No, this post has nothing to do with porn, soft, hard or anything in between. In fact, this post is not about sex at all. There will not be any numbers or shades or subtle, implied meanings of anything remotely titillating. For those who were hoping otherwise, best to move along…
However, I do have a confession to make. I tend toward extreme thinking. An example, if someone cuts me off while I’m waiting for the subway, grabbing the one remaining, unoccupied seat, forcing me to stand, I can get into some pretty abysmal thinking. I am likely to assume the day is cursed, as I engage in heinous thinking about the person who “stole” MY seat, to apocalyptic views about the nature of human beings. I know this about myself. I know I have a difficult time living in the soft, greyness of life, while rejecting the glaring, yet far more exciting black and white tragedy or ecstasy of my circumstances.
For years I felt mildly victimized by Em’s diagnosis. I felt no one really understood or could possibly understand and any who suggested otherwise offended me. Then I found Autistic adults who were not living the tragedy I had assumed was my daughter’s inevitable future. In fact, these adults were interesting, smart, some spoke, some did not, others spoke on occasion, some communicated through typing, others communicated through typing with a facilitator, some had careers, others didn’t, some were in relationships, others weren’t, some had children, others did not. Some have become friends, one in particular has become a close friend, someone I seek out, think about, want to spend time with, look forward to talking to and miss when our schedules do not allow us to connect. In knowing her I’ve been able to dispense with the “victimized” mindset. She’s helped me enormously, not just in giving me a better, more tempered view of autism and breaking down some of the more harmful stereotypes and beliefs I once held about autism and Autistic people, but in what it means to be human.
I have gone from feeling a low-grade sense of sorrow for my circumstances to feeling fortunate and grateful for my life and family. I don’t mean that everything is perfection and that we never encounter moments of sadness or unhappiness, I just mean that I no longer pin my dark moods and feelings on “autism”. In fact, I feel ridiculously fortunate. I have met more fascinating people in the past year than I ever imagined possible. I no longer wonder what life would be like had I not had an autistic child. I am grateful for the life I have. I am grateful for both my children and I’m grateful for my friendships. I find I am living more and more often in that comfortable grey area of non-extremes. (Please feel free to remind me of this post when I write something less “evolved”.)
And that woman on the subway, who for the past four years has shot in front of me to grab the only remaining unoccupied seat on more mornings than I can count? I wish her well. I even gave up my seat, so she could sit this morning AND I didn’t feel smug or resentful; I just kept reading my email. Who knows? Tomorrow I may even muster up the courage to smile at her. Because you know what? Life is just too damn short. Besides I’m growing fond of the grey.
Christmas Eve Dinner – 2012
Emma's Hope Book 
“In fact, I feel ridiculously fortunate.” Dido.
Although Cali has only been diagnosed for two years now, my heart is truly grateful for having the opportunity to learn and grow from this crazy journey. Crazy, confusing, happy, sad, discouraging, encouraging, and everything in between journey.
“You never know how strong you are until being strong is the only choice you have.” -unknown. The only choice if you want a chance at staying “in the grey”. Black would be resentful. White would be complacent. And being in the grey, being strong would be giving up your seat for the women on the subway. Thanks!
Love this! Thanks so much Chelsea!!
This is so cool! I just pulled out my notebook to read the working title of the draft I wrote yesterday, yeah, I remembered right, it’s called, “Living in the Grey’! Great minds, Ariane. Great minds. 🙂
Are we like the friends who, without speaking to each other, find they keep wearing similar outfits to school?
😀
Love the picture of your Christmas Eve dinner. Your beautiful dog seems to be taking it all in. Great words as always. I love the platform of Alexis Wineman, contestant for the upcoming Miss America pageant who herself has autism: “Normal is Just a Dryer Setting- Living with Autism.” My daughter, Kimberly has helped me not fear autism or any other difference or disability, but to enjoy differences. What a boring world it would be if everything was black and white, no color or shades of grey.
Boring, indeed! Please tell Kimberly I say “hello!”
