the entry i tried not to post but in the end, did

the joy of autism is elusive to me. the joy of people is not.

i love my son, the person. he brings me intense joy. i don’t believe my son IS his autism. i believe my son HAS autism.

his autism brings challenges that make his world more isolated. his autism brings challenges that make my world more isolated.

his autism creates a feeling of being unsafe around people. how do i know this? he tells me.

my son has a social phobia. my son has a lot of anxiety. my son is afraid of kids. my son can’t yet be left in the care of someone else for a weekend.

i don’t find joy in that.

my son has weaknesses. i try to provide opportunities for strengthening those.

my son has strengths. my son is funny. my son is smart. my son is sensitive. my son is quirky. my son is unique.

i celebrate that.

some people can’t walk. these people are gifts because they are people not because we celebrate the joy of walklessness. if therapies were available to help a non walking person walk, i would administer them enthusiastically. am i devaluing that person because i want them to have more mobility? more flexibility? more autonomy?

is autism a gift? well, it’s not in that thick of the bell curve. it’s not a dive in the center of the easy moving stream. it asks more of us. because of that, the potential to learn and grow exists. that can be a tremendous gift.

is autism, IN AND OF ITSELF a gift? i don’t know.
a person with autism can be incredibly gifted or not.
a person without autism can be incredibly gifted or not.

every person has gifts.

autism brings a set of challenges that make things harder for those parenting kids with autism. we can grow and learn from those challenges.

autism may bring a set of strengths that bring a whole new vision to those who can articulate it and for those willing to open up to hear.

autism may bring a set of challenges that interfere with the unique voice of that individual with autism. uncovering that voice matters.

is autism devastating? certainly not always but sometimes, yes.
is autism a tragedy? certainly not always but sometimes, yes.
is having a child on the spectrum worse than having a child not on the spectrum? no.
is it better? no.
is it harder? yes.

my son’s autism makes it harder for him in the world.
it also makes it harder for me.
if it’s always harder for him, will his life be less important, less valuable, his perspective less valid? of course not.

talking about autism only in terms of the gifts and the joys is like talking about the beauty and joy and wonder of parenting without mentioning the boredom, the isolation, the depression, and the stress. having a child on the spectrum is like having all that beauty and joy and wonder and boredom and isolation and depression and stress at times plus the constant underlying concerns about understanding and responding to your child’s needs in the present so they have a shot at a good quality of life in the future.

with autism, nothing can be taken for granted. is that a gift? i suppose it can bring gifts if one is open to that. is it exhausting? sometimes. is it stressful? less so as one goes on, as you weave it into your mind and heart and life. would it be easier if autism wasn’t part of the equation? i think so. would something be lost if it wasn’t part of the equation. maybe. i’m not sure.

if parents think they aren’t changing their children by raising them, i think they are fooling themselves.

we love our kids. we love our kids with autism. i say they bring us joy because they are our kids not because they have autism. having autism doesn’t take away from the joy they bring to us but i don’t think having autism creates the joy they bring to us.

the autism brings a new perspective from them and for us, one that has value, one that is purposeful, one that deserves investigation, understanding, respect, and admiration. every child brings a unique perspective that deserves the same things.

i can find the joy in that.

Comments

[Moi ;)]

Wow - excellent post, Kyra.

You do have some nerve, LOL, I am surprised that D*** and her ilk haven't gotten hold of this one...

[Susan Wagner]

"at some point, the child becomes the person."

That is what I pray for every day, and why I do what I do for my son. For both of them, really, but more consciously and carefully for Henry. So he can become the person I know he is, and be that person--autistic, ADHD, gifted, whatever--without my aid.

This is so beautiful, and you are such a remarkable person, with such an incredible voice. Thank you, Kyra.

[Motherhood Uncensored]

I think there is so much there, Kyra, and mainly, you are a spokesperson for those who cannot (by no fault of their own) speak for themselves.

