lest ye be judged

~

I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that – but challenges and all, autism is part of who she is.

But I don’t claim to speak for anyone else. I stand in a unique place with a unique child, just like the millions of other unique parents with one of a kind children. I certainly don’t claim that no one should seek an all out cure RIGHT THIS SECOND. Of course they should. And I will stand beside them as they do. I can’t make that decision for anyone else. Hell, I’m admitting that I don’t even feel like I can make it for my own kid.

Middle Ground – Diary, September, 2009

~

The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.

I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.

Words matter.

The White House Part Five – A Spectrum of Words – Diary, April, 2011

~

When you judge another, you do not define them, you define yourself.

~Wayne Dyer

~

I’m about to wade into some treacherous territory, my friends. Territory that I typically try to avoid at all costs. But I can’t help it. Because I’ve been chewing on this for days. And when I chew, I write. It’s what I do.

Last week, I wrote a post that seems to have made its way around the Internet. According to WordPress, it’s been read by nearly thirty-nine thousand people in the last seven days. Which is humbling. And quite frankly, a little terrifying. Because since I can’t possibly name thirty-nine thousand people, I no longer have any real idea of who my audience is, meaning that I have no idea how y’all might read what follows. And even scarier, it means that you may not know where I’m coming from as I write it.

But I have to write it.

At the risk of boring to tears those of you who have been around here for a while (and have I told you lately how grateful I am that you stick around?), I’m going to try to give the new folks a quick sketch of who I am and what I believe. And since none of us has time for the long version, I’m just going to share Diary’s comment policy. Why? Because I think it sums it up pretty well. And it’s a whole lot quicker than regurgitating everything I’ve ever written.

So here goes ..

My greatest hope is that the discourse on this blog and its accompanying Facebook page can serve as examples of environments in which compassion, understanding and mutual respect are paramount.

That said, I publish nearly all comments, but there are rare exceptions.

I have long been frustrated and deeply saddened by the chasms in the autism community. I will not allow Diary’s comment section to become a megaphone for the anger that serves to keep us divided.

I will not abide personal attacks, either on me or my readers. While I actively welcome constructive disagreement and respectful discourse, this is not a forum for unproductive anger, particularly that which is directed at one another.

While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.

From the bottom of my heart, I thank you – not just for sharing in our family’s journey, but for joining the conversation. And in so doing, respecting each other, supporting one another, and finding ways to bridge the space between us.

It is in that vein that I write the following.

**

If there’s one thing that we’ve all learned as autism parents, it’s that gross generalizations are almost never appropriate, accurate or helpful to us or our kids. We spend a lot of time and energy reminding the rest of the world that when you’ve met one person with autism, you’ve met just that – ONE person with autism. Although autistic people arguably share similar traits, our precious children are as different from one another as .. well, we are from one another.

I don’t know how many times or in how many ways I can say it – autism is one word but there IS NO ONE AUTISM.

So to say that autism is categorically, unquestionably, lay down the hammer and refuse to entertain the existence of any other possibility a lifelong condition for every autistic person and that no one’s neurology can EVER change has far too many quantum leaps, assumptions and absolutes for my comfort. (Hers too, by the way.) Nor do I believe that EVERY person with autism has been environmentally injured or that EVERY person with autism can or will ‘recover’ by undoing said assumed damage to their wiring through biomedical treatment.

Both of those assumptions insist upon gross generalization. And I’m not playing that game.

There are so many kinds of autism – so many underlying conditions that can create autistic characteristics and lead to behavioral diagnoses of ASD. I don’t doubt that some are purely genetic. I don’t doubt that some are based upon seizure disorders and other neurological conditions. I don’t doubt that environmental injury is real.

I don’t claim to know what the culprit – or more likely culprits – may be. I tend not to think that it’s as simple as mercury or an overload of vaccines, but if I told you that I’ve never wondered about the effect of the thimerosal in Brooke’s flu shot years ago, I’d be lying.

