I'd like to apologize in advance for any spelling mistakes I might make. English is not my main language, so sometimes it's hard for me to find the right words.
Until recently my views on aspergers have been based on my experiences with growing up with an older brother with the diagnose. But after reading about aspergers in girls and how they are different from the boys I really feel it fits my daughter.
My daughter is almost 8 years old. When she was a baby she was high need and wanted to be carried all the time. She didn't like playing on the floor before she started crawling.
One of the first things we noticed when she was a toddler was that she hated to get things on her hands. She didn't like getting sand on them in the sandbox and she cried when we put on sweaters or jackets and she had to put her hands through the arms. When she started feeding herself we had to have wet cloths ready so she could wash her hands between every bite.
When she started going to kindergarten we had a problem with her starting to wet herself again. After a while we found out she didn't like the toilet seat in the kindergarten, so when we brought one that was identical to the one she used at home she was ok. In kindergarten they worked a lot on her social skills. She wanted other children to make decisions, both while playing and also when they had to decide what to eat or which materials to use when they were working on crafts. Many of the other kids didn't like this and felt it made her not fun to play with.
When we go to places she doesn't know well she wants to observe for a while before engaging in any activities. So when we went to playgroups she often sat on a chair for at least a half hour before wanting to join the other kids.
She has always been slow regarding motoric skills. She didn't really jump with both feet at the same time before she was 4 years old and she doesn't have the best balance. She learned how to ride a bike this summer, after a lot of training.
She's now in third grade. She does well academicly, but she only plays with 2 girls in her class and when she can't find them or they don't want to play with her she rather stays alone than interact with other children. She's very sensitive and her teachers tell me she cries a lot. She often feels others treat her unfair. The other complains from her teachers is that she doesn't hear messages given to the whole group and that she can get so into her thoughts that she doesn't listen to the lesson or doesn't finish her work. But she's a quiet girl and rules are very important to her, so I think they sometimes overlook her because she makes no trouble in class.
She can like playing with her younger siblings when the follow her rules, but more often she feels the ruin her playing. When she builds lego she wants her creations to stay whole until she chooses to rebuild or take the apart. But that's not always possible with two younger siblings. She doesn't have very specific interests like my brother with aspergers has. But she likes computers, lego, drawing and small crafts like hama beads.
When things don't go her way she has meltdowns. If we promise her something and we're not able to keep it she reacts very strong. Even if it's something out of our control. She also has meltdowns after days with a lot of impressions and stimuli. Like a trip to an amusement park almost always ends with a big meltdown on the way home or after we go home. We try to make her aware of our plans before we go somewhere, but then we have to follow it to the letter.
She also have some anxiety. After a fire drill in school we had to calm her down every night before she went to sleep for a couple of months. I had to tell her about the fire alarms in our house and our fire extinguisher and what our plan was if there was a fire in our house. But she was still very worried about us forgetting to get her or her toys burning up. Natural catastrophes is another thing that has worried her a lot. I had to promise her we would never go to Hawaii on holiday because of vulcanoes.
Unless she's in pain she never ask for cuddles. We hug her, but I can feel her body stiffening when I do. She could sit on my lap when she was younger, but only if she felt anxious or afraid. My other kids give me big hugs and sit on my lap just for cuddles.
It's also almost impossible for her to make choices. If she has to she often uses choosing riddles to make the choice for her. If I ask her to pick her own clothes from her dresser she can't do it, but sometimes she's able to choose if I give her just two alternatives. She likes comfortable clothes and likes to be warm during the winter. So she can't understand the other girls who don't want to wear warm hats when they go outside. She likes to dress up when she's going to parties, she likes sparkly dresses, nailpolish and braided hair. But she doesn't have an eye for details and when she dresses herself she won't notice that her socks are outside her jeans or that her sweater is inside out.
She's a lovely girl who is very honest and kind. She sings in a choir and is in a theater group. She's can do well without us there and goes on vacations and sleepovers without us, but then it's mostly with close relatives. She has never had much issues with food, at least not after she was able to eat with cutlery. She's never violent during her meltdowns, she just cries and slams doors.
