5 How far will the diet help ? 

When we learnt about the ATEC test, available at http://www.autism.com/atec , we did three scores, trying to be as objective as we could, entering data for what our son was like before the diet, after the diet (his mean best level of functioning) and how he is like during regressions (often from 2 - 20 days after a diet infringement). 

                                                                   Baseline Today Regression
Speech / language / communication           24            8             20
Sociability                                                       31            4             25
Sensory / cognitive / awareness                  34          15             21
Health / physical / Behaviour                        34             8            20
Total                                                              123           35            86

I guess that a "totally cured" patient would get a score around zero.  Our son is not, by any means, "cured", still a general level of 35 is absolutely wonderful compared with where we started. 

Where would he have been without the diet ?  Would he have been at 86 today, = his "regression level" ?   I find that unlikely. Some development would, doubtless, have taken place.  But from he was under two, and till he was eight, there was precious little development.  Some of it was clearly negative.  Autistic development can, indeed, be a powerful negative agent. When he's regressing, our son doesn't "unlearn" all that he has learnt during the last 8 years. My guess, based partly on what I've seen of other autistic children growing up, is that the overall score would have been fairly stable; gains in one area would have been cancelled out by increasing trouble in other areas. Maybe the Autism Research Institute have data that can explain more about this.

The test is subjective, but it's a lot better than the totally subjective and sometimes far too introspective judgement of whether or not generalised "improvement" has taken place.   Mind; I'm not blaming subjectivity. It's important for our children to know that we emphasize everything that's positive, explain away or ignore part of the negative, and to put every little step of development in the best possible light. But that makes us liable to "find" improbable improvement over the short term, only to run into trouble later when the steep upward path of the graph doesn't continue.  

Therefore, I regard the test as a blessing because it introduces at least some element of relative objectivity into an easily accessible test. By asking relatively precise questions, it will help us overcome part of our subjectivity for a limited amout of time. 

I realise, from reading other children's scores, that we must have started with a more desperate kind of problem complex than most of you lucky people out there. I don't mind: I've known for a long time that my son was battling with an unusual and enormous problem. Eight years ago, I would still start crying when I saw "NT" children walking by in their best dress, ready for their first day at schol. I wanted my son to be out there, among them, on his way to a great future.   Only he wasn't, and he still isn't. But that doesn't matter as much any more. The thing that matters, is not where we start or where we end up, but to make sure that we get hold of whatever opportunities we have. Dr. Rimland's test is one way of making sure that we're moving in the right direction.  

I think that for some of the very small children, the diet could help them reduce their score substantially, from a high level (>100 age adjusted) to near zero, over a few years or maybe even months. They are the ones that are talked and written about most. Don't make them your yardstick. Run Dr. Rimland's test at whatever time interval you find appropriate. Aim for the stars, if you like, but remember to rejoice over every single point of advance. Five points in a year would be good. Fifteen or twenty would be wonderful. We've been blessed by a yearly average of eleven.

5.1 Our experience  -  the baseline

Our son started the diet at 8.  He is now 16.  His life took an entirely new direction when he started on the diet.   This is clearly visible on the long term scale, even though anybody's free to speculate what he would have been like if we had not intervened.   I've seen him "before and after", and I've seen other children "before and after", and I'm absolutely dead certain that the diet has been a necessary condition for the development that has taken place. 

When he started, he was 8 years old, biologically, but as far as he could be tested, he functioned on the 1218 month age level = the age he had when the symptoms first appeared.

It was, however, extremely difficult to compare him with any "normal" one year old person, because certain parts of the personality simply was not there.  There were simple functions that ANY normal one year old master, but which were completely beyond our son's comprehension. 

The general development from the age of one to the age of eight was, therefore, very nearly zero.  In some respects it was slightly positive.  In others, it was clearly negative.  By all measurements, it was excruciatingly slow.  Our greatest worries were concentrated around his lack of development in the cognitive area, and as regards language.

