My head is going to explode. Recent asd dx and I just don't what to research first???

[Catsdontcare]

There is just so much info out there and I don't know where to start. Aba seems to be highly recommended but I don't really understand it or how it works or who the hell to contact or how it would be usefull to ds.

I'm very interested in looking into dietary intervention as. Ds has gut issues but should I see a dr or just go straight to a private registered dietitian? I've lost faith in the system everything takes so long and I feel like ishould be doing something NOW!
Please help me order my thoughts so I can get on track with actually doing something meaningful for ds.

We do see a private salt weekly that's about the only concrete thing I feel is happening for ds right now.

How old is your ds?

Is the SALT making a difference?

He's 3.10. We've been seeing salt weekly for almost a year and he has made very good progress although his speech is still only at the same level as a two year old so a long way to go. I get so panicked about when he starts school in September I just want to do all I can to help in as much as possible so he doesn't struggle more than he has too.

I feel like there potentially loads I could be doing but am not because I don't know where to start

Are you getting DLA?

Have just sent off for the forms. Not sure if he'll qualify or not. His diagnosis is ASD but no indication from paediatrician where on the spectrum. Probe should have asked but was a bit shell shocked at the time!

You may not be told where your DC sits on the spectrum, in our area they just give a dx of ASD with no indication of severity. Our Portage worker maintains that it's not useful in any way, and that anchoring a child anywhere on the spectrum is negative as they may change over time. Not knowing will not affect your DC's claim for DLA.

with starting school in september - does he have a statement? If not you need to get it sorted. it takes at least 6 month (often longer).

oh, we recently got a dx for DD 3.11. we have not been told where on the spectrum she is either. paed says it is too early to tell.

re dla - we have been turned down on our first application, asked for a reconsideration and got turned down again. now applealing. if you get turned down, don't take it. a lot of people seem to get it only on appeal or at tribunal these days.

Thanks for the replies. I'm glad you mentioned statementing as I wasn't sure whether or not I could push for one now or had to wait until he was in school. I would much rather start the process beforehand so will start making enquiries on Monday.

Interesting that most don't get told where on the spectrum they are. It all just felt a bit your ds has ASD, here's some leaflets, see you in six months!

Diets good to look into. You don't need to see a doctor, just do it.

If you think he has gut issues I would start by cutting out gluten and dairy and seeing if you notice any improvements.

That's a fairly simple place to start, but of course it's just a start.

I would also be looking at supplements, as again it's something easy you can do straight away. I think he needs to be given Omega (vegepa), zinc, magnesium and b6.

These are simple, inexpensive things you can do relatively easily.

While you decide what expensive or time consuming things you want to do :)

My only concern about the diet is he has quite a limited range of what he will eat so I'm not sure what will be left to give him if I cut out gluten and dairy? I am certain that I will alter his diet as I do think it's an issue just unsure how to replace what I cut out?

Have been trying to get eye q into him for months but the sod smells it in anything I hide it in. Have to admit it is foul. Anyone know of any omega supplement that doesn't smell so bad?

he will need a statement in place by the time he starts school. don't wait. as said, it takes a miminum of 26 weeks. does he go to nursery? are they supportive?

you can apply for a statement yourself. IPSEA have a letter on their website.

maybe also worth contacting your parent partnership. mine has been really helpful. just now read that you don't really get any help. we had a meeting about a month after the dx with paed, salt, ep, nursery to discuss how to support DD better in the longrun esp with regards to education. though this is standard but obviously not.

Lenin I believe the eye q recommends 6 a day for the first 12 weeks. Which is why we haven't done it yet. Seems a bit pointless if we can't even get one a day in!

He goes to Pre school they have been supportive and have set targets etc for him and cooperate well with the private salt. I have the number for parent partnership so will phone Monday regarding statement.

I'm fast realising that the is no meaningful help to be expected from the usually dr's/paed/Nhs salt so I know it's all down to me. No pressure there then!!

If he's limiting his food to things with gluten and dairy in, that's often seen as an indication that there is a problem with those foods because they can be 'addictive' . Ds2 was the same, and did in fact live off rice cakes for 6 weeks when we went gluten/ casein free. But it helped him a lot, and he now won't touch those foods because he hates that they ' make his head feel funny'. So if you have nerves of steel I'd at least try it for a few months.

That's interesting his diet is very bread and cereal dominated and he has a lot of milk, eggs and yoghurt. Can a child exist on raisins alone??!!

Right priorities

1. statement
2. diet
3. supplements

Thank you it's helpful to have some focus rather running around thinking I should be doing everything at once

we use eskimo3 fish oil. it is liquid and does not really taste fishy. We hide it in orange juice.

Thanks will take a look at that

Eggs are fantastic. a Superfood apparently. You can get them with Omega three added in, and although the amounts are tiny, it is a start.

Can you switch to natural yoghurt and honey? Probiotic yoghurt good for gut.

Can you go from drinking milk to water? it will make him eat more, which is better for him, well it worked for us anyway.

Can you add sunflower seeds/pumpkin seeds/pine nuts with the raisins? Or apricots. All these things have good stuff in them.

I think the thing with the diet is to make an effort (it makes you feel like you are doing something if nothing else) without stressing yourself out too much or creating any extra behaviours you don't want.

Fish supplements are grim and we don't do anywhere near the recommended amounts, but I think it has helped him sleep. Flaxseed is the best tasting - and I put tiny amounts in most family meals.

Have a look at the Sunderland autism research unit website before changing diet www.espa-research.org.uk as they can do a urine test (through the post!) to help you decide if it is worth cutting gluten and casein from the diet. They need to have been eating normally when the urine is sampled, though.

I would recommend seeing a dietician, (maybe an NHS one, we did) to ensure that when you remove whole food groups from the diet you are substituting suitable alternatives to ensure you are still getting all essential nutrients. Not just a nutritionist, they aren't medically recognised.

I know that a GF/CF diet has worked wonders for some, unfortunately it had no effect on my DS2, but I considered it worth a try. I believe that anything that does no harm, is worth a try. Just do things one at a time or you won't know what has actually had an effect!

My DS2 has had eye-q for 7 years, expensive, but it really seemed to help. There are more expensive veggie versions that moosemama's DS uses, that aren't fishy.