of evolution, advocacy, and a colorful patchwork of middle ground

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In formal logic, a contradiction is the signal of defeat, but in the evolution of real knowledge it marks the first step in progress toward a victory.

~ Alfred North Whitehead

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I’ve been struggling with this post. Wait, I take that back. I’ve been struggling with the ideas that I am going to attempt to wrangle into this post.

If you’ve been around here for a while, you’ve undoubtedly heard me talk about how my perspective on autism, along with my perspective on humanity and dignity and, well, just about everything else, has evolved pretty dramatically over the course of the last seven years. It’s been quite the journey. At a couple of stops along the way, I was under the naive impression that I’d reached my destination. As it turns out, there was no — is no — destination. Just a long and extremely windy path toward better understanding.

I consider myself an accidental activist. The first time that I was refered to as an autism advocate, I rebuffed it. I’d never really thought about slapping a label on what I was, or what I did. As time went by though, and my daughter and I began to find our voices together, I became more comfortable with the title. After all, when you’re standing behind a podium making a speech, it becomes pretty difficult to avoid calling yourself, well, something.

When I first spoke, I believed that I was speaking for those who couldn’t. My mission, as I saw it, was to give a voice to the voiceless. And I thought that the way to do that was to talk about what I believed that they wanted and needed. My intentions were good. I wanted to help people like my daughter who, at that time, had no real functional way of communicating with the world.

Over time, I began to see the folly of my thinking. Slowly but surely, I started to understand that my job was not to speak for my daughter, or anyone else for that matter, but to help build a platform upon which she – and they – could speak for themselves.

As I found my footing, I turned increasingly to autistic friends and self-advocates to better understand their experience. Their lives were different from Brooke’s, of course, often, and especially in the case of the advocates, quite dramatically so, but there were similarities. Enough to matter. Enough to make me stop in my tracks and question each and every assumption I’d ever made. Enough to take my advocacy in a completely different direction.

The differences were enough to matter too, but I wasn’t really ready to acknowledge that. There was a place to turn. And that was enough.

In 2009, I wrote about my nascent understanding of the school of thought known as neurodiversity. Clearly, I was beginning to feel my pendulum swing in that direction, but it was important to me to clearly state that my process was mine – that I could speak only for myself. This is what I wrote.

From Middle Ground, September, 2009 ..

Over the past three years, my view of autism has evolved, and continues to change with each passing day. In that time I have come to see that there are as many approaches to autism as there are people on the spectrum. That there as many right answers as there are questions. That there is no one size fits all solution to any of it.

Early on, I was horrified and angered by what I read of the neuro-diversity movement. I simply could not embrace the idea that something that in so many cases was so debilitating should be celebrated. I could not look at my friends who had never heard their children’s voices – who were trying so hard to contain the smearing of feces on walls, whose children were biting and hitting themselves, hurling themselves on the ground, running headlong into traffic, struggling through every aspect of their day – and tell them that those ‘differences’ should be celebrated. I saw only the extremes, and the need for immediate action.

Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it, but I don’t think so.

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.

In August of 2012, I looked harder at some of the inherent contradictions that swirled around my middle ground. As I churned my way through them, I rationalized troublesome feelings while cautioning against their unfiltered expression. ..

From Rallying Cry – August, 2012

I’ve heard it said that you can’t hate autism and love a person with autism at the same time. I don’t think that’s true. I think you can abhor the thing that makes your child’s life hard. I think you can despise the challenges that he is forced to face. I think you can desperately wish that she didn’t have to struggle with the things that come so naturally to others. I think you can love your child with the ferocity and tenderness that can only coexist in the heart of a parent, while simultaneously hating the thing that denies him an effective method of communicating his most basic wants and needs.

But, I worry – really worry – about the consequences of that anger – particularly when it’s expressed in front of our kids.

