Signs and symptoms of her Aspergers

First, let me add a disclaimer. I know Asperger's has been dropped from the DSM, and that my daughter's diagnoses is in fact, ASD (autism spectrum disorder). I'm of the mindset that it should've stayed a separate diagnosis. To me, it feels like grouping my daughter with all other autistic kids, minimizes the suffering and pain and heartache of those that's lower down on the spectrum. You just simply can't compare a child still functioning in a mainstream school with one that's totally unable to function in any school setting. How fair is it to that child and parent? Won't this make people with no autism experience believe all kids are like asperger kids, because there's so much more of them than those lower on the spectrum? That wouldn't be fair! Anyway, I'm going off on a tangent. So my daughter has ASD, I get that. But for the time being, excuse me when I say she has Aspergers. It's just easier, iykwim?

We went to the psychologist last week, and she completely agrees and supports the diagnosis of the psychiatrist. She went through the diagnostic criteria with me, and explained in detail why my daughter specifically fits the bill. She didn't even just have the minimal 2 or more requirements for some areas, but ticked most of the boxes. So there's no doubt that she fits the criteria. I didn't find it shocking. Maybe a little sad, but it was a relief to have confirmation and more support. This therapyst has known my daughter for 6 years and saw her many, many sessions in those years. I trust her.

She told me that we definately need to tell Boeboe. Take our time, but tell her eventually. We haven't, yet. I don't know how!!! I honestly am at a loss for words when I look at Boeboe. How do I explain it in such a way, that she can take the good from it? And not feel like "see, I KNEW there was something wrong with me!!!". The psychologist says that at the moment, she feels like she's stupid or ignorant (or such), and that's why she sometimes makes the social mistakes that she does. If I tell her she has aspergers and explains it, it gives her another option to those she has. It's not because she's stupid, but because of the aspergers. It takes the guilt away. Explained like that, it makes sense to me. So I agree, I need to tell her. Still, I don't know how....

Secondly, we need to tell her brothers (after she was told). So that they can let up on their relentless anger and frustration due to her behaviour and the way she acts and talks. Thirdly, we need to tell her teachers, so that they can help and support her during class. Lastly, we should NOT tell classmates or their parents, because they WILL use this information to their own advantage and ostracize her even more.

How sad is that? But I guess true. Boeboe is already being bullied. By girls you would NEVER have thought would bully another child. Their parents will be horrified to learn the way their kids have been acting. So far, the school has dealt with it, so all that the parents know is that the girls has been fighting and every child has told their own version to their parents. It hasn't gone far enough for me to have them call in specific kids, but believe me, the principle has been furious with some of them. Which was enough, so far, to stop the behaviour every time. I'm pretty sure none of those kids will tell the full truth to their parents! For example, none would say: "Oh by the way, when Boeboe frustrated me by talking nonsense like she sometimes does, I told her to go away. And every time she tried to play with us during break time, I screamed at her to leave us alone! And then we ran away from her, hiding, and whenever she came near us, we would walk away from her, laughing."

I'm sure the parents would be horrified to learn that their little angels have behaved that way (not just based on my daughter's word. It was seen by other teachers, and admitted by some of the kids.). I do think the kids are basically good kids (which is why we never pushed for the school to take it futher), that are just confronted by a person they don't understand, and don't know to handle. I would've loved being the one to teach them. But it's not my place. And I need to protect my daughter. If the psychologist think they would use this knowledge to hurt my daughter even futher, and to completely ostracize her, then I'll refrain from telling them or their parents about her aspergers. If one day, she wants to divulge this info to close friends, she's more than welcome herself.

It made me wonder though. So many people think "Oh, I'm basically a good person, when I'm confronted with a sweet child with aspergers, I will treat her right". And then they look at tv shows like Big Bang Theory with Sheldon probably having aspergers, or Parenthood where Max was diagnosed with it, as well as his aunt's new husband (can't remember his name!). In any case, they look at these characters and think these kids/ppl and their quirks are sweet and endearing and funny and very human. But the reality of talking/living/coping with an asperger's child can be faaaar from that scenario. It's frustrating, it's hard, it's difficult, it's maddening. Very quickly, you forget how endearing it first seemed. Suddenly, this person's lack of insight is frustrating! Or his/her immaturity is so puzzling. Or his/her illogical behaviour or lack of common sense or silly way of speaking angers you because it just doesn't MAKE SENSE. Etc. Or they just doesn't behave like you expected them to. Or they got angry at something silly. Or angry at you because they misunderstood your joke. Or took something you said very literally. Then, suddenly, not everyone is so "basically good" anymore when confronted with the realities of aspergers. Suddenly, people gets angry and frustrated at that child or adult, and calls him/her weird. Suddenly, we forget that our kids watch how we behave towards or talk about the weird behaviour of people around us, and they copy us when confronted in the class by such a person. It's the way of the world. :-(

Anyway, here's a few of Boeboe's signs and symptoms (if long, leave it for another day. I should've split this post in 2).