We had no working language whatever, and understood very little of what we said.

His sleep pattern was seriously disturbed.  

He had permanently dilated (larger than normal) pupils.  The white part of his eyes seemed to have a slight, permanent irritation.

He had a strong craving for certain kinds of food, primarily those that contained milk and gluten.  His personal favourite was waffle batter:  He'd do anything to get at it if he saw us making it.

He could appear to be partly deaf and blind so some stimuli, yet his hearing was clearly way above average, and his eyesight was no problem either.

He had practically no sensitivity to pain.

He had permanent loose bowels, and was in the process of getting toilet trained.

He did several forms of self stimming, and showed lots of obsessive/compulsive behaviour.

If left outdoors alone, he would escape.  If left behind during a walk in the forest, he would simply move off on his own.  He simply didn't behave as if he belonged.

He had no tendency whatever to interact with other people or children in any kind of genuine play. 

5.2 Improvement after three months on the diet

He seemed, on the whole, to be doing slightly better.  This was a subjective estimate, and we didn't trust it. However, there were two striking differences:

He could observe us making waffle batter and frying waffles without having a major battle.

He started using words again, and for the first time put two and two of them together. 

5.3 Improvement after one year on the diet

After one year, there was remarkable improvement in nearly every area that is listed under "baseline" above.  He had acquired 25 words that he could use for communication, and he was clearly able to understand more than 500.  He slept better, ate more normally, was toilet trained during the daytime, and mostly (as far as the big jobs went) during the nighttime.  His sensitivity to pain was getting more normal, and, curiously, his skin was also doing better:  His rashes had all but disappeared. 

During the next six months, he became "best friends" with his little sister, engaging in genuine play with her.  His language improved rapidly, and he was soon able to pick up, more or less instantly, any word that he was able to understand and use.

The most impressive thing about the diet is that within one year of starting it, he seemed to have a "whole" personality again.  There were, no longer, any noticeable gaps in the personality profile.  The cognitive functions were still his weakest area, but at any rate it was meaningful to talk about "cognitive function".  

5.4 Further improvements later on

The most important aspect today, is his ability to learn and to stay "connected" with other people and with the "here and now", in a relaxed fashion.  He's no longer totally in his own world, indoors or outdoors.  When we go for a walk, he comes with us instead of remaining behind.

What he still hasn't unlearned, is his standard tactic of evading any challenge that he doesn't want to meet.  For the first 8 years of his life, he evaded almost every problem that he met, by turning inwards.  Today, he is able to learn quite fast, when he wants to (we've seen it happen many times), but he still has a very real problem of turning away from problems instead of solving them.  We think that the ABA theory gives some very valuable insight about how to handle this kind of problem. 

5.5 Refining the diet has helped a lot

During the first 56 years of "GFCF" diet, we mastered the "CF" pretty well, but we had problems with gluten supply through wheat starch.  We were seriously mislead about the labelling:  It said "gluten free", but that is a LEGAL, not a CHEMICAL definition.  Anything containing less than 0,3% of gluten can be labelled "GF" here. 

During these years, our son's condition was never stable:  There were better periods and there were worse ones.  The best periods were were always short  less than two weeks.  We wondered intensely what might be causing his periodic regressions.

After we removed the wheat starch from his diet, our son functions mostly on the level that his first teacher called "the heavenly days".  Today, they are the rule rather than the exception.  He still has regressions from time to time, but they rarely last more than three weeks, and we think that they are caused by dietary infringements.  Some of these infringements are observed.  Some are not, but we have, on one occasion, found its traces nevertheless in a peptide analysis.

We have, "on suspicion", also eliminated soy protein, eggs and certain pigments.  We're not certain about the value or danger of these foodstuffs.  Soy protein is supposed to be fairly similar to milk in some respects, and to "cross react" with milk in some way.  The possible pigment connection is described below, in the section about "Sara's diet". 

