Questions about a New Asperger Syndrome Diagnosis

I’ve known for a long time that my precious little boy was different than other kids his age. His preschool teachers had us set up an evaluation last December. He had a separate OT/PT evaluation that resulted in recommendations for both occupational and physical therapy. And we made that recommended appointment with his pediatrician for a more thorough evaluation. We’re lucky that our pediatrician’s office also houses a Developmental Behavioral Pediatrics office with two of the same doctors. TJ saw one of them in May.

Tonight was the parents meeting to discuss the doctor’s findings. He confirmed the need for TJ’s physical therapy, which we already knew. He also confirmed what I’ve suspected for months now, that TJ has Asperger Syndrome.

Nothing has really changed. TJ is still my sweet little boy – very bright and in love with life. But now we have a diagnosis to back up my concerns for some aspects of his social behavior that didn’t seem quite right. The doctor pointed out some of the positive aspects of Asperger’s so that we could remember that it’s not just about the limitations and challenges.

Now I just have questions about how to help TJ cope with the world. I need to find some other parents of “Aspies” to find out some of the things that worked for them when trying to deal with specific behaviors.

  • Lack of eye contact. We’ve been making him look us in the eye when we have to scold or redirect him. Should we continue to make him look at us first?
  • Mealtime problems. When we have Sunday dinner at my parents’ house, TJ often decides he doesn’t want to eat with us and opts for playing in the living room until he decides he’s hungry. (Including him, there are generally eight of us at the dinner table.) Is he exercising a coping skill this way, or should we be trying to get him to sit with us to encourage social interaction?
  • Temper tantrums and whining. In preschool, they remind the kids to use their “big boy (or girl) voice.” No matter how much we’ve been reminding him to use his big boy voice, TJ’s tantrums and whining have been getting worse. At 5:30 this morning in the middle of a TJ tantrum, Tom decided to tell him that he couldn’t hear/understand him unless he used his big boy voice. This seemed to work. I’m wondering what we should do when there’s a full-blown tantrum and a big boy voice request just doesn’t cut it.
  • Time outs. Are time outs the best form of discipline for a kid with Asperger’s? We make him sit backwards on the sofa for three minutes. He hates it. But maybe it helps because it keeps stimulation to a minimum with him staring at the couch cushions. Either that or it’s torture. I just don’t know.
  • Normal life. I don’t want TJ to think he has anything wrong with him. But at some point, he may ask why he goes to therapy and why Mommy and Daddy have to tell their friends to be more patient with him. What do we say?

I have more questions, of course, but those are at the top of my mind right now.

Christina Gleason (973 Posts)

That’s me: Christina Gleason. I’m a professional copywriter, editor, and blogger. My company is called Phenomenal Content. (Hire me!) I'm a multiply disabled autistic woman doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and select types of gaming, including Twitch Sings and Plants vs Zombies 2. I hate vegetables. I have an intense phone phobia, so I’ll happily conduct business over email or IM instead.


Comments

  1. Having some aspergic tendencies myself I feel I can actually answer this one or at least come close.

    Forcing eye contact is good, don’t let him retreat into a shell and shun human contact. He’ll dislike having to interact with people but it’ll be good for him.

    As for discipline, if his attention span isn’t very good then you need an immediate and swift response to any misbehaving or he simply won’t connect the two. I was smacked as a child and I’m pretty sure it did me good.

    My Mum had to deal with me having zero social graces and if you want I can ask her how she did it, I know that she did sit down with me and ask me what I thought people meant when they said certain things and then told me what they actually meant. As you can imagine I frequently took them literally when I was not meant to.

  2. My 9 yr old and I both have AS, as do several others in our family, diagnosed and undiagnosed.

    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.

  3. Thank you both. You’ve given me some insight I didn’t have before!

    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.

  4. Christina, I have a child who is high-functioning Autistic (on the same spectrum as Aspergers). I wish I had answers to all your questions, but maybe I can relate a few things that worked for us.

    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.

  5. Sounds like you’ve gotten some great insight. I just want to add that I have worked (as has most of my family) with people with autism (on many different ends of the spectrum) for years. I firmly believe that time out works when it is immediate so that it can be associated with the behavior. If for no other reason than it gives the person a chance to calm down so that they can interact approriately – also, I think that it helps to not reinforce the negative behavior and gives YOU a chance to breath.

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

  6. Bernadette says

    You are really lucky that TJ was able to be diagnosed so young. It took several years, and a few scary incidents, before my son was formally diagnosed with Asperger’s at age 9. Getting the diagnosis was slightly scary but also a major relief. Once I had a name for what was going on, it was so much easier to explain and address his issues – especially with the schools.

    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.

  7. Wow – what great support you’ve had here already! This is really amazing. I was just communicating with my online class (psych major at Liberty University) and chose Asberger’s as a research topic for my current class.

    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?

  8. Debbie,

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

  9. Wow- great questions. Unfortunately, there are no clear answers- I’ll let you know what has and hasn’t worked for us! It’s such a struggle, and you just have to stay focused on your goal to help him be as happy and healthy as possible. It takes so much patience and flexibility, you learn as much as they do along the way.

    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.

  10. Hey Christina

    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.

  11. jo warden says

    hi i have asked my son (aspie of 18) about eye contact . He says he finds it easier now he is older but still feels uncomfortable with strangers, people he is close to or knows well is ok . I never forced the issue with him when he was younger, he just slowly got used to doing it . I have always been open and honest with him about his aspergers but i think it was easier that he was diagnosed late (9) as its easier to converse and discuss when they are that much more mature. (Calum has mild AS). I must admit i re defined my role in his life and totally changed my way of parenting having researched apsergers. I was his friend and then his mum, it was hard when it came to discipline but it made it easier for him to talk about his fears . feelings, problems , frustrations and we now have a very close relationship because of this . I know some people dont agree with this approach but it has worked for us and he has still been taught manners, respect, etc and is a very polite young man !! thats the tip of my experience with AS, and Calum says ask away he will always be honest with you (as always )!! hope it helps a little , jo

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