPLE…not BURDENS. They contribute to society. They get married and have children and go to church and own homes and have jobs and pay taxes. And their path to success has not been simple or easy. THEY ARE NOT INVISIBLE. THEY ARE NOT A BURDEN. Some in our larger family tree have not met with success. Some have self-destructed. Even within one family, we cannot all be lumped together, under one description, one word, one outcome.

    Listen, Jess, if my daughter had ever heard ME say the things that these other parents have said, she would have never made it. I cannot imagine what damage it would inflict. I hope she never reads the words or sees the PSA’s from Autism Speaks. Her heart would break to know that other parents see their children and autism as burdens. She would not be able to separate their house on autism street from ours. It would be the final straw for her.

    • My heart breaks for your daughter, Lisa. You are a wonderfully clear, passionate advocate for her. I hope she finds peace and wellness through whatever path works for her. You sound like you’re doing everything you can and more… best wishes.

  7. truth.

    not only are our autistic children, but their NT siblings, and extended family and friends and neighbors and so on, are exposed to hearing and reading what is said and written publicly, by us and by others. our words are shaping their thoughts, impressions, attitudes, and feelings not only towards autism but towards parenting, family relationships, friendships, and communities at large.

    and good heavens, with so many of our autistic children taking words at their very literal meanings, and replaying one single instance or phrase over and over and over again, it behooves us to take even more care that our words are precise and representative, written and said mindfully and with full comprehension of their permanence. expressions and exaggerations can be so easily misunderstood, and once put out there, are difficult – if not impossible – to change.

  8. In my journey with my 5 year old non-verbal son, I was once in the place of fear, frustration, depression and feeling hopelessly lost. My son needs help with all of his daily care needs and is an eloper that is drawn to water. In my quest for knowledge, help, sanity, I sought out everything I could possibly read in the few hours that I should have been sleeping each night. I came across your blog months ago. It helped to see that even though our journeys are different, that it isn’t the bleak world I envisioned. Slowly over time my view of my son changed is. He still has all the same challenges. It is thanks to your blog that I see things from a different perspective and see him for who he is, not what he isn’t. Thank you. You have saved one mama a lot of pain.
    P.S. It seems music is the key to unlocking my son’s world. I found an orchestra dress rehearsal to take him to thanks to your Godspell post giving me the inspiration to make it happen!

  9. This can be hard. I have typed out three comments and deleted them all. The words aren’t here for me this morning. It is hard. But it is beautiful too. And one doesn’t need to outweigh the other. It just is. And it is so important to remember that our children are listening,watching, absorbing. All of it. And however hard it may be for us as parents, it is not, and cannot be about us. It is about them, our children. Because that is what parenthood means. Putting your children ahead of yourself. Period. So yes, find the support if that’s what you need to make yourself whole, so you can be a better parent. But never do so at the expense of your child.

  10. I am thankful for folks like you who have gone before, endured the bullets of fear and despair, so that I could start my life with my son as the beginning of a grand adventure rather than the end of one. The world’s view of autism is changing rapidly now, and I’m glad to be along for the ride, instead of facing the daunting task of effecting that change from the inside. Or worse, becoming another father trapped in misery wondering what he did to deserve this.

    I really do mean that Jess, thank you.

    For now though I’m glad to take a little step back from the vagaries and outrages of Autism Speaks and start talking about garbage-eating again.

    Thanks for being my voice.

  11. I hate the idea that people’s realities are being erased or denied. I hate that these parents feel that the community at large is invalidating them. I’m sure that there are many families whose daily lives are incredibly stressful. But it seems they could be made less stressful by some help. If Suzanne Wright really cares about those families, then why isn’t her incredibly well-resourced organization funding respite care, adult services, etc.? It’s not just a matter of the ends not justifying the means, it is that the ends aren’t useful. If scare tactics and ugly hyperbole were funding some helpful stuff that would be bad but at least someone would be getting some help. But, shining a light on the lives of people who are in great distress to raise money and then not using that money to reduce those same peoples’ distress is even worse. I also think that reducing the stress in peoples’ lives–letting them have the opportunity to sleep through the night, or go on vacation, or know that there was a place for their child who has aged out of k-12 services to go to that was safe, appropriate, and allowed him/her dignity–would help them feel less like they wanted to drive off a bridge. It might be easier for parents to spend less time feeling like their kids were burdens if some of that burden was lifted. Autism Speaks actually has the means to do it and it’s criminal that they don’t.