This sounds somewhat like the whole “Power of Positive Thinking” thing – or as I call it, “fake it until you make it” – I keep trying to convince my husband to go down this road with me, but he’s still in the stage that you first described – I wish that we could meet some variety of adults on the spectrum as you have – I think so far we’ve only met Temple Grandin. As we well know, it’s called a spectrum for a reason!
So glad you commented! If you go to my blog roll on the right of this page, more than 90% of those blogs are written by Autistic people. Just Stimming was the first blog I found, written by the incredibly talented and wonderfully insightful Julia Bascom. I read every single post on her blog and even mustered up the courage to comment on a few. Next I read E.’s The Third Glance and again, I read everything she’d written and then commented on many of her posts too. She reached out to me and now I am in communication with both and many many others as well. These are people I care about, I have developed relationships with, not just because they can help me understand my daughter, but because they are wonderfully interesting, beautiful, human beings whom I’m honored to know. On each of their blogs you’ll find the blogs they like and follow, go read those too. There’s a whole new world out there, just waiting to be found!
Thanks!
Indeed – please, come read my blog, or send me an email. I’ll absolutely respond. Sometimes it takes me a few days to get back to a comment or an email, but I try really hard to get back to everyone. 🙂 Ariane is amazing, and she’s helped me, too… Once you find the right people, it’s not so bad. And I don’t bite. I promise. (Well, not unless you physically touch without any warning on multiple occasions, but seeing as this is the internet, I don’t think that will be a problem…) 🙂
Thanks for the invite – I will be sure to head over to your blog!
TALK TO ME.
I LIKE ANSWERING QUESTIONS.
I might flap at you, be warned.
flap flap flap.
-An Autistic adult
Aw… I wish I’d known you and E. when Em was first diagnosed. You would have helped me manage my fears or at least you both would have tempered all the fear/tragedy stuff we were being told all the time. By the way, your blog is on my blog roll!
My son flaps as well 🙂 I think we have the same wish that a lot of moms and dads have – to know what’s going on inside of him! I just know he’s got this amazing world and dialogue that he’s waiting to share with us. We can see it in his eyes, that he doesn’t have the means to share it all yet. I think that’s what frustrates him more than anything else!
I’ll come check out your blog, and see what questions I might think of, thanks for inviting me.
:), Ariane. Beautiful writing, as usual.
Paula, I’ve been thinking of you! Hope you’re feeling better.
I remember my mother telling me that even though she was an adult she still felt the same as she did when she was a teenager. I was surprised to find how much growing there is to be done as an adult.
Good for you Ariane, so many people stagnate..
oxox
I love that, Hannah. Yup, still forget I’m 52! Yikes! How did that happen? 🙂
Ariane: I enjoy your writing, so very very much. I was tickled pink to see my son, Benjamin Gran just connected with you. As we discuss just how many wonderful blogs are out there in the Autism community, I kept saying, your mother is connected to Ariane Zurcher and you’re not??..lol…You’ve got to read her writings! Maybe it’s the getting into the 60’s, maybe it’s having a 30 something terrific son, who just happens to be Autistic, but feeling fortunate?? Me too! CHEERS!
Linda, I didn’t put that together just now, so glad you told me!! How great!
I have a seat every single place I ever sat more than twice. I know it isn’t actually my seat but I can’t keep myself from glaring at the occupants of said seat. Well I try not to glare but it’s hard. Rational does battle with my desire for things to be exactly the same I guess even in places I can’t control.
Sometimes people think it is good for me if they mess with my sense of my but usually that just annoys me. Every so often at services people will try to arrange the chairs the “wrong” way knowing it will drive me insane if my seat doesn’t exist in the new layout. I find that a bit pointless. The guys who do the kitchen threatened to not put out my cup (there are alas only two that will do) but I was able to convince them that would be a bad idea.
