A Safe Place in this Universe

Today I had the pleasure of meeting a very opinionated father at the playground. He watched as my daughter avoided other children, hid behind me, and yelled if someone tried to play with her. He politely but assertively told me that I should just "throw her to the wolves.” "She’d be okay," he insisted. He suggested that "throwing her to the wolves" might just force her to be more accepting of other kids and make her become more social.

I politely listened, and then I responded:
Our entire lives, starting at birth, people will tell us how we need to be more of this or less of that. They'll tell us how being more like how they’d like us to be will make us “better” and “more right”. If we have only one person in our life who thinks we are perfect exactly the way we are, who supports our growth in whatever manner WE choose to grow; and who truly loves us without conditions—we are blessed, deeply blessed.

I’ve chosen to be that person for my daughter. I've chosen to honor who she is, to let her know without a doubt that I love her no matter what. I've chosen to let her know that she is okay, and more than okay—she is perfect and amazing just the way she is. I've chosen to be her safe place in this universe to explore, grow and experiment with who SHE wants to be. I've chosen to never insist that she be or act a certain way in order to be more accepted by me.

I have chosen to be her blessing—and I am at perfect peace with that.

Delayed Grieving

Delayed Grieving
by Leslie McCann

I spent five years defending my daughter’s needs to
professionals, to family members, to perfect strangers
and to my own husband. It was five years of pure
hell. See, for some reason, in our society if you don’t
have some sort of professionally labeled & drug-treatable
disorder, then there is nothing wrong with you.

Parents these days have children with all kinds
of problems: hyperactivity, food sensitivities that
lead to undesirable behaviors, sensory issues that lead
to undesirable behaviors, undiagnosed autism spectrum
disorders, defiance disorders, obsessive compulsive
disorders -- the list goes on. Without something
to call it, parents are wide-open to judgments and
attacks on their parenting choices.

I was the wide-open parent for five years, and it wore
me down. I knew my daughter’s heart. I knew she
was pure love and I also knew that she was suffering. And I
refused to let a lack of diagnosis allow her needs
to go unheard. Label me crazy, but respect my baby!

After five years of condescending professionals, know-
it-all parents and a generally unsupportive network of
people, my daughter finally got the diagnosis she
deserved: Asperger’s and Sensory Processing Disorder.

Wow! Finally! It fit perfectly! Sadly, I was excited that
she fits into a box. After all, that's how people communicate
and relate -- in boxes!

When the psychologist told me what the dx was, I said to
her, "Most parents are probably devastated when they
hear autism-spectrum-disorder. I’m not! I am thrilled!"

I am, sadly, thrilled. I explained to her that it wasn't that
I want her to have autism, it’s just that I'd put up with
years of having to deal with autism, but not having any
support -- because I couldn’t call it autism. I dealt with
years of being told it was my parenting, when, in fact, I am
an amazing Mother. I have been my daughter’s safe place in
this universe and all I ever wanted was for her needs
to be respected and accepted as valid.

Thankfully, the psychologist understood!

Well, two months after the diagnosis, I was reading
an article in Living Without magazine while having
dinner at a health food store. I turn to this article:
LOST AND FOUND: "Food as treatment for Autism
Spectrum Disorder. Changing a diet transforms a life."
I start to read, and out of nowhere, I start sobbing
uncontrollably. Holy crap! Where is this coming from?
It felt like the kind of cry that was going to get ugly quick …
I packed up my food and headed out to the car as fast as my
feet would take me. I couldn’t drive … I couldn’t see …
I couldn't stop crying.

What was wrong with me?

It was the article. No, it was what the story brought
up for me. It was everything about my five-year battle. And
at the core, it was about my loneliness in it. It was about the
extreme resistance I faced, the judgments, the criticism, the
money battles for treatments, the fear and angst of being the
only one who seemed to understand my daughter. The stress
of being solely responsible for researching and implementing
treatments. The sacrifices that went unacknowledged, the
pain and the hurts.

I realized I never got to grieve. I never got to indulge in a
little self-pity for the day-to-day struggles of dealing with a
child who was all-consuming … because, remember, before
the diagnosis, there was “nothing” wrong. If I didn’t like it,
people said, “I should just change my parenting.” It was the
fact that I, too, found my daughter, who had been lost. It
was because I, too, transformed her through diet. It was
about never hearing a sincere "thank you" or "nice job."

Realizing that I obviously needed that cry, I let it run its
course. When I felt composed again, I got back to the
article. I read this part -- “Together the parents resolved to
do everything in their power to 'bring Kaitlyn back'” --
and lost it again.

