AGE OF AUTISM

Our Very First Trip to the Movies

By Rhonda Lessard

"Could you move down another seat?" one mom said to another in the row behind us.  "She hits."

"Oh of course," the second mom said, moving herself and her son down two seats, "is this ok?"

Not a typical matinee but the funnest (and only) one we've ever been to.  This morning a local movie theater had a "sensory friendly" viewing of Madagascar 2, where it wasn't as loud, wasn't as dark, and kids were welcome to walk about and make whatever noises they wanted to.  Josh and I took all the kids - at $5 a head, it was worth a try.

Walking into the lobby, it was hard not to notice this was a special event.  Kids were running and jumping and flapping and squealing - a lobby full of Morgans of all ages!  Josh took Morgan to the bathroom where he found 5 other dads with 5 other sons coaxing them into stalls and walking them through the bathroom process.  He said he felt like shouting "I'm home!"

We got front row seats.  Or rather Josh and Timothy and I got front row seats.  Morgan joined the other kids running across under the screen flapping and jumping, and Jocelyn and Jesse decided to join in.  Josh and I just sat and smiled.  There were kids of all ages.  A girl of about 10 came up to me.

"Excuse me" she said rather loudly.

"Yes?" I replied.

"I have a new song, want to hear it?" she exclaimed.

"Of course," I said smiling.

Order Ready, Set, Potty! By Brenda Batts for Autism and Developmental Disorders

Toilet training a child with autism. Scary stuff, isn't it? There's a new book that hits the bookstores on August 15th. It's called Ready, Set, Potty! by Brenda Batts. I met Brenda at the NAA conference in early November of 2007. I was mesmerized by Brenda's system. It made so much sense to me, and I was eager to get my Bella out of diapers.  I followed Brenda's instructions to the letter and sure enough, after 48 hours, Bella had released into the toilet several times and was on her way to success. Previous attempts meant literally hours sitting on the toilet with no success, only to have a puddle on the floor seconds after leaving the bathroom. Go ahead, Pamper yourself. Get the book.  ;)  Kim

Pre-order your copy HERE. You should buy one for your school too so you're on the same page. Here's the description from the publisher, Jessica Kingsley Publications.

Potty training a child with developmental disorders can present a vast array of challenges, many of which are not associated with teaching a neurotypical child how to use a potty. In this book, Brenda Batts overcomes difficulties and provides tried and tested methods that really work, tailored to each individual child. Bursting with ideas on how to see past conventional strategies and adapt toilet training to suit your child, this book outlines methods that have helped even the most despairing of parents and caregivers. Examples of success range from two year olds to adults aged twenty, and show that no matter how difficult it may seem, a little creativity and adaptation can get anyone toilet trained, no matter how many previous attempts have failed. The program itself is supported by plenty of helpful hints and tips, as Brenda covers all you need to get your child past the diaper stage and help them achieve a big step towards independence. This book will be essential reading for anybody looking to toilet train someone with developmental disorders.

Brenda Batts is a Behavior Consultant, the mother of two sons, Alex, an 18 year old teen with Autism, and Douglas (JR), a typical, 21 year old college student. She is owner and director of Focus on the Future Training Center, a private school for students with Autism and other related developmental disorders located in Plano, Texas. Brenda holds a BS Degree in Special Education, and a Masters of Education with specialization in Exceptional Student Education. Through her workshops and presentations as a national and international speaker in the field of special needs, coupled with her own personal journey as a parent of a teen with Autism, Brenda is committed to the path of helping special needs students achieve independence.

Young Man With Autism Dies, Forgotten in Hot Car

20 year old Bryan Nevins died after being left in a hot car by his "caregivers" who didn't notice he was missing until his meds were due.

Didn't notice he was missing until his meds were due.

Didn't notice he was missing until his MEDS WERE DUE.

This story is a stark reminder of what little boys and girls might face as they become adults. Our sincere condolences to Bryan Nevin's family.