I'm not sure autism is a gift - I mean, I'm not sure social anxiety and all the difficulties he endures is a gift - however, there's not doubt that HE is a gift. Can you make autism a gift? Perhaps. And maybe therein lies the question.

In addition, I think about how folks label themselves - on one hand, we use person first, then disability, but then at what level do they feel as though their identity as person and a person with autism meet - in that they can feel as though the autism is part of who they are.

As a mom, I wonder how I would feel being called a person with a child, however, I don't know whether I'm fully comfortable with the title of MOM.

I'm rambling - however, you've made me think. And as always, I thank you.

[Estee Klar]

Kyra,

This post is like you being in the room with myself and my new members of TAAP: The Autism Acceptance Project, tapping into human potential and dignity.

The Joy of Autism is exactly what you say - is and isn't, provocative, but a challenge. My byline has always been revealed in previous posts: joy doesn't come without struggle, it doesn't come for free.

All of us have the same thoughts and dialogues. The joy I derive comes from Adam himself, the person, my reason for being.

I would like your permission to take this post and put it on the TAAP website. There are dozens of speakers (many names you will know) who are coming to Toronto the month of October and the title of the 2006 event is:

The Joy of Autism: redefining ability and quality of life.

You've summed up joy and living with autism in a profound way.

Estee

[Lora]

Thank you so very much for this post Kyra. It was not only eloquent but full of truth and candor. I appreciate that, it brought a tear to my eye for some reason. Maybe because I can relate to it so well.Thanks again for your writing and always having such a great blog.

[Mothersvox]

Awesome post. Thank you, Kyra.

[Other Laura]

Clearly I am not yet awake. Please substitute G for everywhere it says S except the comment in parenthenses (sp?). Not that S doesn't have a quirky personality. Whoops - rambling. Bye.

[Other Laura]

This is wonderful. I think I might just copy this and send this to every Grandparent/friend who told me we were "trying to hard" and G was just "eccentric." (I'm looking at you, Mom.) Oh, and that G was a gift from God.

Which, she is a gift, as is her sister (although S is a bit more of a hyperactive, oh crap she broke something kind of gift). However, there are things about her that make her unique, yet are not necessarily something I look at as gifts. Because, as I said on Felicity's site, you can't exchange Autism for Freckles. And usually gifts don't require as much research. And actually, a gift is meant to be something to enjoy, right? And truthfully, there is very little about Autism I enjoy. I enjoy S's quirky personality and beautiful singing. But she would have those regardless of her autism.

At this point I am rambling, so I just want to reiterate again - what a great post. Thank you for saying this for those of us who are not as articulate.

[Ted]

You know, this is a warm and wise examination of why parenting is so amazing and hard and real and indescribable. Autism is a part of your life, now, and neither a source nor a diminishment of the soul-gumbo that is parenthood.

My children -- not autistic, but each as individually gifted and challenged as all other humans -- make me want to stand on a peak and shout joy to the very winds of creation. They also make me want to leap from said peak.

I'm learning, as you expressed, that the difference between the gifts and challenges we *have* and the souls and humanity we *are* are as profound as the difference between the chemical elements of life and life itself. We, all of us, *have* a kabillion notches in our souls. We, all of us, are so much more than and different from a shadow-box of notches.

Thank you. Your journey makes me a better person.

[Dori]

Thank you so much for your blog. I admire you as both a wonderful writer and a fabulous mother.Reading your thoughts has helped me so much. Thank you.

[zilari]

I've never said, or thought, that autism is "all good" or "all bad". Autistic people are human, and the "human-ness" is primary here. Humans have good parts and bad parts and interesting parts and frustrating parts and simplistic parts and I could just go on and on here.

I don't consider being autistic to be a gift, or a curse, or any other superlative. It's just a way to be, a human way to be. We're not X-Men or eternal children or anything less complex than a real live human.

[Felicity]

Kyra, I am so glad I know you. You are a brillinatly shining light and an amazing mother. Sending fist-in-the-air right on's to you.

