As the mom of two wonderful guys with Aspies, and the wife of another, here’s my thoughts on your questions:

Eye contact can be really REALLY uncomfortable for a person living with Asperger’s, and yet it’s a very important part of communication. I would encourage it, but not force it. When he’s older, you can push it a little harder.

Crowds are also really disconcerting for the child with Asperger’s (and the adult!). Yes, TJ is using a coping skill. I would, again, ENCOURAGE him to try to sit with the family for, say, however many bites as years he is. (5 years old, five bites) and work upward that way.

With tantrums, when all else fails, pick the little guy up and remove him from the area. I’ve done this with a boy who weighed 70 pounds. Wasn’t fun, but it was what was needed at the time. As TJ learns to cope, the tantrums will slowly go (mostly!) away.

We use room time outs mostly, even though there is stimulation in their room, because removing the child from the situation is more effective than punishing him, at least for us. You need to figure out what your main goal is: to cease the behavior, or to punish it. Sometimes punishing is definitely called for, sometimes it isn’t. It varies for each family and each situation. Our kids are now in their teens and have learned to give THEMSELVES a time out before they end up in trouble. For us, that is perfect.

As to what to say, tell him, you have something called Asperger’s Syndrome. This doesn’t mean that you’re stupid or that you’re weird, it just means that you see the world a little differently from some other folks, and you sometimes react differently. It means that you’ll need to work a little harder to fit in with other people, but you will be glad you did the work!

There’s also some great kids books out there for Aspie kids. I’ll look for the titles.

Welcome to the adventure, and it IS an adventure! It’s going to be work, but, like I said above: you’ll be glad you did it. You’ll learn to be even more loving, giving, and compassionate than you already are, and every time TJ makes a little progress you’ll feel an incredible joy.

You know where to find me if you have any other questions.

Lack of Eye Contact: My advise would be to not limit forced eye contact to discipline or direction only. This may be completely wrong, but I always make sure CJ knows that I understand his grievances and irrational fears. I know it physically hurts him to do certain things other people take for granted. As TJ gets older, it will be easier for him to learn when he is required to make eye contact, and when he can relax. Taking these lessons slow & gently always works best for us.

Meal Times: Oh no, this is our biggest struggle. My son is hypersensitive to smells and textures of food. He gags easily and acts frightened when new entrees appear on the table. Thanksgiving is the most terrible day of year– he even wrote a poem about his grief over Thanksgiving. The smells absolutely make him sick and the bones sticking out of the turkey are horrifying. Anyway, we found that yes, he needed to be with us at the table, but he needed to take it slow and on his own terms.
I think TJ only joining you at the table when he is ready to eat is fine. At age three, many kids don’t realize the value in social time at the table. I would just enjoy your time eating socially and he will see how much fun your having and eventually want to join you at the table. I believe the more we try to control the further they regress, so we need to always pick our battles wisely. If you believe he needs to learn to sit still, I would start with a timer and reward him for three minutes at first and slowly work up to the desired time period. My son, like most Aspies, responds well to rewards.

Temper tantrums and whining: What your doing with the “big boy voice” is awesome. I love that he wants you to hear/understand him enough to alter his voice and behavior. If that stops working, I would again turn to a chart and reward system. My son loved to see stars on a chart that mark everyday he didn’t whine or behave inappropriately. At the end of the week, he used to get a milkshake if he had earned enough stars. Aspie kids love to reason, they love strict rules and collecting points, stars, cards, etc. We can capitalize on this in order to get them to behave better. Just don’t overuse this system or it is not as effective. Also, I found that verbal rewards don’t work as well as material rewards.

Time Outs: I believe it’s always good to remove yourself or your child from a tense situation until everyone is calm and ready to reason. With my neurotypical children I made them sit in a chair, but with CJ, I let him escape to a safe place and get him when I think he is ready to listen and reason. A time out is not supposed to be a punishment, but a time to calm down and reflect. People can use time out’s all their lives, but not if they think it’s a punishment.

Normal life: I’m so happy you brought this up, because this is such a great question and one that I would love to address with all of the parents out there that are afraid to diagnose their children because of the stigma of being labeled.
Okay, I strongly believe that children with Asperger’s need to know for several reasons. They realize something is not right at a young age– they KNOW, they can’t control it, but they are fully aware. There have been several studies to confirm this, and just talk with an adult with Asperger’s and they will confirm that they always knew they were different. But they don’ t have to be alone and in the dark. They can read about Asperger’s and understand that it’s not terrible at all. If people treat this like a disease, it will eat at you and your child like a disease. To be able to see the world in a different light is a gift, and like many gifts, it comes with baggage and struggle. Mastering social norms isn’t easy for them, but spotting inconsistencies, disingenuous behavior, and patterns comes naturally for most Aspies. Without Asperger’s, physics and computer science would be hurting. They need to be proud of who they are and the talents they possess, and a label helps them know they fit in to a world that is exciting a great.

The last thing I really want to tell you is that it gets easier! Age three is difficult, heartbreaking at times. You are lucky TJ was diagnosed, learning about Asperger’s and understanding will make your life together easier. By age ten you guys will have worked out a routine, you’ll have taught him appropriate social behavior, and you will have very few concerns.

