Tag Archives: Vectors Of Autism

A Little Gratitude And Love

I have to begin this post with some gratitude.  Angela, whose blog – Half Past Normal – a wonderful blog I hope all of you will visit, reached out to me yesterday with a lovely comment.  As with all the comments people leave, I was left feeling so fortunate to be among such a wonderfully vibrant and diverse community.  Thank you Angela for thinking of me and reaching out to me.  It made me very, very happy.

I wrote yesterday about feeling off kilter, feeling what my father would have termed – je ne c’est quoi – I couldn’t put my finger on it, thought it was from all the travel and jet lag, maybe some overwhelm too, I didn’t know really.  But I’m closer now to what it is.  My friend Ib, whom I adore and carry with me in my heart at all moments, helped clarify it for me yesterday.  She calls it “weltschmerz” and she said, “it is located in your language of erosion of trust… disappointment… the need to help underscored with a note of (in my ears) not being sure it will work or anyone will listen… I think it is weltschmerz and I think it got in your body like it does for us and made your bones tired.”  The “us” she is referring to are all the Autistics who are advocating for change.  They are constantly working to change our thinking, our perceptions and the way Autism and Autistics are viewed and treated.

As I read Ib’s explanation I thought of @Coyotetooth who tweets poems in 140 characters or less and photos of his walks.  He is one of the many brilliant, kind souls who is quietly making a difference.  His post, Unshattered is just one example of his poetry on his blog CoyoteTooth13.  His tweets are the ones I try to find first thing in the morning. Sometimes if I’m very lucky I will come upon his and @AspieChap’s conversations, often conducted in rhyme, the best way to begin any morning, it seems to me.  Then there’s @Aspie_Warrior who is tweeting and blogging (blog – Aspiewarrior) about  what it’s like for him as Dad to AS son and NT family.  He writes, “This has led to me working as kind of translator in my household. Kind of a bridge between my NT family and my son.”

@SpectrumScribe with his wonderful blog, Postcards From the Edge of the Spectrum writes about his journey of discovery, revelation, acceptance and self-reconciliation.  He has wonderful suggestions for books and film in addition to his terrific posts.  There’s @AspieKid whose comments on Emma’s Hope Book have inspired whole posts  and who writes on his blog, AspieKid about his life and what it was like for him as a child.  There’s Laura Nagle, featured in the wonderful documentary, Vectors of Autism: Laura Nagle and gives one of the best monologues I’ve ever heard about what it is to be Autistic.

There is Amy Sequenzia and Peyton Goddard and Emma Studer, all of whom are nonverbal Autistics communicating through typing and whose words are having an impact.  One by one they are changing people’s perceptions of their children and what it means to be a nonverbal Autistic adult in the world.  There are countless others and I will try to include them in future posts, but these are all Autistic people who help me understand, who through their kindness help me forgive myself for the mistakes I’ve made, who have helped me do things differently.  Maybe they already know they are making a difference or maybe this will come as a surprise, but they are and they have.  They have made a difference in my life and by extension in my daughter’s life.

If there is one thing I can do with my writing and with this blog, I hope it is to inspire other parents and organizations to read what Autistics are writing and to interact with Autistic people.  If I can have any impact on the organization – icare4autism – it is to persuade them to seek out the advice of Autistics, to hand the microphone over to them and to work closely with them in moving their organization forward.   We parents can give each other support and cheer each other on, but it is Autistics who can best advocate for themselves, who can explain to the rest of us what it’s like, who can encourage us to not concentrate on deficits, but on assets and who can show us we are not so different.  We are, after all, human, regardless of our neurology.  Perhaps it is in sharing our commonalities, rather than our differences that will encourage people, all people to come together to help one another.

I have to end this post with my friend Ib.  Ib doesn’t have a blog, but she is a powerful presenter and advocate.  She also is my friend, someone who reminds me when I feel discouraged, frustrated, tired or angry that kindness was what changed things for me.  Kindness from Autistics who reached out to me and extended their hand not so long ago.  E. from the blog The Third Glance was one of the first, and I’ll never forget how much her comment on this blog meant to me.  Ib has not only extended her hand to me, but opened her arms in embrace, no matter my mood, no matter my lack of understanding, patiently, lovingly, she has given herself in friendship and I can only hope she feels my love for her in return.

Yesterday evening


Laura Nagle – Paving the Way

The following was a “comment” sent to me by Laura Nagle, who is the star of the wonderful, powerful and not to be missed documentary:  Vectors of Autism: Laura Nagle.  I couldn’t just include it in the comments section, you will see why.  So I asked and received Laura’s permission to publish it here as a post on its own.