Read more at NBC Philadelphia and Gothamist. A follow up to the story is HERE.

Autistic Man Left in Hot Car by Caregiver Dies

Investigators want to know how a man with autism could be left inside a van for hours in the intense heat just steps from the facility where he lived.

The unidentified 20-year-old man died after spending more than five hours inside a van operated by Woods Services in Middletown Township, Pa. last Saturday, police say.

The man, whose autism left him unable to speak, was in the backseat of the van for a return trip from Sesame Place in Langhorne, Pa. with three other residents and two caregivers.

Autism is Not The New Normal: Bronx Mother (Allegedly) Murders Autistic Son

By Kim Stagliano

This morning Tanner's Dad (Tim Welsh) Tweeted a blog entry HERE from a pediatrician who talked about autism, and that it's "normalized" for him. Really doc? Autism is not the new normal. Asperger's or autism - the joys our kids bring are many. But so are the stresses. Normalized? Feel free to comment on how normal your life is at his blog HERE. Last week I was on HLN talking about the mother in Dallas who brutally murdered her two young children with autism. I told Jane Velez Mitchell's producer, "Hang onto your hat, there will be many more such tragedies as autism overwhelms families." I didn't expect one so soon.

NY Daily News: Bronx Mother Kills Son, Self Cops Say

Frustrated over the demands of raising an autistic child, police believe, a Bronx mother shot the boy to death before turning the gun on herself Wednesday night, cops said. Micaela Jackson, 37, and Kenneth Holmes, 12, both killed by a gunshot to the head, were found in bed in the single mother's apartment on Loring Place in Morris Heights, police said. The suspected murder-suicide - the second in as many weeks in the city - left Jackson's family and Kenneth's father shattered. Read more: HERE.

Kim Stagliano is Managing Editor of Age of Autism. Her book from Skyhorse Publishing, All I Can Handle I'm No Mother Teresa; A Life Raising Three Daughters with Autism is available now for preorder and debuts November 1st. Visit her website at www.kimstagliano.com.

Are Doctors Classifying Children with Autism as Something other Than Human?

Managing Editor's Note: The red headline below begins Judy Converse's letter to the journal Pediatrics in response to the article titled, Feeding Symptoms, Dietary Patterns, and Growth in Young Children With Autism Spectrum Disorders.  Judy runs Nutrition Care of Children. 

Alan Emond, MD, Pauline Emmett, PhD, Colin Steer, MSc, Jean Golding, PhD Here's the abstract:

Centre for Child and Adolescent Health, Department of Community Based Medicine, University of Bristol, Bristol, United Kingdom

Objective To investigate the feeding, diet and growth of young children with autism spectrum disorders (ASD).

Method Data on feeding and food frequency were collected by questionnaires completed at 6, 15, 24, 38 and 54 months by participants in the Avon Longitudinal Study of Parents and Children. A food variety score was created, and the content of the diet was calculated at 38 m. The feeding and dietary patterns of 79 children with ASD were compared with 12 901 controls.

Results The median ages of ASD children were 28 months at referral and 45 months at diagnosis. ASD infants showed late introduction of solids after 6 months (p = .004) and were described as "slow feeders" at 6 months (p = .04). From 15–54 months ASD children were consistently reported to be "difficult to feed" (p < .001) and "very choosy" (p < .001). From 15 months, the ASD group had a less varied diet than controls, were more likely to have different meals from their mother from 24 months, and by 54 months 8% of ASD children were taking a special diet for "allergy."

ASD children consumed less vegetables, salad and fresh fruit, but also less sweets and fizzy drinks. At 38 months intakes of energy, total fat, carbohydrate and protein were similar, but the ASD group consumed less vitamins C (p = .02) and D (p = .003). There were no differences in weight, height or BMI at 18 months and 7 years, or in hemoglobin concentrations at 7 years.

