AGE OF AUTISM

Barbara Fischkin on the Columbia University Autism Conference

Read Barbara Fischkin's full blog post at her Spectrum Publications Blog.

Taking our son Dan off the anti-psychotic Haldol, or Haloperidol, has been harder for him than we ever imagined. It's a long autism-related story and when the process is complete, or perhaps sooner, I expect to write about it in great detail.
For now, here's the short version: My husband and I put Dan on this invasive drug many years ago for some very good reasons. Basically, it enabled us to keep him home until he became an adult. It stopped him from being a danger to himself and to others - and at the time it was the only thing that worked. A relatively low dose of Haldol treated a potentially lethal combination of autism, adolescence and puberty. Now, at almost 22, Dan is courageously facing some very difficult withdrawal hurdles.

If there is a bright side to this, it is that Dan's aggressive behaviors have not returned off the Haldol. I suspect the bio-medical interventions he is on have something major to do with this, as does his age. My fingers are crossed...

 

No More Playdates

By Cecily Ruttenberg

Seeing him alone on the playground is the most painful part.

He is eight years old and was diagnosed with high-functioning autism at age three. We have tried chelation, social skills groups, occupational therapy, RDI and even a little voodoo magic. Still, he eats alone.

For years I tried playdates. I would thumb through the school directory with a sense of defeat, dialing the mother I imagined least likely to say no. Then in my cheeriest tone, I would bargain for a day from some kid's week of baseball practice and hockey team, trying not to sound too desperate or available. If I got a yes, the real frenzy would begin. You'd think we'd be having the president of the United States for company. The preparation was unbelievable! By the end of it, I was like a strung out circus clown.

I won't do playdates anymore.

"Is He High Functioning?"

Managing Edtor's Note: I met Jennifer Larson at Autism One. She was the winning bidder for a post on AoA and an autism flag signed by everyone from Dr. Wakefield to Jenny McCarthy.  (Please don't tell her, but we'd have run this post even if she hadn't won the bid.)  Thank you, Jennifer.

By Jennifer Larson

“Is he high functioning?”

I can’t tell you how many times I’ve been asked this in reference to my autistic child.  I assume they ask because I’m knowledgeable and have tried so many things to help him.   The answer is a solid “no”. 

I categorize my son as a “non responder”.  My 1st DAN! Conference was when he was 21 months.  I was on this immediately.  We’ve tried “everything”.  A few things have helped along the way, Seizure medication, Fibroblast Growth factor (Dr. Aguilar) and Yasko’s program.  Otherwise, most things seem to make him worse.  It seems there is always a reason from physicians for a regression, but at some point you just want your child to feel good and move forward. 

About a year ago, I’d pretty much given up.  Acceptance wasn’t a place I’d gone.  I wasn’t in denial, but I was in denial that this was lifelong.  I kept thinking…  We caught it so early, why isn’t my son recovered?

You Don't Say - But Maybe You Should

By Robin Nemeth

We were at a Memorial Day weekend cookout.
 
"You don't have to talk to people," which really means ‘there isn't much opportunity for chit chat'. I think that was my niece, who knows the restaurant business somewhat well, talking about my oldest child and her summer job making salads at the local restaurant.
 
The fact that it was said didn't bother me all that much, although it would've been better said correctly. For with all jobs, every last one that I can think of off of the top of my head at any rate, there is a need to converse. But that's ok, it's just merely a matter of semantics, the mistake that my niece made.
 
What bothered me a bit more was the look that I saw on the face of another person seated at the table, and then the looks that were exchanged. That, to me, was the social faux pas. I always find it somewhat ironic when I am aware of the social faux pas of others. The look said "Ack, this is uncomfortable, we shouldn't be bringing this up!" The look said there is something shameful in the fact that my children, some of them, don't make casual conversation much or at all.  It was the kind of look that one might see if one of my children had syphilis or were in prison for committing some horrible crime and that were brought up as a topic of public conversation. I don't remember if any of my children were present, at the time. But they had been at the table earlier and could easily have been nearby observing the conversation. And ‘the look'. 

The Best Gifts for Father's Day are the Simplest.

By Tim Welsh

I never seem to go for the popularity vote. I know that there are many "bad" Fathers in the world. On Father's Day, I thought it would be appropriate to submit my very first post to Age of Autism. I want write about the way Dads are hard wired, dealing with Warrior Mothers and the path of Autism Recovery.
    
On a special day in June men are given a day to rest, relax, play, eat, watch sports, take a nap, and be king of the castle. Other than making love (For women) & Crazy Sex (guys words), that sums up the simple mind of the human male. One thing at one time.  If the list becomes more than three go back to the beginning and start over.  In life and business there are only two paths. You are either growing and improving or stagnant, declining, and dying. The world stops for nothing or no one. The status quo is only a way of viewing the world through rose colored glasses as it passes you by.
    
We all must invest more into our marriage, family, friends, and life. The battle is all we have. As has been said many times before life is not a dress rehearsal? We are on stage now and the curtain has risen. Small victories are huge victories and gifts from God. The Random "Hi Daddy", peeing or pooping in the right place, a hug, a kiss, or his wonderful smile.
    
