Trawling the internet looking for an answer

You woke up at 5am today. Well, actually, I woke at 5am, lay there praying that I could go back to sleep, and you woke at 5.05am. The cat woke at 5.06am and started jumping at the door handle, and then Mummy got up and went to see if she could get you back to sleep. After 5 minutes I heard something that sounded like you were having a conversation, and a bit later I saw in the dark Mummy bringing you to bed. You're usually very good at night. You sleep through most of the time, and things have been even better since you are sleeping in one place and you aren't getting two or three hours to nap in the afternoon. You go to sleep in 10 minutes maximum now, usually between 7pm and 8pm. It has improved our lives no end, and your mind and body seem to switch off at the same time. No wrestling at 11pm when your body is full of energy and your mind is fried. I'll never know why in Israel the State advises such a ridiculously long nap. It must destroy families. It certainly helped in destroying ours last year.

I've been spending a bit of time trying to plan the step-by-step approach to our new lives. I think the first step must be to get through the initial Health Service diagnosis period. No-one wants to speak to us in anything but the vaguest terms till we have the document. Meanwhile, I think we need to get hold of as much information as possible so we are ready for the report we will get in a couple of weeks, and so we can act immediately. We probably need to get a second diagnosis too, and Noam from The Shinui Institute might be able to help us with that.

I spent a bit of time of the last day or so looking up diet. I have a theory that generally psychologists recommend psychological approaches, therapy and things like that. Doctors generally like to prescribe medication. Homeopaths swear blind that natural remedies work better. And parents will take anything and everything, from anyone and everyone. I mentioned before about the Gluten Free Casein Free Diet that seems to crop up a lot on the internet. It seems to be a word of mouth thing, I can't see any solid scientific sources quoting it as gospel. But there seem to be as many people praising it as there are people singing to the high heavens about ABA. I read some success stories on one of the websites that many parents think it seems to make an almost immediate impact. One parent said something that sounded enormously similar to you, that her child had almost been self-selecting all the foods that the GFCF diet would rule out. And recently, you've been living on cornflakes and milk, bread, cheese in some form or other whether it is sandwiches or pizza, corn shnitzels and anything sugar-laden and sweet. Whereas once you would eat other things - from broccoli when you were one, to sweet potato soup only 6 months ago, you have been narrowing down the options till I suspect we will just get to chocolate milk and biscuits. Reassuringly, you still love fruit, though I can't get you to try anything new like Sharon fruit, despite the fact they were named after the place you live and at the moment they are virtually free in the market and so so sweet.

I've read in a couple of places that people have been cured of autism just by going on a gluten and dairy free diet. It's hard not to be hopeful that it won't help you. One of the websites said it helps 65% of children but it is so hard to analyse who is saying what and obviously, those parents with a success story are more likely to say something on a forum or website than someone who tried something and couldn't see a positive result. The self-selecting thing did make my ears prick up though, and the fact that as your diet has narrowed, I see more outward signs of stereotypical characteristics: flapping and arm-waving, shrieking instead of just asking for what you want, running up and down and the need for physical activity. Other parents say that speech and eye-contact improve rapidly, others add that social interaction gets better. I think we are going to spend a while doing a bit of research and keeping a log - maybe till the final assessment with the psychologist, then we will change your diet. I don't think we will change the family's diet at this stage, and maybe we will phase out milk first. I'm not sure, I'd like to actually speak to someone about it rather than the internet that doesn't answer back. We'll do it for the time between the blood test/psychologist's diagnosis and the next step; I read someone saying that they wanted to see how it worked in isolation, therapists are often very keen to claim the success for themselves. I'm going to start keeping track of what you do, what you eat, how you sleep, how you behave, a log. Maybe a week or so should give me an idea that you flap your arms once an hour or once a day on average, that sort of thing. Meanwhile, we'll get our hands on some better information, some cookbooks, that sort of thing. Maybe I'll get Safta to come over and cook with me, or I'll go there, we need to have 100% control of what goes in for a while. Safta comes from the place where if you eat anything it is always good, and a little bit of bread won't change anything. I've read enough stories to see that a tiny bit of something on the banned list has returned the child to the former state in hours. We'll need to be careful.

I think they have found that children with autism have problems processing gluten and casein, they lack an enzyme or something. I also read that someone gave their child Vitamin B6 and it worked wonders. Apparently it is a pretty common alternative therapy, lots of autistic children just lack it and need a megadose. There has a bit of research showing that it is important too. I'll need to do some more research, and wait for the results of your blood tests (or actually find out where to actually take you for them first), then see how that applies. Magnesium seems to be important too. They seem to work well if they are prescribed together, and what I found is that scientist are quite evangelical about what information you can trust, how to conduct a study, what should be doubted. The studies have to be blind and controlled otherwise a miracle cure is to be doubted. That doesn't even touch on who is actually funding the study, or the bias that the scientist might have begun with.

