Mom's with Experience with Aspergers, Some Advice Please.

Let her know ahead of time what the schedule for the day is, give her warnings about changes in activities (For example, "We're going to leave in 10 minutes." Give her time to adjust to things.)

Give her a place she can be "alone" or left alone, without too much stimulation, so she has time to cool down, if she is getting too stimulated. Ask her how SHE thinks she should be treated.... she may have some pretty good insight about what she needs, and will appreciate the fact that you are trying to let her make some decisions about her needs.

What do you know about her as an individual? When you have met one person with asperger, you have met one person with asperger. At age 13, kids with asperger frequently have comorbid mood issues, so the bipolar may not be far off from some of the behavior you see, but there is no way to tell what will work for her just as a child with asperger.

Does she have an intense area of interest? How does this manefest? Can she stand to eat things that are diverse, or does she need to have control over those kinds of details to be comfortable and feel order? Some do, some do not.

What are her lagnague issues? Yes, these children have very good verbal skills, but if you were to spend time with mine, you would need to know that she has little depth to her understanding of what she says. She seems much more intelegent than she is, so you need to know what the limitations are in that area so that you can set her up for sucess. Has she learned some of the nonverbal aspects of speech by wrote, or does she still miss cue when people use euphamism and sarcasm?

Also, this is one area that gets adults who think that they if they understand how to handle them, it will be fine, but be aware of the trap of expecting them to have any gratetude for all the times you let something slide that drives you crazy, because if you let it go once, and then at some poin in the week let lose about having done this, and that, and that, and the other...and now she treats you like this? It will fly right over her head. They don't think like that. Almost every expereince they have is novel, there is little forethought or real use of past experience that goes into thier behavior. Yes, they can TELL you what they were supposed to do, that is NOT the point, they cannot sequence this into their behavior without lenghty practice and theraputic interventions...somtimes years in the making. A week may be just enough to make you a taste, but it will not likely help her much.

If you are looking for instructions about how to make her happy, then ask her what that is, and see that it happens her way, but if her way does not include seeing grandma, there is not way for you to both make her happy, and do what you want to do. There certainly are ways to get through it with distraction, so what ever it is that she can use to occupy herself in times that things are not her way, you would be best to provide them.

If there are going to be fun things that this girl really wants to do, be prepared for two things. First, that she will ask, and ask, and ask when it will happen and if you are going there now. Even with my almost 19 year old aspie, there are just sometimes that we don't tell her about what is going to happen. She will still love it if she does not kow you are going to Disney until you drive up, but she may drive you nuts, and have a melt down days before if she knows that what she wants is coming, and she cannot have it right now. Sometimes, they just cannot stand to leave the fun. Be prepaired for this. No matter how long you stay, if that is what they like, stopping is the end of the world. This is where the "ungrateful" tends to come in...after a week of ignoring rudness, giving her breaks on not doing what you said, or always eating at Denny's because she can get what she wants...you get really angry after 12 hours of doing what she wanted to do...and you are ready to go, and she ptiches a two year old fit. Trust me, there may be a scenerio like this. Remember what I have writen. She does not understand the world like that. She has no "account balance" in terms of relationships. There is very little give, and quite a lot of take, and at 13, even with substiantial therapy, this idea may still be only theoretical for her. Just because any child on the spectrum can repeat what the last therapist told them about how they should feel, does not mean that they feel that way yet.

Firm, not military style firm, but firm. You usually cannot insult a child with asperger by telling them that they did not use deoderant, or that what they just said was inapproriate, they don't care. I would also say, do not ask them if they did all the things that they should have done for personal care. Check. If you ask, they will say "yes" and in a car is the last place you want to discover they lied. Yes, kids on the spectrum can lie, and do, all the time about things like this. They do not see the point, and they do not think that you will smell the point...so don't ask unless you are willing to accept what they said if they lie...personal care is not the place to test it out.

I would find out fom Mom and Dad if she has a neuropsychological evaluation with behavioral recomendations. That would be very helpful. If not, Toni robbins from Alstrailia is the Asperger guru. Read some of his stuff.

M.

