Recovering from Autism

Road to Recovery

Our pediatrician confirmed my suspicions of autism. She held out little hope for my daughter’s future. Then she fled the examining room.

Later, a well-known neurologist at a prominent Children’s hospital told us Maria’s* educational needs would be “overwhelming.” He offered no treatment, nor did he order a single test. I also got the distinct impression he didn’t even like my daughter. And that he was greatly relieved she wasn’t his child.

My precious firstborn was only 3 1/2. Yet the medical establishment had already written her off.

Today, Maria is in elementary school. She no longer receives special education services, and she’s a straight-A student with a verbal IQ in the “gifted“ range. (At one point, her verbal IQ was so low it didn’t even register.) Her horrific diagnosis was formally removed in first grade.

I wouldn’t describe Maria as the most popular kid in school, but she does have several friends, including a “best friend.” She’s very kind to other kids, except, at times, her younger brother. Of course, as her mother, I think she’s the most wonderful girl in the world.

What Happened to Maria?

Maria had a difficult birth. But, early on, she developed normally. As an infant, I’d even say she was precocious. At eight months, we brought her to a restaurant. She scanned the crown until she caught the eye of a man seated behind us. Then she engaged him with smiles.

At one year, Maria had a huge vocabulary. She was even starting to put two words together.

I took Maria to the pediatrician for her 15-month “well baby” visit. She squirmed out of my arms and ran to an area filled with older children. She squealed a little, as if to announce, “I’m here, let’s play.”

So what happened?

Maria had shock-collapse after her second DPT shot. Cognitively, however, this didn’t seem to affect her. What did her in was the measles, mumps and rubella (MMR) shot, which she received at 15 months, minutes after she ran to play with a group of older children. Consequently, she wouldn’t play with anyone again for years.

Within days, Maria developed massive diarrhea. It cleared up after a few weeks, but we had many new symptoms. Even in cold weather, Maria’s forehead would sweat profusely. She picked up every virus that came around, including rotavirus, which landed her in the hospital. She bruised easily and her eating habits changed. She once liked meat and vegetables. Now, all she wanted to eat was bread, pasta, pizza, cheese and milk.

At the time, I didn’t know her favorite foods were causing brain damage. And that, by removing them, we saved Maria from a devastating disability.

Help from Heaven

We discovered Maria had “autism” at 3 1/2. We diagnosed it ourselves, on the Internet. I became suspicious after our pediatrician casually inquired if Maria ever made eye contact. At the time, I laughed off the possibility of autism. Two months later, though, nagging doubts surfaced. I did a web search for autism. Bingo. The symptoms matched exactly.

An autism diagnosis is like someone reaching into your chest and tearing your heart out. I prayed to God for help, and told him I would do anything - whatever it took - if somehow He could make the autism go away. This was in late 1997, and mainstream doctors considered autism a lifelong, untreatable condition. Five years later, this is still the case.

As a Catholic, I also prayed for a recently canonized saint - St. Edith Stein - to intercede. I had just read about this remarkable woman, a Jewish convert to Catholicism, in a magazine. Months later, I learned she was killed in the Holocaust on August 9, 1942. Coincidentally, my daughter was vaccinated with the MMR on the exact same day, 53 years later. (I know many non-Catholics don’t understand our tradition of praying to saints. We are simply asking for their help, since they are in heaven with God, just as we ask people here on earth to please pray for us.)

God then put the right people in our life, just when we needed them. Lisa Lewis, Ph.D., was one. She had recently created a web site about a milk-free, gluten-free diet. We started this diet, and saw good results. In fact, we probably could have dropped the autism label about six months into this diet, even though Maria still had occasional meltdowns and her eye contact was still poor.

Meanwhile, my younger child’s health was failing. He was on a strict gluten-free diet because of celiac disease. But it wasn’t helping. He was ghost white and rail thin, with little energy, chronic diarrhea and black circles under his eyes. Deep down, I worried he was dying.

The team of pediatric specialists we were seeing had no clue how to make my little boy healthy. Nor did my daughter’s “alternative” DAN (Defeat Autism Now) physician. Fortunately, for us, this was August. And every doctor treating my son was on vacation.

In desperation, I picked up a book called Breaking the Vicious Cycle: Intestinal Health through Diet by Elaine Gottschall. A stranger mailed this book to me two months earlier, after meeting my mother and hearing about my son’s deteriorating health.

This book explained why my son wasn’t thriving on the regular celiac diet. His intestines were so damaged he couldn’t digest any grains, or complex carbohydrates. The next day, he started the so-called Specific Carbohydrate Diet (SCD), described in this book. His stools became normal, and he started growing and gaining weight. He’s now a strong, healthy seven year old.

What about my daughter? She had no obvious digestion troubles. But she did have “autism” and a recently discovered yeast overgrowth. One British researcher found a link between the MMR shot, intestinal problems and autism. Wouldn’t a diet that promised to heal her intestines, and help with yeast overgrowth, be her best shot at a normal life?

We put Maria on a dairy-free version of the SCD. She had a terrible yeast die off that lasted a week, even though she was taking Nystatin, a popular anti-fungal drug. But, once she recovered from the die off, about a week later, we were confident she’d someday grow into an independent adult, thanks to this remarkable diet. Her remaining speech peculiarities, such as mixing up the order of words in a sentence, disappeared. Her eye contact became normal. By the time she was 4 1/2, one year after her diagnosis, no one would guess she was ever “autistic.”