And then something began to change. My belief system radicalized. I found myself moving toward a land of absolutes. A land dominated by Nevers –

Never demonize autism – Never separate it from the autistic person – Never focus on the challenges – Never belabor the negatives – Never conflate co-morbid conditions with autism itself – and Never, EVER use the word cure.

A land that, if I’m being really honest with myself, is a lot easier to inhabit with a child who, while challenged, can now, for the most part, communicate her needs.

This past March, I wrote the following.

From Hate, March, 2013

No matter what our view of autism’s origins, I think we can agree that it isn’t an appendage that can be taken on and off at will. It travels with our kids. IN our kids. As PART of our kids. And as such, it’s simply not reasonable to expect them to understand that we loathe autism but we don’t loathe them. Or that we hate this thing that afflicts them, but they shouldn’t hate themselves. Because even if we could get them to understand the difference intellectually, we’d be hard-pressed to get them to FEEL the distinction. And after the other night (and last night again and this morning again while Katie was still coughing and Brooke was still screaming), I was convinced that if we continue to tell these kids, through our words (to them or in front of them) or our actions, that we hate / fear autism, we are teaching them to hate / fear / pity themselves for having it. People do not separate themselves from what they have / how they act / what they feel / how they experience the world. And we as a society don’t either.

It was tough post. A tough one to write and a tough one to live through. I stand by it. I stand by the fact that the way that we talk about autism matters. I stand by my belief that demonizing autism is a dangerous, if not fatal game.

But, to me, that post (when read in its entirety) is representative of a step too far. Not because it’s inaccurate. I don’t think that it is. But because it fails to acknowledge that there is more to the story.

The flip side of the demonization of autism is broad-stroke glamorization. Or, if you prefer, glorification. At the very least, it’s sanitization.

And while I’ve talked an awful lot here lately about the perils of the former, I’ve become increasingly uncomfortable addressing the latter. And most recently, that discomfort has begun to feel more like cowardice.

The other day, I saw two PSAs released by the Autistic Self Advocacy Network (ASAN). You can watch them HERE and HERE.

They are wonderful. I particularly love the one featuring Amy Sequenzia, whom I greatly admire. Together, they tell an important part of the autism story. But, like my post above, they don’t tell it all.

In the second of the two spots, Katie Miller, an autistic woman who sits on ASAN’s board says,

I’m autistic. I’m not a tragic figure. I’m not broken. I work. I’m happy. I love my family. I’m an artist. I grew up. I like most people! But… some people, I dislike. Especially people who say they speak for me. Because they don’t. I can speak for myself. So let’s talk. We may even become friends.

Clearly she can speak for herself. And she does so beautifully. And it’s so, so important that we, as parents and as a society, recognize, acknowledge, respect and support her ability to do so.

But while Katie and many, if not most, autistics can speak for themselves (understanding that I’m using the word ‘speaking’ as an umbrella term for communicating in whatever capacity they are able), asserting or implying without qualification that all autistic people can “speak” for themselves is as dangerously misleading as asserting or implying that they can’t.

The autistic people in the videos, along with all of those whom they represent, should, without question, be the ones leading the conversation about their own fate.

However, it’s critical to also recognize, acknowledge and respect the fact that not everyone currently has the tools to be able to communicate the way that these folks do. A person without functional communication, is, by definition, not able to participate in the conversation or even to express whether or not they’d like to.

Ed note: please, please don’t misunderstand me. I am not saying that those who can’t currently communicate lack the capacity to do so. But there are an awful lot of people out there who have yet to find a method of communication, facilitated or otherwise, that is accessible to them. Meaning that in this moment, even if their interests are theoretically represented, they are excluded from the conversation.

Much of the debate around communication in the autism world revolves around shifting responsibility, or at the very least more equitably sharing it between the expressor and the receptor of ideas. I don’t disagree that we, as a society at large but even more saliently as people who love those with communication challenges, have a responsibility to do the work that it takes to decipher their language, whatever it may be, just as much, if not more, than they do to express themselves in ours. But sadly, it’s not always possible, no matter how hard we try.

