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I posted this on the autism list, thought perhaps some of you might find it
interesting...

Occasionally I post on my son Andrew's progress on the gluten/casein free
diet which now he has been on for over one year.  I thought this might be a
good time to do this again, in light of some list members pooh-poohing the
idea that this could possibly be of any value.

When I started my son on the diet we were at the bottom of a down hill
behavioral slide with no where else to turn.  Andrew had been excluded from
school for aggressive, uncontrollable behavior and I was with him the
majority of the day, 1:1, just to keep him from hurting himself too badly.
 He was at a point that he could maintain some semblence of composure only in
the security of his own room.  He was 14 years old, 185 pounds at 5'8", a big
boy who sometimes would go over the top of whoever was standing in his way.
 He had wide, wild mood swings, would become panicked easily and was
generally very difficult to handle.  I had stopped taking him out except when
absolutely necessary for fear that he would get the urge to leave the car
while it was rolling down the street, not to mention having to frequently
sprint after him in parking lots, stores, etc.  The school was recommending a
hospitilization in a children's psychiatric ward.  He was on Mellaril and had
been on Prozac prior to the Mellaril.  He was miserable, and I was in agony
over not being able to find a way for him to lead a life with even a marginal
quality of existence.  We were pretty low, all alone, with no help in sight.

I read about the diet here, on the list.  Jean Jasinski...bless her kind and
caring heart...sent me copies of Reichelt's 1991 article out of _Brain
Dysfunction_, as well as urinary peptide testing info.  Lisa Lewis sent me
her personal archive of the previous discussions in 1993 of the diet and some
notes of encouragement.  I read this stuff, decided that it was worth a try,
and went all out.  The first thing that happened was my poor boy, already
distressed, went into a ferocious withdrawal.  We were 1:1 in his room for
about a week.  He tore himself up, tore me up and it was horrid.  I'd read
that this happened about half the time with Reichelts subjects so I was not
surprised (only very haggard) and was actually heartened by the knowledge
that I had probably hit on SOMETHING,  There had to be some reason for a
withdrawal that fierce, so Reichelts excess opioid theory became even more
rational to me.  After about a week he started to calm, down, down, down, he
came.  He slowly but surely became calm, cool, collected and such good
company.  Within the space of two months he was more level, more attentive,
more social than I had seen him ever before.

During all of this I utilized the due process procedures to put together an
educational program that would benefit my boy.  I developed a job for him,
hired a job coach, and then had the hearing officer order the school to
follow my program for him.  (It was working after all)  I picked a great
teacher and a supportive school to move him to.  Yesterday we had his summer
IEP meeting.  Everything is going along so well.  This has been by far the
best year ever for Andrew and his progress astounds even me.  He has learned
to swim laps in the pool, has started a new job recently (wrapping silverware
at a local nursing home), can go anywhere in the community safely with an
adult, patiently pushes the shopping cart for me in the store stopping when I
ask, seeks out the company of both me and his sisters at home...in short,
he's doing marvelous.

He definitely is not CURED.  He still has autism.  He has tactile
defensiveness (much less severe now), he remains functionally non-verbal
(dramatic increase in appropriate non-verbal communication skills though),
still gets anxious when routines are disturbed (although he is much less
dependent on routine now), and he has a processing delay.  The quality of his
life has increased dramatically with the removal of the stress that the
gluten/casein was putting on him though.  He appears happy,even playful at
times, he no longer aggresses towards others, he no longer tears his
fingernails off or even picks at his fingers, he no longer has nocturnal
feces smearing, he is no longer incontinent of urine during the day (a
periodic problem before), and he no longer eats compulsively.  He also has no
need for any medications of any sort.  The only thing he takes are
gluten/casein free calcium/magnesium supplements, a B-6 supplement and a
multivitamin.  He is growing.  He has lost 45 pounds.  He is a tall, lean 140
lb, handsome young man.

The quality of life for the whole family has taken a dramatic turn for the
better.  I was able to leave him with a respite provider for 11 whole days
last month to go to Hawaii to get married.  I was able to return to work last
fall to pursue my career as an advocate for community supports for people
with disabilities.  My daughters can bring friends over and they're not
terrified of what their brother may do.  Most importantly, Andrew feels
better than ever before.  I finally found a way to help him.

Our challenge now is different.  Andrew is now 'available' to learn for now
he can sit and attend.  He doesn't know how though, he's never been able to
before, so we are truly at the beginning.  We've brought in some specialists
on autism who are doing some extensive school observations and hopefully we
can build some sort of learning protocol for Andrew.  He's got so much
potential now!  Its a far cry from the looming spectre of the in-patient unit
full of lost souls doing the Haldol-shuffle!

This is Andrew's story.  I realize that only a portion of children with
autism will probably benefit from this diet for it would have to be part of
their particular problem.  Autism is so diverse in its etiology.  My deepest
regret is that I didn't find out ten years earlier and halted the inexorable
damage done as opiates wreaked havoc in my beautiful son's brain.  So I urge
all of you to at least investigate this as a possibility for your own
children.

Chris Braffet Delnat, [log in to unmask]