Please help me with my aspie dd6

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Hello, I am new to this forum. I am NT but grew up with a (still undiagnosed) brother with Asperger's. Only now that I am starting to realize what AS is do I realize that my brother is an aspie also. My brother is very angry and can be abusive to others and I dearly want to help my dd so that she does not have the same issues as my brother.

My dd has been evaluated for Autism three times. When she was 2 she was non verbal and missed several milestones and her pediatrician referred us to a Social Worker for an eval. The social worker spent 3 hours with my dd and stated she was not autistic because, although she did not point or have words, she was attempting to communicate and enjoyed social interaction. My dd continued to have sensory problems and was referred again for the ADOS when she was 4 and I was told she was not on the spectrum but that she had sensory processing disorder, developmental coordination disorder, and anxiety disorder. They treated her with OT and Paxil. Two years later her social anxiety is debilitating. She has low frustration tolerance, is extremely temperamental, is a perfectionist, and has trouble getting along with her peers. We were referred to a neuropsych 6 months ago and now after several evaluations she has been diagnosed as AS.

As a mother who didn't know anything about AS, I actually did my own "social stories" without knowing technically what they were called. I also do social skills coaching whenever my dd plays with peers. However, I see the same anger control issues as I did with my brother and this has me very worried. When my dd becomes overstimulated or frustrated (which can't always be controlled) she becomes very angry, aggressive and abusive to herself and others. After the anger has subsided she tells me she can't control herself and that "her brain feels scratched". I have tried teaching her to deep breathe to no avail, she cannot pull herself from the mindset when it occurs. I have tried deep pressure which only helps if the outburst has not reached "the point of no return". I have also tried numerous negative consequences to her outbursts that never helped. I offer positive rewards for controlling her anger which haven't worked. I've tried Collaborative Problem Solving which works if she is not in the fight or flight state but once she reaches that certain point, it's almost primal, animalistic behavior.

I really need to find a way to teach her to manage the anger or to express it more constructively. Anyone else have any ideas or successes in this area? She dislikes group athletics or structured exercise and does get plenty of rough and tumble play each day. My dd is very, very smart and tends to relate on an intellectual level but has problems with her emotions.

Thanks.

Does she or has she ever kept a diary? It may help her vent the feelings if she can hold on to them until she gets to the paper?

Or perhaps a pillow to box when anxiety strikes?

I don't think I've ever experienced severe anger/anxiety in the manner that your daughter has but when I was younger hitting a pillow helped (or throwing the pillow against a wall a few times) and when I got older the diary helped.

Have you asked her or have you seen what has happened pre-meltdown?

I hope that what has helped me can help your daughter, if it doesn't though, there are many adults on the spectrum here (as well as caring relatives and friends of same) and some may have more helpfull advice than me.

Thanks for your reply. She doesn't keep a diary. Although she can read she is not yet writing. Handwriting is very difficult for her.

What usually leads to the meltdowns is something happening outside of her control which she doesn't want to happen. For example, a friend or relative leaving before she's had the ability to prepare for the separation. People becoming mad at her for her inflexibility and leaving is definitely a trigger. At first I tried to control these separations by giving her notice, but when a social interaction breaks down and the natural consequence occurs of them leaving I almost feel as if that is a learning experience that she must endure. However, it is even harder for me to endure the tantrums that follow.

One day a friend's mother came to pick him up early. She ran upon him as he was leaving and hit him in the back (I do not know if this was accidental or purposeful). I immediately separated them and because she was unable to say goodbye she began to unravel. She began hitting herself, saying horrible things and when I took her to her room (so the neighbors didn't call the police or something-she was really out of control) she began to pound on the windows until they broke.

These episodes are occurring less and less as she becomes older, but when they occur it is shattering to me. I spend a lot of time and energy trying to diffuse the tantrums before they occur but sometimes they are impossible to predict. It is hard for me because when these things occur she becomes glazed over and like I said, animalistic. I try to teach frustration tolerance by playing games and when she loses helping her maintain control. She is a perfectionist and when things don't go as they should in her mind or if people or situations become unpredictable she has a lot of problems maintaining control.