Just a quick thought, if this child IS on a special diet, then follow it, but it is not your business to give her new things that will fix her or change her diet. That is not standard care anyway, I have two on the specrtum and I can count on my fingers while wearing mittens how many times diet has come into the converstaion about their care (never, like never ever.)

You are best to find out what she eats, and stick to that. It may be restrictive, it may not be an issue. The point is, find out what it is, because depending on how ridgid she is, eating will be one of the most cut and dry areas where you can see that she feels comfortable. This would not be the time to try something new, unless she is willing, and you have a plan "B" if it does not work out. I have one who used to be very picky, everythingplain, very restrictive, but she is much easier to feed now, but she goes to school at a school for kids with ASD and one of her friends will eat Chinese food, and Wendy's, but could eat Chinese at every single meal if he could. He will eat a great variety off the Chinese menu, but it does not translate into eating it in another food family. That is where he is ridgid. If you find that your neice is like this, your week with her would not be the time to drop the MSG, which is not your place anyway. Feed her the way she is accostomed to being fed, unless she is not too picky about what she eats. Food is just not the place to rock this boat. MR

I know a 13 year old girl who has violent outbursts if she feels cornered or like everyone is staring at her. When adults discipline her in front of others, she freaks out worse. I would quietly correct her so she doesn't feel persecuted. I would not be "on her" all the time.

I would try to let her get enough rest and to eat as well as possible. I would give her a heads up about what you are going to be doing that day. I would allow her time by herself if she needs it.

It is great you are taking her. She will probally have the time of her life.

My husband teaches special ed and he says schedules and structure are very important so I would let her know in advance what to expect, but really try to stick to it. See what you can do to incorporate as much of her daily routine into things...like breakfast at the same time and some of her favorite foods, etc. Good luck and have a great time!

Hello,
I am the step-mother of a 13 year old Asperger boy. Children with Asperger's don't understand what we call Social Ques. Like body language, or facial expressions. They also tend to not understand personal boundaries and are usually very loud. The bigest thing with Asperger children is consistency. They thrive on routine. They thrive on being told what the day holds for them and then sticking with that. Anything new and unfamiliar to Asperger children is very scary and results in a 13-year old temper tantrum. Asperger children also process information a lot different than the rest of us. The tend to get stuck on subjects and not have the ability to move on. This requires patience and punishment isn't usually the answer. Removing them from a situation when a tantrum starts and allowing the space to cool of usually works very well. They also do very well on a number system. Such as when their voice gets loud. 1 is a whisper and 5 is an outside voice. Telling them they need to be a 3 or telling them they are a 5 allows them to understand what being to loud is. Medication call also help. The biggest thing is to encourage her parents to get her into counseling and support groups. There are a lot of great ones around. If you run into any specific "events" during your week, please feel free to post again for advice.

Check out web sites like Autisim Speaks and see what they recommend. Routine is important and change is difficult. Watch her diet carefully no MSG or yorgurt (silk is okay it's soy yorgurt). Both can make a child who falls into the Autisim spectrum violent.
Read--read --read
Take heart and remember that both Bill Gates and Donald Trump have Aspergers.

This is what comes of listening to experts and not your own heart. She is intelligent. Introduce her to music of all kinds. Ask her what she would like. She has had very little opportunity to make her own decisions. If it isn't a reasonable choice just say so.
I cannot say enough terrible stuff about this TOUGH love solution. It does not work. It was a fad that saw lots of suicides and estrangments and led to future bad decision making since all decisions had already been made for the kid.
Listen to her she needs to be heard. You are a new set of ears who has not been involved in the torture of this young lady. Treat her as if she were your daughter a few years older.
You remember what it was like to be a teenager. She will respond to being liked and cared for.
What is the matter with your relatives do they not know that the best place for training a child with Aspergers or Autism is right here in Eugene at the U of O. People come here from the world over just to get the best for their kids.
My niece has Aspergers so hang on to you patience and sense of humor.
For the rest of you reading this post throw out all those tough love and CIO books. Do not give them to anyone. They are only good for land fill.

As a mom who has a child on the spectrum, the best thing you can do for your neice is be tolerant. I am not saying let her get away with everything, but be tolerant that some things may be difficult for her. And everyone eles's advice is great. Read!