5.6 The possible yeast connection

Much later, we found William Shaw's book about "Biological treatments", sent a urine sample to the Great Plains Laboratory, and were told that it held unusual quantities of tartaric acid.  We then started giving our son Nystatin, and stopped using yeast in his bread.

Yeast free GFCF bread was really easy:  No more bother than the other variety.  Look up the "how to do it" section if you're interested.

The Nystatin (and, possibly, the yeast free bread) caused an immediate change in his bowel movements:  They became harder and stayed that way.  We interpret this as a sign that the Nystatin had, indeed, wiped out some kind of yeast or fungus in his intestines.  After starting the Nystatin, we also broke the record for the longest spell of consecutive "heavenly days":  They lasted until several months later, when we stopped the Nystatin and started giving grapefruit seed extract instead.  Then we were back to the slightly less stable state he'd been in before.  

5.7 Does autism (or do bioactive peptides) cause irreparable brain damage ?

We once told some parents that we believed that most autistic children wold suffer irreparable brain damage if the condition is left untreated for too long.  This touched some sore nerves.

We'd like to use a parable to explain what we mean. 

"Autism", in the classic sense, is a development disorder.  Imagine "normal" development to be like a train journey.  You start out somewhere down in Florida (or wherever), and end up somewhere else, let's say in Alaska if you grow that old. At a certain age, you are supposed to arrive in Minneapolis.

Only you don't:  Somewhere along the journey,  one of the psychoneurobiological switches  was accidentally put by in the wrong position  and the train derailed. 

From that point onwards, the child is still "developing".

Maybe the train is moving slowly along some bumpy side track. More probably, it's stuck in a bog.   Rust and mud are creeping in everywhere.

If you act fast,  you can pull the train out backwards, get it back on the rails,  and send it on towards Minneapolis.   If you wait, your prospects of ever getting there grow slimmer by the day.

We know people who have been intensely dissapointed  by the diet approach to autism.   They resemble, to me, the happy family crowd that have been standing on the platform in Minneapolis  for so many years, frustrated and unhappy.  Then they tried to go home, only to find themselves crying in the rain on that dreary platform again.

Then they learn that someone has found out  the cause of the accident.   The railway people have identified the switch  that was wrong in the first place, and have mended it.

The family become awash with hope.   They run down to the station in Minneapolis  and start rolling out the red carpets and waving their flags. 

Of course they will be disappointed.   The train, if it's been standing in a bog for 8 years,  isn't going to arrive today.  Not tomorrow either.  If ever.

When we started diet treatment, our son was 8.   It took a long time to pull him backwards out of the bog of  opioid neuroactive peptides, and get them out of the system.  Slowly, the fog lifted.

Gradually, we found ways of undoing some of the weird "development" that had been going on  for 5-6-7-8 years.  We started pulling him back  towards the point where he left the track so long ago.

Please:  NEVER give up hope.   An autistic individual isn't only a person who "HAS" autism.   Autism is a name for something that has developed IN the personality, it's something they ARE.  Even before the diet,  we had found ways of meeting our son where he was out there in the foggy boggy countryside.

After the diet,  we were no longer scared by the strangeness of his ways. We saw them as natural  and for him probably necessary   ways of adapting to abnormal circumstances.  

Some parts of those early adaptions  are probably going to remain parts of his personality  and his neuropsychological makeup until he dies.

Our son is 16 now.   He's probably never going to be able to live a "normal" independent life.  But who is truly independent ?  The GFCF diet has enabled him to learn a language, and to use it, in a primitive fashion.  It has given him peace of mind.  It has helped him develop his strong sense of humour.  It has given him the intense joy of understanding and being understood.  He is no longer a scary stranger:  He is very, very human.

As long as he sticks to the proper diet,   he will probably always give to those around him a feeling that they are not only needed,  but that they are succeeding in helping him.  He will also give them the certainty that they are dealing with a uniquely honest, wellmeaning fellow human being.