Autism Touches

Well. Here I am. My first public post about Autism. And in April, Autism Awareness Month.

Sorry for the staccato opening there.

I'm in tears now, because I just showed my son video clips of Autistic spectrum behaviors from the Autism Speaks video glossary. All this was spawned when I read When Children with Autism Become Adults on the New York Times website.

Our Noah was diagnosed with PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified...another term for We don't know how/why you're son is fucked up and, oh, by the way, there's no cure) when he was 3 years old. Come to think of it, it was right before 9/11. Shit, a Tower year, indeed (for you Tarot folks).

We, he, has come a very long way. In fact, the stinker just brought us both a cup  of coffee! *takes a sip* He's now entering adolescence. He's 12.5 and his voice is changing. When he laughs, it's so hearty, I call it the Adolescent Foghorn. (And we do laugh a lot around here. Now, anyway.)

I'm not going to give you a sob story or relate my ordeal. I have the T shirt (an anxiety disorder!) and I sure as hell don't want your pity. God forbid if I used Woundology (to use a phrase from Caroline Myss) to trade for your readership, support, friendship or patronage, right? (I'm kidding! Don't look so serious. Yes, I can see you through my magic crystal ball.)

So, anyway, just wanted to share that Autism touches lives in a very deep way. Sometimes, that touch can cause social ostracization, guilt, anxiety, depression or worse. Did you know, for example, that 1 out of 70 boys are diagnosed on the Autism spectrum? That's a fucking epidemic if I ever heard of one. More than Cancer, AIDS and Diabetes COMBINED, in fact.

I'm thankful Noah has come such a long way. He's articulate, bright, creative, hilarious, happy, optimistic, compassionate, helpful and diligent in his studies. Oh, yeah, I homeschool him. Forgot to mention that. When I witnessed a teacher shaking him in pre-school (I was across the room helping other children as a volunteer)--and then lied to my face when she caught me staring (she said he "fell")--I knew that my first instinct to homeschool any children I had was right.

We've endured the stares of people and other parents. The tsk tsk of uptight super-Moms and snotty restaurant patrons (and staff). Thank God all that is now over and we can now eat, shop and watch movies in public. And, thanks to the magic of modern medicine, I no longer have panic attacks, constant diarrhea and debilitating anxiety (thanks Lexapro!).

Unfortunately, there's no magic pill for Autism, though. (In fact just a little while ago, Noah asked me if there was a pill for it).

I have spiritual tools that have gotten me through Autism (click here to know one of my secrets). No wait. More than gotten me through. Empowered me to not see myself as a victim, but as a co-creator of my experience. As an opportunity to be a more expansive, patient, compassionate, strong, graceful, resourceful human being.

Am I perfect? Uh, no.

At home--as a wife and mother--I practically am. I recognize that (no, I'm not kidding on this one. It's what they tell me, too). But, that means my imperfection probably shows up more online. Attitude? In spades. Bluntness? I don't time for your bullshit. Honesty? Honey, after what I've been through, I don't have the time or patience to sugarcoat the truth or kiss your ass so you'll like me, buy my books, call me "sugar" or "cupcake" on Twitter, or let me into your special "town" or "guild". 

You wanna block me on Twitter or call me a bitch? Go right ahead. That ain't nothing, homey. "fist bump"

So. Here we are. Thanks for staying with me this long, dear reader. If you have any questions or comments, feel free to leave them, OK? I promise I don't bite. (Well...let's just say I won't bite commenters on my blog.)

To know more about Autism, including signs, visual symptoms, diagnosis, care, transition and resources, please visit Autism Speaks.

-- Janet

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Comments

[LostDroplets]

Having only recently discovered your blog, I was unaware that your son had autism. I thought this post was really powerful. I can't quite put my finger on it. I know a few young boys with autism, and you just opened my eyes to their world a little bit more, and to the world of their parents and caregivers. I'm also going to check out Byron Katie. Thanks again for another thought-provoking blog post and take care!!

[Janet Boyer]

Thank you so much for your comment, LostDroplets. My husband--a very quiet, introverted, gentle man--just got done reading it himself. I can tell it shook him just a bit. The rawness...maybe not even realizing how this has affected me (our perosnalities are quite different).

I don't talk about it often only because it's just been too close to home. And, because parents of Autistic children--desperate for hope--will glom onto other parents for "help" (I've had this happen when I've mentiioned my son's condition in an Amazon review for a children's product).

And I felt hopeless to help them. At least, I did then.

I don't plan on being an advocate, but it was just one of those days where everything met at a crossroads and I just had to post this. If it helps one person see something--anything--differently in their own world (or someone else's), then it's worth it.

