[1589] ASD: “Please give me some hope” (edited facebook thread) (January 2021)

This thread has been edited to preserve the flavour of a recent long discussion in the closed Failsafe group 

Question to parents of autistic kids: Did you see them getting worse before getting better after starting the diet? Today we are on our 5th day of diet. I saw benefits like good sleep, less anxiety and good energy. But today he is irritated, looks sick, crying, pinching and inattentive. I’m feeling very low. Please give me some hope.

I must also mention my son gets horrible symptoms after eating stuff like okra , eggplant. He becomes uncontrollable with his silly laughter and hyperactivity. Which lasts for some time followed by crying/cranky days.   Problem here is our 7 yo can’t say what is bothering him and we are already on gfcfsf corn and soy free diet since many years. Now he is much better now focussed , happy , energetic but still stimming eeee and playing with his saliva – U.

The diet worked here, but it was very important for me to keep a food diary of all foods/ingredients eaten by my child. Sometimes something you might think is okay is actually a trigger. It’s a bit of detective work, but well worth it in the long run - D.

Symptoms can be from foods eaten up to 3 days prior! It also depends on the cumulative effect of repeated foods or food chemicals groups eg salicylates. So it might appear that a food is tolerated one day and not after a few days as the body has reached capacity - L.

I have one child that failsafe was amazing for, and the other it made no difference. Both have Autism - K.

If you see withdrawal reactions pretty quick there is absolutely hope, unfortunately it can get worse before it gets better. Sleep improvement was 1 of the first things I noticed within days. Hang in there, get through the withdrawals, you will be glad you did - S.

We had over a week of withdrawals and looking back I could see each of our food reactions being stripped away one by one. Aka the withdrawal symptoms mirrored her different intolerances (Sals make her vague, amines make her antagonistic, glutamates make her hyper, antioxidants make her crazy). After withdrawals she calmed right down - R.

We had no withdrawal symptoms but did find extra foods he was not ok with. And as he was having extra of those due to the more limited diet it can be confusing... the dietician and allergy specialists we worked with were very helpful in this - M

Mine had both digestive issues which improved dramatically and one child had behavioural issues and had been asked to do an autism assessment. His teacher later commented that she could no longer see signs of autism. He is currently having attention issues,  sometimes after adding a few new foods so will have to scale them back again and experiment. He is still extremely focused on certain things and is very sensory and somewhat emotional at times, but no longer screams, cries, hits, can't focus etc unless he eats the wrong foods – M (again).

I have symptoms of autism and work with autistic kids. My experience is that we aren’t sensitive to natural foods as a rule - we’re reactive to food additives and additives in other products. I don’t believe in withdrawal symptoms in my experience if you’re still reacting that means you haven’t eliminated all your triggers yet – M2.

We can't say that all symptoms will be gone if he's avoiding his true triggers. I don't think autism is something to "cure", but manage – M2 (again).

I guess that the other thing to keep in mind is that not everything is going to be about food chemicals. Stimming and playing with saliva are potentially sensory seeking behaviors that allow him to engage with his environment – M3.