Then I further read about how
dad wasn’t initially on board with the diet, and called his
mother for help to deter his wife from using the diet. I read
how his mother told him to support his wife -- that his wife
had the best intentions for their daughter. I read how it
swayed him and how he got on board 100%.

They were in it together! It took his wife a mere week to
rally support from her husband, and her mother-in-law
helped her! Wow! I sat sobbing desperately again. It hit me
like a lead baseball bat: The reality that the diagnosis has
brought my daughter and I absolutely zero additional
support.

I am still in this alone. It is still going to be me against the
world.Now, instead of there being nothing wrong, it’s just
that everyone has an opinion on how I should be moving
forward from here … which, of course, doesn’t include me
having any credible say-so.Lovely, just lovely!

But, while all that brought me to my knees, the thing that
killed me, was that I never got to grieve my daughter’s
diagnosis.Oh my God, my daughter has ASPERGER'S!
I never got to grieve that my daughter has severe
theory-of-mind deficits and what that meant for her. Would
she ever be able to have a healthy relationship?
I was too consumed with the victory that would end my
long battle to get her seen, heard, and understood. I was
convinced that the lack of support came from the lack of
diagnosis. Wrong! I was angry that, because of what I'd
been through, I was relieved to have a diagnosis. It was
messed up, and I felt sick to my stomach.

I guess this was my little moment in time to grieve -- alone --
whether I was prepared for it or not! My quick little moment
in time to feel sorry for myself. My opportunity to unload
years of pent up emotions.My opportunity to pat myself on
the back for progress made. My opportunity to start the
healing process.

Through this experience, I learned that I can unknowingly
have deep grief, but that the grief has a mind of its own. And
it may come out, even if I’m in the middle of dinner. In
public.You may want to consider that before inviting me
over to eat.

Letting Go! The Journey back to Grace and Dignity

Letting Go! The Journey back to Grace and Dignity. Finding balance after the diagnosis by Mary Romaniec

See video here


Along the road toward recovery, a parent/caregiver finds their sense of grace and dignity has taken a back seat to the health and well being of their child. The parents' health suffers, as often does the marriage. Family dynamics are changed and challenged. This presentation will alert parents/caregivers to the odyssey toward their child's recovery and the toll it can potentially take on the caregivers' health and marriage. The presentation will offer well-honed strategies to stay connected as a couple, stay connected to the other children in the family and provide a sense of relief over the everyday stresses that come with the autism diagnosis. The topics discussed in this presentation are not commonly covered in autism conferences but are still very much a part of the autism diagnosis. It is recommended for parents feeling the daily stress due to the demands associated with their child's autism. It is also recommended for couples who are seeking a different perspective on how to overcome the toll autism has placed on their marriage. Traditional marriage counselors are not equipped to address the unique issues that arise after a child has been diagnosed. The strategies discussed in this presentation will be sure to put a smile on the face of all who attend as they find the tools to "balance" after the diagnosis.

Mary Romaniec is a recognized authority and speaker on the subject of autism. Her own son's recovery from autism has inspired her to take on the role of mentor, writer and speaker. When her own son, Daniel, was diagnosed with autism at the age of 18 months, she soon learned how little the medical community understood about this disorder, which has been claiming children in unprecedented numbers all over the world. Driven by a sense of urgency, Mary began long nights of researching the Internet, speaking with other parents and attending conferences that discussed ways to treat autism. Contrary to the widespread myth that children cannot be treated successfully for autism, Mary was able to unlock the door that led her son to be declared recovered by the age of four. Along the way, Mary began reaching out to other parents who were just beginning the journey toward recovery for their children. As a mentor, she authored the 10 week GFCF diet calendar, which is in wide use in the autism community on various websites and quoted as a valuable tool in Jenny McCarthy's book, Louder than Words. She has also written other articles on the topics of IEP negotiation, marriage topics and care for the caregiver. Her articles have appeared in Mothering Magazine, Autism/Asperger Digest, Autism Today and Journeys Magazine as well as other autism-related websites.

Can Your Child, With Sensory Issues, Learn to Tolerate Holiday Gatherings and Parties?

I love this article! I think it points out nicely that we, as parents, need to respect and sympathize with our sensory-sensitive children. The fact is, that regardless of how hard it is on us, it's a million times harder on them. It's our responsibility to protect them, respect them, and help them help themselves. It's our responsibility to teach the world about what they are going through, and to understand and honor them. They deserve that! And I think it's selfish to try to make them fit into our "box" of what constitutes "normal" behavior. I think it's selfish to not put their needs first.