While I think that vaccine-induced regression is far rarer than some would have us think, I certainly don’t have the audacity to doubt the heart-wrenching stories that I’ve heard some parents tell. I can’t. Who am I to call another parent on this road a liar?

Luau and I have not pursued bio-medical treatment for our daughter. We have scores of reasons. Some are for public consumption; some, out of respect for our daughter’s privacy, are not.

The bottom line is that after exhaustive observation, research and testing – and I do mean exhaustive observation, research and testing – my husband and I made the judgment call that biomed is not the right path for Brooke. Nothing in our world is static, so that decision, like all the others we make regularly on her behalf, remains open for debate. As factors change with time, we plug and replug them into the equation. We recalibrate. We reassess. We discuss. We decide again.

We research diet and read voraciously about new interventions. We calculate risk versus possible reward. Constantly. And so far, our answer has remained the same.

Brooke has shown no sign of gastrointestinal distress. She has not appeared to have any kind of sensitivity to particular foods. She has not shown any indication of heavy metals in her system. We could not find any sign that would lead us to believe that biomedical intervention would help her. And, FOR US, it therefore wasn’t worth the risk of finding out.

Both Luau and I are medically cautious by nature. We are exceedingly uncomfortable with taking anything ourselves or administering anything to our children that hasn’t been scientifically tested to within an inch of its life on a large scale over a long period of time. Perhaps we are overly cautious. So be it. The decisions that we make based on that excess of caution are ours alone.

So that is what WE do. That’s what WE have decided. For OUR kid. And none of that has any bearing whatsoever on what anyone else might do. What they might have decided. For themselves or for THEIR kid.

I would never deride anyone else’s choices regarding their child’s care. Even if I find a particular treatment personally abhorrent, I can only find it so through the lens of my own experience with my own child, therefore rendering my judgement irrelevant at best and fatally flawed at worst.

It is in this vein that I feel I must say – and have the right to say – the following.

Do not EVER judge me nor any other parent for the choices we make on behalf of our children. You don’t know me. You don’t know my child. You sure as hell don’t know what goes on inside our home no less inside her mind or her body.

Just because you are convinced that something worked for your child, do not presume that it will work the same way for mine. My child’s autism may have an entirely different etiology than your child’s. My child’s physiology may be dramatically different from your child’s. By all means, share it with me. I’d love to hear about it. I’ll rejoice with you and then I’ll make my own decisions about whether or not it might be an appropriate intervention for my kid. Do not EVER call me lazy or tell me that you pity me or my child if I decide not to pursue it.

Don’t ever so much as imply no less say outright that I don’t have hope or aspirations for my daughter because I have chosen a different path than you have. And for the love of God, don’t dare refer to my acceptance of my child or her autism as ‘an excuse for inaction’. I cannot tell you how offensive those words are on so very many levels.

Yes, I choose to accept my child and – not despite – her autism. For me – for us – that is what feels right. I also do everything in my power to help her to mitigate the challenges that her autism presents. That also feels right. I also happen to choose to use my energy to make the world a better place for ALL of our children. Because that too feels right.

None of that may work for you. And that’s OK. It doesn’t have to. I would never judge you for it.

If you, on the other hand, have decided to hold me in contempt for the choices that I’ve made for my daughter, please …

Keep it to yourself.

~

71 thoughts on “lest ye be judged

  1. BRAVO!!!
    too often people hear “my son has autism”and take it as a free for all to judge every single thing I do. We choose to keep him GF because when we dont his entire body becomes his enemy with patches of raw skin everywhere. We have tried so many things and some helped…some didn’t.
    my point is that JESS you are an incredible mother to your children and an amazing support to all of us. I am sorry if someone or something made you feel less than supported. We all need to stick together because none of us should have to do this alone.

  2. Very Very well said! You are exactly right, everyone is different we all make the best decisions we can for our child and our family.

  3. If anyone had actually been reading your blog they could never say that there is any “inaction” in your household and even just as a reader I say how dare they? How dare anyone that isn’t in your household comment? From the other side of the world, thanks for sharing as much as you do because you help so much more than your own family.

