Tag Archives: autism

Welcome to the Twilight Zone: A Boy Brought Back from Autism

By Avril Dannebaum, co-leader of API-NYC

Paint strokesMy son woke up that summer morning and came to me. His light blue-green eyes were clear, and he looked healthier than I had seen him in a long time. Something was different with my three-year old.

“I want to paint today.”

I paused in shock at his request. It was a bright morning, just one of many beautiful days we’d had that summer in 2000. But a feeling of unreality washed over me. With those simple words, I had entered the twilight zone.

For almost two years before that day, my son hadn’t spoken much at all, hadn’t searched out my eyes, hadn’t really done anything that a normally developing child would do. He had lived in a separate universe, a never-never land of lost boys and lost parental dreams. My little cabbage boy.

Suddenly, as spectacularly as my son had disappeared, he was back with me. I didn’t react. There were no big moments of hugging or kissing him. In general, he didn’t care for demonstrations of affection. So I didn’t fuss. Frankly, I didn’t quite believe what was happening. My husband was getting ready for work, and so I just went through the usual motions of making breakfast, while wondering if this would last. Wondering if I was dreaming.

I got out his paints and his easel. What had happened? What had brought my son home to me?

A Leap of Faith

The day before we had taken a train trip upstate to Brewster, New York to a DAN! (Defeat Autism Now!) protocol doctor  – the very same doctor who had been mentioned in Karyn Seroussi’s book, Unraveling the Mysteries of Autism and PDD.

About DAN!

Defeat Autism Now!™ (DAN!) is a project of the Autism Research Institute, a group of physicians, researchers, and scientists committed to finding effective treatments for autism. DAN! does not regard psychotropic drugs as the best or only means of treating autistic patients. More information can be found at www.autism.com/dan/index.htm.

My son had acted up on the train, screaming and yelling, hurling his body back against the stroller I’d confined him in. Being on the autistic spectrum this was standard operating procedure. I was glad that the train compartment was almost empty because it cut down on the amount of dirty looks I would receive for having a tantruming preschooler. Finally, after our taxi ride, he settled down in the doctor’s office while we waited. He had found a basket of fast food restaurant toys and he was content.

It never failed to amaze me that a child so nonresponsive to his mother and father, never hearing us and never searching us out, could spot a favorite toy from yards away and make a bee line to it. Yet I found that reassuring somehow – that even though he didn’t care for us, there was something in his universe that he loved: Blue from Blue’s Clues, Thomas the Tank Engine, Elmo and his other friends from Sesame Street. As long as he loved them, he wasn’t alone. They reached him where we could not.

The doctor recommended that we use twilight sleep so that my son wouldn’t struggle during the prolonged blood draw necessary for all the testing we needed to have done. And it would help because after taking the blood we’d be doing an IV push of Secretin and vitamins, which would also take more than a few minutes.

It took me and two nurses to hold down my son’s small yet very strong, three-year-old body. He screamed and struggled until the sedative took effect. It broke my heart, but I had had two years of getting used to being heart-broken. I was so used to it, and yet it still hurt.

My mother, 68 years of age, a vivacious woman who talked a lot but rarely gave any thought into what she was saying, lived only a few miles away and was there to pick up my very groggy son and me after the appointment. My son was very much under the effects of the drug we’d used to calm him and I had to be careful that he didn’t hurt himself as he flopped around. Thank goodness for my mother driving us back to the city because I’m not sure I would have been able to handle the train trip back. My boy went to sleep as soon as we got home.

And then it was the next day, and a child I hadn’t seen for two years was back with me. I didn’t think miracles happened just like that. Hadn’t the government and various studies debunked the use of Secretin? Maybe it had been the vitamins?

In the next few weeks, we spent all of our savings and maxed out our credit cards with this doctor, on the basis that the two years we had stuck with mainstream doctors and therapies had done little to nothing for our child. Time was passing. Our son’s childhood and potential were speeding by us.

Our leap of faith had paid off. Eye contact, and speech, but more – much more: someone was home again in there. Someone who knew us, knew that we loved him and cared for him.

The Food Connection

In Attachment Parenting (AP), very often a family will be confronted with a professional’s opinion that goes against what is in their hearts. Doctors will tell moms to quit breastfeeding and introduce solids. They will tell families not to share sleep, because it will permanently hurt the child. They are told to let their child cry-it-out.