Time after time, I watch my daughter escape into her own little world when we are around groups of people for too long. The mall, social groups, family gatherings, playgrounds, and so on-- turn my normally talkative, interactive, fun-loving daughter into a depressed, scared and lonely-looking shell of a little girl. It's as if she is screaming, "Help me! I have no where to run, so I am going inside myself." It's so sad, and I feel really bad for how hard it must be for her. I'm so glad I am a parent who is aware. I am so glad I am a parent that puts her first; she deserves that! Anything less would be selfish on my part.


Can Your Child, With Sensory Issues, Learn to Tolerate Holiday Gatherings and Parties?

By Nancy Peske

Although we all want children who have sensory issues to enjoy parties, family gatherings, and school social events along with everyone else, the stimulation that these situations provide can be much too unsettling for some kids. A child may actually go into what is called a panic response of "fight or flight," where his nervous system reacts as if he is in actual danger when what's really happening is that the noise, lights, and movement are so intense for him that it is triggering this primitive survival response. The sound of a group of several children singing in unison may make him feel to him as if someone is attacking his ear, while he may perceive all the visual stimulation of colored lights, party decorations, and people milling about as an all-out assault on his nervous system. So how can we help these kids to have fun without removing them from the situation completely?

The answer is that sometimes, we can't. Children with sensory processing disorder need a quiet, safe, low-stimulation environment to retreat to when they begin to feel their anxiety rising. If the child is becoming stressed out, accompany him to a quiet, dimly lit room nearby-a cloakroom, a bedroom, or even an unoccupied bathroom. Offer him opportunities for comforting and focusing stimulation. He might want to sit and rock, listen to calming music on a personal music player, lie on a couch or sit in a chair as you gently press pillows against him, or lie on the floor as you roll an exercise ball over him, pressing gently as you do so. Oral comforts such as a lollipop, chewing gum, or other chewable item may help the child regroup and, in time, return to the event. Earplugs can help reduce some of the noise, and activities that allow him to hyperfocus may make the "hoopla" less distressing to his nervous system. Calming activities can be done before, during, and afterward, as needed. The key is to ask the child to help you identify what would make him feel more comfortable.

You might give the sensory child a pile of Legos or blocks, or allow her to play with a toy on her own off to the side of the main activity area, if that is what she needs in order to be a part of the group. Don't assume she doesn't like the other guests just because doesn't want to participate in the activities the other kids are enjoying. She may be better off socializing in a more low-key atmosphere with a minimal number of children and a focused activity such as a craft project, a baking project, or a card game or board game. She may not be ready yet for a party with all the cousins, or the kids at the day care center. As she develops ways to accommodate her sensory issues and you and others work with her to develop her ability to tolerate stimulating environments, she will be better able to handle a variety of sensory situations.

It may be that the child can't handle the activity at all and, for safety reasons, needs to be escorted home. Be prepared to "rescue" your sensory child at preschool, late at night at a slumber party, or during a family gathering. You might want to ask a close friend or a relative to be available to take her in or watch your other children should you realize your sensory child cannot handle the situation. If you talk to your sensory child beforehand and let her know what her coping strategies and options are, however, you may be able to ease her anxiety enough that she will push herself to tolerate the unusually high amount of stressful stimulation. Encourage her to let you know her limits and be as flexible as you can, or let it go this time and simply plan an alternative celebration she can handle.

Nancy Peske is the coauthor of the book Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues and sends out a weekly newsletter of practical tips for parents and professionals who work with children who have sensory processing issues, available at http://www.sensorysmartnews.com.

Autism Yesterday - Autism is Reversible

We've come so far, my Love

We've come so far, my Love

By Leslie McCann







With each improvement comes new expectations. I sometimes forget from where we've come. I sometimes focus too much on where we are now. I all too often focus on the things we still have to work on. I sometimes forget to pause in gratitude.

Therefore, I choose to take this brief moment in time to reflect on where we've come from ... to feel grateful ... to breath a sigh of relief that we are not THERE anymore. To be elated that we have come so far. We've come so far, my Love. Sweet Vail. My precious, precious Love.

* My daughter once had melt-downs so often that it would be impossible to count the number. Now, so few that many days we can count them on one hand.

* My daughter used to require being held 24/7 --literally! Now, I hold her about an hour or two a day.

* My daughter used to scream each time she didn't get her way . We never knew what would set her off or what her WAY or WILL was. Now she communicates her needs and wants quite well.

* It used to take us an hour to brush her teeth. Now, we can get through it in a quarter of the time.

* It used to take us hours to get her diaper changed. Now, we can get through it in a quarter of the time.