Conclusions ASD children showed feeding symptoms from infancy and had a less varied diet from 15 months, but energy intake and growth were not impaired.

Pediatrics: Nutrition Doesn't Matter For Kids? 22 July 2010

Judith M Converse MPH RD LD,
pediatric RD
Nutrition Care of Children 
Send letter to journal:
Re: Pediatrics: Nutrition Doesn't Matter For Kids?

According to this research, kids with autism tend to eat terrible diets, but this doesn't affect growth or nutrition status.

I'm a licensed registered dietitian who has been in practice for more than ten years, working with special needs children. I have quantified food intakes and assessed growth patterns on hundreds of children with autism.

My experience in practice strongly disagrees with this conclusion, but I will leave it to a parent to illustrate with her own quote how preposterous this study’s conclusion is (as printed in The Chelsea Standard (Parents Adjust To Life With Autistic Child ) "...he suddenly stopped talking. He stopped eating any food except for pretzels. Instead, he ate sand, wood and rocks."

The message from Pediatrics on this permits clinicians to conclude that this should trigger no particular concern. It's okay for kids to eat nothing but pretzels, sand, wood, and rocks. No medical intervention required.

Did the research mean to suggest this is only okay for kids with autism? In a fashion similar to how it has become acceptable and too frequent for young school children with autism to be tasered (as in HERE), but not typical kids?

Is this where we are going - classifying children with autism as something other than human?

I've seen eating patterns like this in kids with autism many times. Any classic nutrition text describes "pica". This research even noted that the children with autism had pica at nearly six times the rate of their typical peers – but inexplicably, the authors don’t mention that finding in their discussion or conclusions. Mercury poisoning, lead toxicity, poor zinc status, copper imbalance, or iron deficiency tend to accompany an eating pattern like this, in any child. Pica is not benign; it is associated with poor impulse control and obsessive compulsive behaviors - common features for children with autism - and with dangerous exposures to metals that can injure the brain. This is just one of many nutrition problems I routinely find when I assess children with autism.

In fact, in 11 years in practice, I have never encountered a child with autism who did not have a treatable nutrition problem. They do typically eat extremely limited diets. It isn't unusual for me to see no more than three items on a food diary: "Gogurt x 3; chocolate milk 4-5 cups/day; plain noodles, 1 big bowl" …and this is what a child will have been eating year in and year out. It's no stretch to intuit that this will leave any child bereft of adequate nutrition to learn, grow, sleep, thrive, or behave to their potential. We would never leave a typically developing child on a diet of nothing but literally only coffee cake and milk for years (another example from my practice).

What happens to children who eat like this? My case files illustrate that they get sick more often, become constipated, behave poorly, acquire anemia, acquire deficits of nutrients that impair them functionally, can't focus, don't sleep, and may not grow as expected, just for starters. But now, we can rest assured knowing that this is okay, as long as your child has autism, thanks to this research.

I noted astounding methodology flaws in this paper that let the data show - essentially, nothing. Here's where the study went wrong – the errors are many, and egregious:

Influenza Vaccine Special Meeting Today: Public Invited to Participate

Interim Influenza Vaccine Information Statements Special Meeting
Thursday July 29, 1 to 2 pm ET

The Advisory Commission on Childhood Vaccines will review the CDC's draft statements slated for distribution during the 2010-2011 flu season. The conference call meeting is open to the public. Persons who wish to make oral statements may announce their intent at the time of the public comment period.

To join, phone 1-888-606-5950
Leader’s Name: Dr. Geoffrey Evans
Password: ACCV

See http://www.hrsa.gov/vaccinecompensation/ for details on the right hand column.

Autism: Transitioning To Adulthood with Chantal Sicile Kira & Son Jeremy

 

Join Us In Cooperation with Beth Israel Medical Center's
Department of Developmental Pediatrics

Chantal Sicile-Kira and her son Jeremy

 
Transitioning to Adulthood with Autism: Hope, Inspiration and Information

Date: Thursday, July 29, 2010
Time:  2:00 pm - 4:30 pm
Location:  Beth Israel Medical Center
10 Union Square East
New York, NY 10003
2nd  Floor Conference Center
Conference Rooms 2 and
There is no fee and no registration required.

