a conversation with ari

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elephant-room11

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The back story

Ed note: Ari Ne’eman is Co-Founder and President of ASAN, the Autistic Self-Advocacy Network. He is also a Presidential Appointee to the National Council on Disability.

Ed other note: Since my conversation with Ari was not ‘on the record’, so to speak, I’ve limited the following to my side of the conversation. I’m fairly certain that I could print everything that Ari said as well, but, as we didn’t explicitly discuss it ahead of time, I feel that it would be a violation of his privacy to do so. As you will see, he did agree to be interviewed, so we will hear a lot more from him soon.

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After we’d talked for a while, Ari asked me about myself. “I’m an accidental advocate,” I said. We talked a little bit about the blog, and I told him that I had had no idea that I was a writer – that I WASN’T a writer – until the day that I didn’t know how NOT to write. (I realize that the preceding sentence makes a pretty clear case against calling myself a writer now, but bear with me.)

I told him just a little bit about my journey, about the dramatic evolution of my perspective on autism, on advocacy, on dignity, on humanity. I told him that it had taken time for me to come to the place that I’m in now. That I started where so many of us well-meaning and loving parents do – prizing indistinguishability – believing that typicality, or at least a reasonable approximation thereof, is the ultimate goal. I told him that I didn’t have the slightest idea how damaging a message I was inadvertently sending to my girl in the process.

I told him that now, six years hence, my daughter has two friends – real friends, I said – two autistic girls who love her and who she loves in return – with whom there is no expectation, other than being her glorious, delightful, delicious, and autistic, self.

We talked about the time that I mentioned to Brooke’s BCBA in the integrated preschool that I wanted to set up a playdate with one of them. I told him how we’d just witnessed them participating in a joyful – if to us incomprehensible – exchange. And I told him how the BCBA had advised against it.

Preschool conference ~ 2007

“So, now that we have some strategies in place for facilitating play for Brooke at home, we’d really like to try to come up with some play dates for her.”

“That’s a great idea.”

“So we we’re hoping to get your feedback on who might be a good fit for her. We were thinking about starting with Lizzie. They seem to have so much fun together.”

“Oh.”

The BCBA’s face has changed. Bubbly and smiling has turned to quiet and concerned.

There’s an awkward pause, then she haltingly continues, obviously measuring her words.

“It’s just that well .. they aren’t exactly .. um .. I’m not sure how to say this. They’re not really such good influences on one another.”

She says influences as one would say cancer. But ya know, contagious.

I picture Brooke and Lizzie, doing what they do every time they see each other.

They have this silly script they’ve fallen into. We call it doing the Doh Kas. They jump up and down and say “Doh Ka!” together again and again. It has meaning to no one but them. It’s their thing. Two little girls who thrive on knowing what to expect have come to know exactly what to expect from one another. It’s just not what’s expected by the rest of the world. So it’s not ok.

“Oh,” I say, deflated. “I guess that makes sense.”

We’re all so focused on giving Brooke the tools to interact ‘typically’ that I accept this as an answer.

For a while.

I told him how I didn’t know yet to say, my voice dripping with sarcasm, “Gee, you must be right. Who would want to encourage joy? Or heaven forbid, foster a beautiful connection between two little girls for whom connection is not easy?” I told him that I didn’t speak up because I didn’t know that we were chasing the wrong goal.

We talked about how freeing it is to have left behind the shackles of that desperately flawed thinking. How fulfilling it is to live a life of truth, of authenticity, that starts with my daughter but extends to each of us in her orbit. We talked about how determined I am now to encourage Brooke to spread her beautiful wings – to show us all — and the world — the magnificence of her unique colors. Not to hide what might be less palatable to those around her because it is different or confusing – not to teach her – wittingly or no – overtly or subliminally – that she should ever, ever be ashamed of who or what she is.

I told him that selfishly – purely selfishly – I am so grateful to her for breaking open my insular world. For opening my eyes to the variety of not just the autism spectrum, but the entirety of the human spectrum, in all of its divine glory.

I told him that I worry about the messages that the parents of newly diagnosed kids are getting when they turn to their peers for support. I told him that I worry that the entire paradigm is broken. I told him that what scares me most is the desperate lack of understanding about what he and other self-advocates do. I told him that I’m terrified that the myths, planted in the soil of fear and watered by frustration and anger and desperation, have grown tall and strong enough to stymie communication and thwart any hope of progress.