* My daughter used to NEVER play on play equipment when other kids were on it. We had to go to Chuck-E-Cheese in the Summer and the playground in the Winter in order to find them empty of children. Now, she'll play when other kids are there -- and sometimes, she'll even request to "make a friend".

* My daughter used to hit, kick and scream a lot. Now she seldom does any of these things .

* My daughter used to be so rigid that I lived in silent fear of from what the next big, unpredictable upset would arise. Now she can negotiate, she can communicate, she can work with her inflexibility -- she rocks!

* My daughter once screamed each time she had a bowel movement; it hurt! She has inflammatory bowel disease. Now, I can't remember the last time we saw tears with a bowel movement.

* My daughter once woke more than 30 times a night. Now, I count that many in a month.

* My daughter once had moderate to severe food reactions to 60 different foods --Horror! Now, we are only strictly enforcing only one!

* My daughter once screamed if someone even looked at her. Now, I can watch with pride as she interacts with perfect strangers.

* My daughter spent the majority of her first few years naked because clothes bothered her sensitive little body. Now I adore that she's developed her own sense of style and loves to wear and change clothes often.

* My daughter used to fall at random ;unbalanced, uncoordinated. Now she is stable, coordinated, athletic, and a phenomenal climber.

* My daughter used to walk on her toes ... no more!

* My daughter used to have regular night terrors. Now, she only has them when we sleep somewhere that has wireless internet (in other words, rarely!)

* For years kissing my daughter made her cry--she hated my kisses--. Now, being kissed is something she loves.

* I spent an entire Winter indoors because my daughter was afraid of thunder and lightning, and an entire Summer indoors because she was afraid of Bees. Now, we can venture out without anxiety and constant reassurance that something BAD is not going to happen.

* Due to her anxiety, not too long ago, I could not even get 5 feet away from my daughter. And being in a different room was out of the question. Now, I can be in the kitchen while she plays in the playroom.

* My daughter used to have brain-inflammation (head circumference went from the 5th to the 95th percentile in 9 months). Now, THANK GOD, it's resolved.


I am so grateful for where we are ... so hopeful about where we're going. So proud of my precious Love. I'm thankful -- even if I sometimes forget I am! 

Coming Out Of The Closet

Writing is cathartic for me. However, I'm not all that great at it. Grammar, punctuation and poetic irony all elude me. Not to mention, up until recently, I was JUST a mom with a child that had all kinds of "behavior issues", but whom professional after professional claimed didn't fit into a "box". Yes, I had my supporters, but they no doubt had their doubts too. After all, if the professional that evaluated her said she wasn't on the spectrum, who am I to argue? Well, I'm her MOM--and I count!

Although I was a mom who KNEW, mere knowledge is not sufficient--one must be able to express his or her knowledge clearly, forcefully and correctly. This is especially important when discussing a subject as controversial as autism and its alternative treatment modalities, and even more so when coming up against other parents of spectrum children who do not support alternative modalities.

Now that my daughter has an official diagnosis of Asperger's and Sensory Processing Disorder, I can come out of the closet. I can speak my truth; express my rage. I can finally join communities that will support me. I can finally speak from a place of credibility, or at least experience. I can finally say, "Don't judge her, she has autism spectrum disorder." I can finally say, "I don't care if you don't like it, she has tactile-defensiveness, do not touch her!" I can finally say, "My daughter is NOT a brat--she is love, pure love--but she hurts and life is not easy for her." I can finally say, "It is not bad parenting, it's a disorder." I can finally say, "I was right!" I don't wish to say these things because I am arrogant--that's not my nature--but because I wish to be heard. Maybe, just maybe, I can finally be heard! Maybe, just maybe, she can finally be understood!

Complete Skin Ailment Curative

 
My daughter was born with skin issues - literally! Within a few days, she developed a diaper rash ... a rash that would not go away for any significant length of time. It resisted every cream I tried. I even tried prescription anti-fungals and a special formula her pediatrician had developed. Nothing worked!

By the time she was 9 months old, her current rash had been raw, blistery and just plain painful, for 4 months solid! It was HORRIBLE! I took matters into my own hands ... the rest is history (or should I say the rest is "Complete Skin Ailment Curative"). Since then, I've used the cream on her eczema, her alligator skin, her cradle cap, her cuts and scrapes and her herxheimer reactions.

Since this blog is devoted to children and parents with children on the spectrum, you'll be happy to know that Complete Skin Ailment Curative is gluten free, casein free, soy free and just free of anything artificial, period! It's free from preservatives and fragrance; our kids have enough chemicals in their little bodies.

Oh, The Places You'll Go!