So what do you think? Should I get her tested for aspergers? I don't think she needs much help in school, but maybe a diagnose would get the the teachers to make some changes. I feel they often say that she must get better at paying attention, but maybe then they would rather make sure they have her attention and give her easy directions. Because she does follow rules and directions to the letter if she hears and understand them. And maybe she could also get more help with social situations and preventing bullying. (I was bullied a lot in school and it's something I really don't want any of my children to experience.)
Thanks for reading my long post!
It wouldn't hurt to have her evaluated by a specialist in neurodevelopment. It might be Aspergers, or something else like sensory processing or ADD. Either way, she will benefit from knowing her own diagnosis, especially as she gets older. Life gets a lot more difficult for Aspergers girls in the teen years.
I think you should go ahead and have her tested. Here in England, the best way to assess for autism is the ADOS, which is performed usually by paediatricians. My daughter has only recently got a diagnosis and she is 15. I wish I had realised when she was younger what was causing her difficulties.
My daughter had some of the same characteristics as yours. I remember when she was a baby, if we were on the beach, she would sit, cross legged, holding her feet off the sand because she hated the feeling of the sand on her feet! As she got older, she refused to put shoes on after being on the beach, as she couldn't bear the feeling of even a grain of sand in her shoes! (I used to call her "the princess and the pea"!)
Like your daughter, mine would always stop and stare when she got to the playground. She would need to watch what was going on for a long time before joining in. I taught her how to make friends in the playground : "Hello, my name is ... What's your name?" and this did work for her. She had difficulties making and keeping friends at school, though. I always thought the other children were leaving her out, not realising it was more that she wasn't joining herself in.
My daughter also got very worried about fire! They taught them at school what to do in a fire (and a fire engine came to school). I remember her telling me wide-eyed she would have to crawl to our bedroom. She's been really frightened about fire ever since.
When my daughter was a baby, I used a sling and carried her a lot, but I did this because I thought it was best for any baby. On the floor, she hated being put on her stomach - would have immediate meltdown if I tried this. She never crawled, and was a bum-shuffler, only starting to stand/walk at around 20 months. She had trouble learning to skip, and learning to swim took years. Other motor skills are not so bad.
Like your daughter, mine has always been very quiet at school. Reports would always say "needs to speak up in class" or "needs to put her hand up more". I felt she was often overlooked, still do. She complained the other day that other kids in her Maths class call out the answer, and the teacher never picks her with her hand patiently in the air. I taught her to go up to teachers at the end of classes to say if she hadn't understood something. Another thing that helps, is sitting at the front of the class, so that the other children don't distract her so much. It takes her longer than others to copy things from the board, and that is a problem when the teacher takes it down too quickly, but it also helps her to be closer to the front for copying. (She had an earlier diagnosis of dyslexia, but I'm not sure that is completely right now, as her spelling is fine.)
My daughter would often have meltdowns at home. I think now that the school day was very hard (overwhelming) for her. She would keep herself quiet and good at school, but at home would meltdown often.
At home, like your daughter, she would want to keep things she built in lego in one piece. Once or twice when she was away on school trips I would tidy her room and take apart the lego things. There would be a meltdown, on her return, but at least she got to build something else with the darn lego!
Another thing that was hard to manage was that she always wanted to keep things that had no apparent use, such as birthday wrapping paper (not to re-use, just to keep!) I developed a strategy of taking photos of things she wanted to keep. This was a good compromise. I've got a folder on my computer called "Things A wants to keep" and she never looked at it, but I guess she knows it is there!
I recognise the making choices thing too. She still asks me what she should wear. I do find that if I make a suggestion, it is usually the wrong one, though! She will also ask my advice about her art homework, then do something completely different. Sometimes she will do what I suggest, then protest violently later it was the wrong thing! I suppose this might be connected to the keeping to rules thing. She wants to get the decision "right" although there may not be a right answer, just the one you want.