Just have fun as much as you can- PLAY as much as you can– get on your hands and knees and enter his world as much as possible and he, in return, will eventually enter yours as much as he can.

I would spoil a kid who had leukemia, too! Our physician didn’t recommend any support groups, but he did suggest looking for one.

My DH (who is a licensed therapist) suspects my nephew (who also has leukemia) has Asberger’s and its really difficult because family dynamics prevent us from sharing our concerns. We are really concerned for my nephew. Considering the complications of his physical disease, his apparent neurological condition is going unnoticed. There is a history of autism and other developmental disorders in my SIL’s family, and developmental delays in my family. He appears to be “spoiled” because his parents give him anything he wants considering his leukemia. It’s difficult to know what to do.

I pray for you – thank you for being so vulnerable and open here and sharing – and for the other commenters on this post.

Was your physician able to provide any information on support groups for you – either local or online?

There are two books I recommend you keep on hand (both of which I’ve bought more than once since they have a habit of disappearing). They are both short, simple introductions to Asperger’s for teachers, child care workers, relatives, and other people in TJ’s life who won’t spend as much time as you will learning about his needs. The first (cutest & shortest) is All Cats Have Asperger Syndrome by Kathy Hoopmann. The second, What Autism Means to Me, is by Lynne Banki and her son Caspian (who has Asperger’s). It includes parents’, peers’, teachers’ & Caspian’s views about some of his behaviors and tendencies. I hope you find these as useful as I did.

Make sure you take care of yourself and build your own social support system (advice I must admit I don’t always follow). Thanks to some strong advocacy work, there are a lot more resources available for both of you these days.

Good luck. TJ is very lucky to have parents that are so involved and concernec about his well-being.

PLEASE UNDERSTAND I am not an expert. Just a parent.

I used to insist on my son looking me in the eye when I speak to him. Then I learned over-stimulation is an issue for him. This happened to be after he became verbal, fortunately, because I was able to ask him: “Do you not look me in the eye when I’m talking to you because it’s hard to listen and watch at the same time?” He said, “Yes.”

Ever since then I have not made him do that and one day he said, “Thanks for not making me look at you when you are talking. It makes it easier for me.” (THAT statement in and of itself was evidence of a HUGE leap forward in his social skills!).

Folks on the autism/PDD spectrum are all different. For example mine has issues with the noise of lawnmowers and the sensation of broccoli in his mouth. He can’t STAND either, but he LOVES the feel of water running over his hands.

Temper tantrums: before ours was diagnosed he threw a LOT of temper tantrums. Especially in restaurants. Now I realize it was because of over-stimulation and not being stubborn, or what have you. He has a place at home and at school where he can “chill out”. It is a place where it is quiet, he is able to listen to music, read, or just lay/sit there. The important thing is to remove as much visual/aural stimulation from him as possible and put things in this place that he finds soothing. Maybe a “chill out” place for TJ?

I also know that for a lot of “Aspies” (I share several of those traits, by the way), it takes a LOT of energy to be around people in an intimate setting such as the dinner table when it is more than just immediate family. I don’t know if this is the case with TJ or not. Possibly, give him some “chill down” time before dinner, while at the same letting him know that once he is chilled down dinner will be ready and you would like him to come to the table. For our son, we have set a timer, explained what is expected of him when the timer dings and that has worked very well.

Time outs didn’t work for us until we recognized this issue of overstimulation and he had that safe place. Then the frequency of true time outs drastically diminished. And with therapy he learned to deal with his frustration and anger when we did have to give him time outs.

I wish I could write so much more, but I am pressed for time. I hope these things help some, or at least will spark some ideas. Getting him into therapy is the best thing you could do for him.

By the way, my not-so-little-anymore Spencer is the most beautiful treasure in my life and his autism is one of the biggest reasons why. And he still doesn’t know he has Autism. We are going to work with the therapist on how to tell him about it because soon we will be dealing with dating issues (and he is planning on getting a Red Mustang Cobra for his 16th birthday).

If I’ve rambled, made spelling or grammatical errors, please forgive me. I’m working on a tight deadline at work, but wanted to respond ASAP with some things we have found worked for us in a similar situation.

Carrie, I like your suggestion to have him look at my face, but not necessarily my eyes. I’d never considered that eyes specifically could be something that would freak him out.

Eye contact: Don’t force it. Please don’t force it. I have my son look at my face when we’re speaking (he can look at my left ear for all I care), but never force eye contact. The eyes freak me out. I imagine it’s the same for him.

Mealtime: We have Max sit with us and eat. At a big family gathering like you describe, I don’t make him. He can’t handle it. I encourage him to sit w/ us for a few minutes, try to get him to eat, but I don’t force it.

Tantrums/Meltdowns & whining: I think your approach sounds reasonable. We do the same thing.

Time Out: Our doc encourages no physical discipline (no spankings) because of Max’s aggression, so we do time outs and removal of privileges (video games, tv, bike). You have to find what’s going to work best for TJ and go with that.

Normal life: Tell him the truth. His brain works differently. The doctor appts and therapies are to help him. Don’t ever hide the truth from him.