Oh, The Places You'll Go!
By Crystal Engler

When I graduated from college in 1999, a good friend of mine gave me Dr. Seuss's book, "Oh, The Places You'll Go." I flipped through the pages, imagining my future life: a successful teaching career, marrying the man of my dreams, adopting a few pets, having a yard full of kids. Never once did I predict that my life would have turned out the way it has.

Years passed. I had that teaching job I was dreaming of. I fell in love, got married, and I did, in fact, adopt two mutts. Shortly thereafter, my son Hayden came into the picture. I was living the life I had dreamed of as a girl.

But something happened. It was a gradual progression; akin to watching a train wreck in slow motion. Looking back, my son had all of the signs of autism. We just didn't know what the heck was going on. I stopped breastfeeding him at six months. The ear infections began. We put him on antibiotics...many, many times. When nothing seemed to help, we gave in to the doctors and put tubes in his ears. When his system was still so weak--too weak to handle the trauma that was about to be unleashed upon him--he got his one year shots. These included the MMR, varicella, hib, and pneumococcal conjugate vaccines. He was never the same.
It all started. The extreme fussiness, unusual eating habits, regression of language, lining up of toys, and social anxiety. It took us eight months to figure out what was wrong. There have been few times in my life that I've thanked God for my pessimistic attitude. Identifying my son's autism early on was one of them. After all, everybody told me he was fine. It was typical stuff, nothing to worry about. But I knew better. Thus began my quest to heal my child.

So, here I am. Autism Warrior by definition. I fight, I argue, I cry, I scream. If you think about it, we lead extremely violent lives. Many autism parents have to fight the world. They are backed into a corner, often times, in every area of their lives.

The other day, I rushed to the door to let Hayden's speech therapist in. I glanced at a picture of my husband and me that hangs on our wall. It was displayed at our wedding so everyone could sign their well-wishes for our beautiful life together. I looked into the eyes of my former self. Such ignorance and self-assurance I possessed. Completely oblivious to what the world holds. I had hope. Hope and youth were on my side. I was ready to conquer the world.

I started thinking about all of the sacrifices we make for our children. Who knew? Who could have imagined the places we'd go? I've talked to hundreds of autism warriors throughout my battle. Some of the stories of sacrifice are endearing. Many are tragic. Some make you want to curl up in the fetal position and stay. Others evoke rage and one even made my drink come out my nose. Some sacrifices are big. Others are small, yet still important. Here are some autism warrior sacrifices that have brought out myriad emotions in me:

Ann has sacrificed pride. Kasey missed her daughter's first steps because she was away with her autistic child. Julie had the cops called on her for "kidnapping" her own inconsolable son in a Barnes and Noble parking lot. Danielle's 30's were a blur. Barbara has sacrificed a six-figure career. Heather has dissected poop samples. Lisa has sacrificed herself. Karyn has lost relationships. Benedicte has sacrificed her autistic child to a residential school. Anne has lost sleep. Brad has sacrificed his golf game and double cheeseburgers for SCD's legal foods (just the cheeseburgers, not the golf game). Kelly and Delmma know the financial struggle that so many deal with. Natalie added to her plate by babysitting other people's children for her son's socialization. Jane has made financial sacrifices. Cindy put her own health on the back burner. Wendy has lost contentment. Julia and Jessie sacrificed their marriages. Tre has lost good music to The Wonder Pets and Thomas the Train's theme songs. Joy has lost the dream of having a second child and the ability to buy good work pants.

I can relate to most of these sacrifices. I think many autism warriors can. My latest sacrifice was my dignity. A few days ago, I actually had to catch my son's poop in my bare hands. His comprehensive stool analysis test was almost over. He couldn't hold it long enough for me to get the collection container out of the bag. I did what any good autism warrior would do. After all, poop happens.

So, where do we go from here? I suppose we continue the battle. After all, I believe God gave us these special jobs for a reason. We may never know why, but I believe that with faith, hope, and love, one day we'll look back and say, "Oh, the places we went."

Crystal Engler is the mother of a five year old with autism. She is a freelance author and can be found at http://crystaldavidsonengler.blogspot.com.

Antipsychotic drugs can cause heart disease

"Jonathan Meyer and his study team took data from the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) and used it to evaluate the effect of antipsychotic drugs on systemic inflammation. Every drug tested, particularly Zyprexa and Seroquel, markedly increased inflammation levels which are implicated in causing all sorts of other disorders.

Elevated levels of C-reactive proteins in particular were noted as a common side effect of taking antipsychotic drugs. High levels of these proteins are implicated in bringing about illnesses like heart disease and stroke.