The Work by Byron Katie is powerful. Just powerful. I recommend it to my clients all the time. If I could only recommend one book to the world, it would be Loving What Is.

Blessings to you and I'm so glad you found me and my blog...and that you take the time to share your reaction and thoughts with me. :o)

Janet

[LostDroplets]

You obviously possess a gift for writing - even more powerful than you are aware!

I know that autism has been on the minds of the masses this month, or else why would we have months devoted to certain causes? And even more so for it to hit so close to home for you.

I did order Byron Katie's "I Need Your Love - Is This True?" because the topics she covers in that book hit close to home with my life where it is now. But I look forward to discovering more of her work.

Take care, all of the Boyer family!

[Donnaleigh]

I am sad for your son for the day he stumbles upon this post to find that his own mother referred to him (in a public post) as f*cked up, and then continued on to blame her bad manners on him, adding a picture of him in case any of his acquaintances might doubt the blog might be about him.

Seeing someone else as the cause of our own continued bad behavior is nothing more than victim mentality.

I also have a son with PDD. He has been the greatest light and blessing of my life, and I've learned more from him than in all my years of obtaining an advanced college degree. While I would not change a thing about him, I would change the mindset of the bullies who impact his self concept.

I worked as president for our state's chapter that served my son's syndrome for 5 years, and was on the board for another few years before that. Through that volunteer work, I traveled throughout the state and met hundreds of kids, many of them deep into the autism spectrum, whose primary personal issues were usually not the learning concerns they dealt with each day that you might think impacted them most deeply. It was the cruelty others imposed on them. My job? Educating those around these kids to teach them tolerance and understanding.

Having watched your very uncomfortable internet interactions, Janet, I would have hoped you would have learned from your son just how important good personal interactions are within a community. People are not upset with you because you had a bad day. People are upset because of a string of patterns of aggressive bullying behaviors. And a mother should be teaching better lessons to a son who may have to live with it every day.

Donnaleigh

[Janet Boyer]

My son was here when I made the post as we talked about it, Donnaleigh. And, your comment speaks (volumes) more about you than it does me or my son. You know nothing about me; you and I never had personal interactions, you aren't a Facebook friend, you have never before commented on any of my blogs,and we haven't had email contact. You're obviously a very troubled soul who used my personal pain to (once again) attack me publicly because of a review of mine that you didn't like (what, a year ago?). Wow, how bitterness must eat you up; who, exactly, is the "bully" here? And the "victim". Yikes. May you receive peace some day. You obviously need it.

[Janet Boyer]

Thank you LostDroplets. That is very kind of you! Let me know what you think of Byron Katie. You can find out more about her work and see free videos at http://TheWork.com

[Donnaleigh]

I wish you well, Janet.

[Janet Boyer]

It is SO obvious that you "wish me well", DL. Do you think we're blind? Please don't come around my blog anymore. I spend my days working diligently on projects and don't have time for haters who have nothing better to do than hold on to grudges and spread their poison. You've just showed your true colors (that I've already seen, but is now confirmed in spades)--and it is you who have been the bully but are too blind (or arrogant?) to see your Shadow. Leave me alone. I have work to do. Lasting, meaningful work...at home and in the world.

[www.google.com/accounts/o8/id?id=AItOawludWOSk8cW01XWvCYTkNS4YJRsOmNU6aE]

Hey Janet,

It's amazing how little I know about autism except the various myths surrounding it! One thing I'll say, from reading your very frank blog entry and the exchange here in the comments, is I appreciate the frankness you express, your clear love and understanding of your child, your acknowledgment that this is hard and a work in progress and, yeah, pretty fucked up, and that for all that life is good. I like that. I don't appreciate the self-righteous lectures from people who want to pretend everything is hunky-dory and we must all tiptoe around a subject and never say anything uncomfortable.

Since I don't know much about autism I can tell ya right now who increases my understanding about it and the impact, and who does not.

Lili

[Janet Boyer]

Thanks so much, Lili. :o) Autism is, indeed, very misunderstood--especially since it's a "spectrum" disorder (meaning that its symptoms and behaviors run a continuum from mild to quite severe). Privately, I've been asked by parents with Autism, and those knowing a child with ASD, to post more to provide more information, encouragement and resources. I honestly didn't want to--it's quite painful at times, especially remembering the difficult early years--but if it can help illuminate, inform and comfort, then I'm willing. :o)

[Teashmail]

God forbid you may speak like a NORMAL person with a sense of humour and a lightness to the whole seriousness of this world LOL (had to throw that in after reading DL's comments)

If there's one thing a supermum needs it's a space to have a rant without having to sugar coat the raw truth of how freaking challenging it is in the so called "REAL" world with a child on the spectrum.