Well Vilde, it was good to read about another Mum struggling with the same things. We are not alone! One good thing about getting a diagnosis is that you will find support groups near you with Mums who understand what you are going through. Another good thing is that you can guide schools etc better in how to support her, if you have a diagnosis. It is, in a way, heartbreaking to realise your beautiful child has a disability like Aspergers. Some people argue that it is bad to give a child a 'label'... but I reckon those are people who are not living with a child on the spectrum. You wouldn't say of a child with cerebral palsy it is wrong to give them a label... it is essential, in order to get them help and know how to support them. My daughter is fine with the diagnosis by the way, and I am learning to see her as different and special.
EarthRootsStar - I'm not sure I agree that life gets more difficult for girls in teen years. I think life gets more difficult for all kids in their teens, and girls with Aspergers are no different. But it has always been difficult for her. I suppose her difference has been more noticeable since she's been a teenager, though. Luckily she has a few friends at school who also have some odd things about them and they accept each other the way they are.
Good luck Vilde.
Thank you so much for your reply Nelladonna! It's so nice to know that someone else has been through the same. I've now read several books on the subject, researched online and I've also gotten in touch with another Norwegian mother who has a girl with aspergers. A lot of the information is in english, so a lot of the more practical information about getting a diagnosis or getting extra help in school is not as relevant for me. So it's nice to have someone who knows who to contact and what to do.
I talked to my father about my suspicions and he agrees with me that she probably has aspergers. He says a lot of her behavior reminds him of my brother at the same age. My dad is a psychologist, so I'm pretty sure he would tell me if I was just making a big deal out of nothing. But sometimes I doubt myself, since she can be so well behaved and in many ways be just like other kids.
It's also weird to see her with new eyes after I've educated myself a bit on the subject. Like how she is stimming by rocking and also making sounds. That many of the conversations where we felt she was difficult and argumentative, it was just us being unclear when we asked her to do something. The latest thing I've noticed is that she sometimes repeats the last word in a sentence several times. I'm doing my best to try to change thing here at home to make things better for her. I'm thinking more about which words I use and to give clear and easy directions.
Are you in Norway then? I think you are doing very well to educate yourself. It is just what I did too! So much of what you say sounds familiar. I just re-read the final para of your original post, and really appreciate what you are saying about the teachers - should maybe make sure they get her attention and also give clear instructions! If only I had realised with my daughter when she was so young. I am now struggling to pay catch up, and she is in her GCSE year. (Important exams here, as I expect you will know.) Clear and easy directions is key, isn't it?
I am also coming to believe my husband is on the spectrum. He is the arch stimmer in our house... so many finger clicks, drumming on his legs, legs shaking up and down when seated... drives me potty at times! He also does not think to ask how I am or how my day has been. Can seem quite selfish, but I think it is just not the way he operates.
My daughter used to do something that I'm now wondering if it was stimming... she used to rock on the floor... in a rather embarassing way! It could also have been because it felt good... I just told her not to do it in public if possible! My Dad was rather shocked when he saw it (he's a doctor as well, but not the psychology kind). I just told him I assumed it felt good and that she would grow out of it if I didn't make a fuss and she has done, thank goodness.
She is currently very worried about how she will cope going on a school trip to Berlin. She is most worried by being overloaded in the busy airport. I am trying to talk her through things she can do (buy some sweets, buy a puzzle book) and also how to look out for the flight numbers of her plane. This seems to have calmed her down a bit. I could imagine her rooted to the spot, unable to know what to do, otherwise!
It might be nice to continue this dialogue by email, if you'd like Vilde. Not sure how to get you my email address without making it public though!
The best thing about getting an assessment is that it gives you information one way or the other. If she is Aspie, then you know and can deal with it. If she isn't you can rule it out and keep searching.
But your daughter sounds almost exactly the same as mine, who is 6 and Aspie (her diagnosis is High Functioning Autism) but she fits the Aspie criteria.
Weary SuperMama to my amazing neurodiverse 6 y.o. DD and to my on-the-go neurotypical 3 y.o. DS
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