Cardiovascular problems have long plagued the mentally ill. There is a much higher death rate from cardiovascular disease among the mentally ill population than there is among the general population. With current research indicating that serious inflammation also occurs from the same drugs, all indications seem to point directly to antipsychotic drugs as the culprit in unleashing a myriad of health problems."

Autism seen as asset, not liability, in some jobs

"Ron Brix’s longtime job as a computer systems developer for Wrigley, the gum and candy maker, required intense attention to detail, single-minded focus and a willingness to work on something repetitively until perfect.

The secret he credits to his success? Autism.

Brix, age 54, was diagnosed in 2001 with Asperger Syndrome, a form of autism often marked by the exact traits that help make him an ideal employee."

Safety Data From Kid Drug Trials Often Unpublished

"Prescription drugs are often administered "off-label" to children largely because many of them have only been tested in and approved for use in adults. As such, drugs are often given to children without fully knowing if they will be beneficial, harmful, or neither."

Neurofeedback Outcomes in Clients with Asperger's Syndrome

Thompson L, Thompson M, Reid A.

ADD Centre, 50 Village Centre Place, Mississauga, ON, L4Z 1V9, Canada, addcentre@gmail.com.

This paper summarizes data from a review of neurofeedback (NFB) training with 150 clients with Asperger's Syndrome (AS) and 9 clients with Autistic Spectrum Disorder (ASD) seen over a 15 year period (1993-2008) in a clinical setting. The main objective was to investigate whether electroncephalographic (EEG) biofeedback, also called neurofeedback (NFB), made a significant difference in clients diagnosed with AS. Read more

Chelation Therapy Drug Found Safe and Beneficial for Children With Autism

The Autism Research Institute calls for further investigations
into the use of chelation therapy for individuals with autism

SAN DIEGO, Nov. 5 /PRNewswire-USNewswire/ -- Two studies
published by the Southwest College of Naturopathic Medicine in
the October issue of BMC Clinical Pharmacology investigated
the use of oral dimercaptosuccinic acid (DMSA), a prescription
medicine approved by the FDA for treating lead poisoning, and
used off-label in these studies for treating heavy metal
toxicity in children with autism.

In the investigations, DMSA was given to 65 children with
autism (ages 3 -8 years) to determine its effects. The
researchers found that DMSA dramatically increased excretion
of several toxic metals, including a 10-fold increase in
excretion of lead. In terms of safety, the study found that
there was no adverse effect on standard safety tests,
including no effect on kidney or liver function.

Of greatest interest was a surprising finding that DMSA
therapy had a dramatic effect on glutathione levels.
Glutathione is the body's primary defense against toxic metals,
and it was very abnormal in children with autism.
Treatment with DMSA for only 3 days normalized glutathione
levels for at least 1-2 months in almost all children.

DMSA therapy also had promising effects on possibly reducing
some of the symptoms of autism, including improvements in
language, cognition, and sociability. However, a formal
randomized double-blind placebo-controlled study is needed
to confirm those results.

The study was led by Matthew Baral, N.D., Chair of the
Department of Pediatric Medicine and Associate Professor of
Pediatrics at Southwest College of Naturopathic Medicine (SCNM)
and James B. Adams, Ph.D., Adjunct Professor in the Division
of Clinical Sciences at SCNM and Science Director for the Autism
Research Institute.

"Toxic metals are a common problem in autism, and I have
personally observed that many of my patients with autism have
greatly benefited from DMSA therapy.
I hope this data answers the question that many physicians have:
whether chelation is safe and effective, and clearly it's both,"
says Dr. Matthew Baral. "This study shows that DMSA therapy is
safe and effective, and should be considered as a possible
treatment for children with autism who have significant body
burden of toxic metals," says Prof. James Adams.

This study was funded, in part, by the Autism Research Institute.
To access the studies go to

http://www.biomedcentral.com/1472-6904/9/16
http://www.biomedcentral.com/1472-6904/9/17



SOURCE Autism Research Institute

James Adams, PhD, +1-480-965-3316, or Steve Edelson, PhD,
+1-619-281-7165

The Ultimate Herbal Remedy: Can Cannabis Improve Autism?

