Tag Archives: Twitter

An Identity Crisis and Other Ramblings

*Warning – This post is written with humor.  If it offends, stop reading immediately and find another post.  There are lots of posts on this blog that are humorless.  Seriously.  Stop.  I mean go.  I mean…

My friend, Ib, (thank god she has returned from her various travels as I have felt decidedly “off” while she’s been away) and I were joking yesterday about the identity crisis I am currently undergoing due to the result I was given from taking the Broader Autism Phenotype test.  I was told “You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype.”   It also said something about having an “aloof personality” something I’ve been accused of my whole life.  So I did what any sane human being would do – I retook the test.  This time the results said I had scored above the cutoff on two scales and therefore it was no longer “clear” that I was either autistic or on the broader autistic phenotype, but rather “likely” that I was.

And no.  I do not intend to take it a third time.  However I have resisted (so far) the desire to do a more thorough research of this test, how they are scoring it, exactly who is taking it, etc.  I so want to share my conversation with Ib, but didn’t think to ask if it was okay, so I’ll just share some of the tidbits from me, which is a pity as Ib had the best lines and is hilarious.  Ib is truly one of the funniest people I know, which, given the current view of Autistics being unable to understand irony and sarcasm, makes her so rare, she should be concerned that some autism specialist doesn’t catch wind of this lest they cart her off and stick her in a cage for more thorough examination.  But then those specialists haven’t gone on twitter and read tweets from my friends CoyoteTooth, HardAspie, TwinsMa, or AspieChap, nor have they listened in on FaceBook conversations with Brigianna, Kassiane, Julia, Rachel and countless others, all of whom have the whole sarcasm, appreciation for irony thing down to a science.

But I digress…  So in response to a hilarious, dry comment by Ib about my newly found status/nonstatus/questionable status I wrote:  “Ib… I do love you so.  And you really, really make me laugh, because you have that (oddly nonAutistic) humor, which clearly, despite being saddled with autism, you have managed to hang on to.”

To which she wrote something I cannot repeat.  And then mentioned one of the other myths regarding Autistic children, (it’s always regarding children and not adults because the common perception is that there are no Autistic adults and evidently never will be) which is that they are all so “exceptionally beautiful.”  This is something many have written about in a great many books, memoirs and on every single one of Emma’s reports and evaluations.  Each is prefaced with – “Emma, a beautiful little girl, of 5 years and 2 months, bounded around the classroom, only stopping to pick up a chair, which she hurled against the wall.  She spoke in one or two-word utterances, refused to obey any of the rules….” and the report would continue with the evaluator’s “observations” of Emma’s various activities as one might write about an animal under observation in the zoo.

So I responded to Ibby with this:  “…but that whole “oh they’re angels sent to us from God is crap.  I’ve heard the whole “unusually good looking” thing and I, personally do not see this as the case.  Sure there are lots of cute Autistic kids, there are also lots of really “cute” non Autistic kids.  I mean isn’t this the puppy syndrome?  Most puppies are pretty damn cute.  I think it’s that NTs expect an Autistic kid to look “weird” and so when they don’t they say, “oh she’s an angel, sent to teach us lessons that we’ve still not learned and never will, but while we’re NOT learning them at least we can feel better that the kid is so damn cute.

 SOS – Need Ibby home NOW..  Losing all patience with humanity’s stupidity…..  eeeeeeeeeeee”

Ib then responded with a whole diatribe that was so funny I laughed out loud and she ended said diatribe with the word – “sarcasm.”

I responded:  “I know you identified that last bit with “sarcasm” because now with my newly found identity you are assuming I’ve lost all ability to understand that that was in fact sarcastic.  Richard only this morning pointed that out to me and I tell you, it was an enormous relief to me.  Because now that it seems I am (at the very least) precariously close to being near if not ON the spectrum I will be humorless, incapable of understanding nuances and suddenly, miraculously very good at math, plus my IQ will take a massive leap upwards, for which I am extremely grateful.”

*To all whom I’ve now offended, this was not meant as offensive, but was poking fun at just a few of the ridiculous generalities, assumptions, theories and labels that continue to plague anyone who is Autistic.  And anyway if you reached this far and are still offended you clearly did not read the warning label, which suggests you are not good at following rules, coupled with your inability to see the humor, I therefore encourage you to take the Broader Autism Phenotype test.

My two exceptionally beautiful children (sarcasm, sort of)

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There is Always Hope, Sometimes It’s Hard To Find

Sometimes I feel completely inadequate in the face of our society’s insanity.  Sometimes I wish I weren’t a part of the human race.  Sometimes I feel so much rage at all that’s WRONG with the world, with the mess we’ve made of our planet and each other.  Sometimes I just want to go live in a cave in some part of the world that isn’t inhabited by other people, just me, my husband, my children and a few select others.  I want to build a new world, a new community, a new set of societal rules where minority doesn’t equal less.  Where prejudices weren’t tolerated, where people helped each other without expectations of what they would get in return.  A place where people understood that the reward in helping and being of service to our fellow human beings was in the act of doing and not in the form of monetary gain, gold medals, our names engraved on plaques or statues carved in our likeness.