[KC'sMommy]

OMG! You just wrote exactly how I feel!! Thank you thank you and thank you for sharing your thoughts with us. Super great post!!

[mom-nos]

You see, Kyra, THIS is why I admire, respect and adore you so much. I love how you think, and I love how you make me think. Thanks for this.

And I really DO adore you, even if you're not a McCartney fan. (sigh) SEE how much I respect diversity? :-)

[Vick Forman]

Bless you for writing this. You have said it all.

[Kristina Chew]

Just posted about your post, commadre.

http://www.autismvox.com/im-not-afraid-to-be-wrong/

[Anamaria]

I would love to see this post cross-posted and referenced and read and talked about all over the place (I'll start with my blog, as soon as I get a minute to post on it!). Thank you, Kyra.

[kyra]

mom-nos! thanks for your comment. i have similar questions. i don't have the answers yet. the best i can come up with, and this relies on my instinct and my intellect (at least as much as i can grasp and absorb what i read and what i hear and see and feel and *know* at this point) is that there is a differnce between our ASD kids and adults not because of the autism but because of human development. we know babies are born before they are neurologically 'ready' because their heads wouldn't fit if they stayed in for another 3 months. they come out and keep developing. they keep developing and assimilating and integrating and experimenting for months and years. we are 'forming' them as much as they are following a biologic blueprint--the old nature v. nuture. it seems to me, our responsibility as parents is to respect and understand who we're raising as much as guide and shape. conscious parenting is a conversation after all, a developmental conversation between the care giver and the child, one where both parties learn and change (hopefully!). nuerotypical kids demand that their parents help them understand the world. they see us as guides, they drag us here and there and pepper us with questions, insist on getting instructions, demonstrations, opportunities to test it out themselves, they demand a role. they don't abandon who they are for who we are, they use it to bring out their own unique shape. what i want for my son is the chance to have him use me to bring out his own unique shape. kids on the spectrum don't demand this from us. they avoid it. it is a critical step in develpment and i think they miss out on their own self understanding, self expression and self realization as a result if they never get that we can guide them toward a greater sense of their own inate indentity and feeling of competence.

as i said above, anyone who thinks they are not changing their kids by parenting them is fooling themselves.

at some point, the child becomes the person, if you will. i mean, of course, the child was ALWAYS the person but the child begins to slowly take on more self-direction, more self-reliance, and at some point, takes over the role of the parents and becomes responsible for their own life (again, hopefully). human beings are incredibly strong and creative and interesting. the person they become will have developed systems for understanding and operating in their world (hopefully). no matter if they 'have autism' or are autistics or neurotypical, they will have their own unique approach and understanding and experience of this life. i'm interested in that. i see that as valuable. no one has to walk through some developmental instruction book, conquering chapters on this or that to have value. all perspectives have value. period.

there are many adults with autism who call themselves autistics. not all of them do. i personally know of a number of adults who say they have autism but don't identify with calling themselves autistics. in any case, many say they are autistics and so i listen and respect them. what do i know? i'm not them. i believe there is a unique perspective of those on the spectrum since there are shared and strengths and challenges, they see and experience many things differently than the 'typical' person but within that population there are huge variations. 100 people in the room with aspergers are 100 unique individuals. i value that perspective. i would argue that i am ALL FOR neurodiversity. i'm for the widest embrace possible. the brain is always learning. new pathways can be laid down at any time. we keep making brain cells even well into adulthood, not as many as when we're in the single digits for sure, but the biggest cell death takes place once the cells have migrated to their new positions. they're all, 'whaddaya got for me' and if they're not given assignments, they kiel over. since in early childhood, there are gobs of them being born, migrating,and bursting with enthusiasm for their new jobs, i say, let's give them the best possible chance to train! to allow for a more balance neurologically, to maximize the ability to connect in relationships, so that greater choice is provided to them.

the world is full of people. all kinds of people. i would like my son to be as comfortable with who he is as possible. i would like him to feel as safe in this world as possible, this world chock full of all kinds of people. he may grow up and tell me that he doesn't have autism, that he is, in fact, an AUTISTIC and then i will be proved wrong. that's okay with me. that's a matter of semantics. what concerns me is his sense of safety. that is not debatable. either he feels safe in the world or not. call it what you will.