Laura Nagle writes:
“I self diagnosed with Asperger’s Syndrome several years ago. I told my sister, who told our father who confirmed my suspicions with recollection of my official autism diagnosis long ago, before the flood. I soon learned of a local chapter of the Autism Society of America, meeting in Flagstaff. I went there. Walking into that first meeting was a large and difficult step. I am so glad that I summoned the courage.

You see, I have always been autistic. I have always been a misfit in the world. I have had all the typical autism issues, but without having any answers as to why. I have paid my bills, but otherwise have wandered aimless upon the earth. I have lived in crushing financial poverty, as do far too many of us. I have found a form of poverty so much worse than that of mere money; and have lived this soul poverty most of my life.

You see, I have had nothing to give. I have been so deep in money trouble that I have not been able to give to charity. By the end of a day’s work in the real and generally entee world I am exhausted, and melted,  and depressed, and not capable of any optional accomplishments. And I have lacked any special worth or skill or talents. What can a poor, fatigued, worthless loner give to anyone. Nothing. Nothing at all. That is the desolation that I have endured. . .

. . . Until my walking into the meeting of the Northern Arizona chapter, ASA. I must note, and strongly, that my life did not change at that moment. That would be to assume that I had a life prior to the ASA chapter and the people I met there. I did not have a life, I had a rude existence. My life began at that moment.

I found the ASA and was found by them as well. It turns out that all that I learned during those harsh years is of value to others. It happens that I have an essential talent of putting an esoteric condition and its personal reality into words understandable by persons who will never experience it. This talent is a gift, I cannot take credit for it, but I will use it as well and as often as I can.

I am motivated. As I scan the decades of my life I see so many ”autistic moments” in which I adjusted my life’s trajectory downward. I see so many moments in which things might have turned out better for me if only I. . . If only someone near me had known the whats and hows of autism. They did not. I want new ones of my Spectrumite Tribe to excel! I want them to do far better than have I! I want them to exceed me in every way.

And I have the chance to do this! These wonderful people around me, people of ASA, people of TASH, these people have given me purpose and friendship and thus life itself – on a silver platter! I have gone so long in a drought! I have people and purpose! The drought is broken, and I am blessed beyond my wildest dreams, and I so deeply appreciate it all!

Without the ever growing people I cannot fulfill my purpose. I need people to dream with me and also for support and guidance. I need those people who listen to my message and apply these concepts in real life and so insure that new auties shall exceed me and my success! People and purpose. I would never have dreamed of this. I have thanks that would take several lives to give.

And I would like to offer those thanks here! Thanks big and wide to the ”Vectors of Autism” team, to my ASA and TASH friends and to all who watch our film and are moved by it. Special thanks go to John, our director, who insisted on making this film more than a documentary. Thanks to our cameraman, Matt who lent his vision – literally! And most of all, thanks to Susan, producer of this film, and of my life!

Dang I am lucky!”

*I believe, but I haven’t verified this with Laura, that when she writes “entee” she is referring to NT (neurotypical).

I was going to title this post “Laura Nagle – Paving the Way For Emma” because Laura is, but it isn’t just Emma who profits from her words and this documentary.  The more Autistics are given a platform from which they can speak out, discuss their experience of the world, the better this world will be for all of us, not just our children, but for every single child and every human being on this earth.

Thank you Laura for writing this.  Thank you for being who you are.  And thank you Leah Kelley of Thirty Days of Autism for introducing me to Laura.

Vectors Of Autism: Laura Nagle

Vectors of Autism: Laura Nagle   For those of you who have not yet viewed this powerful documentary, you must.  I cannot urge you enough.  Just do it.  Watch it.  Keep a box of tissue nearby, because if you’re like me, you’ll need it.  I wept throughout the entire film, from joy, from sadness, from relief that such a film has finally been made, from pain that we have so far to go in educating ourselves, the public, the media about autism and what it means to be autistic.  At one point Laura laughs and says, “I figure I was built out of reworked parts.”  It is a poignant example of both her sense of humor, but also how society’s view of her has weighed heavily.

Anything I say about this documentary is inadequate.  So I’m going to give you a couple of fun facts while you click on that link above and purchase the DVD.  I know, it’s $35.00 but think of it as an investment in your child’s future and to the future of this film.  The more people who buy it, the more likely it will make it to film festivals, and to the larger public where this message needs to be seen more than ever.

Laura Nagle wrote the lyrics to the theme song and plays the harmonica on it, she’s also an architect, an artist and Autistic.  It’s hauntingly beautiful, which is kind of perfect because so is she and so is the documentary about her.  The couple in the documentary with two little girls on the spectrum, Jennifer Turrell and Stewart Anderson wrote the music.