  4. It’s hard to imagine any comment that can do anything more or add anything to what you’ve said. LOL but of course that won’t stop me from trying :-). I don’t know what in that sea of 39,000 readers led you to chew on this and write so passionately about it, and I suspect the ones who need to hear what you said from your heart just might not be open to learning from your perspective but if you had never written it, there would never be ANY opportunity for someone to learn from it or for us to say how much we care. So thanks!

  5. We would all be so much happier if we would stop wasting time judging each other. Great post, Jess.

    Reminds me of the MLK quote: I have decided to stick with love. Hate is too great a burden to bear.

    • Never, ever apologize for sharing what has worked for you or your child! I am always grateful to those who offer new avenues to explore. 😉

      • My kid (only child – now 18) doesn’t have autism but he did have learning difficulties throughout the whole of primary school.

        There were no books left to read in the house so I picked up the Arrowsmith book my mother had lent me and have not been able to put it down.
        I just commented again on your post today.
        I can’t believe anybody has given you flak!
        Again, I think you are amazing and I am very interested in following your progress with your delightful little girl. Jx

  6. Ditto your mom!

    I don’t know what the ratio of earnest readers to jerks is, but I’m pretty sure it’s greater than 39,000: 1. : ) And, finding the sunny side here, I’m so glad that those other lucky readers are finding DOAM. I hope they come back, learn, share, contribute.

    Karin

  7. Jess, I completely agree with you, we should not judge others. I am sorry that it seems that someone from “my” community of biomed peeps had such harsh things to say. I read your blog daily as email (comes right to my email so I don’t forget to read)

    It doesn’t bother me that you don’t do biomed. Like you said, it’s you and your family’s choice.

    I do want to tell you however that there is a lot of science behind what WE (my family) have chosen to do, and mainstream medical support. We are not using renegade, expensive treatments not covered by insurance.

    We are mostly following the mito cocktail as seen here:
    http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934635/k.6546/Treatments__Therapies.htm#Supplements We do NOT have a confirmed diagnosis of mitochondrial disease (a long process if disease is not very evident,) but since these supplements only serve to support mitochondria, there was no harm in trying them, from our perspective.

    We DO also use dietary interventions which I did not think would matter, but have mattered. Trial and error, just like everything else. 🙂 (We have a family history of IBS and celiac, so this choice to TRY was dictated by that!)

    We’ve also used speech and OT, social skills groups. 🙂

    I just wanted to comment here so that you will know that there are people like me reading your blog, choosing biomed, and NOT judging you. 🙂

  8. Very well said Jess…. I think you guys rock and your kids are very fortunate to have you and your husband in their court.

  9. It saddens me that you had to write this. I’ve been following you for years and look forward to every single post. I usually don’t comment because your words and the comments of others usually speak for me. I have never read anything that suggests you are nothing short of an ambassador for not only your daughter, but for other parents and caregivers of those on the spectrum. I thank you for each and every raw post. It lets me know I am not alone in my struggle and you have my upmost respect and admiration,

  10. Once again I find your words inspiring and amazing. I’m so sorry that you HAD to write this post in the first place, yet so glad you did. As the parent of two neuro-typical children I can say that your sage words apply across the ENTIRE “parenting spectrum.” My wife and I find that we are often on the receiving end of judgement and snickering, etc. by other parents for the choices we’ve made for our family. From our crazy work schedules (which allow us the MOST time to spend with our children), to our choice to NOT send our kids to daycare, and even how we choose to discipline them…

  11. THANK YOU!!! ❤ We are fairly new to the Special Needs community, our daughter was officially diagnosed in November 2011, and I must say it was VERY discouraging in the beginning when all I could find was angry, bitterness toward everything on and off-line. We do not feel that our daughter needs to be fixed or recovered. She is perfect in her own right, and just needs help achieving her God-given potential. Her road is not an easy one, and we struggle every day to walk it with her, but those struggles make all the accomplishments that much more joyous. We try not to judge others, because we have not walked their path, and only ask that they do not judge us in return. How we assist Beth, works for us and only us, I only share our experiences in the hope that someone else who is struggling may see that there is hope and light in every situation. Thank you again for sharing this and being so honest, you are an inspiration and your daughter is truly blessed to have such an Extraordinary mom! God Bless your family! ❤