[Kristina Chew]

Very glad you posted this---it's the muddle of feelings and love and hope and sadness plus that feel all the time.

I do think of autism as being cognitively different, or neurologically different. This is an imperfect analogy---but I would compare it, somewhat and imprecisely, to being racially and ethnically different, in the sense that it's a difference (like race--l can't "get rid" of being Chinese, nor would I want to) that is inerasable. And I do think growing up Chinese American in the USA is entirely intrinsic to who I am, and some of it was great and joyous and some of it was really, really, hard--culture clash and that kind of thing.

http://www.kristinachew.com/autism/2006/02/character_educa.html

And I'd do it again. And my beef, such as it is, with the Autism Speaks video, is that it portrays none of the light in the dark that you describe here, and that you so passionately share with us.

[melinda]

SUPERB post as usual my dear wonderful mommy to fluffy. I could never have said it better than this...and this is exactly how I feel as well!

[Joel]

I agree with you, Autism like many things is neutral. What it is in a persons life is completely dependant on what they make of it.

It does make things harder, but harder in itself isn't worse. I find harder to be less enjoyable, but often more rewarding.

anyways, I like how you articulated that.

[mom-nos]

Oh, I'm so glad you decided to post this. I have been trying to write a post for what seems like months, but I just can't find the right words. I just can't think CLEARLY enough about it. Can I just muscle into your comments section and play with my ideas? Yes? Thanks.

I've been using the same parallel in my mind about not being able to walk, specifically because, had he lived, Bud's twin would have had spina bifida and would have had mobility problems, among other things. If he was here, I'm certain we would be pursuing surgeries, medications, therapies, ANYTHING that would make it easier for him to walk - and not because we'd have valued him less if he couldn't walk.

Okay, so here's where I get tripped up. With that philosophy, I'd be framing spina bifida as something my son HAD, not something he WAS. So if I look at autism the same way then it all works.

But when I read blogs written by autistic adults I start to see themes that say "autism is not something I HAVE, it's something I AM." And the way they talk about it, the words they use, the emotion it conveys draws a DIFFERENT parallel for me. What if autism isn't like spina bifida? What if it's like being gay?

Until sometime in the 70's, homosexuality was listed as a mental disorder in the DSM. Some parents still try to "cure" their children of their homosexuality, and mourn the lives they'll lead as gay people - the missed opportunities, the isolation, the harassment, the discrimination, etc. They think "My child's life would be so much easier if he could just be straight."

And, of course, I think they're wrong. I hope that I will help Bud to develop strong self-esteem and help him learn how to be a loving, caring partner so that no matter WHO he loves, he will love well. If he's gay, I won't try to make him "not gay," I'll try to help him be the best gay person he can be.

So if I view being gay as just a different but equally good way of emotional being, perhaps I should view autism as a different but equally good way of cognitive being.

I'm not making a case here, I'm just pondering. I've got lots of questions, but not very many answers.

What do you think?

[kim]

Wow. That is incredibly incisive. You are an incredibly strong person. I can do nothing but lamely admire you from over here.

[Laura]

Wow! Incredible choice of words and articulate description of how I feel as well. Have been struggling reading blogs today about the new Autism Speaks video and how terrible they portray it and how false it is, etc... I personally have been feeling great peace with my son and his autism, and look to the uniqueness he offers us. I don't understand why people are so offended by the video though, when these are the same people who chronicle their stuggles and joys in their blogs. I am happy to have something to show friends and family what melt downs can be like, what sleepless nights are like, how financially burdensome it is (because of insurance). Your writing made me reflect on that today, sorry for babbling. You are a GREAT mom!