Boeboe's very first sign that I noticed, was when she was about 2 months old. She had this way of gliding her eyes to one particular corner when you tried to entertain or engage her. As if she couldn't see, or was extremely disinterested in what she saw. I ignored it. Of course! She was only 2 months old. But it persisted. And where other babies at age 3 and 4 months become very interested in their environment, she didn't. My sister noticed it, and one day very gently asked me if I've noticed, and don't I think it very strange that she's almost still acting like a zombie at this age? If she didn't maybe indeed had braindamage from her traumatic birth. I replied yes I noticed and I do think it's strange, but that the clinic/pead just keep on saying "give her time, she's fine". And that I do see small improvements as time goes on, so maybe they're right and she just needed more time. So I held onto that belief. She smiled her very first smile at 10 weeks. And only once or twice a week after that. Way late. Everyone said, "ag you know, she was born early". When I replied, yes, she was born only three weeks early, they just shrugged. Boeboe laughed out loud once at age 4 months, then not again for many, many months. Five months was a definite turning point for her though. A leap in progress. She interacted with us and her environment! By age 8 months, she was like a 5-6 month old baby. I had to take her to the occupational therapyst to teach her how to sit independantly, but her developmental delays were written off because of "her difficult pregnancy, birth, slight prematurity and hospital stay as a newborn". I accepted it. What choice did I have? In those days, a concerned mom was hushed. Really. Just hushed.

When Boeboe didn't speak during her first year, it was written off as "something in our family, since her brother also had a slow start". She started saying single words, but only progressed to 2 words when she was already 2 years old, almost 3. She used an extremely limited vocab, and her pronounciation was so awful, that no one could understand her except me and her dad. Even he struggled at times. Everyone blamed the dummy (and thereby, of course me, her mother, that allowed her this!). I knew by this time there was much, much more to this than dummy-usuage! Which made me adamant that if she needed the dummy's security, I'm letting her be. Rather that than being a thumb-sucker as I have been for too many years as a child. Now, I'm really, really grateful that I allowed my anxious, autistic little girl the comfort she could derive from years of dummy-sucking.

Her language skills slowly improved, though with a number of hiccups. For example, she refused to talk AT ALL at school. She loved going to school to pick up or drop her brother off. So from age 3, I stayed a bit with her so that she could play there when I dropped Mr N off. She didn't socialise. She didn't play with the other kids. But she watched them, and she loved following her teacher. From around age 3.5, I was even able to leave her short stints at a time, hurrying to quickly do shopping or such. After age 4 at some point, she was able to say hello to her teacher. It was huge!! She spoke!! She also started to play WITH the other kids.

She only threw her famous tantrums when I was there, picking her up (every day!), or if I hung out at the school for a while. She never threw tantrums if I wasn't around. Which is one of the reasons I thought this isn't/can't be Aspergers. Because clearly she could control it, not true?! That's what I thought.

Her tantrums started when she wasn't even 10 months old. I told her no when she tried to take a toy off her brother. Man! You should've seen it. She threw her whole itsy bitsy baby-body backwards, hiting her head quite hard and started screaming with a very angry, red face. Oblivious to how her head must've ached. Her hands curled into little fists that she was banging on the ground next to her, and she kicked her legs viciously. It took me a moment to wake up from my stunned surprise, and pick her up to hug her and make sure her head is ok. This just infuriated her more, so she arched her back away from me and kept on screaming.

This was the first tantrum I saw. The first of way-too-many. From there on out, it happened daily. And I couldn't pick her up, she would just head-bang me and hurt herself even more. So I tried all the tips and tricks the books advised. Hugged her, spoke calmly, ignored her, walked away, etc. Nothing changed a tantrum, but walking away or ignoring her had the worst results. Ppl blamed me, they said it's because I always gave in that she learned to not stop until I give in. After many years, I once decided to time it, because of those ppl who didn't believe me that I HAVE tried ignoring her. After a 3-hour tantrum, I couldn't take it anymore. I interfered. How long should you ignore your screaming, self-hurting child to teach her not to expect help from mommy? Three hours was my limit. Do you know how it feels to listen to a 3-hour tantrum? Do you have any idea the exhaustion, the pain, the confusion, the hurt this causes a mother, and the child? I ached for what her throat must've felt like. It certainly sounded very hoarse and painful by the end of that 3-hours. :-( It didn't change her tantrums after that. She learned absolutely NOTHING from that 3 hours. I learned to follow my instincts. I had one older boy who threw tantrums for 6 months and that was it. After age three, he never, ever threw another tantrum. I knew what was normal, and what Boeboe gave us, wasn't.