Our doctors had ignored our son’s constipation and diarrhea for two years. Earlier that year his bowel movements had been so acidic that they had left welts on his upper thighs and testicles. We’d had to change him in the bath tub while he screamed in pain. And once, after having popcorn, our son’s constipation had reached the point where he couldn’t stand up straight or walk. It had taken two baby enemas to clean him out.

Our mainstream doctors hadn’t seen a connection between our son’s bowel problems and his Autistic Spectrum Disorder (ASD). Everything I had been told about it being solely genetic and irreversible, except through behavioral modification and heavy-duty drugs, was a lie. Here I had proof that ASD is reversible: Our boy was back, at least as long as he avoided gluten, casein, soy, and corn.

And so we took our first steps on a trip through a world where doctors, public health administrators, and even some politicians lie to protect themselves from the truth: Genetics is the gun, but environment is the trigger.

Our son’s dramatic response to Secretin had shown us that symptoms of autism are reversible. Eventually we found Secretin to have diminishing results, and it was his diet which kept him from drifting away from us.

The Vaccine Connection

Two years later, he had his first biopsy and colonoscopy and was found to have Lymphonodular Hyperplasia of the colon – a condition associated with chronic measles activity from the MMR vaccine.

Our Son Returned

This journey has been a long one, filled with twists and turns and even a few dead ends. I didn’t know, couldn’t know, if after losing two years of his development whether he would ever be fully normal. But he was talking, making eye contact and the stimming was gone, and that was good enough for my husband and me to see that our son was still there and had never been completely lost.

What is Stimming?

“Stimming” refers to repetitive, self-stimulating movement, such as through flapping, tapping, scratching, or rocking.

Where would we be now if we hadn’t listened to our hearts and tried alternate therapy for our son? I was grateful that I had a support community of parents who were of a like mind about AP. They stood by and encouraged me to believe that something more was going on with our son than genetics alone. They were there for me to help me parent my child gently even when he was screaming and tantruming every day. They helped me through the pain and anguish of my own son not knowing his mom anymore. Thank goodness for those parents who wouldn’t let me give up hope.

For More Information

Rescue Generation: http://www.generationrescue.org
Safe Minds: http://www.safeminds.org
NAA: http://www.nationalautismassociation.org
Autism Research Institute: http://www.autism.com
ANDI: http://www.autismndi.com
A-CHAMP: http://www.a-champ.org
Heavy metal toxicity: http://www.diagnose-me.com/cond/C15891.html

Changing the Course of Autism by Dr. Brian Jepson
Healing the New Childhood Epidemics: Autism, ADD, Asthma and Allergies by Dr. Kenneth Bock
Children with Starving Brains by Dr. Jaqueline Candless
Unraveling the Mysteries of Autism and Pervasive Developmental Disorder by Karyn Seroussi
Special Diets for Special Kids by Lisa Lewis
Evidence of Harm by David Kirby
The Child with Special Needs by Stanley Greenspan
Is This Your Child? by Dr. Doris Rapp

An AP Approach to Autism

By Melissa Hincha-Ownby, editor of the API Speaks blog

Melissa Hincha-Ownby
Melissa Hincha-Ownby

Like many families that I know, my husband and I just sort of fell into Attachment Parenting. When our son was born in 2001, we found our parenting style to be in line with Attachment Parenting concepts. As we added baby number two in 2003, I was introduced to the challenges of parenting two children. Of course, we kept with the Attachment Parenting style because it helped address some of these challenges (can anyone say sleepy mom of two?).

Fast forward a couple of years, and our Attachment Parenting style helped us with one of the biggest parenting challenges that I think we’ll ever have to face — autism.

In November 2006, the day before my daughter’s third birthday, she was diagnosed with autism. Technically, her diagnosis was autistic disorder. At this point, there are five different diagnoses that fall under the pervasive developmental disorder umbrella and autistic disorder was one of these.

