The autism cycle

[Guest guest]

I went to the Fairfax conference and also to a lecture for picky eaters

that included a nutritionist. I figured out why DAN doesn't work for

many families. It's because the parents are getting conflicting

information from experts who give the opposite advice and contradict

each other. They are only looking at their little piece of the puzzle

and not about how each part affects the child. I have put together the

autism puzzle as far as all the experts that take care of these kids and

how their little piece changes the rest of the picture.. Pay attention

because this is confusing but when I put each piece together you'll

understand how each expert puts a piece in to help a child in one area

and takes a piece out in another area and none of them are in at the

same time. Okay, here goes.

The reason The DAN protocol doesn't work for everyone is that

different experts give opposite opinions leaving parents confused. The

parents start with GFCF. The ABA therapist awards kids with gluten

cookies and cakes.The nutritionist says the child is underweight and

needs fat from milk which makes the kid act out. The therapist takes the

food away the kid gets better so she gives some more. The pediatrician

says the child is acting out so lets medicate and gives them Ritalin.

The Ritalin stunts their growth so now the child must need more fat from

milk. The child is calmer on the Ritalin and so the ABA therapist gives

the child another cookie. The cookie makes the child act out so the

pediatrician gives the child more Ritalin. On top of this the child is

eating a little because he knows if he eats too much he might vomit

because he has acid reflux. The parent tries very hard to get the kid

to eat because he is underweight and his intestinal tract is inflamed

and his body cannot absorb the food. The parent wants the child on the

growth chart and gets the food in the child. The child is malnourished,

and constipated so he projectile vomits because the food has no where

to go. The child develops an allergy to the food that he is being fed

and then reacts. The immune system is weakened because of this allergy

so the child gets the flu. The parent gives the child Tylenol which is

filled with artificial colors, and it lowers the glutothione and makes

him weaker. The parent doesn't want the child to get the flu so the

child gets a flu shot. The child is even weaker from the vaccine and the

child gets sick and is on an antibiotic. The antibiotic kills the good

bacteria in the gut making the immune system weaker and the child gets

sicker. The immune system is very weak and they can't get rid of the

mercury so the child's behavior is worse. The cycle begins again with a

new DAN protocol. The parent removes the allergies. The child feels

better but now can barely eat because his intestinal tract is highly

inflamed and won't eat at all. The parent discontinues the GFCF diet

because the child won't eat anything at all because he is malnourished

and weak and getting worse. The parent is completely lost and gives up

on the whole thing. After that story, who can blame them.

Doesn't that sound like some of your friends? How am I doing so far..?

Let me be clear, the main point is that the parent will spend all his

time keeping charts and graphs and going from expert to expert telling

each one that they do not agree with the other experts. This is a lack

of communication between all parties and the parent has to sort all that

out to get the experts on the same page and agree. He may also be going

broke to pay for all of this and fighting the schools which is another

issue to fight about. No wonder we're all exhausted. For the parent to

succeed, he has to break the cycle. Reward the kid doing ABA with

something other then food. Give the child more calories with something

other than milk fat. Teach the pediatrician that a side effect of

Ritalin is stunted growth and if they want the child on the growth chart

for a child who is underweight, then if they child is starving and won't

eat and is not growing that Ritalin isn't the answer for this child. The

parent has to figure out how to help the child expand his food choices

while still staying GFCF and taking out the allergies. The parent has to

figure out if there is an underlying cause for not eating such as acid

reflux, inflammation etc... The parent is not given any credit for doing

all of this because the experts think they know everything which they

might but only their small piece of the cycle and not how it affects

everything else. The parent is frustrated because they all want the

child to be succesful, but it takes some crisis management and great

skill and energy to put all that together. Since many parents often have

the same underlying medical issues that the children have, they are too

exhausted to spend every waking moment taking care of an autistic child

and fighting with all the experts in order to break the cycle. The

parent gives up and become frustrated just getting through the day and

trying to get their child to eat anything at all.

--

Walsh

Mom to Robbie and

Identical twins mostly recovered from autism.