    • This is exactly what I’ve been thinking. I really hate that some parents are being told not to share their feelings. I hate that they are told that their pain needs to be hidden because it offends someone else. It almost seems hypocritical. At the same time I have two children on the spectrum who are rather comfortable in their autistic skin and I would never want them to see AS’s fearful and ugly messages. I agree that if Autism Speaks is going to use these families who are hurting, scared, lonely, and overwhelmed to get others to donate they should be using those donations to help these families. We should not be telling these families that their feelings can only matter in private.

  12. I don’t know if this is wishful thinking on my part, but in some places (blogs, the op-ed comments, etc.) it seems as though the people that are overwhelmed with their challenges may, because of that horrible op-ed, be finding connections to a community that they didn’t know was availble to them. And they are finding the potential for support and hope there.

    There are autistic bloggers, parent bloggers, autistic-parent bloggers that have come from a similarly difficult place, made it through the fear/dread and come out on the other side – and they are making themselves known to the overwhelmed who may have previously only had a community as overwhelmed as themselves to turn to.

    That is really heart-warming. We’ve always been there for each other, but it seems that the words have all come together at the same time, in the right places, for the right people to find what they need.

  13. I’m one of those moms whose child is on the not-so-fun end of the spectrum. I never thought you didn’t hear us, but what I have noticed from the comments on your posts, and the comments on Suzanne Wright’s op-ed that there is a disconnect in the Autism community. You see, our autism isn’t the same as your autism. In fact, I thought “our autism” was more the norm, if there is one, but now it seems as if we are in the extreme minority. I don’t really know anyone with high-functioning autism, because I only meet other families through my son’s classes or therapies. I stopped attempting to go to support groups because all the people doing the GFCF diet and “curing” their kids made me feel like crap because it didn’t work for us. I actually get more support from friends who don’t have kids on the spectrum. Sad, but true.
    So, I asked my mom to read your post because I needed another perspective. Her feeling were mixed like mine. Because what she has noticed and commented on in the past is that every time she sees a documentary or interview on mainstream media about autism, it features someone high-functioning, and they are nothing like our baby. And the message is “this is what your child can be like if you do all the right things.” Which gives false hope to people like me who spend huge amounts of time and money, and get no results. I still have a 12 year old 2 year old. In fact, my 16 year old daughter says it is easier to babysit a group of 2 year olds at church than her 12 year old brother at home. But only Autism Speaks has ever shown that side, the painful side, of autism.
    Not that I am a fan of Autism Speaks. I don’t think they represent the whole Autism community and they should certainly know better. I don’t like that they only showcase the painful part, even though it probably is more effective for fund raising. I think that the success stories could be just as effective and informative. But at the same time, I’m wondering if anyone has statistics about the actual distribution of the spectrum. I can’t find any. Is my family really in the minority? Are we part of a much smaller group than I thought?
    So I was asked if I would want my son to see or read the Autism Speaks point of view. I couldn’t say this at the time, but if my son could read the op-ed, or could comprehend the video, and give any indication that it effected him at all, I think I would be overjoyed. Because then I could explain to him that autism is different for everyone. And for some, that is how it is. But I can’t do that because he truly doesn’t get it.
    My point is our autism is different than yours. And while I rejoice in your triumphs, I am also jealous of them. Because if I had a child who could do half the stuff I read about from parents of high-functioning children, or from high-functioning adults, I would be intensely over-joyed. But I don’t. What I have are all the difficulties represented in the Autism Speaks platform, that all of you are offended by.

    • I love this comment. You took all of the words that I was trying to say out of my mouth Ina more coherent… And less angry… Manner.

      Jess, I applaud your effort in speaking up. However, you have an autism “success story” in your household. Your daughter is making leaps and bounds every day. For many, as hard as they try and fight they will never hear their child speak, their child will never acknowledge they exist, and a hug will never provide comfort.

      While autism speaks might not be going about things they way you would like them to, and while it may not speak for your autism, they are speaking out for OUR autism.

      As you encourage others to look at other houses on “autism street”, I hope you look down the block as well. Your large and pretty house is much more welcoming then the one torn down by the tornado down the street.