I spent most of my twenties and half of my thirties in hiding.  I hid inside my eating disorder.  I drank more alcohol than my body could cope with, I smoked cigarettes, I took drugs, I did anything I could NOT to be present.  Even in those moments when I did manage to show up, I wasn’t really present.  Not completely.  Not really.  I was angry and hated how angry I was.  I was depressed and hated how depressed I was.  I couldn’t face any of it, for so many years, I just couldn’t.  Eventually I became suicidal.  I couldn’t stand the feelings any more.  I was filled with so much rage, I turned it inward and thought the answer was to kill myself.  I remember I fantasized about driving to a state where I could buy a gun.  That was how I wanted it all to end.  I would blow my brains out.  I was seeing a therapist and when I admitted this to him he said, “You have to go to a 12 step program.   You have to find people who are struggling with an eating disorder just as you are.”  When I told him all the reasons why this was not a possibility he leaned forward and said, “What have you got to lose?”  I will never forget that.  I will never forget how he looked at me.  I will never forget the feeling I had when he said those words – “What have you got to lose?”

So I went.  And I hated it.  A bunch of obese people, a couple of anorexics and an assortment of others sitting around talking about how they couldn’t stop eating or starving or obsessing.  I was horrified.  How had I ended up here?  Wasn’t I different?  Wasn’t I better than this?  I remember I looked around that circle of people in that dingy room lit with strands of donated christmas lights, despite the fact that it was March, and the signs with various slogans plastered on the wall – “We came for the vanity and stayed for the sanity”  and “One Day At a Time”  and “Progress not perfection” and I thought to myself, I have entered hell.  This is not what I want.  This is not where I want to be.  I am not one of these people.  I am BETTER than them.  I don’t NEED to be here.

But I stayed.  Because really, where else was I going to go?  I knew what lay outside the door of those rooms.  I knew, left to my own devices, I would binge and puke and rage and cry and binge and puke.  I knew the cycle, I’d been doing it for more than twenty years.  So I kept going to the “meetings” and I bought the literature and people gave me little notes with their phone numbers and hearts on them that I’d promptly throw away, but they kept giving me more notes with more little hearts and more phone numbers and eventually, eventually I called one of these people and they took the time to talk to me.  There were the steps, each one mapped out a way of behaving that was different from the way I lived my life, so I began doing them, never once thinking that those “steps” would become a way to live my life more than a decade later.  There was a great deal of talk about taking the next right action, staying in the present, taking things slowly, changing ingrained behaviors and being of service.  There was talk of “god” and again I felt there was no hope for me.  How could there be?  I didn’t believe.

I have never believed in god, I’ve tried, I just don’t, but I do have faith.  I have faith in human being’s ability to do great things if we are shown how.   Some of us need more help than others.  I’m one of them.  I needed a great deal of patience, support and help.  I needed to have my hand held by those who had once been where I was.  I needed others to show me the way.  I needed to hear about their struggles, I needed to know that I wasn’t alone.

When Emma was diagnosed, I had a road map, instructing me, helping me.  All those meetings spent in dingy basements without heat in the winter or air conditioning in the summer had shown me another way.  I knew, if nothing else, I had to keep showing up.  There were days I didn’t want to.  I’ve done a great number of things I wish I could take back.  I’ve made countless mistakes.  But I know, I know with all my being that hiding, that not showing up, isn’t an option.  So I research, I read, I reach out to Autistics, I listen, I ask questions and I try to learn everything I can so that I can better understand and help my daughter.  In helping my daughter, I am helping myself.  I am helping myself become a better human being.  There are mornings when I wake up and think, What the hell am I doing?  I don’t know how to do this.  I don’t know what the right decision is.  Is this the right school?  Is this the best therapy?   Does she understand?  What would she say if she could communicate her thoughts?  What would she tell me?  

Much of the time I don’t know.  What I do know is that the basic principles and actions that got me free from the grip of my eating disorder are the same actions and principles that help me parent both my children.  Be honest.  Find safe people to talk to.  Have the willingness to show up.  Be present.  Reach out to others.  Ask questions.  Listen.  Really listen.  If I’m overwhelmed, acknowledge that.  Take a break.  Sometimes doing nothing is better than doing something.  But the thing that helps me more than anything else (I know I’ve said this so many times) is to be in conversation with Autistics.  When I am feeling sad or confused, or overwhelmed, or have questions, I reach out to my Autistic friends.  And even when they don’t know the answer to my question, they remind me of what’s possible.  They remind me that my neurotypical take on my daughter is often incorrect.  They remind me of all the misinformation out there.  They remind me of what is important.