One thing must be remembered. Almost all the traits of an asperger's child is normal, human-being traits. It's the intensity of this trait that presents strongly in aspergers, compared to other children. So reading the following list, you may find yourself saying "my child does that", either because you worry he/she has aspergers, or because you can't identify it with aspergers if your child clearly has it too, and he/she is "normal or neurotypical". It's all about the intensity. The level to which the child takes it. I have 4 children, and the other 3 also displays some of these signs. But none of it compares even close to how MUCH Boeboe displays it. In her case, it overwhelms. It washes over you like a storm on the sea. It's also normal for children to have some of these traits to an extended degree, and still not have aspergers. Aspergers also doesn't mean you have all these traits. But you will have a lot more than the average non-asperger person will have! So you have more of these signs, to an intenser degree. Does this make sense? So here's the list (my comments about Boeboe in italics):

Emotions and Sensitivities:    

1. An emotional incident can determine the mood for the day. (O gosh yes, don't upset her the morning and then try to take her to school! It has become much better with age. And the more you try to calm her down, the worse it will get. You simply COULD NOT reason with her. It is much, much better now, and especially after starting the medication.)
2. Becomes overwhelmed with too much verbal direction.  (One instruction. One explanation. One short sentence. Its better with age, still not on par with her peers though.)
3. Calmed by external stimulation (e.g., soothing sound, brushing, rotating object, constant pressure).  (Hugging her security object. Or sucking. As a baby and toddler, this was the dummy and her blanket.)
4. Desires comfort items (e.g., blankets, teddy, rock, string). (Had her comfort blanket taken EVERYWHERE until she was about age 6. We even bought a 2nd one (to hide, in case its needed), but she seized it and from then on had 2 security blankets taken everywhere, lol.)
5. Difficulty with loud or sudden sounds.  (yes)
6. Emotions can pass very suddenly or are drawn out for a long period of time.  (Drawn out way, way too long for what's considered normal. She'll still cry or moan the evening about the fact that I made her brush her teeth at breakfast!)
7. Inappropriate touching of self in public situations.  (I think just what's considered normal in Boeboe's case.)
8. Intolerance to certain food textures, colors or the way they are presented on the plate (e.g., one food can’t touch another).  (Yes! Couldn't even tolerate anything but completely smoothly mashed up food until after age 2. She improved beyond what her older brother has. He still has MAJOR issues with this.)
9. Laughs, cries or throws a tantrum for no apparent reason.  (Cries and tantrums for no reason, yes!)
10. May need to be left alone to release tension and frustration.     (Yes, we send her to her room numerous times a day, even now at age 12.)
11. Resists change in the environment (e.g., people, places, objects).  (Yes! She has to be warned and given ample time. Even at age 12.)
12. Sensitivity or lack of sensitivity to sounds, textures, tastes, smells or light.  (Yes! But normal in our family.)
13. Tends to either tune out or break down when being reprimanded.  (Tune out. She just doesn't listen. She keeps on screaming and screaming, drowning out everyone else.)
14. Unusually high or low pain tolerance.  (Very low, except that she WAS very brave and coped with immense pain in her life. But then she'll cry on and off for 5 hours because of a simple papercut or a bumped toe.)

School-Related Skills:   

1. Difficulty transitioning from one activity to another in school.    (yes, I believe so)
2. Difficulty with fine motor activities (e.g., coloring, printing, using scissors, gluing).  (yes, but it's mostly controlled now.)
3. Difficulty with reading comprehension (e.g., can quote an answer, but unable to predict, summarize or find symbolism).  (yes! A huge issue in her school work, especially in language subjects. I still do her summaries of her work for her. She doesn't understand symbolism at all. She struggles with comprehension, both verbally and what she reads.)
4. Excellent rote memory in some areas. (no)
5. Exceptionally high skills in some areas and very low in others.  (yes! Tested as such in her IQ tests. A particularly bad discrepancy between her verbal and non-verbal skills.)
6. Resistance or inability to follow directions.  (yes!!)
7. Short attention span for most lessons.  (not sure. Teachers doesn't complain, so I don't think so?)