I have very close friends whose children do not have functional language of any kind. No matter how much they adore their children (and, by God, they do), no matter how much they fundamentally respect them (and, believe me when I tell you, they do), no matter how desperately they want to alleviate their children’s frustration by understanding what it is that they are trying to communicate (and, more than anything else in the world, they do), they haven’t yet found the magic bullet.

These friends have tried, and continue to try, offering every imaginable method of support and accommodation to their children. They aren’t trying to “fix” them. They’re trying to enable them to be understood.

They have, in most cases, quite literally dedicated their lives to becoming students of their own children, versed in every behavior that might be a clue to what it is that they are trying to convey. And yet, their children’s inner lives – their needs, their wants, their preferences, their pain, their joy, remain mysteries.

We’re not talking about parents who want these things for themselves. They can’t be dismissed with a ‘You just need to let go of your expectations,’ or, a ‘This isn’t about you.’ It’s not. It’s about trying desperately to understand what they can do to make their children feel safe, feel comfortable, be happy. What they can do to understand and alleviate the pain and frustration that leads them to unimaginable self harm. What they can do to respect them.

Margret doesn’t know it, but it was her words that cajoled me to acknowledge what I was avoiding. To see it. To say it out loud.

I still hear the pain in her voice when she talked about how much she’d gotten wrong. About how far off her assumptions had been about her son’s favorite color, his favorite food. How when he could finally tell her, she felt she’d been betraying him.

“These are human beings that we’re talking about,” she had said, her voice trembling with urgency. “Human beings with their own dreams and desires, who deserve to be able to communicate them, and to learn, to participate in and to contribute to society not just despite but through their differences. They are different,” she said. “And that’s what’s beautiful.”

Many self-advocates take issue with the ubiquitous puzzle pieces that are used as a symbol of the struggle to understand autism. “I am not a puzzle,” they say. And no, they certainly are not. They are human beings. Bright, fabulous, capable human beings who have the ability to say or type or letter board or somehow use some sort of technology to communicate that thought. No human being is a puzzle. But I think we can argue that the symbol of the missing piece of the puzzle is apt as a symbol, not of the people themselves, but instead of the key to communication for which so many still search.

To be clear, this is not an about-face. I still believe that no one should ever speak for anyone else. But it is a shift. My view of my role as an advocate is changing yet again. My job, as I see it now, is to ensure that those who can speak for themselves are able to do so. That when they do, their voices are heard and respected and that no decisions are made about them without them – ever.

But there’s more to it. Because it’s also my job to ensure that the world knows about those who can’t yet speak for themselves — not to make assumptions about what they want to say, but to help them to find a way to tell us what they want us to know. Supporting those who can speak for themselves does not negate our responsibility to also speak up for the rights and needs of those who can not yet be part of the conversation.

I wrote the following after returning from a White House forum on autism in April of 2011. There, I met (and was immediately in awe of) an autistic young woman named Katie. Yes, the very same Katie Miller in the PSA. Life is funny like that, isn’t it? Taking us on a journey of a thousand miles, only to find ourselves where we started.

So here I am. Farther along and yet, back to familiar territory. It seems that no matter how far I stray, I eventually come back to this, my colorful patchwork of belief and methodology here on the middle ground.

From The White House: Part Five – A Spectrum of Words, May, 2011

As Katie spoke, my heart ached for the adolescent that my child will soon become. For the teenager who will struggle with her differences. For the woman into which she will someday blossom. How will she put all of this together? How will she process these words? How will hearing that this fundamental part of her being is ‘a crippling disease’ affect who she will become and how she will feel – not just about her autism, but about herself as a human being?

But then what about Idil’s son? What about the eight year-old Somali-American boy, who like so many of his peers has no words? How does Katie’s No Pity campaign affect HIM?