So for any of you reading this who are despairing, who feel it’s hopeless, that the divide between your child and you is too great, know this:  There are hundreds and hundreds of verbal and nonverbal Autistic adults who are blogging, on Facebook, on Twitter, they are talking, they are asking to be heard, they are asking to be respected, they are asking for the same rights as any other human being, they are asking to be treated as you would want to be treated.  Reach out to them.  Google, read books, read blogs, get on Twitter and Facebook, do the research, ask questions, make comments.  If you’re suicidal or feeling you can no longer cope, get help.  Get support.  There are a great many organizations like 12-step programs that do not cost anything, but rely solely on donations given voluntarily.  Find the people whose voices resonate and then find more.  Because really, what have you got to lose?

2002 – Me with Em and Nic

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


A Mess, A Mom & Marriage In That Order

Mess of Me

I was a pretty messed up teenager.  I quickly developed into a very messed up twenty something, who progressed into an even more messed up thirty something.  Taking a breath.  Whoooo.  I’ll spare you the gory details, suffice it to say, I was a mess.  Another breath.  I don’t think I’ll get a great deal of argument from those who knew me then.   In fact, it took me until I was 36 to realize I was far too old to be so confused and such an utter mess.   I found people who had also once been where I now found myself, some worse, some not as bad, but they reached out and pulled me up.  Because of them I learned how to reach out to others.  I learned how to ask for support.  I learned to take suggestions.  I learned how to make amends, not apologies, amends.  I learned that in order to feel better I had to behave better.  I learned that the most important thing I would ever do in my life was to become the type of person I admired and those people all had one thing in common.  They were kind.

Becoming that person meant learning to do small thoughtful acts.  Remember I was a mess.  Doing the obvious, was not my strong suit.  I couldn’t suddenly transform myself into someone else, I had to learn to look for things that I could do to help others.  In the beginning it was things like holding the door for someone, giving up my subway seat to someone else, holding the elevator doors open for someone just entering the building instead of madly jamming my index finger at the “close door” button.   I had to learn how to refrain from letting out an exasperated and audible sigh when someone annoyed me, (still working on that one) I had to learn that sometimes saying nothing was better than saying something. This may sound like common courtesy, but I live in New York City, where holding the elevator doors for someone or relinquishing your subway seat brands you as crazy, (exaggeration) in addition I was a mess, remember, which automatically trumps being polite, thoughtful or kind.  By behaving in a way that engendered smiles and utterances of gratitude I gradually began to feel better about myself.  By helping others, mentoring other people younger than me who were also having a tough time, but who now saw a person they wanted to emulate, I began to feel I was worthy and living a life of value. I learned how to be a part of a larger group and that while I often craved solitude, I found I needed community.

About two years after I was hit with the realization that I was far too old to be such a mess, I met Richard.   We decided we wanted children, had Nic, got married, had Emma and suddenly there we were, five years later, after I had that moment of dawning awareness that there must be more to life than what I’d been living.  So yeah, I’m not a great role model in how to graciously and elegantly enter adulthood, easily taking small manageable steps until one day there you are with an infant, a toddler, and a husband.  But I had a little road map, a kind of guide-book with rules and suggestions, not literally, but figuratively and I was continuing to work on how best to behave in any given situation.  I had phone numbers and emails of people who helped me and of the people I helped too, so I felt fairly certain I could handle whatever might come my way.  But parenting is unlike anything else.

Despite what some people might think, okay strike that, no one is thinking this, but it works as the beginning to the next sentence,  I was not given a super hero’s cape along with matching Lycra body suit with the word MOM in dayglo colors emblazoned across the chest when my son was born.   I did not, after 38 hours of natural child-birth suddenly find I could dash into arbitrary enclosed structures, don my supermom costume and reappear in all my lycraed, daygloed glory with  powers of insight, lightening quick reflexes and the infallible ability to intuit what my son needed and wanted at any given moment of the day or night.  Ditto when my daughter, Emma was born.  No handbook came with either child, carefully guiding me through their very specific needs and issues.  Nic cried and held his small hands over his ears when a siren went by or the subway came to a screeching halt in front of us, Emma screamed from internal discomforts none of us could see for the first few months of her life.  Who knew?  We certainly didn’t.