You've said that she doesn't like group athletics or structured exercise, what does this mean exactly? The reason that I ask is becuase I found martial arts helpful as regards my own, smaller, anger issues but if she doesn't like that sort of thing it will not help at all.

A pillow or punch ball/bag may help. She'd be able to hit it without damage to herself or objects. I can understand that you'd be distressed by this, you know that these meltdowns are being caused by her feeling hurt/distressed and also there's the physical pain that she may cause herself that would cause you to worry.

I did go to counciling to get help in figuring out my emotions, she's too young yet for it but it may help in later life (teen or early twenties). Just to say though, your daughter is a different person than your brother. The meltdowns are becoming less and over time she will understand things better.

I just had a silly idea, perhaps have a 'unpredictable' day game. Where the day is a little unplanned and slightly random things happen (ex. bye/hi being reversed)? Where you ask her if she wants to play 'random day' with you? And having a word that she can say when she starts to feel edgy? Maybe it could help her get used to things not happening as she expects? Please forgive me if it sounds like a bad idea.

Good luck. I hope this has been somewhat helpful.

I had her in gymnastics and although she was very good at it she started to refuse to go. I've tried various other group sports and always the same happens, she will enjoy it for a while and then it becomes anxious refusal to participate. She doesn't like water so swimming is out but martial arts may be something she would like. I'll check into a trial class nearby.

Something you said about my dd not being exactly like my brother does make sense. I guess I fear my dd's future based on my brother's experience. And that's not to say that my brother is not exceptionally gifted and a blessing to this world but he has struggles with social interaction and his emotions. My mother was told my brother was mentally ret*d in school and since then has been evaluated with a very high IQ and has a very high paying job in the industrial design field. So I see the success that can happen, I just want to intervene on the emotional outbursts early on.

When my dd becomes enraged she refuses direction. That is why I don't know if the hitting of the pillow would work. Perhaps if I work with her when she is not angry and let her know it is ok to go and hit the pillow instead of herself or someone else perhaps she would be able to remember that in the rage or maybe not?

The best idea in your post is the unpredictable game! I love that idea. I'll have to brainstorm on ways to integrate non-logical things we could do to desensitize her. I really like the idea. Thanks so much!

First off, welcome to the forums.

As for your daughter. I am afraid your observations are correct. Once your daughter starts her melt down (that is what they are called) her higher brain functions stop working properly. In order to explain this, you have to understand what a meltdown is. Allow me to explain it as simply as possible. In a brain the nerve cells send signals to other nerve cells. The nerve cells then process this information, and then send it along to other neurons. That is the human thought process. For example, when something bothersome happens, the brain sends out frustration signals. This is a couple hundred nerve cells firing.

In a normal person, this signal is processed, and quickly dies out. Simply put, the frustration signal may be 300 (making this number up) electrical impulses. The first set of nerve cells receive this, and send out 200 signals. The next set of cells receive this and send out 120 signals, then the next set of nerve cells gives out 80 signals, then 50 signals, etc. etc. As you can see, for normal people, this signal dies out quickly. Thus the total extent of the frustration is limited. Only a small portion of the brain is affected by this signal because it dies out before it can spread very far. This allows the child to still maintain control of their cognitive functions, and devise a solution (remaining calm, saying goodbye, etc).