I told him that I want to help. That I want to bridge the gap. That I want to ask him the hard, thorny, even accusatory, questions that come from our community. And I want to ask them in an open forum – here on Diary. That I want to talk about why it matters so much that we understand who and what we think we’re fighting. Because the beast that we’re shadow boxing may just look very different in the light. Because it may just be our own children.

I told him that above all, I’ve come to understand that everything that I do in this arena — everything — must be guided by one principle and one alone – respect for my daughter’s dignity and her right to self-determination. I told him that I used to assume, because I am her mother and I love her and I want nothing but the best for her, that everything that I did was in her best interest. I told him that I owed him and other self-advocates an immense debt because it was they who had shown me the folly – and the danger – of that assumption. I told him that it is because of people like him that I now know that it is not enough to act on her behalf based on my inherently flawed view of the world. That I must instead do everything in my power to help her ultimately act – on her own behalf – on hers. That that is my job.

That it is also my job to assume that she has something to say, no matter how she may express it. That it is my job to assume that she has an opinion, whether or not she’s yet been asked to share it. That it is my job to make sure that she IS asked – and to help her find a way to understand and to respond. That it is my job to arm her — with services and therapies and accommodations and supports — that will give her the power to navigate the world around her, that will enable her to fully participate in it to whatever degree she chooses – in her own way. That it is my job to remind anyone who comes near my kid to teach her or guide her that our goal is not to create an adult who is indistinguishable from others, but one who is safe, happy, and as self-sufficient as is possible and comfortable for her.

That it is my job to teach her to be proud of who she is.

I told him that I’d be back with the questions – the ones that would address those damned elephants in the room.

I told him again that the questions would be unvarnished. That they would be raw. But that unvarnished and raw is real. And doing it any other way felt false. And, thanks to my daughter, I don’t do false.

I told him that I can answer some of them, but that it’s not my place to do so. It IS my place, my job, in fact, on behalf of my daughter and of all of our children, to ask them of him so that HE can answer them. So that we can, God willing, begin to understand each other. So that we can stop shouting and start listening – so that we can stop looking for compromise in this false dichotomy that we’ve set up and instead start searching for, and agreeing upon, the absolute truths hidden beneath the anger and the rhetoric and the fatal misperceptions of each other.

I left the inauguration believing in the possibility of progress, but also carrying the weight of the understanding that it will not come without our participation. Each of us has a role to play in moving us forward. Each of us has a sacred responsibility to the future to do what we can.

This is what I can do. I can try.

The end.

The beginning.

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27 thoughts on “a conversation with ari

  1. There are so many ways to comment today and yet all I can really say is that you have your magnificent voice (words) and Brooke definitely has hers. She will continue to grow. I have no doubt of that. She will self-advocate at the very least and beyond!

    Love you,
    Mom

  2. My daughter, who is also on the spectrum, also has a few friends, who she can truly be herself with. For that time, she has no anxiety about fitting in, no pressure, and can just be herself. I think it is important to teach them the appropriate ways to act. But, she also needs to breathe and feel like she can be herself, even for a few minutes. I am sure the BCBA meant well, but does he have a child on the spectrum???

  3. WOW!! What a wonderful and thoughtful way to describe your mission with your baby and more importantly the world and how it relates to little people like Brooke.
    I would never want to be on the wrong side of your pen. Your thinking is so very clear and so spot on.
    “teach her to be proud of herself”, what a wonderful focus and goal from a special and wonderful mother…
    Love you,
    Dad

  4. What you wrote…it’s really powerful. I have a feeling that “the beginning” will be something that I really need to read for me and my boys. And I have a feeling it will be life changing.

    Your side of the conversation sets a stage for what I am assuming were tough questions to ask him. The accidental advocate becomes the conduit for sharing how one of the most visible self-advocates does his work.

    Thank you. I am really looking forward to this interview.