What about all of the kids who have no voice? The ones who have no viable means to communicate their most basic needs to the world around them? Who live in a state of constant frustration? What about those with no sense of danger? Those whose constant melt-downs become unmanageable and unsafe? What about those whose self-injurious behaviors become so severe as to cause permanent damage to their homes, their bodies, their brains? What about those who don’t sleep? Whose diet is limited to the three things they can tolerate? What about those who paint the walls with their own feces well into their teens? What about those who run? Who drown in nearby ponds because no one could find the child who couldn’t respond to his name? What about those who are abused by people who know they can never report their crimes?

How does the public discourse affect THEM when it turns to talk about the gifts of autism? About the happy rainbow of neurological differences? How does it affect their parents’ desperate quest for help and resources and answers when the public is being told that autism is something to be celebrated? When they live a life in which the disability looms so large as to obliterate the hope of finding something – anything – to celebrate in their autism? What does No Pity mean then?

Above all others, this has been the topic that has haunted me since my time at the White House. I’ve been turning it over again and again, worrying it between my fingers, slowly pulling its threads to see how they are woven together, to see where they come apart.

Autism is one word, but there is no one autism.

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.

Today, I’d change one word.

For.

We can’t speak FOR anyone. We can only support those who speak for themselves as we concurrently do our damnedest to ensure that there’s no one left who can’t.

*

32 thoughts on “of evolution, advocacy, and a colorful patchwork of middle ground

  1. This is tough stuff, because there is boilerplate argument with it regardless of where you fall.

    I feel like Lily, who falls somewhere in the “middle” of the spectrum, seems relatively happy. It’s easy for us to accept, embrace and even celebrate the differences that make her unique and special to us, or easiER, perhaps, than I assume it would be if we were dealing with fecal smearing, self-injurious behaviors, aggression, elopement, etc.

    Your audience is pretty Jess-friendly, but I suspect this post will be discussed by other folks who will be less receptive to the perceived shift.

    Still, I like it.

    • “Your audience is pretty Jess-friendly”

      I’d argue that mu audience is pretty friendly, period. I’ve been very, very lucky that way, but I’ve also been pretty clear that I won’t allow mudslinging here – at me or anyone else. But that’s never meant that I don’t welcome constructive disagreement.

      I do hope that the wider world out there remains ‘friendly’ as well, but I hope it’s clear that by ‘friendly’ I only mean civil and productive in discourse rather than argumentative for the sake of argument or personally destructive. People can vehemently disagree with one another and still be ‘friendly’.

      Just sayin.

  2. “We can’t speak FOR anyone. We can only support those who speak for themselves as we concurrently do our damnedest to ensure that there’s no one left who can’t”.

    Amen! You said so much more than that. I know it was difficult.

    Love you,
    Mom

  3. I just have to say yes. Brilliant post. This is how I’ve felt for a long time. There is no one person, organization, or school of thought that can speak for every autistic, and the goal should be to help all autistics gain their own voice – in their own way – and speak for themselves.

    For many children – including mine – we are still working to achieve that goal. I hope and pray for the day that my boy can take the mantle from me and speak for himself, but until then, I – like so many others – must speak out to get him what he needs to find his own voice.

  4. I love your blog and when I 1st found it 2 years ago or so, I went back and read every single post ever written. There have been a few things said along the way that I have not agreed with. Mostly dealing with the above topic and with feeling like the shift towards paying attention and listening only to more “higher functioning” (for lack of better wording) people seemed to leave my family out of the loop, because my son cannot (yet) speak for himself in any way. That being said, I am with you 100% on this post. I will be sharing.

  5. I think your last line is so important. I’ve written and deleted a comment here now five times because I can’t get the words just right. I guess all I can say is thank you for writing this and I know I have friends on all ends of the spectrum who will thank you too. I guess that makes me “Jess friendly”. 🙂

  6. This was an incredible post Jess. And while these are difficult concepts and perspectives to navigate with grace, these discussions – as you are well aware – are absolutely vital. The “answers” we collectively seek will always remain individual and subjective, but they will never come without the questions, as uncomfortable as they may feel at times. More than helping to continue these discussions within the murky waters, your posts continue to inspire: The beauty in watching your daughters’, and your own, journey to understanding provides gentle encouragement for your readers to do the same.