It has taken years to learn these lessons from my son. Men in families must admit we not as strong as a mother fighting for her child. We do not have all the answers. We cannot fix many things when it comes to Autism.

Nathan LaBarba: Cousin Warrior

Managing Editor's Note: That great art is by Tina Chambers. www.digitialscrapbookplace.com.

By Nathan LaBarba

When I was 9 years old, the worst news imaginable was delivered to my family. No loved one had passed away, no house had burned down in a fire, and no one was in any dangerous car accident. This news came from somewhere within the deepest depths of our heart as a family, tearing us apart as it brought us all together. My cousin, baby Jared, was autistic. 
 
At this time in my life, autism was not a disease that I feared, simply because I had never heard of it. I remember hearing the news and shrugging it off as my mother and father, grandmother and grandfather, and aunts and uncles all crumbled under the tearful discovery before them. To me, Jared was still just a baby- drooling, crying, playing, and discovering the world. 
 
But to everyone else, Jared was so much more than just a baby. As the years passed on, autism came to define our family. From the moment the diagnosis came, the years were just a whirlwind of therapists, counseling, and endless, pleading hope. Our family gatherings became completely devoted to talking about Jared, discussing the disease, figuring out what to do. Not a single member of my family had ever encountered this condition, and not a single one of us new what to expect from the outset. Suddenly, we were all an immense part of an autistic child’s life, an innocent child exposed to diabolical circumstances beyond his or any of our control.

Science vs. Mother's Emotion: Turn a Lion into a Vegetarian

By Cynthia Cournoyer

When parents choose not to vaccinate, for whatever reason, they are usually accused of choosing “mother’s emotions” over “science.” The argument is framed so you have to choose between emotional mothers or proven science. These choices are set up to disparage mothers while giving the obvious logical choice of science. This is a false choice. Mothers emotions are valid and ironically it is the lack of science that mothers are the most concerned about.

It’s not science vs emotions, it’s no science vs real science. For a generation, parents have been asking for more science. Instead of properly controlled, unbiased studies, our population just gets more vaccines. A generation ago, states listed a few “required” vaccines for the worst diseases. Then they added a few more. Now, states automatically list every vaccine that was ever recommended. Today, same emotional pleas, still no science.

Life as an Extreme Sport

By Sierra Ansley

One of the things you learn quickly when you have a child on the spectrum is that ASD takes no breaks. It's 24/7, including evenings and weekends. You can't put it on hold for a while to catch up on sleep or get the house clean. It's relentless. The cruelty of this is that no one needs a break more than the parent of a child on the spectrum, yet no one has a harder time getting one. I am relatively lucky as my son is so mildly affected. Our daily lives have never been as challenging as they can be for families whose children have full-criteria autism.

However, I have been on a ride for the past nearly 5 years that just hasn't let me off. In order to stay sane under circumstances as these it is necessary to find some sort of escape, however brief or delusional. Eating treats late at night helped for awhile, although this diminished in effectiveness when I began to follow the special diets as well. Even on the SCD I do still find ways of indulging such as peanut butter with honey, but it just isn't the same as a big dish of chocolate ice cream. Getting lost on the Internet late at night has been a favorite of mine, and judging by the level of company I find there, a common favorite for others as well.

Autism One Lit a Fire

By Angela Warner (That's Angela, Pam Felice and Vicky Sabula at Autism One.)

Autism One! May 19 through the 24, 2009!

I attended the Autism One conference in Chicago, IL. Autism One lit a fire under my ass!!! (I know, those of you who know me are probably thinking, did she really need that? LOL.) I am still flying high!!! I've not even completely unpacked my suitcase yet (yes I washed my dirty laundry). My suitcase is still being moved between the bed and floor for therapy sessions and sleeping purposes. I may get to it this week. I've just had way more important things to do and honestly I have thought it may just stay that way until next year, because I’ll be there for sure. I'll have less packing to next year, right?

I flew into Chicago and Autism One on Tuesday afternoon (May 19th), and Tuesday night I was hanging out with those who have been the backbones of our community. Immediately I knew each and every one of them as family. I wish it wasn't this way, honestly, because I met these family members because of autism. And autism sucks!!! But I am so glad I did because meeting them and connecting has given me; a tremendous spiritual lift, given me more tools and opportunity to help families and kids currently in autism, and to "pay it forward" to help new families, and ultimately to help stop the madness behind what the cause is of autism.

Marines Lining Up Recruits with Autism? Chantal Sicile-Kira on HuffPo.

Click HERE to read and comment on our good friend Chantal Sicile-Kira's piece on HuffPo about her son Jeremy's recruitment by the U.S. Marines. I think our military better pay a little better atteeeeeeeenshun!

This morning, the headline of my San Diego Union Tribune read: Case stirs military recruiting questions - Autistic man in brig, facing court-martial. I read this after helping my son - who is non-verbal and severely impacted by autism - get on his special education bus for the ride to high school. He too has been recruited by the military.

How Pvt. Joshua D. Fry was recruited - he lived in a group home and is under limited conservatorship - is beyond comprehension. However, I get enough emails from parents to know they deal with recruiters all the time. I even wrote an article about my son's experience.