I'm just a dad trying to help his daughter!

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Hi everyone,

I have to say I am really glad I found this forum! I'm really trying to understand what my daughter is going through. Can you all help me?

We're following the DAN! protocol, the GF/CF, corn free, soy free, banana free, apple free diet, etc. Does this help any of you?

Also, she hums a lot in a deep guttural, monotone kind of way (she's also non-verbal, with the exception of "dad") and I'm wondering what purpose it serves. Is it just a comfort thing? Is she blocking out sounds she doesn't like? I noticed she does it when the vacuum is being run, so I'm assuming she doesn't care for the sound of it.

And what is it with hangers????

I really want to help in any way I can, but I also want to allow her to be herself. So, as a parent I'm stuck between trying to intervene with treatments early while still trying to let her know we love her and accept her no matter what.

Thanks in advance for any help or advice I can get!

there is no treatment for AS or autism, if you have a child with this problems you should know that. What age is she?

Hi!

I just posted to you on the parent's forum, and I want to forewarn you that you aren't going to find a lot of DAN proponents here. I've explained that more on the parent's forum, and you may find it more comfortable to discuss that aspect over there.

As for special diets, I have heard from quite a few AS that gluton free is beneficial, and a few have milk allergies, but most haven't needed the full on program. It's a very large and broad swipe at something which can be narrowed down if you watch your child carefully and see her reactions. The wonderful thing about high functioning AS that they can test these things on themselves and report the results. Most have no negative food reactions, but there is a decent percentage that do, especially when it comes to gluton, so that is worth a try.

I think the world has over-sold early intervention, in that parents have been led to become afraid, and fear is easily preyed on by the unscrupulous. There are some benefits to certain types of early intervention, and there is a pretty good discussion of it on the parent's forum, but many of the medical treatments you will encountered are not well supported by reputable science.

First and foremost will be paying attention to your child and interpreting the clues she gives you. The more you do that, the better off both of you will be.

Oh, and be patient when you get negative comments posted. AS can be quite blunt, and many hold a decent amount of anger (understandably). Think of it all as information. If you want to do best by your daughter, understanding even negative veiwpoints will be productive.

theres nu cure for autism trying lots of drugs that makes your kid social can have lots of side effects to expecialy (really)
the only really helping treatment is maybe putting her on an school for people with disfunctions because school for me is right now worse than a living hell
its good to see a father do research alot of parents seems to doin this lately ^^
anyway theres no choise to accept her for who she is you can give her medications but not take suddenly because they can really have huge side-effects
i think a shrink can be helpfull for many reasons to

i also hum to myself deep monotone constant repetitive, its a stimulus that is self soothing and has for me become a habit.

so...normal for AS.
humming resonates loudly within the skull and provides me with a quick self sooth.

when you ask questions like " what is it with hangers" these are considered open ended questions and you wont get a helpfull response unless you qualify this statement.

intervene...but love her for the way she is?
then why intervene?
treat?
what is broken?

im a parent of an As child as well.
normal for me and him is AS.
i dont treat or intervene.
i just teach him how to adapt enough to get by in the real world.
but in our world...normal is AS.

if you want one piece of advice that will last for a long time then this is it: normal for AS...is....AS.

That is called a ‘stimming’ or self stimulatory behaviour. What does to ‘stimulate’ mean? On a neurological basis it is the acceleration and streamlining of the transmission of messages i.e. neurotransmitters jumping the gap without being recycled before the message has had a chance to get passed on. Drugs like cocaine and caffeine have stimulating properties, but that doesn’t mean the work better then self stimulatory behaviour in focusing the mind in everyone. Self stimulatory behaviour is not exclusive to autistics. One of the most common forms is general moving about or exercise. Other nuerodevelopmental disorders have it too, like hyperactivity in ADHD. Different sorts of activities appear as if they stimulate different parts of the brain. It seems that people on the spectrum need a much more sustained and rhythmical sort of stimulation.

Why do it when the vacuum is on? That is a difficult question to answer. I think you may be in the right ballpark. She may be trying to counteract the effect of the vacuum. If you understand the principle of filter theory, then you would know that external stimuli can directly affect (get mixed up in) cognition. It could also be the opposite like complementing the sound. It is also not simply a case of adding a turbocharger. You have a mix of under stimulation and over stimulation and this varies throughout the day and in different the environments.

Never underestimate the body’s ability to pull something out of the bag in order to get things to work. Some of the weirdest things are not simply affections but necessary.

This is why you shouldn't discourage self stimulatory behaviour. It literally can help her think, and even experience emotions, etc.

Stimming can also have a neutralising/calming effect on anxiety, although this is far from a hard and fast rule.

In many cases self stimulation is more then enough (probably the majority). For a smaller number of unluckily ones it doesn’t cut it.