    • I think you really get to the crux of the issue Stacy….we are really talking about the extent to which autism impacts a person. The only really decent (not perfect) comparison I can come up with is epilepsy. Child A has epilepsy. Child A responds to medicine, though a breakthrough seizure might happen once a year or once every couple of years. Child B has intractable epilepsy. No meds work for the child and the child has 5 or perhaps 50 seizures a day. For child A and his or her family, epilepsy means something so different than that of child B it’s hard to have a conversation about what “epilepsy” means, what treatment looks like, short, long term, etc. For child B and that family, terms like “Holocaust or call it brutal, heartbreaking, or an awful disease” seem pretty reasonable.

    • Thank you Stacy and Alison. I stopped attending the support groups as well, and am too realizing that “our” end of the spectrum must be the minority. My son’s dignity and self esteem are always in the forefront (confidence breeds competence), and the word burden has NEVER entered our minds, but with all the EI, ABA, RDI, ESDM, OT, speech, GF, vitamin therapy, LOVE and SUPPORT from a mom, dad and two brothers whose worlds revolve around him…our guy fits the description presented by Autism Speaks exactly. So I can tell you that my dream to keep him safe and happy, maintaining his dignity through his ENTIRE life will only happen if my husband and/or I miraculously outlive and care for him or if their is another type of miracle that releases him of the challenges he faces every moment to function in this world. So would I as his mother who loves him more than life itself trade in his amazing ability to play a classical tune by ear on the piano and his beyond his years love for Van Gogh and Munch, to forego the constant fear of him escaping or his inability to tell us immediately that he was in pain when he broke his femur in 3 places (and he is not non-verbal), or his inability to convey hunger to a familiar family member watching him for a few hours (even though I left his typical amounts of favorite foods available but it isn’t enough that day), etc., etc…- without a second of hesitation. And at that moment when the tables changed and he was on the other side of things, I would sit down and explain to him that now he could choose to advocate for himself and I would continue to help him climb this mountain. But until we reach that moment, for my boy, Avonte and all the others who Autism Speaks described, I will continue to pray for something else for them…a life easier (or whatever word seems to best fit) for them – and their families.

    • Dear Stacy,
      I am with you on this. I am trying to understand the outrage of those who were offended by Suzanne Wrights piece and I do appreciate Jess’ acknowledgement of how difficult autism can be. Still, what I understood from this piece is that we must not have our experience publicly acknowledged. We must keep it private in our families and our own little circles of support groups. To be outspoken about it will cause hurt feelings. This is a difficult situation. I want to respect those that may be hurt by expressions of pain such as those expressed by Suzanne Wright. But I don’t know how our legislators will understand our experience if we don’t make it public. I don’t know of any public health or social behavior condition that gets help by being kept quiet. Moreover, I don’t think it is healthy to ask parents to pretend that everything is ‘fine’ (and if we can’t express our pain publically , that’s what we’re being asked to do.) Support groups are entirely insufficient and in general, we just don’t get much emotional support. As for investing more in respite care, while it is better than nothing, parents like me would rather see investment in things that will help our children improve so that respite care isn’t necessary. Autism speaks has put significant resources into making sure insurance coverage for our children includes therapies and treatments with this goal in mind. It is not sustainable for Autism Speaks to put resources into Respite Care with the need being so great.; even with all their money. I do agree that Suzanne Wright should have acknowledged that the suffering she described is not as wide spread as she made it appear, and that adults should have been recognized in her piece. The judgment cast upon her just seemed a little harsh. It feels, for many of us, that those who can’t relate to the AS piece should be grateful instead of telling those of us that can we should keep our experience quiet.

    • What really bothers me is that when the mainstream media talks about autism in a positive light, they always focus in on the high functioning end, and ignore that there are people who see low functioning autism in a positive light as well. For example, many autistic AAC users have talked firsthand about issues of severe impairment, such as inability to speak or dress themselves, while at the same time saying that autism isn’t all bad.

      I worked with a 10 year old autistic boy once. He was mostly nonverbal, wore diapers, had frequent meltdowns, etc. But he was also a sweet and engaging boy in his own weird way. He loved to go swimming, and would trill and flap in excitement as we were getting ready for the pool. He’d do whatever he felt like doing, regardless of what anyone thought, and while that could be problematic sometimes, it was also refreshingly honest. You always knew where you stood with him. And I’m not just saying this because I didn’t have to deal with him 24/7 – his foster mom agreed with me on this.