The debate over its risks has split political and scientific opinion in Britain. But American mother Marie Myung-Ok Lee says cannabis isn't only safe enough for her autistic son - it's dramatically improved his condition



My son, J, has autism. He's also had two serious operations for a spinal cord tumour and has an inflammatory bowel condition, all of which may be causing him pain, if he could tell us. He can say words, but many of them - "duck in the water, duck in the water", for instance - don't convey what he means. For a time, anti-inflammatory medication seemed to control his pain. But in the last year, it stopped working. He began to bite and to smack the glasses off my face. If you were in that much pain, you'd probably want to hit someone, too.
J's school called my husband and me in for a meeting about J's tantrums, which were affecting his ability to learn. The teachers were wearing Tae Kwon Do arm pads to protect themselves against his biting. Their solution was to hand us a list of child psychiatrists. As autistic children can't exactly do talk therapy, this meant using sedating, antipsychotic drugs like Risperdal.
Last year, Risperdal was prescribed for more than 389,000 children in the US - 240,000 of them under the age of 12 - for bipolar disorder, ADHD, autism and other disorders. Yet the drug has never been tested for long-term safety in children and carries a severe warning of side-effects. From 2000 to 2004, Risperdal, or one of five other popular drugs also classified as "atypical antipsychotics", was the "primary suspect" in 45 paediatric deaths, according to a review of US Food and Drug Administration (FDA) data by USA Today. When I canvassed parents of autistic children who take Risperdal, I didn't hear a single story of an improvement that seemed worth the risks. A 2002 study on the use of Risperdal for autism, in The New England Journal of Medicine, showed moderate improvements in "autistic irritation" - but the study followed only 49 children over eight weeks, which limits the inferences that can be drawn from it.
We met with J's doctor, who'd read the studies and agreed: No Risperdal or its kin. The school called us in again. What were we going to do, they asked. As an occasional health writer and blogger, I was intrigued when a homeopath suggested medical marijuana. Cannabis has long-documented effects as an analgesic and an anxiety modulator. Best of all, it is safe. The homeopath referred me to a publication by the Autism Research Institute describing cases of reduced aggression, with no permanent side- effects. Rats given 40 times the psychoactive level merely fall sleep. Dr Lester Grinspoon, an emeritus professor of psychiatry at Harvard Medical School who has been researching cannabis for 40 years, says he has yet to encounter a case of marijuana causing a death, even from lung cancer.
A prescription drug called Marinol, which contains a synthetic cannabinoid, seemed mainstream enough to bring up with J's doctor. I cannot say that with a few little pills everything turned around. But after about a week of fiddling with the dosage, J began garnering a few glowing school reports: "J was a pleasure have in speech class," instead of "J had 300 aggressions today."
But J tends to build tolerance to synthetics, and in a few months we could see the aggressive behaviour coming back. One night, I went to the meeting of a medical marijuana patient advocacy group on the campus of the college where I teach. The patients told me that Marinol couldn't compare to marijuana, the plant, which has at least 60 cannabinoids to Marinol's one.
Rhode Island, where we live, is one of 13 states where the use of medical marijuana is legal. But I was resistant. My late father was an anaesthesiologist, and compared with the precise drugs he worked with, I know he would think marijuana to be ridiculously imprecise and unscientific. I looked at my son's tie-dye socks (his avowed favourite). At his school, I was already the weirdo mom who packed lunches with organic kale and kimchi and wouldn't let him eat any "fun" foods with artificial dyes. Now, I'd be the mom who shunned the standard operating procedure and gave her kid pot instead.
I thought back to when J was 18 months old. We were vacationing on the Cape, and, although he just had the slightest hitch in his gait, I was sure there was something wrong. His paediatrician laughed. I called back repeatedly until a different doctor agreed to see us. J was taken in for emergency surgery, to remove a tumour that was on the verge of inflicting irreparable damage. Sometimes, you just have to go with your gut.
And yet, I still hesitated. The Marinol had been disorienting enough - no protocol to follow, just trying varying numbers of pills and hoping for the best. Now we were dealing with an illegal drug, one for which few evidence-based scientific studies existed, precisely because it is an illegal drug. But when I sent J's doctor the physician's form that is mandatory for medical marijuana licensing, it came back signed. We underwent a background check with the Rhode Island Bureau of Criminal Identification, and J became the state's youngest licensee.
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Fantastic!!! New textbook on autism

From Autism Research Institute's newsletter:

In his 2007 book Changing the Course of Autism, Dr. Bryan Jepson wrote, "We need to redefine autism as a multi-organ metabolic disease that should be removed from the DSM-IV, placed in the medical textbooks instead, and routinely taught in medical schools and residencies."

ARI is thrilled to see a new medical school textbook titled Autism: Oxidative Stress, Inflammation, and Immune Abnormalities, recently published by CRC Press, and edited by Abha Chauhan, Ved Chauhan, and W. Ted Brown.

The book covers a variety of biomedical and neurological topics such as oxidative stress, neuroinflammation, mitochondrial dysfunction, membrane and metabolism abnormalities, and signal transduction (read the chapter headings here). The writers also discuss possible implications for treatment.