    My thanks, as always, for reminding us all of our shared journey.

    A small note: The last sentence of the paragraph above where you linked to the White House forum on Autism post [Begins with, “Supporting those…] seems to be missing the word, “not”. This was a wonderful post, and the omission seemed a little out of place.

  7. My child is non-verbal and a little kid…I DO speak for him in 75% of his life. Who does NOT speak for him and I hope never does?

    ANYONE ELSE including any adult with autism (autistic adult).

  8. Very well done. I agree with you…those who can speak for themselves must do so. They can teach us so much. For those who are unable to communicate yet, we must find a way…we must.

  9. Beautiful – I couldn’t agree more with these words: Supporting those who can speak for themselves does negate our responsibility to also speak up for the rights and needs of those who can not yet be part of the conversation.

  10. Why does everything have to be a argument? This is part of your journey,your daughter’s journey on the roller-coster ride that is Autism. All our path in this journey are winding,bumpy and smooth in parts. We all get there in different ways,with different obstacles along it. What I like about you and this particular community is that it a safe place to land and feel welcome. Understanding of this journey,because we have all been there at that particular time and place. I’ve learned so much from all of this community. I feel blessed in that. I always say about my Ainsley,she may not be where she is supposed be in her development,but she always get there when she is good and ready! I think that can be said about all of us in developing our own thought process in advocating for our children. I like it too! : )

  11. Yep, right there with you on the fence, which on some days feels like the barricades, and sometimes is just a better view of the surrounding fields.

    Karin

  12. Thank you for this post and for bringing Margret in to your discussion of autism. I have always agreed that when it comes to autism if you have met one person with autism then that is exactly what you met.. one person with autism. Not the identity of autism.. there is no one autism so there is no one advocate for autism. It IS a spectrum experienced by all of us differently. We are all fighting so hard to have the world accept neurodiversity but can’t seem to manage to accept it within our own community. I admit that I am often frustrated by the high-functioning, Aspberger’s face of autism presented as “this is autism” in the mainstream media (this, of course, is the view from my particular corner of the world). They leave many of the people in my life not quite getting that what they see is NOT Hunter. Hunter has very limited functional language but, yes, through all the challenges I love the specialness that he brings to my life and the world through his incredible visual memory, amazing ability to pick up technology, outstanding visual puzzle skills and so many other things. This is what I express to him.. how wonderful I think he is for his uniqueness, but yes, I do cry when he melts down or is so hurt and frustrated, because, as I tell him, it hurts more than he can ever know that I can’t help.. I can’t make this all easier. If we want acceptance.. how about we start within our own community.. we all have our own story and I think it’s important that we are united to help the rest of the world understand this basic concept of the spectrum.. a SPECTRUM.

  13. I love this. My three children are all over the spectrum, and it seems that while I am teaching my older, verbal children to celebrate their differences, I often feel like my youngest, severely autistic, completely nonspeaking daughter is left out of these conversations. I just want so badly to know what she is thinking, what she is feeling, where it hurts, or why she is scared. I saw the PSAs. They are great – for my older, less affected children. But for my most profoundly affected…. I want that community for her, but many days, I just don’t know how she’ll get there.

    I know you are constantly acknowledging that yours is just “one house on the block.” But you have a platform here that few mothers of severely affected children have, and while none of us would claim that you have any kind of responsibility to any but your own children, I have to admit, that when you do look in our direction, and you – as someone with a platform, accidental or not- shine a light on a similar but entirely different struggle. It feels like someone is noticing. It might not seem like much, but at the end of a day like today, it can mean everything. So thank you.