After hearing those words, “Your daughter has autism,” I began to read everything I could get my hands on. A lot of the literature focused on behavior therapy as the gold standard with regards to helping a child with autism reach their potential. I was a little concerned that the behavior therapy being proposed was not very child-friendly but also concerned that this type of therapy may be needed. Although my daughter’s delays were very evident, I stayed the course with an Attachment Parenting approach and searched for other options. Continue reading An AP Approach to Autism

The Autism Book: Interview with pediatrician Dr. Robert Sears

By Rita Brhel, managing editor and attachment parenting resource leader (API)

The Autism BookI have to admit that before I read the latest addition to the Sears Parenting Library – The Autism Book: What Every Parent Needs to Know about Early Detection, Treatment, Recovery, and Prevention by Dr. Robert W. Sears, MD, FAAP – that I had only a very basic idea of what autism was. The complexity of this medical disorder simply had me baffled, and because I thought I had no personal connection to autism, I conveniently stayed away from the topic.

But when you’re involved in parenting support, at some point you have to break out of your comfort zone in order to help more families. And attached families certainly aren’t immune to autism.

A few years ago, Dr. Sears wowed us with his acclaimed The Vaccine Book. The Autism Book is just as wonderful. Personally, I have received quite an education from the book. It provides a comprehensive look on this medical condition, and has the added appeal in that it offers both an introduction to autism as well as all the latest research and theories on mainstream and alternative treatments — and even a bit on the subject of prevention. By the time I finished the book, I thoroughly understood all aspects of autism. Dr. Sears has written The Autism Book to be THE handbook on parenting a child with on the autism spectrum.

Dr. Robert W. SearsIn our interview, Dr. Sears gives us some insight to what he hopes to accomplish by writing The Autism Book.

RITA: How did you first become interested in autism?

DR. SEARS: Ten years ago, a new patient walked into my office [located in California, USA] with a child with autism. She asked for help guiding her through all the various treatment options. I knew absolutely nothing about autism at that time, but I wanted to help. So, I began learning everything I could through physician seminars, books, and mentoring under other doctors who specialized in autism.

Through this first patient, and several others in the following months, I learned that there is a whole world of treatment options out there. Some treatments help most kids and some only help a minority. But, I learned that children with autism can recover and lose their diagnosis, and after I saw this happen with several of my patients, I knew that treating autism as a pediatrician would become a lifelong passion for me. I also became involved in the parent support group, Talk About Curing Autism (www.tacanow.org), which has taught me so much in ways that only parents can teach a physician.

RITA: What led you to write your book, and how do you hope for your book to benefit families?

DR. SEARS: Treating autism requires a lot of time educating parents. So, I thought I’d throw everything I know into a book so my own patients could read everything I want them to know. But, I also love reaching out to families everywhere with information I feel is important. With the continually increasing rates of autism — and make no mistake, there is definitely an alarming increase, despite the denials you see in the media — early detection and early intervention are becoming more and more critical. The sooner a baby or toddler or child is identified as being on the autism spectrum, and the sooner intervention begins, the better the chance of a full — or nearly full — developmental recovery.

Physicians used to think, and I am admittedly guilty of this, that it didn’t matter what age a child was diagnosed, because there wasn’t much we could do about it. Autism was autism, and there was no hope for treatment or recovery. Now that we know the complete opposite is true, physicians and parents need to have the tools to detect autism at the earliest possible age so life-changing treatment can begin.

But with the various “alternative” medical treatments out there, I wanted to give parents a science-based look at what integrative and complimentary treatments could help there child, along with mainstream treatments. So, I put it all together for parents everywhere to be able to read. There are some treatments that require a doctor’s guidance, but there are so many treatments that parents can do on their own without a doctor’s help and I wanted to put such tools into parents’ hands.

RITA: Your book touches on prevention of autism, which I found very interesting but something we don’t hear much in mainstream media. Could you give an overview for our readers?

DR. SEARS: The last chapter of the book deals with prevention, in as much as prevention may be possible. I address how to identify autism-associated medical or nutritional problems early on and how to fix them, with the hope that such steps may prevent or limit the autism problems. I also discuss how to approach medical care in a way that may help be protective against autism, as well as how to prevent autism in subsequent children in families who already have one child with autism.

RITA: There is a study that began in 2008 seeking to determine whether mother-child attachment can be used as prevention for autism. What are your thoughts on this?

DR. SEARS: The issue on whether or not Attachment Parenting (AP) can help prevent autism is a tough one. We do know from research that AP kids tend to grow up smarter and happier, and that AP enhances intellectual and motor development during infancy. But, does this benefit extend to autism? I don’t know. I know AP kids who have developed autism. I don’t think we can speak to this until some research is done. My opinion, however, is that the neurobiological mechanisms that cause autism are so complicated that AP practices may not be enough to overcome the autism.

