Please help-really need input-feel like I'm losing my son

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Hi guys-

I'm hoping someone might be able to shed some light or direct me. My son, almost 5, is likely a borderline case - he's rigid in his speech, his interests and pretend play are narrow.

My son gets 2 hr ST, 1 hr OT, and I do my best to engage him with inconsistent Floortime.

More and more seems to be tuning others out - people try to make conversation with him and he is lost in his thoughts/fog, needing prompting to answer. Often, he's lost - get him to focus and just answers "yeah..." or something minimal like this.

Please I am really desperate here to see some progress - What would you do?
HOw can I boost his engagement, interest and joy in life, spontaneity?

I am open to all suggestions whether its diet, or this therapy, or playdates, or special school - whatever. I feel like I have been spinning my wheels for a year and really need some help for him. Thanks for reading - I did my best to keep things short!

What are your son's interests? Whenever I want to engage our son I talk about his favorite subject. What are you son's "narrow interests" that you mentioned, if you don't mind sharing.

Is your son in preschool?

It's worth a try putting your son on a gluten-free, casein-free diet. This means he avoids eating cow's milk, cheese, cream, yogurt, ice cream, bread, pasta, cakes, pizza, barley, ketchup, soy sauce and vinegar (all of them use barley to give their distinctive flavor which is a member of the wheat family) as well as some fast foods and processed foods in the supermarket that have got these ingredients as part of their recipe. Most sausages contain wheat so you'll want to avoid them too.

To put it as simply as possible, try giving him boiled potatoes and meat and roast or boiled vegetables for one meal. For another boiled rice, fried vegetables and chicken fried in a pan but with only chicken, no layer of batter. For breakfast fried bacon, fried egg, fried tomato, fried mushrooms.

Feed him whole, natural food so it's easier to know there are no things added that would ruin the diet. It's also good to do this because even people who don't have Asperger's syndrome are sensitive to artificial food additivies that are added to preserve and alter the flavor of foods. But people with Asperger's syndrome are even more sensitive.

Whether this diet or not is a solution isn't yet fully known, but a lot of people do try this kind of thing, a few books have been written about it. And the best way to look at it is, what have you got to lose by trying it for a couple of weeks? If you notice him happier and making improvements it's probably worthwhile.

I'd like to stress though if you do do this diet because you're cutting out milk it's essential you feed your son beef at least once a week because milk is where most people get their Vitamin B12 from, but beef is an even better source so he'll be fine eating that. If you struggle knowing what to give him for lunch, there are plenty of ideas but just one suggestion is buy a lunchbox and boil some potatoes and put in some good quality ham with nothing artificial added with some lightly boiled vegetables like carrots or broccoli. That makes a very wholesome dinner and is probably the kind of thing you'll have to do if he goes to school because almost nowhere has information on which foods are gluten-free or casein-free.

Don't be afraid of feeding him red meat even though it has a bad reputation these days. You can trim fat off meat if you want. And few people know this but through most of history the wealthy people ate only meat and they lived very long lives before there were such things as hospitals, antibiotics and operating rooms. Vegetables used to be considered food for the poor and many rich people wouldn't touch them. Now we know vegetables are very good for you but meat gives you strength and especially if you can't tolerate milk they are a very useful source of strength. Eggs are good too though, if he can tolerate them well. Some people also have trouble digesting eggs too. I'm one of those people. Ha ha - Aren't I lucky?!?!

Well, I hate to be the dissenting opinion but I don't think you need to start getting him any special diets unless he is showing signs of indigestion. I mean if he is getting sick often, constipated, or something else like that then I could see the need. But changing around somebodies entire diet simply because they aren't interested in small talk seems a bit odd to me.

Have you tried leaving the kid alone? Heaven forbid you let the kid spend some time in his head without people bothering him to socializing or other such things. I don't think your child is under any risk of being lost if you simply leave him by himself for a while to think without interruption.

Does he like music? Music was very powerful for my son in getting him to interact. Sometimes I would just play classical music and let him relax in his favorite chair. I would also play all kinds of other music--kiddy music, rock and roll, dance, blues. He loved it.

I agree with trying to engage him by talking about his interests. Even if you think they are odd, it is a way to get into his world.

Also, I didn't see if he was attending school or not. I saw big improvements when my son started attending special needs pre-k.

