Keep going back and forth about my son. Looong, sorry.

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I have a son 12 who may or may not have AS. With a strong history of autism spectrum in the family and some of his characteristics it should almost be a no brainer but I still have a few nagging doubts.

E was born after a very difficult labor and was extremely anxious right from the beginning. He cried inconsolably for at least two hours after his birth. He was an anxious fretful baby who was often hard to soothe. He only fell asleep while being breast fed and frequently needed rocking to be soothed. As a toddler he was very fearful of other children and often cried when they approached him. If I took him and his sister to a playground he would only stay if there were no other kids around and asked to leave if any came. He eventually and gradually got used to other kids by the time he was 3 1/2 - 4 years old so that he would play along side them but not too close. By the time he was 4 years old he had ground all his teeth down almost to the gum line. Thank goodness for his second set of teeth. He refused all food except breast milk once he was past 6 months old and when solid feeding usually begins.

He gagged and spit out all baby food whether commercially made or home made. He seemed disgusted with it. Didn't matter what it was fruit or vegetable, I was lucky to get one spoonfull a day into him. He went from the 85th%ile birthweight to 12th%ile by one year. The only solid food he liked until about two years was McDonalds fries which I introduced when he was 11months old. This dislike for food persisted through his toddler years. He had a few foods that he would like then drop a few. Anyone who said toddlers will not starve themselves didn't know my son. I was constantly introducing new foods in a variety of different ways (all the things they tell you to do with picky eaters) Everyone, (except my inlaws who worry constantly), including doctors told me there was absolutely nothing to worry about. He is still quite picky about eating especially regarding food texture and appearance. Nothing can be "wet" looking so no gravy or sauces of any type. Food cannot be mixed,(no soup or stew etc.) can or touch. Up until quite recently he ate hotdogs and hamburgers separate from the buns. Also telling him to eat what he is given or nothing has never been an option because he will choose nothing. He is quite thin although I have seen skinner kids but not many.



He reached all the milestones, sitting, walking, talking at typical times however he couldn't run until he was over 3 years old and was 8 before he could ride a bike. He is not crazy about sports due to his slight physical akwardness but he is participating more now. He has a fantastic gym teacher who gets all kids involved.

He has had specific interests which he gets intensely involved in. When he was three it was power rangers, watching the movies over and over. When he outgrew that he had a few other interests until age 5 he became fascinated with World War I and WWII. which he is still intensely interested. He has read numerous books and can tell you about any battle, where and when it was fought etc. as well as all the weapons involved. He'll monologue as long as anyone lets him. He has been teased by other kids in his class about being obsessed with war and gets called a war freak. I have told him to not talk so much about it at school. He is also an avid gamer with most of his games having war themes. He has talked about becoming a game designer when he grows up. We support that whole heartedly!!

Up until about a year ago I didn't consider aspergers syndrome because I was a very shy awkward child and I suppose I was just waiting for him to out grow all this stuff. The thing that tipped me off to possible AS was his poor handwriting. He has always had dreadful printing. This I always hoped would improve, which it has, but very slowly. I have seriously seen neater printing from first graders. His printing is very slow if it is to be legible and very messy when he doesn't take a great deal of time. Needless to say it is very tedious for him and he avoids it. He types all of his assignments at home and some at school when he can get to a computer. I was doing all sorts of research on dysgraphia when I found that it is very common among aspie kids. Once I heard that and did more reasearch on AS the other stuff began to fall into place.

The only thing is that I have brought all these things to the attention of his teachers over the years and they keep dismissing my concerns because he is very verbal, has a large vocabulary for his age, tremendous memory and gets for the most part very good grades although he struggles a little too much in math in my opinion. So from their standpoint "what's the problem?" They think that I am an overbearing mother who is expecting too much of him and of the school. I am not asking for a whole lot just if they would provide hand outs with notes already on them so that he doesn't get so bogged down with writing. They are the ones who complain that he has trouble keeping up, is messy and disorganized and (sometimes) has trouble finishing assignments in class. Another reason that they dismiss my concerns is that he is a very obedient kind respectful student. He relates well to adults and often engages them in conversations. He is described as very bright and charming. He does have more friends now than previously mostly because he has learned to take other kids interests into account when he is socializing and not just talk about his interests. He actually got invited to a party last weekend which he really enjoyed.

I guess the whole point of this lenghty ramble is should I get a formal assessment of him or just keep plugging away? I would love to get the handwriting thing straightened around. The O.T. associated with the school looked at his writing, without actually observing him write, and declared his handwriting to be just fine. I'll try to scan an example and set up a link to it somehow. I thought her assessment was ridiculous. Also they won't give him any modifications unless he is coded. The waiting list for the school psychologists is very long and I don't want it to be for nothing. An independant assessment is very expensive but worth it if I can manage to save up the money. I don't want him labled just for the sake of a label. I do know that for many kids with AS life challenges can be overwhelming and many end up discouraged working at dead end jobs if they are employed at all. Sorry to sound so negative with this last point but I have seen it with members of my extended family.

Sorry for this long rambling post. I guess it has been in a way a chance for me to sort out some thoughts as well as get some feedback from you. Thank you if you got this far.

Do you feel like your son is getting enough help and support? It sounds like, with the exception of a few areas, both you and his teachers seem to think he's doing ok. Maybe consider making a list of the things where he does struggle, asking the school psych/counselor/special ed team what they think, and deciding along with them what kind of support he needs and whether or not a formal assessment would accomplish that.

Sounds to me like you're hung up on the diagnosis part. Ask yourself - if he came out as not meeting criteria for ASD, how would you go about finding support for his needs?

Best wishes.

If it seems to you that your son has developed pretty good socializing skills, he may not be AS, but obviously has some sensory difficulties, possibly non-verbal learning disorder (NLD). In any case, an evaluation would help delineate his specific deficits, and enable properly targeted training and support.

If you are in the US there are laws that aply in regards to testing after you put in a request in wrighting they only have so much time before they are in breach of those laws covered in the Americans With Disablitys Act. This act was tweeked in the last few you so the time frame might have changed so your'll need to look it up. It helps to go in quoting it. You might want to do it threw the school borde in order to make a big impact.

but with his good progress with social skills, it may be that he simply has severe sensory issues and possible learning disability. Individuals with LD often have social skill delays but they are not as severe as with Asperger's syndrome. Then again, a person may qualify for a diagnosis from a psychologist but still not qualify for services under Autism in the school because the needs are not severe enough. He could still benefit from Section 504 services, though, if he had a clinical diagnosis. The school is not required to treat issues with feeding, beyond following the protocol set by a feeding clinic.

Thank you all for your comments and encouragement. You have been a great help. I will give your comments much thought and consideration. I have learned much today.