      I’ve also recently gotten a puppy. And when she first came home and she was whimpering all night, chewing on everything and peeing & pooping in the house more often than outside, I found it hard to pay attention to her positive traits. When I’d be out walking and someone would come and pet her & say nice things to her, I felt this urge to jump in with a list of what all was wrong with her and how much stress I was under. And meanwhile, a big part of me was thinking of how much I’d have preferred getting a kitten (kittens are *so* much easier than puppies!). But it would not be fair to Rose to undercut her positive traits by focusing on the negatives, or to wish that she were a different species. She’s a puppy, she can’t help being a puppy, and puppies are not all bad.

      Now, I’m sure you love your son, and hopefully see that he has good qualities. But so many people don’t. The general public sees autistic kids, especially low-functioning autistic kids, as nothing but problems and objects of pity. And Autism Speaks is doing those kids no favours by focusing on that to the exclusion of all else.

  14. My very wise grandmother who faced numerous challenges in her life lived by these words
    ‘ Oh great spirit may I judge no man until I have walked two moons his moccasins’..
    What this journey with my son has taught me is to try and have compassion, and understanding. That we know not what anyone else may be going through.
    There are no easy answers to all this.
    What worries me is it all becomes about a condition and not the person or the family.

  15. I don’t often post here, although I enjoy reading your posts Jess because you write so well. I want to add my 2 cents.
    I think the real “person” that is in the wrong here is not Suzanne Wright, but rather the government and the medical establishment. They are the ones that lump everything under this umbrella of ASD. From Suzanne Wright’s perspective (and mine), we’re dealing with some majorly sick children. My child with ASD almost died last year. She developed severe colitis – I won’t fill in all the gory details. As she laid in the hospital bed, I had to listen to a pompous doctor lecture me on how wrong Dr Wakefield was, and no I didn’t bring the topic up, he did. I had to hear him say that her autism was unrelated to her colitis, when in fact my readings since that point make it very clear it’s all related. The microbiome is everything – whether these sick children were hurt by vacccines, or antibiotics, or c-sections, or gmos, or all of the above. If your microbiome is not healthy, you can develop all sorts of horrible diseases like colitis and autoimmune disorders.
    But back to my point. We need the government and medical establishment to stop lumping everything under ASD. We needed a diagnosis such as aspergers, and instead they have taken that away. We also need a diagnosis that establishes the medical issues that we now call autism.
    Suzanne Wright is correct in saying we need immediate action to help these children with real, serious medical issues. 100%. She was forced to use the term autism because she has no other term to use.

  16. It breaks my heart to think that our anger towards the op-ed piece could be seen as our offense at those “lower” on the spectrum having their story shared. I’ve heard it before from friends whose kids have more severe symptoms when I’m frustrated about media portrayal of autistics as being helpless and burdens. And I sincerely hope people from ALL parts of the spectrum can be represented in the media, because everyone deserves to be represented with dignity. What pained me about the op-ed piece is that the autistic voice was missing, entirely, from the discussion. It could have been written from the point of view from an autistic person who wants to communicate, who wants to have more control over his/her body, who wants to be heard and loved and respected by the world. I’ve seen firsthand that NO ONE loves the way a mama loves, and no one wants to have her child embraced by this world the way a mama does. That’s the message that could have, and should have, been portrayed- not that these kids are burdens, or unloveable, or missing, but that we as mothers love our children fiercely, and so fully, and we want our children to have every opportunity to shine and experience this world. And part of our job, as mothers who want all this, is to talk to autistic adults who want to help, who deserve to be heard, who are shouting from the rooftops their experiences as autistics and are saying that they stand with those on ALL parts of the spectrum. I will support organizations that see our children as worthy of dignity, respect, and a voice, regardless of placement on the spectrum. We are in his together, truly, but we cannot continue without giving the autistic person the dignity he or she deserves and giving all on the spectrum the voice he or she deserves.

  17. I was one of those mothers, I gave birth to my premature son at age 43. He had some lags, primarily communication/motor planning/balance. They wanted to test him for autism. I decided against it, because I had a fear of a “label” that he would carry the rest of his life. Labels that are so easily placed, yet never taken away. In a world where one size fits all, autism is not a one definition. He remained in all the therapies, ABA, speech, OT (thankful we could afford them!). Then I came upon your blog, you gave me words when I had none for what I was feeling. You made me understand that labels aren’t bad, that our children need to forge the way for the next generation, when autism, will be just a word. Jess, you are so important to our village here, and out in the world, where you so eloquently speak and make people understand, these are our children, they deserve nothing more than to be treated as human beings who may have difficulty with some things, excel at others. We are not bad parents because we try to help our children navigate in a society where judgments are made all too quickly. So a meltdown happens now and then. What’s the big deal? For my son, who probably was just delayed and is in school, probably isn’t on the spectrum, who knows I never tested him, and he is thriving. He has some quirks, but what’s the big deal. Sorry to ramble, it was a just thank you from me to you for fighting the fight.