I know, I have one of the terrors right here... he's a terror when he's throwing shit around my house and an absolute guiding light when he's giving complete strangers massages in airport waiting terminals.

There's no problem sharing the love around with any energy he connects with but there sure as hell aren't any problems when he decides to tear apart your house because he wanted to go first in the game and couldn't get his own way!

I too have chosen to keep him home for homeschooling because to be honest I don't want him to be the butt of everyone's jokes in the playground or the kid who bit everyone in his classroom before he got suspended in 1st grade...

I would love to ask you for any tips on Homeschooling you may have... :) if you have time anything would be great :) thanks and hats off to you Janet!

Teash

[Janet Boyer]

Thanks so much for your support, Teashmail! DL has a personal beef ever since she disagreed with a Tarot book I reviewed over a year ago (!). She's obsessed with me and does her best to get in her digs or insult me when no one's looking or behind my back. Ugh. She obviously thinks she's God's gift to the Universe but, quite frankly, anyone that trumpets their own horn as such a "great mother" (and "spiritual person") leads to me to believe she's anything BUT...

Anyway! LOL

I plan on writing more homeschooling posts, so thanks for asking! Anything specifically you're looking for? Age group?

It's so nice to meet you and thanks so much for taking the time to post your own experience, kind understanding and perspectives.

Blessings to you!
Janet

[Dax]

Hi Janet!

First, LOVE your new pic! Noah's pic is adorable as well. I just came across this post (I know two months late) and I had to comment. Mostly because I read the other comments and I had to go back and read your post two more times. You didn't call your son "Fucked up", as alleged by DL. You were referring to the diagnosis (or lack there of) in these cases. It's basically what the "Doctors" are saying.

You were just being frank in your post and injecting some much needed humor. As Teasmail said, god forbid you speak like a normal person and with a sense of humor. Anything to find something to use as fodder against you. And like you said, all over one review from a year ago?!?

Some people just have a holier than thou attitude.

Keep up the great work! ;o)

Love, Dax

[Janet Boyer]

Oh Dax. Your post brings tears to my eyes. THANK YOU. (Noah is taller than I am now...and yes, I went back to blonde. ;o)).

What's especially disturbing, to me, is that this was the FIRST time I publicly wrote about Noah's diagnosis. I resisted it for some time, because it's a personal thing that caused us SO MUCH heartbreak and stress for the first 6 years.

I wanted to give others hope that children can come out on the other side and be highly functioning, but also to be honest and say "I may look all bubbly and happy, but you have no idea the private pain my husband and I have have had to deal with" (people mistakenly believe I lived a charmed life sometimes...go figure!).

And then to have someone who contantly says how "gentle" and "positive" she is, spreading her saccharine all over Twitter and such...but then, be so venomous to another mother? And use Noah as fodder for her vitriol? Shameful and disgusting. I hope people wake up and see her what she is REALLY about (as this post, and the ones she used to make at the Tarot Guild, clearly shows).

Thank you so much for stopping by, sharing your heart and encouraging me! XOXO

Love right back atcha,
Janet

And YES, you absolutely got the point of my post.

[Alison Cross]

I read your post and thought that it was great and I too read your work as the DOCTORS making the 'fucked' up comment, not you.

I think raising kids is HARD. Full stop. Well, I think it is. God knows what it must be like keeping going and remain upbeat if autism is also added into the picture.

There are SO many badly behaved kids these days, Janet. In all honesty, I can see why most diners would assume that it was purely bad behaviour in a restaurant, but I can offer no solution to the dilemma of being able to differentiate between autistic behaviour (in which the family needs supported) and kids acting really badly (where behaviour needs pulled up)

Great post!

Ali x

[Janet Boyer]

So good to see you, Ali!

You're right, there ARE very badly behaved kids these days. Without a trained eye, the average person would likely NOT realize what was "acting up" and what is "overstimulation" because of being on the spectrum.

Hopefully, with posts like this, individuals will at least realize the overwhelming sensory world that Autistics must face. Things that are "normal" to us--a toilet flushing in a public restroom, for example--can terrify them into a major reaction (this is how Noah used to be, in fact).

I so much appreciate you stopping by and lending your support; it means a lot. That was my first, and quite raw, public post on Autism and how it has touched our family. I knew solutions wouldn't/couldn't be generated, but, at least, maybe someone out there would be given hope if they have a child on the spectrum or illumination if their lives have never been touched by this perplexing diagnosis.

XO