*Addendum – I was so tired when I wrote this post late last night, I just didn’t have the energy to write more.  But I need to add, this documentary is everything I and others like me have been saying.  It is imperative Autistics speak out about their experiences and it is vital that we, in the neuromajority, listen.  For those of you who are still uncertain as to why I say this, it is because I know I am not the only parent of an autistic child who went through a hellish period (far too many years) in which I struggled with my daughter’s diagnosis and what that meant to her and to us as her family.  I tried my best to understand, I did what I could with the knowledge I had available to me, but even so, I fell short.  I cannot help but wonder, had I heard Laura Nagle and others speak of their experience, would I have done things differently?  Would my stress and fears have been abated even if only by a little?  Would I have sought the opinions of all those specialists with such tenacity and fervor?  Would I have been able to set aside some of my fears in favor of a more rational and calmer mindset?  And most importantly, would any of this have effected Emma?  I think it would have.  I hope others can learn from some of my mistakes.  I hope that by writing about my journey, others who are closer to the beginning of theirs can avoid some of the traps I so easily and readily fell into.

What I know now is that having operated with a stress level hovering in the red for so many years, I am relieved to see this documentary.  I am grateful to have friends who are autistic and whose lives, opinions and experiences help pave the way for my daughter.  The question is – how do we go about making these kinds of connections available to other families?  Families who do not have blogs, who do not know where to go to find Autistic adults who are interested in speaking to them and sharing their experiences with them.

One of the reasons 12-step programs work as well as they do, is because they provide a model for living through mentorship.  The role of the addict who has cobbled together some time as a sober and abstinent being, who then goes on to offer support to other addicts with less experience and who may be still struggling with their addictions is a powerful model for any community.  A huge component of 12-step programs is the idea of being of service.  Without being of service to a fellow addict we will almost certainly lose our way.  But this idea, this model can be translated to include any community.   Within the autism community, for those self-appointed Autistics who have a desire to extend their hand to families with autistic children, it is a vital lifeline, one that everyone involved can profit from.

If you’re still undecided here’s a preview video:

After you have watched it, I want to hear your thoughts.  What did you think?  What did you learn?  What surprised you?  What made you cry?  What made you laugh?  Laura is very funny, so that one is probably easy!  Laura has not just started a conversation, she is extending her hand.  It is up to us to grab it.

Laura Nagle, Vectors of Autism and Other Exciting News

In response to my post – Losing Sleep, Autism and Strange Noises in NYC – I received a great comment (all the comments I get are great) but I’m referring to one specifically.  It was about the Theory of Mind as well as lack of empathy conclusions Simon Baron-Cohen and others like him have made.  The person who is autistic, wrote:  “But we are not being laughed at, dismissed or ignored anymore. People are arguing with us. That means they hear our message and they are aware that it conflicts with what they have been taught. Their confusion will diminish over time. The people who need to be told what to think will always listen to, and agree with, the loudest voices. And our voices are becoming louder. If we perseverate, then we will persevere.”

In keeping with this thought, you must watch this YouTube video –  A preview for the upcoming “Laura Nagle: Vectors of Autism.”

The 50 minute documentary, which this video is a preview to, will be awaiting me when I return to NYC in July.  I will be reviewing it here and for the Huffington Post.  Leah Kelley has been posting about the documentary and Laura for a while now on her blog – 30 Days of Autism.  In this brief preview Laura talks about how quickly she can read, she says, “I’m good at that” (pause and then laughs) “I’m not good at life.”    I won’t say more as I really want everyone reading this post to please take 5 minutes to watch the video, it is wonderful.

I also want to urge all who are as fascinated and disturbed by some of the various “theories” out there about autism as I am, to go over to the blog – Autistic Hoya.  There are so many terrific posts it was difficult to decide which to add links to, but to begin here are two of my favorites (but the whole blog is an education)  The Dangers Of Misrepresentation and The Other Side Of Disclosure.

I will be covering the Aspen Ideas Festival for the Huffington Post from June 27th – July 3rd, unrelated to autism, but still very exciting.  I have no intention of shirking my posting responsibilities here on Emma’s Hope Book, but may be posting on the run as they say, so please forgive typos and seemingly random thoughts.  On second thought you probably won’t even notice as that’s pretty much the norm for me anyway!   I have been asked to cover the icare4autism conference in Jerusalem, July 31st – August 2nd.  I have accepted their generous offer and am very excited!  A quick back story – when Richard and I first heard about Henry Markram and his Intense World Theory for Autism (this link is an in depth scientific paper.  It is not light reading, but if you’re interested, it is very interesting), we read that he would be giving a talk in Jerusalem in August.  At the time, now more than seven months ago, we joked – wouldn’t it be great if we could go to Jerusalem to hear him?  Just over a week ago I received the invitation and learned that this was the conference he will be presenting at!

And finally, I am including two, completely arbitrary and utterly unrelated photos…  just because… well, because I can and I felt like it and they make me smile and maybe they’ll make you smile too.  Please ignore the dust.

Merlin and the Gator

For a little perspective…

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