  12. I’m so sad that a comment like that was wielded as a weapon toward you. How offensive! I want you to know that your writing has not only inspired me and offered me a daily dose of support but really and truly you have made a difference in my life and the life of my family. I hope that writing this post today has allowed you to purge any of the negative feelings that were associated with that comment. Your writing is a gift to us all and it is truly a pleasure to read about your family each day. I think you & Luau are amazing parents and your girls are a true reflection of that.

  13. We have chosen a similar path as yours… your daughter sounds much like mine, just older. 🙂 Our version of a behavioral approach means hours and hours of driving to and from therapies, having therapists in and out of our home all the time, EI programs that are now transitioning into school programs far more intensive than our NT kids had… I can’t fathom how anyone could call that lazy, and it’s that much more offensive because my DAUGHTER is the one working so hard to be her best self. I’m sorry if someone let their own arrogance insult you and Brooke. Anyone who reads your blog should know that you and your family are nothing less than 100% dedicated to Brooke’s best interests. Thank you for being a voice for unity.

    “We are only as strong as we are united; as weak as we are divided.”
    – Albus Dumbledore 😉

    • Amy, it’s so true that our kids work harder than anyone…we are just paving the way. My son is almost 13 and I am still in awe of his determination.

  14. ” I also happen to choose to use my energy to make the world a better place for ALL of our children. Because that too feels right.”

    You do that for us parents too. You make the world better for us.

    And amen to the rest of the post.

  15. If the 39,000!!!! readers take even a fraction of your words to heart, the world will be a much better place for all of us. Thank you Jess!

  16. Great post! I always say parents are the experts on their kids & know what will work best for their family. I think the most important thing we can do is respect one another & our kids. Thanks for always promoting respect & peace to the community.

  17. Amen! Each of us our on this journey together and seperately. There are so many ways to get from point A to point B or from S to W! We each have tried many different treatments, therapies and approaches. Not one of us is wrong! Not one of us does not want what is best for our kids! I, too, have been judged harshly for not choosing to follow a specific diet or choosing to end biomed treatment because it was not working for us. Not saying it does not help some kids, it just didn’t help our’s! After 10+ years of walking (crawling, limping, skipping…) this journey there is one true thing. When you have met one child with autism, you have met ONE child with autism. It really is just that simple. Love to you and to your Brooke and my Bella!

  18. I ran across your blog from a friend reposting the “You Rock” post. I am a mom of 2 kiddos with ASD’s {Gabe, 8, Autistic, and Kylan, 12, Aspie} And, from the articles I have read I can tell you are a great advocator for your child. You are definitely right in saying that autism is not the same for different people. My sons were both diagnosed just over 5 years ago, while we were living overseas, my sons and I moved back home, while my husband fulfilled his overseas commitment. It was a scary time. Here, 5 years later, I am starting to finally get a grasp on how things work, and am amazed at the lack of respect that families with ASDs get- from the community, the schools, and even the individual service providers. Anyway, I am off on a tangent ;)…

    I just wanted to say”Hey!!! Yea You!! You Rock!!”
    😀

  19. Well said! Our journeys may all have a similar path, but each path has many different homes along the way. The ones I choose to visit may be vastly different from the ones another ASD parent chooses to visit. My hope is that we all reach the end of the journey without throwing rocks at the homes of others!

  20. Once again, thank you Jess! You so eloquently affirm all that I believe about parenting our beautiful children. You do rock.

  21. I actually blogged about the schism in the autism community yesterday. It seems to be really really apparent this week, i’ve seen lots of blogs on it. I’m on the other side of the fence – we had a clear regression (we’d delayed vaccines, and so were able to document it and it was stark), and so we have pushed for biomedical interventions. Which have made great progress, but we’ve done them in parallel w/behavior therapy, OT, and ST.