Other Treatments

The SCD was the single most important ingredient that led to Maria’s recovery. But it wasn’t the only one. These treatments also helped:

- THYROID REPLACEMENT HORMONE. Maria had a ravenous appetite, but very little energy. Her hands were also ice cold, no matter how many layers of clothes she wore. And her immune system couldn’t fight off the yeast overgrowth that flourished in her intestinal tract and on her skin. Her breathe, even on the SCD, had a nasty chemical smell. A standard thyroid test revealed her TSH level was 4.516. The normal reference range at that particular lab was 4.67. Yet, our (second) pediatrician refused to believe my daughter needed thyroid hormones.

We searched for a doctor to help, and we found two. The first was an alternative MD, who believes autism and hypothyroidism go hand in hand. This also ties into the mercury poisoning theory, since mercury blocks the action of the thyroid. We stopped seeing this doctor because we found a local physician willing to help, and his services are covered by our health plan. My daughter takes a compounded SCD-legal version of thyroid hormones T-3 and T-4. The former hormone is very important, according to the alternative MD because the kids he sees are unable to convert T4 into T3. Many doctors, though, prescribe just T4 for their patients with low-functioning thyroids.

Decent medical care is difficult, but not impossible, to find, especially if you look outside the major medical centers and the field of pediatrics, which is what got many of us into this mess in the first place.

A word of caution. Some doctors use what's known as a TRH test to identify hidden cases of hypothyroidism. This test, in which a hormone is injected into the bloodstream to stimulate the thyroid, caused my daughter to regress, and we had a hard time getting her back on track. I DO NOT recommend this test.

- HOMEOPATHY. This was once the dominant form of medicine in the United States, and it’s the only treatment I’ve found that can actually reverse vaccine damage and rebuild the immune system. Even a strict SCD diet didn’t solve the problem of frequent colds and nasty ear infections, which would led to another cycle of antibiotics.

One problem, though, is that many homeopaths and alternative healers dabble in divination and other forms of the occult. This is incompatible with Christianity. It’s possible to find a practitioner who practices straight medicine, based on a patient's symptoms.

Also, you must find your own homeopath, instead of asking what remedy someone else's child is taking. Homeopathy is very indivualized, with hundreds of remedies. Your child will need his/her own particular remedy.

- VITAMIN THERAPY. Maria took high doses of vitamin C, vitamin B6 and magnesium when she was on the GFCF diet. Cognitively, these vitamins appeared to help and we’d notice regression if we tried to wean her off the B6. After two years on the SCD, and homeopathic treatment, we were able to wean her off all vitamins, except for an SCD-legal calcium supplement.

At one point, the specialist who initially diagnosed Maria’s thyroid problem ordered a saliva test to check the status of her adrenal glands, which were also sluggish. He told us thyroid problems and adrenal insufficiency are often found together. He recommended a vitamin B5 supplement for a month. We followed his advice, and noticed additional cognitive gains.

- NO FLUORIDE. Our community, like many throughout the United States, adds fluoride to its water. Once again, the right person entered our lives. Another Mom on an autism list did extensive research into the toxic effects of fluoride, which, among other things, block the action of the thyroid. She continually posted her findings. Finally I listened. We switched to bottled water, for all our drinking and our cooking, and got rid of the fluoridated toothpaste.

We only drink 100 percent juice, not reconstituted juice with filtered water, which could contain fluoride. (This is recent. For years, we drank only hand-squeezed juice, just in case a manufacturer added sugar, which would counteract the benefits of the SCD.)

Incidentally, without supplemental fluoride, both kids are cavity free. And, my daughter’s persistent dry cough finally cleared up. A couple times I gave her a little dried kelp, which has a high fluoride content. The mysterious cough returned. No doctor - and we’ve seen plenty - was able to diagnose this problem.

- ABA THERAPY. No doubt this is the best educational intervention for ASD kids. But I cringe when I see parents fighting to get more “services,” while ignoring their children's treatable medical problems. It’s possible very young children on the SCD may even catch up without the need for special education.

All ABA isn’t created equal. Since my daughter’s recovery, I spent a few years working in the ABA field. I’ve seen programs where new therapists, with no experience, are given a binder filled with programs and told to “do ABA.” I’ve seen another program where young children are “drilled” at a table for hours on end, with no carry over into the real world. And I’ve seen a so-called “ABA class” where children on the spectrum are allowed to “stim” for hours on end while the teacher and an instructional aide chatted at a nearby table. They also had an hour and a half of “rest time” while the teacher chatted with the aide. These kids would be much better off at home with Mom or Dad, who would keep them engaged. Young children with autism need cognitive stimulation nearly every waking hour, until they recover.

ABA is also a huge business. Consultants fee’s start at $100 per hour, plus travel time. Therapists pay starts at $15 per hour. More experienced ABA therapists, especially in major metropolitan areas, command $25-30 per hour. Even at the lower rate, basic therapy hours would total more than $30,000 a year for a 40-hour a week program. Consultants fees and materials add thousands more. Is it any wonder ABA professionals are among the strongest voices against dietary intervention?

We were fortunate to find a good private preschool with an excellent ABA program, and our local school district picked up the tab. But all the ABA in the world would have been useless if we didn’t treat Maria’s underlying condition. Recovery is possible on ABA alone, but these cases are the exception rather than the rule.

Even at Maria‘s school, which has a seamless program, graduates generally need ongoing support in the elementary grades. Maria is the only child I know of to leave that school without continuing services.

With the right help, many “autistic” kids can recovery. Tragically, the medical establishment doesn’t seem to care.

*Maria's name is a pseudonym to protect her privacy.

My Favorite Links

Recoverymaze
BTVC
SCD