The Nanny Vs. The Nanny State: Drescher Questions Sebelius on Vaccines

Managing Editor's Note: Fran Drescher is  a noted actress, cancer survivor, author and founder of Cancer Schmancer. Kathleen Sebelius is head of Health and Human Services. Secretary Sebelius told Reader's Digest that she encourages media censorship when it comes to vaccines, "There are groups out there that insist that vaccines are responsible for a variety of problems despite all scientific evidence to the contrary. We have reached out to media outlets to try to get them to not give the views of these people equal weight in their reporting to what science has shown and continues to show about the safety of vaccines,” (See HERE). Thank God someone forgot to tell Fran Drescher about the blackout. (Insert fabulous laugh here.)
  
By Anne Dachel
 
July 22, 2010 U.S, Health and Human Services Secretary Kathleen Sebelius joined several women, including actress and cancer survivor Fran Drescher for “web chat” about the Affordable Care Act.

This was put on by the Public Affairs Dept at HHS and we were told about the new law that “is designed to put you in control of your health care.”

It was a half hour show and the beginning was about health care needs in this country and about what the new legislation would do.  Among the participants was actress and women’s health advocate, Fran Drescher.   She talked about “living preventatively.”  Addressing women, Drescher spoke about the effects of “what we expose ourselves to on a daily basis,” including cleaning products and what we put in our bodies, what we eat.  She pointed out that we should eat foods that are “low in pesticides and chemicals.”  She advocated for “more whole foods” saying, “Even Wal-Mart is offering organic food now days.”

Sebelius was asked whether vaccine coverage is in the new health care bill.  She assured everyone that it is.

At that point Drescher said, “Can I interject a minute?”

She brought up the subject of vaccine safety.  “Do you have an opinion or is there any effort,…on looking into spacing apart immunizations?

Because over the decades, there have been more and more immunizations offered to children.  Where there might have been seven at one point, now there is like 18 I think.  And I was just wondering whether you had any thoughts on it or whether you think that there is any kind of growing awareness raising in the medical community toward spacing them a little bit.”
 
Kathleen Sebelius responded:

“I know that at the National Institutes of Health, there’s an Institute on Vaccinations and one of the things they do is constantly run clinical trials, testing not only safety of individual vaccines, but safety of vaccines given together, spacing components, how frequently they have to be given in terms of boosting immunization.

"So that’s the safety features, something that we’re very aware of and concerned about.  It’s a bit of a Catch 22,.  What you want to do is to offer them in a way that’s convenient, so if your child can safely have a couple of things taken care of at same time, you want to do that as opposed to saying to a busy mom or dad, come back three weeks in a row.  But clearly, the safety issues are primary, so that’s constantly being tested and evaluated.”

This exchange took only a few short minutes but it immediately got a response from the autism community.   Many people are very angry at the blanket assurances from Sebelius that there’s such a focus on safety when it comes to vaccines. 

A Tribute To National Autism Association Co-founder JoAnne Pike

Managing Editor's Note: Jo Pike was a co-founder of The National Autism Association. She died on July 9th, after a battle with cancer.

The Butterfly Effect

By Lori McIlwain

I believe that to be a leader, you must have more hope in your heart than fear. Fear won’t allow you to take a stand without reluctance, or speak without anticipated rejection. It won’t give you an original point of view, or allow you to remain unapologetic. It will only make you believe that change is too difficult, and that no human life is valuable enough to initiate it.

Jo Pike never had fear in her heart, only hope.

The only way I know how to write about Jo is through my own perspective based on experiences that I know and understand. It’s my hope that in writing this tribute, I not only communicate just how strong she was, but how the determination of just one person can have a gradual, widespread effect. 