    As i said on my blog… you’d think as parents on this very difficult road, we could get along. Without the infighting, we’d be a force to be reckoned with.

    So thank you for your post – you inspire me 🙂

  22. Jess – I am a full-force biomed parent with a 90% recovered child that we never saw regress. I struggle so much with this issue, how do I share my knowledge with parents, many who are good friends, who choose not to take this path? How do I not judge their decisions, support them and not step on their toes, when my heart and head scream that I’ve seen this work for so many? It’s been a heart journey to find that middle ground, and your blog has helped so much to do that. This was a beautiful post, and I pray that everyone that reads it does so with the same heart that it was written with. Judge lest not ye be judged. Even when it is hard. Thank you for all you do.

  23. Even if people remain ignorant, I hope you feel better. You showed remarkable restraint, and, I suspect, censored yourself heavily. I kinda wish I coulda read the uncensored version…I’ll bet it was spicy!

  24. Hearing criticism is hard, and no matter how off base it is, it still hurts. Please know that the vast majority of this community of ours appreciates all that you do, and support you every step of the way.

  25. I agree with yo that vaccine injury is much less prevalent then many think, but you’re right, we have no right to judge any one else on this journey. I think most of us understand and respect your decision not to pursue biomed. It’s not for every one, and certainly not for every child. There is no one size fits all approach to helping our children. I can’t believe anyone would doubt your tenacity and vigilance to help Brooke. You of all people, go above and beyond to do what you feel is right for HER.
    When I wrote you about GABA I did so knowing ful well you do not do biomed. But when i saw how it helped Cymbie with her anxiety. How it calmed her, and made her so much more happy, I thought of Brooke and had to tell you about it. I know that doesn’t mean it would work for Brooke, or anyone else. But I wanted to let you decide if it was something you wanted to look more in to. I’m sorry if I crossed a line, or led you to feel in any way that I was assuming you weren’t doing enough. I KNOW how much you do…well, maybe I only know the half of it…but I respect you for your endless fight to mitigate her challenges.Pity is the LAST word I would ever use in regards to you or your child. She is lucky to have a wonderful family and have you for a Mother.
    I’m so sorry you felt you had to write this post.

  26. Thank you for all you do, to give each and every one of us a sense of community and understanding. I love starting my day with reading your blog…your thoughts, feelings and experiences give hope and bring light to so many. Thank you!!

  27. Jess,
    Thank you for continuing to do what you do in spite of assholes that would make it really easy for you to just pack it up and go home.
    xoxo,
    Kate

  28. Like many others have said, I am so sorry that you had to write this post, but so glad you did. Autism “treatment” is a sticky thing, that we, as parents, have to feel our way through, and constantly re-evaluate. There are pros and cons to each choice in each situation. No two children are the same, and each of us needs to be able to support each other in our individual choices for our children. Those of us who follow you have zero doubt that you and your family are doing your absolute best for Brooke. And it doesn’t matter what we think, anyway, it only matters how you and Brooke feel.

  29. You are my hero! I often say that I would never judge another parent’s journey. Your post just captured exactly how I feel. Your words are so well chosen- almost as if you are reading my mind. Thank you!!! Thank You!!! THANK YOU!

  30. Amen, lady. I LOVE your positive spirit and am inspired by your continued focus toward improving the world for all. Thank you for that and all you bring to our lives.

  31. Amen! Both of our children are on the spectrum, and both are so different. The same therapies haven’t worked for both of them. You HAVE to treat each child uniquely.

  32. I shouted an “AMEN!” after I finished reading this post. Well, truth be told, I shouted silently (oxymoron?), as I’m at work right now and probably shouldn’t shout out loud. 🙂 Thank you for reminding your audience, including me, that this journey MUST be without judgement. It’s the very thing we fight for for our children, and we should expect the same from each other. Thank you, Diarrhea Mom.