  5. This conversation – the all of if – just keeps evolving. I have the feeling that you are getting so close to the crux of what very meaningful advocacy really looks like for us as parents, along with an ever deeper understanding of who our kids are and what they need. I can’t wait to read more. Thank you for this. xo

  6. Beautiful Jess. The journey and the growth is undeniable. And you’ve helped me to move along in my own, much sooner than I would’ve otherwise. Thank you.

  7. Wow. I am riveted. I know that I have much to learn, and I am so grateful that I found your blog 18 months ago…I can’t wait to see what is next.

  8. First off, LOVE the picture. How true.

    As a parent to my own autistic little girl who’s emerging social desires teach us every day more and more about who she is and who she wants to be, I am so grateful for the conversation you have started for so many of us – long before today – that continues to unfold and give parents new perspectives on our amazing children and what should and should not define them.

    Jess, it is because of your forward thinking, and honest thought-evoking writing, that I can say I know my daughter better than ever. Truly know her. Because I have been able to change my role as a parent from wanting to make her more like me to wanting to be more like her – joyful, indescribably real, unchained by the constricts of others’ expectations.

    In kind, my hunger to make connections with self-advocates grows and I, too, have reached out to my daughter’s community. I know when she is ready, there will be the most amazing people waiting to embrace her in all her glory.

    Why ever would I not want to be a part of that?

    Love you. Thank you.

  9. This is something, respect for my son’s dignity and independence and free will, that I am working to achieve. Initially, I became excited about the statement his pediatric neurologist made, how by the time he reaches college age, he will probably not have autistic qualities, given his “high functioning nature.” But as I read more by autistic self-advocates and parents, I realized that the goal was silly. Why should we try to shove his beautiful being into a square when it is a big beautiful heart? Why do we need to make him fully accommodate to the NT’s and not the other way around? He is so smart and interesting, even as an almost four year old boy. He has fascinating ideas and perspectives. His heart is huge. Why would I want to suppress his expression to make it more comfortable for others?

    I came to a conclusion only a few days ago, after seeing his neurologist. Rather than use my advocacy skills for evil (heh – I am an attorney), I want to use them to provide more understanding, access, and accommodations for all individuals on the spectrum. I am new to the game and I have a lot to learn from autistic adults, teens, children, and parents. And I have much much more to learn from my son.

    Thank you for all that you do for this community. I look forward to reading Ari’s interview. As a parent, I want to be an ally and advocate (and advocate what is best not for my interests). And I hope I can be a part of a greater change and acceptance.

    • I can’t wait to read the rest. My focus has changed tremendously as my child has grown and as I’ve learned more from people with autism about autism. I no longer want a cure. Instead, my only goal is to remove the obstacles that make things difficult for him that come so naturally to others. That spark that makes my boy uniquely and wonderfully and beautifully him? I celebrate all of it now.

  10. i love this. I can’t wait to read more. And this evolution of thought is awesome. I’m still evolving, trying to follow my son’s lead, but I wrestle with it. And when I’m honest with myself it’s because I worry he won’t find his place, that the world won’t accept him even if I do 100%. Even if I spend every waking moment from now until forever trying to make that happen, will it? Will he be ok? That’s my up at night worry.

  11. I can’t wait to read more. More importantly, I can’t wait to share this with my son’s educational team. Hopefully, it may provide fodder for them to consider all the reasons why “normalization” is not a desirable goal.

  12. Hi friend, I just love this … want to work toward developing this ability with my kiddo.  I haven’t read the comments yet, have to get some work done.  But, I struggle so much with trying to help her understand “typical behavior”  “expectations of typical peers and teachers” … where is the place to settle … do I support her hand flapping and clapping or do I try to help her stop it because other teens may “think she’s wierd” … I am in such a curious place about this … I love when her posts make me feel like this … though I don’t think I like the feeling itself. Thought you might understand, L

    ________________________________

  13. As a new mom to this journey, I want to thank you for challenging my thinking and my approach to this strange new world– a world so strange for me, but so normal for my son! Thank you for lighting the way for us parents that are coming right behind you with little ones and for showing us the example to always look ahead to those who are doing it right. I was so impressed with Ari Ne’eman when I saw him at the congressional hearing and look forward to hearing more about him and his thoughts through you.