As for my autism directly I don’t know. Sometimes I still feel sorrow about it. It’s been over a year now since my life was blown apart by something one would think an adult should weather a little better than I did. Today I saw my doctor and he mentioned yet again that there may indeed be a way to get services despite my IQ (last time he thought that it was a bust) but it will involve more testing. Last time they re-evaluated me I found that so stressful I didn’t finish but since this will be tied to funding that is needed I suppose I will have to endure it. First he was keen to have a fuller workup but he is going to stick to what is actually needed for the funding.
It’s a weird situation to be in to be glad that the tests they need are ones I am sure to flunk. (Vineland and an asssesment of my activities of daily living.) The last assessment of my daily living skills they wound up winding to want me in a group home but that should be less of a risk here.
When I feel positive I say my brain is both the best and worst thing about me. I don’t know if that’s grey enough. I know there are things that are tremendous gifts that in all liklihood the alternative universe NT me wouldn’t be able to do but it’s a constant struggle. There are so many supposedly simple things I would like to do badly enough to bring tears to my eyes. Not earth shattering things even. My dreams are modest enough it can seem cruel to have to accept the bulk of them can’t be realized.
On the bright side I do have a very adorable dog licking my feet at the moment and apparently he will now be able to fly for free with me saving several hundred dollars a year so I may not be able to look people in the eye much, or make a phone call to a stranger but my dog will get cheap flights. Take that NTs.
Oh Gareeth, I thought of you this morning as I boarded the train to my studio. I sat down in “my” seat as I almost always do, unless someone slips in before me (!) and was happily reading my book when a woman got on and sat as close to me as she physically could, despite the fact that there was an entire empty row of seats to her left! She sat so close to me, I had to lift my heavy bag up and place it in my lap, which I did, but I was not happy about it. And then I thought, maybe I’m sitting in “her” seat and that’s why she’s sitting so close. (It was either that or she was cold and seeking warmth from another human, these things can be tricky to know for sure.) Anyway, I thought of you and that made me smile.
I am happy to hear your adorable dog is taking good care of your feet, but sorry to hear about the other. I hate filling out all those forms, Vineland et al for my daughter. It is both upsetting and daunting, because as you describe to not do so means services are not obtained, but to do so is to feel pulled down by it all.
I am thinking of you and sending you love.
I guess my only worry about the Vineland is if it takes into account the kind of variability I experience with some of the things they try to measure, It’s been more than 22 years since I studied it and I don’t think they had gotten to it when I washed out of my last re-evaluation. Not to worried about any assessment of my daily living as I have flunked those when I was doing relatively well for me it is just odd to be rooting for a low score.
I don’t think the actual outcome will upset me as I am pretty familiar with it and services suck for adults in any case here, so for any hope of them it just has to be borne. Having services specifically based on my autism will be important because the pressure on the mental health system is so great they have shown they will throw me aside too many times already this year and since historically someone eventually will say the autism is primary it’s not our problem we have to be ready for that. (Last time on that conclusion we spent a dozen years with no support at all which they then use to conclude we must have been doing well all that time – rolls eyes)
As far as how they impact you when you do them for Emma she’s still in a time of rapid growth and change so maybe you could view them more as just how it is at that point in time.
Isn’t it amazing what a little awareness can do for a person? Everyone needs the kind of awareness that parents of autistic children, who come to know autistic adults, develop. Then autism would no longer be feared, would no longer be a ‘mystery’, would no longer feel like a sentence to new parents who hear that diagnosis in their own children. This is what we need more of!
Lara – I literally have dreams about such a world and then I always wake up… But one day, one day…
I do like your closing. Life is too short. And finding, choosing a time to smile.
Thanks for commenting John, it is inevitable that all of us will “go” grey so we may as well enjoy the ride!!
Maybe the lady that keeps racing you thinks its a game at this point? 🙂
I can often victimize myself as well. I can at times define myself by my ASD diagnosis. It’s my love/hate companion. Again, black and white. I think it’s easier to feel that the world is cheering or against you, rather than realize that our world doesn’t revolve around is individually. For example, if someone looks at me funny, I assume they don’t like me not even really considering maybe they have something in their eye? 🙂
Hugs(if you want them)
Gretchen