  18. As the mom to 2 on the spectrum, My eldest is almost 19 , my other son is 9. I have learned some real truths about autism. Regardless of where you “live” on autism street nothing is easy. Even if your child is verbal and of normal intelligence the sensory issues, social issues, neurological issues do not guarantee they will EVER be able to live on their own. My brilliant eldest son with Aspergers may NEVER be able to live on his own because he at this point seems incapable of learning/mastering life skills like budgeting, social interactions and hygiene among others. If you cannot grasp budgeting you cannot pay your rent, buy food etc and thus live on your own. When you cannot learn personal boundaries and take whatever you need you cannot live on your own. If you cannot learn to communicate with non aspies effectively you cannot negotiate the business world needed to obtain and hold down a job and cannot live on your own. While these are different challenges they are still SIGNIFICANT challenges to independent life. And because he is so “high functioning” there is no assistance. He doesn’t qualify for SSDI as an adult and since he was capable of earning a regular diploma and getting into college academically he has no transition services either, he was discharged from special ed upon graduation.
    My younger son has more “traditional” challenges including allergies, sensory issues, and a significant speech impediment related to his verbal apraxia.

    No house on autism street is sitting on the corner of easy street. Just because your struggle doesn’t look like mine doesn’t make either struggle easy.

    We need to band together and stop demonizing autism. We all need supports and services appropriate to our children’s specific needs available from birth to old age. We do not need to round up all the people with autism and either dump them in JRC (the only reason I can think of to promote that sanctioned torture center) or “eliminate” them entirely as Ms Wright so eloquently put it.

    The device she used to publish that op-ed has its roots in inventions created by those on the spectrum. Without them her organization would not exist as it does today. She needs to recognize the value of all the spectrum but sadly I doubt she ever will. This family will not be turning blue in april again

  19. I have sat on your post for a day now. I have read both Suzanne Wright’s Post as well as John Elder Robinson’s, and what I believe is that they both spoke from a place of compassion, and the want to do what is right.

    With that said, they also spoke from their personal experiences, how their life was impacted by an Autism Spectrum Disorder diagnosis. They expressed their opinion, and made it known, for the world to read. Ironically, that is what I feel is most important. The topic is relevant again, and really isn’t that what we all want? To continue the conversation to raise awareness regarding our child or loved one’s individual needs? To allow those who are high functioning to express their need for acceptance, and for those who need more help to ask, on a larger platform?

    Was it right? I feel it is a matter of opinion. Would my son, who is 5, be impacted by reading either post? I don’t know. I hope that it would open the door to further discussion about Autism, what it means for him and to him, how he defines it, in comparison to both Robinson and Wright. Is he capable of having that conversation? Not now, but I hope he is in the future.

    In our family, we discuss Autism daily. It is a part of our life, it is in our life, but it does not define our life. It is as much a part of us as our left arm, it helps guide us daily. It has made us a more loving and whole family.

    What I took away most from both posts is that we all have needs. Our children are on a spectrum, and Autism looks different for every child, every adult. There is no 1 Autism.

    Perhaps Mrs. Wright was wrong to lump Autism as a single population, as an epidemic, however, there are parents struggling, and their children need more help. I feel her intent was to speak on their behalf.

    There are those who are high functioning, and want acceptance. There are many with Autism who are uniquely talented, and there are others who simply are unable to function without daily help and guidance. Rather than fight one another, isn’t the greater goal to come together and advocate on behalf of the whole spectrum?

    I wrote the following on my blog, it is a small piece of a larger post: http://kinerafoundation.blogspot.com/2013/11/a-call-to-action-or-slap-in-face.html

    “As we continue to advocate for those with “different abilities” we also need to embrace the hardship for all affected by it. We are all being graded on a massive curve, and need to remember that our personal experience, belief, and way we handle our experiences are different from others. Just as those with Autism are on a spectrum and all require different levels of care and treatment, we as humans are on a broader spectrum, and too are in need of different levels of care and treatment. If we are asking the normal population to embrace and understand the Autism Spectrum, shouldn’t we be advocating the same for ourselves?”