In an autistic person, the brain cells are much more closely connected. Autistic people have larger brains, with more connections between the cells, and also higher neurotransmitter levels. All that adds up to say that signals dont get lost easily. So in the same scenario, the frustration signal may be 300 electrical impulses. The cells receive this, and send out 290 signals. The next set of cells receive this and send out 280 signals, then the next set of nerve cells gives out 290 signals, then 275 signals, etc. etc. As you can see, the frustration signal does not die out quickly. It spreads throughout the entire brain, and quickly overwhelms the person's cognitive functions. When an autistic person has a severe meltdown, their brain is being overwhelmed by a very strong signal, and because the autistic brain is so overdeveloped and well connected, this signal takes a very long time to die down. This is why something as simple as a failing to say goodbye will cause major meltdowns. Obviously, the brain is much more complicated then I am explaining here, but I think you get the basic idea.

During this time, the person cannot think rationally because there is too much electrical signals being processed. It would be like trying to make a cell phone call in the middle of a rock concert, there is simply too much clutter to hear your cell phone clearly. So when your child is in the middle of a melt down, she is effectively unconscious. Best to treat her like he is sleep walking, her eyes may be open, and he may be responsive, but nobody is home. The only solution once the meltdown has started is to reduce the amount of incoming signals, and wait it out. Take your child to a dark, quiet room, and then wait for her to work it out of her system. The signal will die out eventually.

Keep in mind that this seclusion IS NOT and never should be punishment. Tell your daughter ahead of time that you are setting up a special calming place for her were he can go if he is feeling frustrated and overwhelmed. This place is her own private area where she can relax and calm down, and you will not bother her. If you do go with time outs (not my preferred method for a number of reasons) then this place where your daughter goes to calm down should not be her time out area. She should have her own little sanctuary to relax. This should be someplace she wants to go when she is overwhelmed, not something you drag her to by force. It is probably a good idea to stock this area with things that your child finds enjoyable and calming. Perhaps a favorite book, or stuffed animal. It might also be a good idea to give her something to take her anger out on, like a stuffed pillow or bean bad that she can punch.

I can assure you that these meltdowns are harder on her then they are on you. It isnt very fun watching your body collapse in tears crying while you try desperately to hold it together. A meltdown is pretty much the cognative portions of your brain having a seizure. And I can assure you that it is definitely NOT a pleasant experience for the person having the meltdown. So she has plenty of motivation to reduce the meltdowns as much as possible without you punishing her. I know that practical parental advice is to punish your children for acting up like that, but in reality she isnt in control once the meltdown starts. Punishing her would be like giving a ticket to a guy buried by an avalanche for 'disturbing the peace'.

If you are looking for more practical advice about HOW to prevent the meltdowns, then I suggest you have a talk with your daughter. Explain why her actions arent good, and that you want to help her find ways to avoid this problem. Try making a list of things with her that bother her. Basically all I can say is stick with the collaborative problem solving method. It wont help mid meltdown, but it will help her to avoid them more in the future. I wish I could tell you that there was some easy way to gain control of your emotions, but unfortunately there isnt. It is just something you have to work on day after day after day for the rest of your life.

There is a saying that I have heard, "You must control your emotions, or else they will control you." For a normal person this just means that they have to control their impulses or else they will run up a credit card bill. For an autistic person, the stakes are a bit higher. You either learn to control your emotions, or you wont be able to function in life. It isnt an easy task when your emotions are much stronger and more sudden then normal.

Beyond the collaborative problem solving, your best bet is to try and reduce the amount of anxiety and stress she is under because these are what cause the meltdown in the first place. Be aware that the more stressed out a person gets, the harder it is to remain calm and prevent the meltdown. Not getting to say goodbye might be the trigger for the meltdown, but it is often times just the straw that broke the camel's back. Odds are she is already partially overloaded and anxious, and that it just what sent her over the edge. Keep in mind, that at such a young age, meltdowns like these over simple things are to be expected. As she ages, with more support and help, she will be able to control herself better and prevent the meltdowns by herself before they occur. But until then, I am afraid that just ushering her off to her quiet spot is the best you can do.

I just hope it works. Good luck. You can msg me through wrong planet if you want.

Tracker is right. As always Although, I hate to think of anyone having to control their emotions to a large extent, but I know my son has taught himself that, to a degree. I guess its necessary, but it is a shame.