  14. I spent two hours today in a tight little room with the superintendent and the vice principle at my children’s school supporting/”speaking for” my children’s needs = advocating for them. My children are both high functioning, yet they cannot express their needs and their frustrations in ways that would benefit them. Because they are HF they are often disregarded and even expected to just do what is asked of them. I hear a lot of: “you mean they are “on the spectrum” when you say autistic”, or “we’ve never seen these “meltdowns you say they have”…

    I have to advocate and explain and readjust people’s perceptions of what autism is (in our case) every single day. And this, for a mother with children who speak and even (often) make eye contact and interact with others. I cannot imagine the plight of a parent whose child cannot express to them and others what they need and want except to often (maybe always) become frustrated and have a meltdown of epic proportions. I agree that sometimes whether your child is high or low (man I hate those terms) on the spectrum, parents/guardians need to support their children, to be their voice when they need it. And the hope is that those kids will start to communicate effectively with others (however they might do so) one day. And if they never do, at least someone kept working and trying for them for as long as they could, always believing there is a way to break down the wall between what society considers “communicating” and truly how many different ways to communicate there actually are. Great post.

  15. As usual you express what I’ve been thinking more articulately than I can. I’ve been reading the Loud Hands anthology, and appreciating the viewpoints expressed by the Self Advocates, but I can’t help but worry that they are a small percentage of the now millions of children and young adults identified as on the spectrum. While I support their right and ability to “Speak” for themselves, I worry about protecting and teaching those who have not yet been reached and who cannot communicate for themselves.

    Ari, Mom to 2 grade-school-aged Aspies – where the challenge is not in understanding their wants, desires, and opinions, but in getting a milisecond to interject her own

  16. Jess, an excellent post. I suspect that many readers of your blog have gone through their own evolution, I know I have. Our perspectives change, our understanding deepens. And if we’re keeping our minds open, that journey and evolution will more than likely continue.

    As broad as the Autism spectrum is, the needs and wants, challenges and strengths, and hopes and dreams of the children and adults on the spectrum are just as wide ranging. No one person can speak for all. It is important for people to be able to communicate for themselves, and when they do, to be heard and understood.

    Having read this and your previous post, I like the idea of focusing on the possibilities. And continuing to do all we can to help everyone find a form of communication that works for them, helping all voices be heard.

  17. Wow mama I never new your lil one had autism. Wow. This was a great write. Thank you for the work you do to help those who can’t speak speak. I’m more in aw of you !

  18. My children are on all areas of the spectrum that it is scary what and how to advocate for them. While they can talk, the functionality of their speech is limited to expressing what they want or need. Some can express emotions but not truly express what it is that they want…I don’t know how to say this…its getting hard for me to. My children are my world but I too fall under the umbrella of wanting them to be heard because what they have to say is so important but at the same time having difficulty understanding it myself and fearing that I am getting it wrong. Does that make sense?

  19. Jess- Thank you for pushing your comfort zone and sharing your journey with us. I think any healthy movement for change takes in questions and criticisms and learns to expand and grow and evolve over time. I look forward to watching that with neurodiversity as well. I hope your questions and those of others can help fuel growth. My own evolution has been similar to yours – from well meaning but ignorant mom -to the life altering paradigm shift of discovering the words of autistic adults – to beginning to wonder when we might be sanitizing the message to the detriment of some. I have these thoughts about the community, many of which i haven’t yet even found the words to form the questions. But, also on a daily basis I have these thoughts about my own son. How do I teach him and others that there is beauty and worth and perfection in every single strand of his dna while making sure the truth of his disability and the things he is simply not capable of at this point are understood so that I do not again find us where I do today, once again picking up the pieces after adults made the decision that a lack of discipline was all that was really wrong with my son. Keep searching and asking your questions, Jess.

  20. Thank you, thank you, thank you. I have a son with “high functioning” autism and a brother who has the most severe form of autism I’ve ever seen. I appreciate the thought you’ve put into this complex situation. There are no pat answers, and there are so many sides to every story, every autism. We need to make sure each voice is heard…or unlocked, if at all possible.