We humans, we come with baggage.  Some have more than others.  Me, I came with a couple of steamer trunks, but I also had that well-worn guide-book from when I was such a mess and couldn’t figure out whether it was better to keep sleeping or wake up and do something.  It was and is my lifeline.  It’s expanded to include lists of blogs, twitter contacts and Facebook friends all of whom I can reach out to.   You see, I now have hundreds of people I can interact with and these people are my community, my tribe.  Sometimes we behave badly, sometimes we don’t agree.  But I know hiding is no longer an option.  Checking out doesn’t work.  The only way out is by staying in.  I know I’m not alone.  I’ve learned that it’s perfectly reasonable to not know or understand something and this is something I have learned from my Autistic friends, the beauty in asking for clarification.  It’s okay to not understand as long as you are willing and want to understand.

There is a great deal of talk about Autistic children.  There is a tremendous amount of fear that if we miss that critical period of our child’s first five years, all is lost.  But we humans have a tendency to grow and progress throughout our lives.  Some perhaps more than others.  I cannot speak for others, but I can speak for myself.  I am not the person I was in my teens, my twenties or even my thirties.  I figure as long as I keep my mind curious, my ideas open to alternate views and continually engage in conversation I will not stop progressing.  There is always hope.

((((((Emma)))))), Facebook, Twitter, Blogs and Other Joys

When you look at the title to this post do you read it to mean – Hugging Emma, Facebook, Twitter, Blogs and Other Joys?

(If you answered yes, you are correct.  ((((Insert name)))) = Hugging.  The more parentheses, the bigger the hug.)

Within the autism community where Facebook reigns as the ultimate gathering place, the use of emoticons, ways of expressing emotions and physical actions, are commonplace.  I would argue that within the autism community the use of emoticons is more prevalent than within the neuromajority population.  But I need verification from my Autistic friends before I make such a statement.  It’s a thought based on my observations and interactions.  Which, by the way, speaks as much against Simon Baron-Cohen‘s various theories about Autists lacking empathy and a desire for interactions as it does to the level of support, gestures of kindness and friendships that are developed and maintained over the internet.  (I just submitted an amended version of my recent post – An Empathic Debunking of the Theory of Mind – to Huffington Post so he’s very much on my mind these days.  I’ll give an update when I see if and when it’s been published over there.)

Facebook, a crowded virtual space where conversations overlap, people you’ve never met interject themselves into a conversation before moving on, friendships are formed, rekindled and developed, strangers “poke” you to say hi, even if the only connection you have is that you both occupy space in that crazy mosh pit that Facebook single-handedly created.  If you think about it in these terms, Linkedin has a more conservative, suit and tie required at the door feel to it, I haven’t figured out where twitter falls in all of this, maybe it’s akin to speed dating, while blogs are the mothership, making the insanity over at Facebook all the more raucous and surprising.

It must be said, I hated Facebook when it began.  I refused to join, I felt indignant when people would discuss their “friends” or about something that had gone “viral.”  Who cares?  Who has the time?   I scoffed.  This is just a bunch of people with way too much time on their hands.   And then I would settle back to my tenth game of Spider, while reminding myself that I really should get some sleep.  But eventually I joined.  For business reasons, I told myself.  This is a pattern for me.  I observe, remain on the side lines, dip a toe in the murky waters, sit back, observe some more and then dive head first into the deep end, blissfully unaware of any rocks that may lurk under the surface.  I’m not encouraging this approach, it’s just an honest assessment of what I have a tendency to do.

Yesterday I was a mess.  For those of you who reached out, thank you.  I was teetering on the edge, trying to keep it together, not doing a great job, but doing my best to work, taking on one small task at a time.  And then my friend stepped in and held out her virtual hand.  (((((( Insert Name ))))))  Like a life line, she held her hand out and gently pulled me off the ledge.   Lots of emoticons were used.  I’m not fluent in emoticon, but she’s been a kind and patient teacher.  Did I mention she’s Autistic, not that it matters, except that it does, if only for this reason:  Autistics aren’t suppose to be like that.  That’s what we neurotypicals are taught.  Right?  It’s what all those autism specialists tell us, right?

She sat with me, literally, while I wept.  ((((((((((Insert my friend’s name)))))))))   She said all the right things and by the time we both went back to work, I was laughing.  But wait, that can’t be right.  She must not be autistic, because she doesn’t fit the mold.  Right?  Isn’t that what we do when someone defies a stereotype, instead of re-examining the stereotype, we relabel the person?  Can we all agree to toss this insane theory about Autists lacking empathy, lacking a desire for interaction and friendship?  Can we please just stop it?  Imagine if you tried to reach out to someone, only to have them reject you because of some mistaken idea they had about who you are and how you are supposed to behave?

Which brings me back to Emma.  My beautiful daughter.  I don’t know if she’s already aware of these stereotypes and how they apply to her.  My guess is, she is.  It’s one of the many things I wish I could control and change.  But I cannot.  What I can do is make sure she knows that I am here, supporting her, encouraging her, with my arms open for those times when she needs to feel them wrapped around her securely in loving embrace, just as my friend did to me yesterday.

(((((((Emma)))))))