  14. hrm. ok, random question. I see you write, here and there, about changes in your attitude towards your daughter from wanting her to be typical to wanting her to be the very best *her* that she can be. If I am ever able to properly formulate my thoughts and questions and such, do you think you might be willing to talk to me about that, and allow me to write a post on my own blog about said conversation?

    I don’t know, this is only a half-formed thought at this point and I’m not sure I’ll manage to make it anything more. But I’m voicing it because if I don’t, it will definitely never be anything more than a half-formed thought.

  15. I think we all evolve as we travel this road. But this blog, your words, have changed my thinking more than anything. There really aren’t enough words to thank you.

    I can’t wait to read what’s next.

  16. By letting us ride along on your journey of evolution, you made my journey that much shorter. I’m sure it was from something I read here that a couple of years ago, I got down to my newly diagnosed son’s level and joined in his post-bath ritual of odd noises while I toweled him off. Seeing the joy in his face as we connected, changed it all for me. And it took a huge weight off my shoulders, thinking I should be fixing him to be like us instead. The biggest compliment to me is when people tell me what a joy he is to have in their classroom, group, etc. This post may need to move over to the “Things to read while you’re here” column. Definitely interested in readying more. Thank you Jess!

  17. For the parents who sit up and night and worry: I didn’t speak full sentences until I was five. My mom figured that when I wanted to speak, I would. I did, and from what I’ve read in my baby book, when I decided to talk, I flew out of the gates. Before, I was able to say a few words and point. That was in the mid 1980’s. The only people I had fighting for me were my mom, my brother, a close knit dysfunctional family that excepted, and two childhood friends (my mom knew something was off because I was the quiet one in the corner, reading a book). Other than that, I was anghishly alone, especially when I moved to Florida and became increasingly more angry, depressed, and alone. I’m not saying it was all bad, but sometimes you can only fight so much and get back up so many times and high school is a torture chamber for those who don’t belong or click. Thank whomever that I was diagnosed at 21 – not again with bipolar that never fit, but with HFA and anxiety, attention, and sensory issues (now shadow traits of PTSD / ADHD / APD / SPD / dyspraxia – nothing more is “wrong” with me than before, I’ve just been given lightbulbs so I know what it is that I’ve been fighting). And the point of this commentary is this: I have never felt less alone in my life since being diagnosed. There are others out there like me and, in finding ways to cope, I was handed my life back. I don’t remember how many suicidal thoughts I’ve had and still counting because I still let fear eat me alive – but I found somewhere to turn within the autism community.

    I’m independent simply for the fact that my mom never let me give up, she taught me over and over how to sew, keep a clean house, cook, budget, etc. I still refuse to iron (iron met hand one too many times). I’m also a teensy bit jealous that the next generation of adults with autism will have it easier than I did.

    There doesn’t need to be an us or them. I don’t always understand the anger (I can from the Aspie view, but I’m not a parent). I understand there’s a difference between cure as in “changing ones self for the worse” (i.e. forcing the square peg into the round hole) and curing classic autism. With everything, there has to be a balance. If we’re always angry or fearful, no one will ever see the solution.

  18. I am currently reading Susan Senator’s “Making Peace With Autism” and not sure if it’s a sign or a coincidence, but I read this the same day I read your post:
    “When you respond neutrally to undesirable behaviors in order to decrease their frequency, you may succeed in the end, but you are also cutting yourself off from the person whose behavior you are trying to modify.” and then this: “I’m not blamingour behavioral therapists or Nat’s teachers for beglecting this truth. I’m just saying we gained an understanding of Nat that moved us beyond their model.”

    My husband and I talked about both this passage and your post because we find this to be a constant discussion between us – the “how much of the behavior are things that we want to modify, and how much of it are things that are part of who he is and we should respect and let him be himself?”

    Thanks for this thoughtful post and I look forward to the interview as well. My son is 5, but when I read about Brooke, it gives me hope and encouragement, because I see a lot of similarities in my son :)

  19. Hey, thanks so much! At 23 Nat still amazes me, and I am so glad for how he has figured out the world. The only “behavior” I care about now is outbursts, and I can say that Nat has learned how to express frustration and confusion to the point that we have not seen an outburst in YEARS. Yes, he sucks his thumb, yes he talks to himself (but it means something), yes he paces from room to room. Now I say, “So what?” :-)

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