The drugs that attempt to substitute self stimulation quite frankly are pretty crude. I should know I been on every single one of the attention drugs, and some other cognitive drugs also used for Alzheimer’s. None of them worked. For those they do help, they have usually got around 10 year maximum before they ware off, then they are on their own. I’m just about to try some anti-psychotics. Not because I am psychotic, this is just the class they are in, but due some vague research that they may occasionally help some people on the spectrum. Maybe I am masochistic. I wouldn’t recommend this for anyone at all, unless they feel they have no other options. It is certainly not for someone who can’t make these decisions themselves. Most people wouldn’t play with fire. With any cognitive drugs you are a guinea pig.

I meet up with a non-verbal autistic. One of the things with non verbal’s is they often completely underestimate their intelligence. He didn't communicate with anyone until he was around 8 years old, when he was taught FCT. He had obvious already taught himself how to read, but none was any the wiser before this. The stuff he is interested in is pretty advanced for a young teen, by a casual observer might not think he was capable of it.

Just a warning that anti-psychotics can have severe effects on many autistic people, because of many of us having pre-existing movement disorders and epilepsy (and they can turn sub-clinical seizures into full-blown seizures, too, or mild/infrequent/partial seizures into severe/frequent/generalized ones). Despite the research, I know only a handful of autistic people who actually prefer to be on them, and many who are the opposite. I also know an autistic person who was put on them as a child, and only was able to start speaking once they took the person off of them.

(They increase my disconnect from my body, as well as create disconnects between parts of myself that are normally connected just fine, personally. Not fun. Especially when I try to do something and the ability is just vaporized, and so is my ability to know that the ability is not there. So I just keep trying to do it the thing over and over until I start screaming my head off. Yuck. Just be careful, they're among the more powerful ones out there, and hard to withdraw from too, physically painful quite often. From people I've talked to, my experiences are fairly common.)

Absolutely, I'm just going to give it a try to see what happens. I may well be on a hidding to nothing.

Thanks for all the replies!

I think I need to clarify a couple of things....

First, I'm not trying to "cure" anything. I'm hoping the treatments will help her feel better because there are physical symptoms that stem from an unhealthy body. Secondly, I'm actually extremely opposed to treating ASD with psycho-tropic drugs. I think part of the problem with most people (ASD and NT's alike) is that we are over prescribed drugs. So for us that will never be an option. As for the diet, I definitely see that helping. We pay very close attention to her food intake and the results certain foods have on both her body and brain function. I know it's helped me feel better too!

Also, I understand the stim behaviours. I'm just trying to get a better sense of what may be going on in her mind so I know when/if to interrupt. And the hanger thing--well, she likes to just stare at them and spin them around and do her humming and I've noticed others with that stim. Just intrigued as to why.

I absolutely adore my little 2 1/2 y.o. daughter and am just trying to gain a better understanding of her world from people with similar perspectives. For instance, the info from donkey about the humming is very helpful.

Trust me I'm not trying to force her to be like everyone else (because I know I sure as hell am VERY different than "normal"), I'm trying to be able to relate and give her the best chance possible for happiness to deal with a world that is way more sick than anyone chooses to acknowledge.

I used to get the urge to sing when the vacuum was on, and I like the sound of the vacuum! I like white noise, like refrigerators running, furnace, car motors (I actually fell asleep at Michigan International Speedway during one of the races believe it or not, the sound is so soothing to me).

I do humming a lot when I'm experiencing overload, but also do it at other times, such as when relaxing.

Also I agree with you that there's nothing to cure - the idea is to educate and work on developing skills, and for those skills that don't get developed to have proper accommodations and support and understanding in place.

When I was her age about, I would repeat "I am Batman" a lot - Batman Returns had just come out.

I bet she likes something about the way the hangers look. It's a little like art to her, I think, or it is, if it's anything like the way I look at shiny coins and glass beads, turning them around so they catch the light, or rubbing them, or holding them very tightly... It doesn't really have any obvious meaning beyond just the experience of it, like looking at fireworks or watching a sunset. Just because hangers are mundane items does not mean they cannot be beautiful!

Have you consulted a pediatric nutritionist? Your pediatrician could probably refer you. The danger of nutrient deficiency with restrictive diets is very great, and cutting out only the exact things she is sensitive to, and no more than that, is oh-so-important! At two, she needs every nutritional advantage she can get, and a nutritionist can give you advice on how to re-balance her diet properly.

Last edited by Callista on 17 Sep 2008, 11:38 pm, edited 2 times in total.

It's so wonderful she has a dad like you!

Very good advice.

Funny that the hangers got brought up, considering that the other day in a motel I was watching them and twirling them, some metal hangers in the closet.