Health and Movement:     

1. Allergies and food sensitivities.  (Yes! Nuts, oranges, honey, medications)
2. Apparent lack of concern for personal hygiene (e.g., hair, teeth, body odor). (yes! Even at age 12. Doesn't care for herself at all, drives me dilly when I have to ask her to comb her hair or wash her feet! I still have to remind her to brush teeth every time, "approve" (or not) what she's wearing when we go out and telling her to wash her face. She simply cannot eat ANYTHING without the tell-tale signs still being on her face afterwards. Even now at age 12!)
3. Appearance of hearing problems, but hearing has been checked and is fine.  (yes!)
4. Constipation.  (yes! But its also a physical problem from her tethered cord.)
5. Difficulty changing from one floor surface to another (e.g., carpet to wood, sidewalk to grass).  (As a baby yes, not anymore. It was quite funny how she would rock on her legs and one arm, while the other arm is lifted up and extended when she was a crawling baby. She was clearly unsure how to put that arm down when the floor texture has changed in front of her. LOL)
6. Difficulty moving through a space (e.g., bumps into objects or people).  (Yes! Irritates me to no end. I didn't realise this is an aspergers issue. :-(
7. Frequent gas, burping or throwing up. (No, but she does have GERD.)
8. Incontinence of bowel and/or bladder. (Yes! But in her case, due to a tethered cord.)
9. Irregular sleep patterns. (No, not since being on the medication to calm her anxieties.)
10. Odd or unnatural posture (e.g., rigid or floppy). (Yes! She got therapy to help with this.)
11. Seizure activity. (No)
12. Unusual gait. (Yes! But again, due to the tethered cord. And not too much of a problem these days anymore.)
13. Walks on toes. (No)
14. Walks without swinging arms freely. (No)

Social Skills:    

1. Aversion to answering questions about themselves. (Yes! She seems unable, rather than unwilling to answer.)
2. Difficulty maintaining friendships. (Groan. The bane of her life at the moment!)
3. Difficulty reading facial expressions and body language. (Yes! Psychiatrist and psychologist both noticed this. It's something we have to now work on asap.)
4. Difficulty understanding group interactions. (Yes!)
5. Difficulty understanding jokes, figures of speech or sarcasm. (Oh Yes! The psychologist especially looked out for this during her last visit there, and said Boeboe is extremely literal. She doesn't grasp figure of speech at all.)
6. Difficulty understanding the rules of conversation. (Yes! A big problem. She doesn't understand taking turns, timing, etc.)
7. Does not generally share observations or experiences with others. (No, she does. But limited, I think.)
8. Finds it easier to socialize with people that are older or younger, rather than peers of their own age. (Yes! Much, much younger. All her friends or ppl she wants to interact with outside of school are at least 3-4 years younger than she is.)
9. Gives spontaneous comments which seem to have no connection to the current conversation. (Oh Yes! Then we'll ask "huh?", and she'll have no clue why it makes no sense to us.)
10. Makes honest, but inappropriate observations. (Yes! Thank goodness she does seem to know or have learned that she must wait until me and her are alone. Not like she was little.)
11. Minimal acknowledgement of others. (Not a big deal with her, no. Big deal in myself though.)
12. Overly trusting or unable to read the motives behinds peoples’ actions. (Not sure about this one. She's very trusting, but I think it's just who she is? A more normal reaction rather than an intense one.)
13. Prefers to be alone, aloft or overly-friendly. (No.)
14. Resistance to being held or touched. (No. The opposite! Except during a tantrum.)
15. Responds to social interactions, but does not initiate them. (Better now, was a problem when she was small.)
16. Seems unable to understand another’s feelings. (Just sometimes. She can be very empathatic towards smaller children and animals.)
17. Talks excessively about one or two topics (e.g., dinosaurs, movies, etc.). (Talks excessively, yes! But the topics differs. It usually does reflect her emotional age though.)
18. Tends to get too close when speaking to someone (i.e., lack of personal space). (Oh yes!!! As someone who can't stand it, it has been really difficult for me to allow her into my space, and I still struggle as she still cannot respect those boundaries. I tried to teach her to give her peers space as well, as this has been a huge problem at school.)
19. Unaware of/disinterested in what is going on around them. (Yes when she was little. Now much better.)
20. Very little or no eye contact. (No, not a big problem with her. Surprisingly. She reminds me of myself. I hate eye contact, but has forced myself to stare, and it really is a stare, at people. She also seems to stare at people, so I guess she learned to copy me?)