  20. Many People with Autism already know their challenges and suffer themselves from the frustration and pain that comes with it; they’re well aware of the struggles already because they’re the ones living with them. My point in the comment I left quoted in this blog is simply that people who suffer from any other disease such as cancer or heart disease don’t suffer with the, “cost of the safety, dignity and self-esteem” because of the ravages it takes on their bodies, families and economic health. And I firmly believe that it doesn’t have to for those who suffer from Autism either; no matter how difficult or destructive parts of it might be. We don’t have anything to be ashamed of. To say that Autism is different and tell us we need to keep quiet about the challenges in the name of respect is, by default, telling the world-and those who have the diagnosis- that it is something to be ashamed of which is exactly what contributes to the continuation of stereotyping and discrimination.

  21. I know I have it lucky. My son can communicate, and keeps improving all of the time. It hasn’t always been this way, but I have been able to understand his perspective for a while. That has made it easier in some ways, since I have a good understanding of what he has been trying to say. There have been ways it is harder, since when I have a clear understanding of what he is trying to say, I am trying to help him find the words to express himself it in a way that other people could understand. While I know it is important to help him find the ways to communicate with other people, it is quite frustrating to know that they won’t take the time to try to find out how to communicate with him.

    I understand that there are many people who feel like Suzanne Wright, that their child has been taken from them. Like they have been kidnapped and there is nothing they can do to bring them back. Part of me wants to plead with them to try to learn to understand their children, learn to see what they see, hear what they hear, feel, both physically and emotionally, what they feel. Another part of me want to scream at them “how dare you tell your child that they are missing and that they will be ignored by you, because you can not put the effort in to understand them.”

    I know full well that there are people whose children are in a place where they are a danger to themselves, and possibly to others as well. I also know that it isn’t a tit-for-tat, where Autism is offset by something else; that it ends up being a zero sum game the universe plays, where a child might not have the ability to communicate, but that will be offset by being a gifted musician or talented artist. It just doesn’t work that way.

    But I have seen people gloss over and give up whenever they hear the word Autism. I think that is why the neurologist that first tried to diagnose my son used PDD-NOS, pervasive developmental disorder, not otherwise specified. I think that was his way of trying to make it not so scary, to give hope that it might not be Autism. But we had already read enough about it to know it wasn’t a death sentence, that while it meant that things would be harder, but from what we had already seen from him, that many things would be possible.

    Yet there are too many other parents out there who hear Autism and immediately think that there is no hope, and produce the same mental picture that Suzanne Wright paints, where their children or grandchildren have been taken away from them. All that is left, at least to their eyes, is an empty shell. But they should know, they NEED TO KNOW, that is the same child in front of them the minute after they heard the word Autism, as was there the minute before. The word only gives you something to help know where to start looking for help.

    And I agree, that more needs to be done to provide help. But that shouldn’t come at the cost of those children’s lives or their dignity. They might not be able to express their need for their dignity, but that should make it all the more important for us to remember that for them. You don’t ignore a child unless they ask for your attention. You don’t forget to make food for them because they didn’t ask you about dinner. And you don’t act like they are gone when they are sitting right there.

    You can feel sad that their lives are going to be more difficult, and that some of that difficulty will come because other people will refuse to meet them halfway when it comes to communication. But you can’t be one of those people. You have to learn how your child communicates, so you can meet them at that halfway mark, so you can try to help them go a little further. If they can’t make it there, then you have to make it for them.

    To mashup/paraphrase Martin Luther King Jr. and Joss Whedon,
    “When they can’t fly, you help them run. When they can’t run, you help them walk. When they can’t walk, you help them crawl. When they can’t crawl, you carry them, but whatever you do you have to help them keep moving forward.”

    Yes, there will be children diagnosed with Autism that will never be able to crawl, in the sense that they will always need someone to help them through their day to day lives. Some of them will need a little help, some will need constant “24 hour a day” help. And we do need a national plan on how to help all families receive the services their children need. But we don’t do that by demonizing their lives, by de-humanizing them, by humiliating them. We shouldn’t teach them that they should live “in fear of the future.” But if we are living that way, then that is what we are teaching them.

