4 Knowing and believing

The improvement in the patient's condition can be so gradual, that you actually forget what it was like and readjust to the new situation  without understanding it.  Keeping a written track of the gluten/milk challenges and learning to recognise the individual pattern after them is the best way of knowing, as opposed to believing what you are doing.  If you don't write things down, you're like someone trying to run a business without an accounting system.   

4.1 There are three classes of factors to consider:  Diet, biochemistry and development patterns.

There is no direct link between diet and behaviour

There is no direct link between diet and development/behaviour, neither short term nor long term.  If the diet works, the action is not direct, but (probably) mediated through the middle level of biochemichal changes.

There is a link between diet and biochemistry, but it isn't easy and direct

There is a link between the patient's diet and his/her neurochemichal environment, but it is not as direct as some people like to think.  There are children who are supposed to have been GFCF for more than one year, and whose peptide levels still haven't changed significantly. 

Excuse us for repeating something we have written before. 

Imagine that you're holding a cup under a waterfall.  The cup has a small crack in the bottom, and a lid on it.  There is a biggish hole in the lid.  There are two ways of emptying the cup: 

*  Enlarging the crack in the bottom (enzyme suppmenents, strengthening the normal enzyme system, and nutritional supplements containing the important coenzymes etc). 

*  Fixing the hole in the lid (curing the "leaky gut")

*  Turning the waterfall off completely, and waiting for the crack in the bottom of the cup to drain the contents away (dietary intervention only).

If you only manage to turn off the waterfall 95%, there is no knowing whether there is a lot of water in the cup (peptides in the body) at any given time.  Even if you turn it off 100%, there is no knowing whether the cup is empty at a given time; in order to do that, you'll have to know how big the crack in the bottom is. 

The scientific problem is to demonstrate with certainty the link between biochemistry and autistic development and behaviour

The scientific problem is to establish, with certainty, that there is a direct link between factors 2) and 3).  We'll deal with our experience on this, in the next main paragraph. 

4.2 How do we know the improvement is the result of the diet, and not because of something else?

Maybe the child is just maturing? How can anyone be sure that it's the diet working and not just improvement due to other therapies or just time? 

Generally, it's hard to KNOW what causes a change.  It's a matter of hope and love and how we define knowledge, as something different from belief.  The central point is not philosophical or semantic, but whether or not we find it worth while to carry on the diet experiment, and at what stage we stop considering it an experiment.

We love our children. Part of love's nature is to place emphasis on the positive,  and explain away the negative.   As parents, we're desperate to find things  that work for our children, so we're mentally willing to "see"  improvements that are not there.  Usually, we are fully  aware of this subjectivity in our observations, and try to correct for it.  As often as not, we overcorrect.

Back to the question:  How do we KNOW.  Forget it.  Ask instead how do we work to minimize the sources of error when we make our decisions ?

The best solution by far would be to have monthly or bimonthly urinary peptide tests.  The levels are likely to rise and fall periodically, and it's mighty interesting to see how this coincides with changes in diet and behaviour.  

If you don't have this middle level of reference between diet and behaviour, you have to write down what you see and hear.

Don't trust your memory.  Writing about this involves several things. 

Firstly:  What was it like before. 

  Secondly:  What had you achieved ? 

    Thirdly:  What kinds of regression took place, and when ?

All of this has to be considered area for area BEFORE YOU FORGET.

Be as objective as you can.  A good help is to go to the Autism Institute's website, and run the so called "ATEC" test:   This will help you be a little more objective in your assessment of  conditions.  Otherwise, you can look at

* Sleep pattern
* Eye colour
* Tactile defensiveness
* Sensitivity to pain
* Pupil size
* Loose bowels or constipation
* Self stimming
* Obsessive/compulsive behaviour or speech
* How often does the child tend to escape
* Linguistic abilities
* Skin disturbances / rashes
* Ability to communicate with other people, particularly in genuine play
* Other problem areas you have been able to monitor.
*  Formalised ability tests, if your child can be tested.

In all areas,  you have to consider  the degree of objectivity or subjectivity,  since nearly everything can be explained or explained away as wishful thinking.  Therefore:  Have other people as well as yourself doing these registrations.

If this doesn't convince you about the value of going on,  and you still need some kind of "proof",  you will have to wait for the diet "accidents".  Of course, these can be staged deliberately, as experiments.  But sooner or later, they happen. 

4.3 But even so:  How do you know it's the diet, and that the child isn't just slowing improving from therapies, schooling, etc. ?

You should not think of this as either  or.  You need both. 

*  The diet is not an alternative to schooling.  It does not make all other therapies meaningless. 

*  On the contrary:  Our son's teachers find their work 100 times more meaningful when our son is in a  "good period" than when he is in a "bad period". 

*  The main thing about the diet is that it SHOULD change the  rate at which natural or forced development  CAN take place.  It's up to each individual and his/her teachers to exploit this opportunity.