Behaviors:    

1. Causes injury to self (e.g., biting, banging head).   (Used to, not as much anymore. But does get self-harming thoughts.)
2. Difficulty attending to some tasks. (Yes! Daily battle in our house.)
3. Difficulty sensing time (e.g., knowing how long 5 minutes is or 3 days or a month). (Not a big problem anymore.)
4. Difficulty transferring skills from one area to another. (No, I don't think so.)
5. Difficulty waiting for their turn (e.g., standing in line). (Used to be, not as much anymore. We played LOADS of boardgames to fix this.)
6. Extreme fear for no apparent reason. (Yes! Diagnosed with general and separation anxiety disorders. Lots of fears.)
7. Fascination with rotation. (Love it, but not particularly fascinated.)
8. Feels the need to fix or rearrange things. (Not as much as me! :-)
9. Fine motor skills are developmentally behind peers (e.g., hand writing, tying shoes, using scissors, etc.). (Oh Yes! Only learned to tie her shoes when she was 11, for example.)
10. Frustration is expressed in unusual ways. (Hmmm, no, except if tantrums count as unusual!)
11. Gross motor skills are developmentally behind peers (e.g., riding a bike, skating, running). (Yes! She'll never be really good at sports and such, but she's getting better all the time.)
12. Inability to perceive potentially dangerous situations. (Yes! Very much an issue for us. Especially when she was smaller. She would climb onto the couch's back, jump off, hurt herself, and then just climbed back onto it! We even took her to an occupational therapyst about this, because we were so worried.)
13. Many and varied collections. (Yes! Funniest things she collected, and she's a hoarder.)
14. Obsessions with objects, ideas or desires. (Yes!)
15. Perfectionism in certain areas. (Yes! But who isn't?)
16. Play is often repetitive. (Yes! Which is one of the reasons her older brother stopped playing with her.)
17. Quotes movies or video games. (No. But she'll regularly refer to her tv programs. Out of the blue, or in play or in a conversation.)
18. Ritualistic or compulsive behavior patterns (e.g., sniffing, licking, watching objects fall, flapping arms, spinning, rocking, humming, tapping, sucking, rubbing clothes). (She used to rub her blanket, but I haven't noticed anything recently?!)
19. Transitioning from one activity to another is difficult. (Yes! She hates being interrupted by something like lunch.)
20. Unexpected movements (e.g., running out into the street). (Yes! Regularly hurts her little sister this way, by accident. Because she just acted like jumping up for example and little sister was physically in her way.)
21. Unusual attachment to objects. (Yes, very attached. Unusual? I don't know.)
22. Verbal outbursts. (Oh Yes! To this day, age 12.)

Linguistic and Language Development:     

1. Abnormal use of pitch, intonation, rhythm or stress while speaking.  (Yes! All of these. She'll for example leaves most sentences hanging in the air. She doesn't close them off by using a lower pitch. Almost like she's asking questions.)
2. Difficulty understanding directional terms (e.g., front, back, before, after).   (Yes! She was helped with excersizes and therapy.)
3. Difficulty whispering. (Yes!)
4. Makes verbal sounds while listening (i.e., echolalia). (No.)
5. May have a very high vocabulary. (No. The opposite. Hers are years and years below the level of where she should've been.)
6. Often uses short, incomplete sentences. (Yes! Drives us dilly!! When she'll say something like: "Mommy, that little thing." And I'll ask, "what little thing?" or "what about the little thing", and she'll just repeat "that little thing". And you have no idea what little thing, what about it, what's important about it, what did she want to say, etc. And she'll cry because she TOLD me and how could I not understand her? Or like today, she asked if we were allowed to take that piece of paper. It took me 3 tries to get her to explain what piece of paper she was talking about.)
7. Pronouns are often inappropriately used. (Yes! Drives her dad mad! She keeps on saying "her" for "his", etc. And remember, she's 12!)
8. Repeats last words or phrases several times. (No, not really.)
9. Speech is abnormally loud or quiet. (Yes! I get sooooooo angry. She talks so softly, you can't hear her! Even when asking and asking and asking that she speaks up, she seems to try, but it comes out the same. So frustrating!!)
10. Speech started very early and then stopped for a period of time. (No.)
11. Uses a person’s name excessively when speaking to them. (No.)

So as you can see. More than enough signs and symptoms. Her relatively good eye contact and her love of physical touch and affection was the 2 things that always made me think she just has traits, not the disorder itself. Psychiatrist says that she just doesn't have all the signs, which is normal for all asperger kids. Her social issues are severe enough to earn her the diagnosis. :-(