  21. You expressed yourself beautifully. I am the mother of a gorgeous boy for whom I would give my very life to hear him or show me his needs and wants. I believe that although people with autism should not be pity is unfair to say they are who they are or have accomplish what they have on their own. I have not met 1 mother of an autistic child who has not give her all for her kids. And those who have found their voices have founded thanks to a group of people (family, therapists, etc) who never stop believing they could. Our role is to help them and yes I want my boy to be who is, I don’t want to change him as I love him. But i wish i could ease his troubles who don’t let him enjoy things other children can. Our own journeys are personal and intimate and no journey or pain is the same. Like there is no 1 autism.

  22. I love love love your last sentence the most most most. How glorious it would be if the research were on how to help everyone be understood, and all the medical money went to real medical things, like alleviating pain and supporting personal and familial needs. And thank you for your support :). xxoo

  23. The constellation of autism is bigger than we know, filled with varying degrees of darkness and light. I believe acknowledgment and respect of that fact by all involved is a critical first step in working together towards effective, meaningful advocacy. Love this post.

  24. I “straddle” the spectrum with both of my sons, one who is HF, and the other whom I also dub HF but is on the severe end as well. I used to feel a sort of whiplash when trying to figure out where I personally fall on the spectrum in regard to these issues, but then I finally figured out at least for our family, there are shades of gray. Fortunately I’ll never have to speak for Zach (frankly, I often struggle to get a word in edgewise). Sometimes though I do have to speak for Justin, and I’m at peace with that. Just last week however he began to nod “yes” and “no”, plus he’s started to type a few words now. For the first time in ten years I’m reveling in the fact that my son has finally begun to advocate for his own needs without using his hands to push or prod us. It’s a beautiful thing.

  25. i didn’t comment yesterday because i had to really step back and think about this for a long time. this is an issue i run up against over and over, as i try to come to terms with my own life…and try to find out if i have a place in this community.

    i’ll just say flatly, for better or worse: i find the self-advocate community to be self-defeating. the message is too often one filled with bitter vitriol…but even worse, it’s a message of absolutes. i can’t find room for discussion in the self-advocate community. it’s just declarations about which words are off-limites…which ideas are off-limits…declarations about how others should feel, demands about how the issue is to be discussed, not to be discussed. it’s a list of rules…anyone who breaks them is a deemed an enemy of the cause.

    these issues are just too complicated to fit into a rigid, narrow ideology, no matter how “right” that ideology might be. doesn’t really matter whether nor not there’s a place for me in the community…what concerns me the most is: what about people new to the issue? parents, adults, kids….people going online to seek guidance? they need understanding…they need information…not a list of angry demands. i find that many people push away the very audience that most needs to hear the message of acceptance. again, the cause becomes self-defeating when it antagonizes, belittles, even when the cause is justified. it’s a communication issue and i’ve just been turned off in a big way by the nature of the communication.

    too often advocacy hinges on semantics: demonizing some words, deifying others. semantics is imporant…it matters…but it’s alienating, as well. semantics very often is a power game…a game of trying to “own” words. a game of controlling the dialog. this can be useful if done right…but it can do more harm than good if used carelessly. i see too much careless aggression out there…aggression that brings in no one, educates no one. aggression that, again, pushes away people new to the issue…people we need to reach more than anyone else.

    i don’t know if i’m an activist. i just know that i tell personal stories. i’m confused. i’m lost in my life. and i need the room to be lost. i need the time to grow, change, develop my sense of self, of others. i don’t like being told that i have to think one way…speak one way…act one way. right now, advocacy is too often rooted in anger, control, semantic aggression. i don’t know how to be okay with that. it leaves me in a place where i’m not really sure what i’m supposed to be doing. like i said, i’m kind of lost in all of this.

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