Many of the contributors have received research funding from ARI, participated in our Think Tanks, and/or presented at our conferences, including Drs. Paul Ashwood, Tapan Audhya, Manuel Casanova, Richard Deth, Martha Herbert, Harumi Jyonouchi, Woody McGinnis, Judy Van de Water, and Stephen Edelson.

The book is a bit pricey, but it is a significant contribution to the field of autism; it is available at Amazon.com. Encourage your local library to buy a copy!

The Real Voice of Autism

I recently found this site; I think it's a fantastic resource and had to share it.


"Who we are

The purpose of the autistics.org project is to connect autistic people with the services we need to live whole and happy lives. The immediate goal of autistics.org is to build a global database of information and resources by and for persons on the autistic spectrum.

The autistics.org project is by and for autistics, not parents of autistic children, though family members and professionals may find this website helpful.

The autistics.org project is a project in the spirit of the various Linux development projects: created by volunteers, it's not so much an organization as it is a constructive anarchy.

* The One Community Pledge
* The autistics.org project

About our slogan

The Autism Society of America, an organization composed almost entirely of non-autistic people and controlled entirely by non-autistic people, which performs few if any useful functions for autistic people, and which on numerous occasions has advocated against the best interests of autistic people, has started to call itself "The Voice of Autism".

In our judgment, such hubris demands a response. So we've changed our tagline to "The Real Voice of Autism"

When we call ourselves "The Real Voice of Autism", we mean by that that we autistics are the real voice of autism, not that we in particular at Autistics.org are. Every autistic, whether he or she contributes to this site, doesn't know this site exists, or hates what we do here, is also "The Real Voice of Autism". If you are autistic, feel free to join us in proclaiming yourself "The Real Voice of Autism"

Autism Button

Honest Food Guide-A healthy food pyramid

Dear readers,

Confused about what you're supposed to eat? That's because most
nutritional advice comes sources that have sold their souls to the
giant food companies. Even the USDA's Food Guide Pyramid is heavily
influenced by food lobbyists, and it offers lousy nutritional advice
that's decades behind the cutting-edge nutritional principles we now
know to be true.

If you want a REAL guide to which foods you should eat, check out my
Honest Food Guide, an easy-to-use nutritional reference chart that
will help you make the best choices at every meal. The "Honest Food
Guide" is based on real nutrition, not politics or special interest
groups, and it illustrates the nutritional principles that will keep
you healthy for life.

Because this information will help you live a healthier lifestyle,
I'm giving away downloadable copies at http://www.HonestFoodGuide.org

The "Honest Food Guide" provides information like:

* Which common food ingredients promote diabetes
* Which foods promote mental disorders and depression
* How to avoid hydrogenated oils
* Which grocery products and foods promote outstanding health
* Why high-sodium snacks are harmful to your health
* Where to find healthy protein
* Mineral-rich supplements to add to your diet
* How MSG interferes with body function and appetite control
* What foods to add to your diet for a strong immune system
* Why breakfast cereals are often health saboteurs
* How to ensure you're getting enough healthy oils
* Why sunlight is vital for good health
* Key nutrients for good health
* How to select vegetables with a variety of nutrients
* Healing superfoods
* How to achieve clear, smooth skin
* Which carbs to eat and which to avoid
... and much more.

If you want the straight truth about which foods to consume and which
foods to avoid, download the Honest Food Guide today.

Learn more at:
http://www.HonestFoodGuide.org

Book: For Families of Children with Autism

The emotional trauma that families go through when they find out their child has an autism spectrum disorder can feel like being plunged into darkness. Francesca Bierens is on a mission to show that there is light at the end of the tunnel. “The purpose of this book is to provide families who have a child diagnosed with autism spectrum disorder with feelings of hope,” writes Bierens. “It is also my intention to provide people who do not have first hand experience, with increased understanding of how autism affects the child and the family."

Over a period of fourteen years, Bierens interviewed ten families of children on the autism spectrum. The result is her new book, A Spectrum of Light: Inspirational Interviews with Families Affected by Autism (December 2009, Jessica Kingsley Publishers, 192 pages, paperback, 978-1-84905-013-5, $19.95). This book records how each of the 10 families answered the challenge of autism: how they felt, how they coped, and what gave them strength and solace.

Each family discusses how they reacted when they found out their child had autism, and their feelings leading up to diagnosis. They share their positive and negative experiences of professionals, and describe the support that they received, often from grandparents, respite care givers, support groups and other parents. Two of the original children, now in their 20s, also talk about the experience of growing up with autism, and describe how their lives are now.