I read something on a website that there seems to be a vitamin treatment including B6 called Super Nu Thera that has had hugely positive effects in some cases too. I presume you do B6 or Super Nu Thera. Let's get the blood tests first. There is also a Guardian article which mentions a parents' group called Generation Rescue run by Jenny McCarthy and Jim Carrey that claim that autism is absolutely not genetic, as doctors tell us, but mercury poison which has been wrongly diagnosed. There is a mountain of information and theories out there, and I'm feeling swamped.

We had a great morning, except it ended at lunchtime rather than 9.30. We took Mummy to work, and you had a few tears even though you were saying "Bye-bye Mummy". You understood what we do when we drop Mummy off, and we went to buy some milk. Except we didn't get there for and hour and a half because you ran straight to the library. We spent ages outside the door of the library, you love the games room that they have there. Eventually we got to the swings, after a few tears, and I saw Miri, who has a little boy in your class in nursery. She asked why you weren't in nursery and I explained about Dr Pozner. She wanted to know what the diagnosis was and why you weren't in nursery, I said we don't have a diagnosis yet, we have lots of psychological tests and blood samples to give, but the doctor did say you absolutely shouldn't be in that nursery, you needed a small one. I said when pressed that it might be ADHD or Asperger's Syndrome, maybe an allergy, maybe something else. We had a discussion about you, and how much you flit between things, and how much energy you have. One of the part-time nursery teachers was also in the park, Shuli, and she is very fond of you. She talked to me a bit about it, and gave me her number for Mummy to speak to her about a very small nursery in a big place in a moshav called Beit Yitzhak.

We went to the shops, finally you caved in, and I did something I had never done before, something I saw in the Tomi website. I wanted you to come to the shops, and I wanted you to stay with me in the shop and not run off like you usually do. You went into the kiosk and helped yourself to gummy bears, and I thought, "ok, let's see if the bribe/reward thing works". You stole one, I bought three and rewarded you all the way round the shop for being good. You barely, only once and you came back, ran off. You held my hand. Interesting. And you were good all the way to the car.

We had some fun at home, you had Marmite on toast for lunch, with an apple and some mango juice. It's going to be difficult if we drop wheat. You were itching to go out though, and when we got to the lobby you just wanted to play in the lift. One of our neighbours tried to talk to you, but you blanked her. You are much more friendly witht those you know. And to be honest, I don't like her, I blanked her too!

You were clearly exhausted though, we went out and you had no energy. Mummy was very stressed, the first week of the month is always very hard for her, and since her boss decided to move on the last day of January, nothing works in her office. She, like me, wants you to have regular routine. If you are not asleep by 8pm or so, then the tension rises and Mummy is always trying to run your routine remotely. I get told not to let you sleep, not to let you sleep at a certain time, not to let you sleep more than half an hour. I always agree, but what I get is a tired, irritable boy who was far too alert to go to sleep at midday but is flaking out at 3pm. The choice becomes an awful one: either let you go to sleep for an hour or two, and understand that you won't go down till 10pm, don't let you sleep at all and you will be irritable beyond belief, or let you sleep for a bit and wake you up, which very often backfires and you don't go to sleep early enough but you are still irritable. I prefer option one, accompanied with the inevitable fight with Mummy. Mummy doesn't. A source of tension that hopefully we resolved today.

When you turned the TV off, tried to shut the computer down and put your shoes on, I got the point. We went out, but you just had no real desire to play. You wanted to ride the lift, then sit and play in the sand and stones where they are building the promenade. So we came back, albeit under protest. And while I was in the loo, you went to sleep. I woke you after half an hour, and you were desparately miserable. It was the worst I had seen you all week, not communicating, lots of stimming, not communicating at all, outbursts when you didn't get what you wanted, not particularly happy to see Mummy or Safta. I'm not sure, but today you basically only ate gluten and casein, and an apple; you even refused strawberries.

Mummy broke when we got home, and couldn't cope with the pressure of work, with me being exhausted after your most difficult day in a long time, with the pressure of needing to find out about what to do to help you but having no time to do it, and just generally with the lack of down time. She cried, I put you to sleep. It was a very hard day. I hope that tomorrow will be easier. I'm going to start the log, and Mummy is going to contact a dietician. If you wake after 6am or 6.30am I think we'll be fine.