Does he like going on walks? I would take my son on walks and talk about things in nature and show him things and just talk to him whether he was responding or not.

My son is almost 5 too, and although he is interacting well with adults, he has very little interest in his peers. I just keep taking him to places that he enjoys, and give him the opportunity to interact, and then I am just kind of backing off and let him do his own thing.

Oh, I thought of another thing my son and I did. We drew together alot. Before he could draw, I would sit with him and say "what do you want Mommy to draw" He would say different things. Then he started drawing things and I would ask him what he was drawing.

I think the best thing overall is to just let him do his thing some of the time, and then try to look for ways to get engaged with him with stuff he is interested in.

Good luck!

Before trying the gf/cf diet, please read my blog. My family has been through a very rough time with the diet and all I can hope for is that others can learn from out experiance.
1) The diet WILL work for some, (my daughter included). But it WILL not work for ALL.
2) You need to work with special doctors, gastroenterologists, neurologists, and dieticians to get it right.
3) Before starting you MUST begin a food log and write down (with times) what they eat and any observable behavior/physical changes.
4) Before going gluten free you MUST get your child tested for celiac disease. Not all people with gluten intolerance have celiac, but if you go off gluten and improve you will then have to go back on the gluten to be tested for celiac. This is very painful.
5) It may have something to do with diet, but it may not be gluten or casein. Lots of people are reactive to SOY, which will likeley increase if you eliminate gluten and casein.
6) Also see an allergist. It is entirly possible that there is another allergy (lots of kids are allergic to dust or cockroaches for example) that results in distractability or difficulty in focussing.
7) If you do not see physical symptoms, don't automatically assume the diet will work.
Think, are there any other stressers affecting your child? Some kids get very quiet and appear to regresss when they are spending extra time contemplating new ideas or expanded abilities.
9) If your child is in school talk freely with the childs teacher. There may be a change at school that is hard for your child. It may be that the teacher has some extra insight into what the child is doing.
10) If you do not have reason to beleive that these changes are due to diet, DO NOT FEEL GUILTY about not trying the diet. Keeping the food log, sticking to the diet, adding back in certain trial foods at certain times is increadibly difficult on the entire family, particularly the child involved. If you feel that it will do more harm than good to go that route, DON"T FEEL GUILTY saving your child from needless trauma.

I am going to ask about what is NOT is your post: what is your child's day like? How busy is he, how much interaction is asked of him, and how much sensory input is he exposed to? In my experience, shutting down is a DEFENSIVE reaction to "too much," so start by figuring out if there are things in his life that are bothering him. Kids on the spectrum need and want less interaction, less sensory input, and less time that is directed to specific activities. Just being in the world can be exhausting for a spectrum child, so that when they get home all they want is to wind down. For him, lining up toys by himself might be the equivalent of a long, warm relaxing bath for an adult. At 5 kids experience a huge increase in expectations. Maybe it is all too much. Instead of throwing more at him, try throwing less.

Try seeing the world from his perspective. If he is staring a wall, stare with him and see if you can see what he sees. I'll never forget the story an AS adult posted on another forum of his happiest childhood memory: staring at the brick wall at his grandfather's. In his mind, he would arrange the bricks into interlocking people figures, and then count them. He could do that for hours, and if anyone tried to talk to him during that activity he considered it an interruption. Your child's world is likely to be full of little things like this that we are not normally capable of seeing. If you want to communicate with and connect to your child, it is time to learn to see the way he does.

What our kids need more than anything is for us, as parents, to understand how they see the world and how their needs differ from what is normally offerred.

As for diet ... PenguinMom (the post above) is the person I would trust for information on it, because she's been through the ringer with it.

Just wanted to say, my son has been on a gluten free diet since August and the change in him has been great. It has not "improved" his autism, but it has DRASTICALLY improved his ability to handle things around him. He used to have Constant tantrums and it was awful. You could tell sometimes that it frightened him, being so out of control.

I thank God we found this out. Yes it doesn't work for everyone but for him it's been a lifesaver. He is not allergic to wheat, does not have celiac, yet something in gluten affects his brain chemistry dramatically. I wish he could tell me all of what he feels when he does eat something he shouldn't. I know gluten affected him terribly. He is much happier now.