I’ll acknowledge upfront that whenever people we love leave this earth, it’s difficult to do anything but champion them. They were perfect. They did no wrong. They were extraordinary. Like anyone, Jo was far from perfect, so I won’t pretend otherwise. But unlike most, she was absolutely extraordinary.

March 4, 2010
Lori, I have given it up to God and know that no matter what happens, it is his will. Love you, Jo

JoAnne Pike was born in Fairfield, Maine in 1966. A military wife, she moved around quite a bit until she ended up in Marion, South Carolina, where she lived with her husband, Greg and their four children, Matt, Aaron, Hunter, and Taylor. She officially became a part of the autism community on Valentine’s Day, 2000, when Hunter was diagnosed with autism.

October 2005
It’s not that I didn’t know something might be wrong before that date but to hear that official diagnosis made it all so real. ‘Autism,’ a word that we hoped we’d never hear. There was no denying it any longer. How could my two-year-old son have a diagnosis that we were told time after time was hopeless. Words like institution, aggression, no cure were everywhere we looked. - Jo Pike

My son Connor was diagnosed not long after Hunter, and by 2002, Jo and I were parallel posters on autism discussion boards. For a good year I had studied research, treatment options and just about every trick other parents had up their sleeves. Like many moms, I saw changes in my child after his immunizations and I was looking for ways to reverse those effects. And like others, I had a lot of questions. It wasn’t something I would let go. Jo’s posts, as I came to notice, showed that she wasn’t letting go either. She demonstrated enthusiasm, ambition and drive, not only to help her son, but in getting answers about the autism-vaccine connection. She was what I considered a “let’s do” sort. Let’s do this. Let’s do that. Let’s not give up on our kids. Let’s get the research. Let’s stop talking and do.

May 2002
I was told by doctors that my son had no hope that I should just take him home and love him and just plan on him being in an institution and that wasn't acceptable. That's not acceptable to me. I will find a way, and there
is a way, and we are going to find it, and the research will tell everything. - Jo Pike

When Jo posted an energetic message asking parents to come together to place a full-page ad in a national publication about the autism-vaccine connection, I wrote with an apprehensive offer to help. I loved the idea of mass awareness of the issue.  At the same time I knew there would be a good amount of grief involved in executing an ad like that.

Jo’s reply was almost instantaneous. What I remember most about her at that time was her ability to do the opposite of what I expected. Here was a mom with passion and ideas, which typically leaves room for little compromise. But to my amazement, she was flexible. She had no sense of ownership. She was willing to listen instead of tell. She’d encourage participation from everyone around her and championed his or her ideas. It was a “you before me” attitude. Give and take. She made it easy for people to work together, and want to work with her.

July 2002
This full-page ad will educate the public about how environmental toxins are affecting the world's children. Its message will also appeal to senators and congressmen who can help our children today and in the future. - Jo Pike

Using the Internet, Jo and I began reaching out to parents. It was nonstop posting from morning until evening asking everyone who had an affected child to donate a dollar. Several organizations stepped in to help and we found ourselves surrounded by enthusiastic parents who were tired of being accused of blaming others for their child’s autism. To us, we were simply relaying the patterns we saw. Our children regressed after vaccines. Vaccines contained mercury.  We found high mercury levels in our children.  It wasn’t about blame or money or emotion, it was about speaking honestly for the sake of getting honest answers.

Win Lunch with Dr. Andrew Wakefield

Click HERE to visit the SafeMinds MercuryFree Kids 2010 Auction.

Care to wine and dine with Dr. Andrew Wakefield? Start bidding!

The Mercury Free Kids 2010 Auction is now open. The auction will run from July 20, 2010 to July 30, 2010, with proceeds going to Coalition for SafeMinds in order to restore health and protect future generations by eradicating the devastation of autism and associated health disorders induced by mercury and other environmental toxicants.

View the auction Items HERE. Happy bidding!