    • Chris:
      Your quote blew me away. “If they can’t fly…etc” This needs to be shouted from the rooftops….
      So very true. It is about helping reach some one’s full potential, whatever that is.
      Thanks for sharing………..
      At 12 months my son didn’t sit up, he had global developmental. We worked hard to help him. Now he is 7 he find sitting and writing. Many would say oh that is no big deal but it is when you are in a classroom and no one thinks there is anything different about you. We learnt this the hard way over the past few months.
      Whatever the condition most of all everyone needs understanding..
      For that which is not visible this is often the hardest thing to come by.

  22. I am just struggling to understand a bit more. When you supported the work of Autism Speaks, was your focus on acceptance, support services, and a celebration of diversity? Was research into prevention part of your agenda? As a matter of public policy, can you really continue to demand money for services as the rates grow and the needs escalate? At some point, don’t you have to acknowledge that it is unreasonable to ask for money if everything is just perfect? And if everything is not just perfect, shouldn’t prevention (or even “cure,” however remote the possibilty) be part of the agenda?
    I adore my son and would never trade him for anything. However, I see it this way–if I had a child with depression and I would encourage my child to take an antidepressant. If I had a child with a reading disability and something came along that could enable my child to read better, I would seize that opportunity. While autism is more closely entangled in the essence of being, I still believe that if I was offered something that might enable my son to participate more fully in the world–to talk, to learn more easily, to share attention–I would celebrate that something and I would consider myself a good parent for offering my son every possible opportunity for an independent life.
    The view from the higher end of the spectrum and the view from my end are so incredibly different. I hope that we can work together somehow. You are saddened when people with autism read words that can hurt them, and I agree with this. I am also saddened when people outside the autism community see all the conflict within our community and turn away from giving support. Sometimes, I suspect I know just how my son feels–I want to bang my head against a wall, too.

    • Susan,

      I don’t think the problem is that people don’t want treatments for autism, or cures for the different causes. For me at least, the problem was with how all 3 million children with autism were depicted with the worst view. Where they could easily blame themselves for their families problems, which included families splitting up, going broke, and struggling through the days and years.

      My son is old enough, and high functioning enough, to understand he is different. He understands that he doesn’t make friends, and that he has a harder time with things like communication. He is having a hard enough time without hearing that he is the cause of so many problems.

      Here is my quick attempt to re-write Suzanne Wright’s “A Call for Action.”

      This week is the week America will fully wake up to the autism crisis.

      Three million children struggle each day with the effects of autism.

      The families of those three million children struggle with finding the help their children need.

      They struggle with finding therapy providers for children who need help learning how to speak, or how to hold a pencil, or how to use a keyboard.

      They struggle with their insurance companies to cover needed therapy, and when it is denied, they struggle to keep from going broke trying to get their children the services they need.

      They struggle with school districts to provide services to their students, even when those services would be covered by federal funding.

      This is autism.

      It is the children whose speech and emotional development is years behind their peers, but if they get the help they need and they can get it early enough, they can keep up. All too often, they don’t get what they need, and they fall even further behind

      This is autism.

      It is the children who grow up physically, while they do not develop mentally beyond that of an infant. Who will need constant care, every day for the rest of their lives.

      This is autism.

      It is the children who are bright, witty, intelligent, and deeply caring, but they lack the ability to communicate. So they end up hearing every negative word, every complaint, every insinuation that they are the fault for their families problems, and all they can do is suffer in silence.

      This is autism.

      There is no one type of autism. There is no one exact cause. There is no one therapy or treatment that will help them all. But there are therapies that can help many, and research is finding new ways of helping to treat the issues children with autism face, and there is hope that there might be a day when we can find cures for some of the causes of autism.

      There is no national plan.

      What has been done to help teachers and educators share lesson plans and methods that have worked for the different types of autism they have seen? What has been done to enable teachers and educators to collaborate with each other?

      There is no national plan.

      A lot has been done to improve insurance programs under the ACA, but what has been done to improve the services for children with autism? What has been done to provide services through early children intervention? What has been done to reach out to children from minority and lower income families, who are often not diagnosed as early as they could be? Why must their treatment be delayed, when that delay hinders their chances for progress?

      There is no national plan.

      We need a national autism plan – NOW.

      We are heading to Washington with a call for action on a national plan – NOW. We are asking our leaders to respond to autism with the urgency it deserves – NOW.

      Washington – here we come – because we need to help our families – NOW.

  23. Pingback: To mashup/parap… | Walkin' on the edge

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