A good friend, who lives in Johannesburg, South Africa, asked me last week to write a column for a newsletter aimed at parents of children with autism.  Below is that article:
You would think after 16 ½ years in the world of autism that I would cease to be surprised by anything, and yet, I still find myself continually shocked.  By what?  By the ignorance of so many “professionals” who take our money offering little or nothing in return.  By the callousness of the quacks, who shamelessly tout miracle products to desperate parents.  By the stupidity of so many who claim to have the answers but in fact, are doing nothing but faking knowledge that no one yet has.  And, by the courage, determination, selflessness and love of parents for their sick children. 

And, recently, I was more than shocked – I was stunned – by the fact that so many professionals in the autism world still see “autism” as the root cause of physical symptoms that have absolutely nothing to do with what autism is.  For most professionals, even 47 years after Dr. Bernard Rimland showed the world that autism is physiological in nature, not psychological, autism is the tree that makes them miss the entire forest.

(.....)

Let’s start there.  What IS autism?  It is NOT a disease.  It is absolutely nothing more than a general term to describe the syndrome of 3 symptoms that occur together:  communication issues, social difficulties and repetitive behaviors.  It is not digestive issues.  Nor is it frequent illnesses, poor appetite, failure to thrive, food sensitivities, pain, headaches, environmental allergies, or any of the other physical symptoms our children all-too-frequently display.  Yet, even now, so many medical professionals still insist upon grouping those signs and symptoms of physical illness into the autism catch-all.  You would think, 75 years after the word autism was first coined, they’d know better, and yet – they don’t.

18 months ago, my son, Alex, began to regress.  He began to get violent headaches, which weekly became more severe and frequent.  He began to run low-grade fevers twice a day.  He was sick constantly – 15 times in 6 months. He began to sleep only 4 or 5 hours a night.   Digestive symptoms, like vomiting, gas, bloating, diarrhea, became more and more frequent.  Worst of all, he began to have tyrannical rages, for the first time in his life, lashing out and punching me often, screaming, throwing things.  Our lives rapidly deteriorated, as I was unable to take him out of the house, since a melt-down could occur at any moment.  In fact, I couldn’t even leave him with anyone else – I was afraid to – so I ceased to go out, see friends, do anything other than sit with him waiting for the next bad moment.  Aggression is no joke when your child is 5, but when they are 6 feet tall, 185 pounds and way bigger than you are, it’s downright terrifying.  I tried to sort out what was going wrong – was it too much cheating on his Specific Carbohydrate diet?  He had been on it for 8 years, so he should have been able to handle the occasional treat, but I stopped it, going back to strict adherence.  I talked to our DAN! doctor, then another, then another.  I took him to neurologists, psychiatrists, and a DAN! Immunologist.  In spite of the entire forest of physical symptoms, what they saw was AUTISM.  Our lives became centered around his “attacks” – we did nothing, just waiting for the next one to hit.  And it inevitably would.

During this awful, awful time in our lives, I would desperately say to my family and friends that what I needed was a real, life Dr. House.  I’m not sure if this show was aired in South Africa.  It was weekly drama about a brilliant diagnostician, with some pretty severe social issues, who possessed the uncanny ability to figure out what was wrong with people, even those with the most bizarre arrays of symptoms.  Dr. House would write the symptoms up on a white board which he would contemplate for hours, sometimes, siphoning through what was relevant and was irrelevant, and in the end, always came through.

With simply “autism” as the continued diagnosis, many of the doctors we saw simply prescribed medications that made invariably made things worse.  Gabapentin caused Alex to vomit for 8 hours straight.  Depakote (valproic acid) caused him to have Parkinsonian-like movements so bad that he couldn’t even feed himself.  Amitriptyline had him throwing chairs at school. 

I knew Alex was sick.  That everything he was experiencing had nothing to do with his autism or, if it did, it had only to do with the root of the autism.  That is, he is not sick because he is autistic.  He is autistic because he is sick.  And this was the case from the moment he began his regression into autism 19 years ago.

Last February, in my desperate search to help my son, I made an appointment with an immunologist who came highly recommended, Dr. Denis Bouboulis.  Unfortunately, I had to wait until June to see him.  Dr. B spent 90 minutes with us, taking a detailed medical history and examining Alex, and finally said the exact words I’d been waiting to hear: “Judy, your son is sick.  He is riddled with bacteria. ”   He went on to tell me that firstly, Alex had a massive sinus infection.  You might think that an immunologist and two neurologists, one whose specialty was headaches (and who felt no compunctions about charging me $700 for a 30 minute appointment), might have thought to look up Alex’s nose, but they didn’t because they saw only autism.  More than that, he told me that Alex was autistic because he has autoimmune activity in his brain, and we could treat that with high dose IvIg.  And finally, he told me that he suspected that Alex’s headaches, the fevers, the digestive issues, etc. were all caused by Lyme Disease. 

The U.S. National Institute of Health lists the following as symptoms of Lyme:  itching, chills, fever, general ill-feeling, headache, light headedness, muscle pain, stiff neck, and for later stages of Lyme, also list abnormal muscle movement, muscle weakness,  numbness and tingling and speech problems.  Now let me list the symptoms I was reporting to doctors:  extreme fatigue, sleep issues, fevers and chills, general ill-feeling, headaches, muscle pain and weakness, speech problems (obviously), abnormal muscle movements.  (There are many more well known symptoms of Lyme that Alex was experiencing, but I want to simply prove my point using the limited list accepted by my government.)

Where was Dr. House when I needed him?

We live in the northeast of the United States, 20 miles from Lyme, Connecticut.  We live in a forest.  Ticks are everywhere.  You might think that one of the 8 or so doctors we’d seen in these last 18 months might have thought of it, but they didn’t because they all saw only autism.

Dr. Bouboulis put Alex on 3 antibiotics, took a load of blood to confirm his diagnoses, and sent us on our way.  8 days later, my son started to smile again.  All symptoms, including the monster explosions, vanished.  It was one of the most dramatic improvements I have ever witnessed.  Alex is happy again.  As I type this, he is sitting on the couch watching TV, and periodically looks at me and smiles. 

Over the next year or more, we will be treating Alex’s autoimmunity, treating his Lyme disease, treating his terribly suppressed immune system.  But already he is showing signs of improvement in his autism, even at 18 years old.  Why? 

Because autistic symptoms are the result of a disease process and NOT THE CAUSE.