We've had lots of threads on here about meltdowns and you can search for them. It can be a fascinating read.

I suspect that this is more of a coping/sensory issue than it is of anger. While it manifests as anger, it isn't anger in the way we view it and, thus, the structure for preventing it is going to be a little different.

First up, you look for the triggers. You know some of them, like the leaving. Don't adopt a "she has to learn" attitude on this; honor her need. Once she gets comfortable with separations in her own way, she will eventually become better able to handle the surprise ones. But she has to learn within the comfort zone of adequate notice and expectation.

As for the triggers you are not yet aware of, note that AS children get more controlling the less comfortable they are with what is going on around them. It could be sensory, it could be social, and so on. When you see your daughter increase her need for control, you know she is stressed. Then go backwards and figure out what causes the stress. When you know the cause, you mitigate it.

In the younger ages I firmly believe in mitigating and avoiding stress factors. Expose her only to the ones you have little choice over, and work with her on coping mechanisms for dealing with them. Learning to prevent her own meltdowns is going to be a long, slow process for her. A large part of that will be learning what situations in life to simply avoid. It really is all about controlling the environment, not changing the child. Once I realized that, life in our family changed for the positive. I can't stress it enough. The difference was HUGE. And it did NOT cause my son to run from life; instead, it gave him time to develop the tools he needed to figure it all out and cope. Now he ventures out step by step into all sorts of things that he once was afraid of. His choice. His time. His way.

Side note, you mention trouble writing. Many AS have that. My son is very much haunted by it; he has severe hyperextension I believe is the word. His joints are loose. Which makes writing literally painful. Your daughter may need to work with an OT to strengthen her fingers and may ultimately need to replace most writing with typing. Its not your primary concern right now, but do store the possibility in the back of your mind so that you will be prepared to take the necessary steps should this become a major issue.

Otherwise, best of luck to you. Once you can control the meltdowns and give her a safe and calm place to be herself, you will start to see more of her gifts. When you do, you will discover how blessed one can be to have an AS child. My son amazes everyone. He really is a gift.

Thanks for your reply. I do try to figure out the source of the stress but sometimes I just cannot figure it out. My dd is still too young to be able to verbalize what it is and I don't know if she really has the understanding to know herself. She doesn't have the self awareness to identify them for me so I have to be somewhat of a detective to try to figure it out. You're right that the source is coping/sensory but it develops into anger. Frustration causes this a lot of the times. I try to do the "social autopsy" after an explosive incident but sometimes I'm left without any good explanation. Sometimes days later she can get sick and I'll realize she probably wasn't feeling well. But it is true that her outburts do not usually have to do with what is happening at that exact moment, but something that occurred at school or just the accumulation of things.

I do want her to learn to control her emotions as much as possible. Unfortunately that must happen in order to mainstream her in public school and other public arenas. I don't want to fit the round peg into the square hole but I do think it's possible with much work for her learn to either remove herself to private location or some other way of adapting.

She has been seeing an OT for 2 years and her issues have improved a lot-especially her gross motor. She has done the Handwriting Without Tears program but handwriting is still very difficult for her. She has trouble keeping a static tripod grasp and complains that her hand hurts when she writes. I give her handwriting worksheets at home, which she has very short attention for. When she becomes frustrated or is faced with something she can't do perfectly (she is a perfectionist) she tends to melt down. The typing is a good idea, she does "play" on a computer.

Thanks for your ideas.

I know the detective work is hard. Sometimes when I'm writing I forget HOW hard. It does get easier. They got older, you observe more, you get lucky, and eventually they can tell you. Just don't give up. It's key.

Also, don't worry too much about being ready for mainstream or public and all that. There are many options and many roads that work to the same end goal. Detours won't mean that your child has any less bright a future. If you have to take detours for her to be in her element, you take them. It's just the way it is. Let your child's unique needs guide you in figuring things out.