It’s very important not to cast blame on any parent for their child’s autism. And to suggest that a child with autism who was not attachment-parented may have turned out better if he had been AP’d is not an appropriate statement to make to any parent. So, until we know, I don’t like to presume that AP may help prevent autism.

RITA: What tips do you have for AP families affected by autism? Are there particular principles or parenting practices that are more helpful than others, or vice versa?

DR. SEARS: Autism behavioral interventions are very unique and complex. The proper way to interact with a child with autism might not always be intuitive. Specific behavioral interventions are usually provided one-on-one with a licensed therapist, and these techniques are usually taught to the parents, as well. I recommend parents become somewhat adept at the techniques they learn from such therapists. But of course, nothing can replace the loving care a parent can provide, and from an AP standpoint, patience is definitely a virtue.

One very important concept for parents to realize is that the divorce rate in families with autism is extremely high. Perhaps the single most important factor that keeps a family together is a father who accepts the child’s diagnosis and jumps into getting involved with the child’s therapy; a dad who understands what is going on and takes part in it. A dad, on the other hand, who steps back from the whole situation, and just views himself as the money maker for the family, may soon become detached from the family unit and will find a distance developing between himself, his child, and his spouse. Becoming active in a local parent and family autism support group can really help.

RITA: Could you summarize the top two or three concepts from your book for our readers?

DR. SEARS: The book is divided into four sections:

  1. Early detection: as discussed above, this concept is key so that early intervention, and a greater chance of recovery, can occur.
  2. Causes: I discuss what we know about possible causes. Much of this is theoretical, but we are learning more and more scientifically, as well. I also go over what type of testing is useful in order to look for associated medical and nutritional problems.
  3. Treatment: I go over behavioral/developmental therapy, nutritional therapies, and integrative (“alternative”) therapies. I don’t just give general advice – I provide specific guidance on exactly what to do and how to do it.
  4. Prevention: I provide information on how to lower a child’s risk of developing autism. This isn’t always possible, but I share what we do know and what parents can do.

Readers can check out the book’s intro and table of contents at www.theautismbook.com.

RITA: Thank you, Dr. Sears, for your time and insights. Any closing thoughts you’d like to share?

DR. SEARS: Autism used to be a diagnosis will little hope of treatment or improvement. Many kids were institutionalized. And although the diagnosis can be a very difficult time for families, today there is so much more hope and available treatment options than 20 years ago. There is a lot of work involved in autism treatment, but by seeking the help of other parents and the right professionals, improvement is very likely and recovery is possible.

From Heartache to Hope: Interview with Leisa Hammett of the Autism Society of Middle Tennessee

By Rita Brhel, managing editor and attachment parenting resource leader (API)

From Heartache to HopeThe personal stories of families and individuals affected by autism in the beautifully photographed book, From Heartache to Hope: Middle Tennessee Families Living with Autism by Leisa A. Hammett, were an amazing read.

The book follows 18 families in how they have struggled with one or more family members receiving a diagnosis of autism and how they moved literally from heartache to hope — with the parenting support offered by their local Autism Society of Middle Tennessee, USA. This book illustrates the vital importance of unconditional attachment between parent and child in a circumstance where autism exists.

Leisa, a mother of a child on the autism spectrum, offers more insight into why this book came to be.

RITA: How did you first became interested in helping other parents of children with autism?

LEISA: I’ve always been a flag waver — guess I was born with one flapping in my hand. And then, after serving as a social justice reporter covering poverty, homelessness, addiction, etc., I was moved to use my life, my faith, my gifts, what I possessed, to work for change. That time in my life, my mid-20s, was catalytic. So, in many ways, it’s a bit ironic that I ended up being the type person with circumstances and challenges about whom I used to write. Also, ironically, I’d finished up a volunteer stint as my local La Leche League chapter’s librarian and had promised to do the same for Attachment Parenting International in Nashville, where I live.

But that’s when the “A bomb” dropped. Resources, time, and energy, of course, had to be redirected. Continue reading From Heartache to Hope: Interview with Leisa Hammett of the Autism Society of Middle Tennessee