  33. You show such grace in your response. I can only hope 39,000 people read this post too and learn from your example.

  34. Wow Jess. Wow. I couldn’t have said it any better. We also have not taken the bio route etc. exact same as you. So I can only imagine what was said and what that feels like. You would THINK that the one thing an autism parent would learn is not to judge. Excellent post.

  35. I can’t imagine how scary it must feel to just be out there, all your thoughts and family’s business for the world to read, and the anonymous comments that come into your world, some good and some bad. I applaud your bravery and courage! Not many of us can do what you do. I think you and your family are awesome! Thank you for sharing and giving us parents a place to come, read and share too. This post is crystal clear, and I agree wholeheartedly – “come in peace or don’t come at all!”

  36. Wow. I mean, WOW Jess. I’m so sorry you had to write this. I feel like if I had to list one thing I’ve learned because of having a child with autism is not to judge. But it is still difficult. I think this was an extremely well written post. Passionate and heart felt and hopefully gets to those who NEED to read it.

  37. Jess,
    Thank you for this post. Once again, I must say that it reminds me that I am on the right path in the way I deal with each of the students I love…and, with their parents. I have put stops to arguments outside of my doors or asked parents having disagreements over the phone to “please, take it outside.” From where I stand, in what I do with these AMAZING kids, it doesn’t help them (in fact, just the opposite) to overhear their parents fighting over how they are being treated.
    I try my best to encourage each and every family member (because, sadly, there is a divide within the family too) to sit back and do what they feel is right for THEIR individual child. To examine the history, the progress that has already been made and then to very carefully weigh the pros and cons of any new “miracle” treatment or therapy.
    Sometimes, I feel as though I am sticking my nose into where it shouldn’t be..but I give no advice on which way to go…I have my own opinions on that and believe you and I are very much aligned there. I just ask them to be cautious and thoughtful when making decisions.
    I see progress in “my” kids every day, and all I do is simply believe in them and challenge them to go just a *little* further than they did before.
    Thank you, again, for your words that help to solidify my passion.
    ~Wendy

  38. BRAVO!! BRAVO!! Once again you have put my thoughts so eloquently into words! Can’t tell you how many times I have heard the “have you tried”… “I read an article about this great treatment”. And, you know, so often I have wondered what it was about those words that annoyed me and then I read the part where you said acceptance was not “an excuse for inaction”.. it was like the fog cleared and there it was!! My son is 18 and has autism.. We accept him for who he is and when often asked about a cure, I say the same thing as you.. I don’t know where autism ends and Hunter begins. It is part of who he is. Part of what makes him the wonderful, sweet, special and miraculous person he is. I help him through this world and to find the tools necessary to navigate some things on his own but a “cure” has not been the goal. He has autism and will always have autism, just as he will always have beautiful brown eyes or his father’s curly hair.. it is who he is. I hope you don’t mind if I borrow some of your words the next time I face this situation rather than my previous response of “he has what we call plain vanilla autism”.. not vaccine-induced, no gut problems, etc. Again.. THANK YOU FROM THE BOTTOM OF MY HEART!!

  39. So glad to know that I am not the only one that is not looking to ‘fix’ my son, rather I’m looking to translate the world for him so he feels comfortable navigating it as an adult. He was only 12 or so when he read something about the hearings going on regarding the vaccine connection and turned to me and said “Mom, I’m happy you gave me the measles vaccine. Even if it caused autism, I wouldn’t be the same person if I didn’t have autism, and I like who I am. If I got measles I might be dead.”
    If you don’t think I went and found a corner to bawl in that night…

  40. When you have a child on the spectrum, every day can feel like a marathon. To be criticized or belittled for what you are or are not doing is devastating…I think our emotions tend to run higher than most when constantly gearing up for the next mile, or 25.

    I have nothing but respect for the path you’ve taken. Brooke is an angel and, truly, so are you.

  41. The other day, I found a very simple post on the FB page, Always Unique Totally Intelligent Sometimes Mysterious. It said: Autism Awareness (for Dummies) — Stop judging people you don’t know for things you don’t understand. Needless to say, I reposted. Why is this so hard for people to understand? Why do people even within the autism community not get this???

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