My daughter (nearly 6) has just been diagnosed as HFA/aspie...she also has hemiplegia and scoliosis, hence the delay in picking up on the aspie issues.
As far as I'm concerned she's a bright, happy, well-behaved, chatty (with me) affectionate little girl. I come from a family of rather eccentric, reclusive folk, so who's bothered about "normal". Most of the issues seem to be about "what other people think". However there's still some stuff I wanted opinions/advice on, I'm hoping you may be able to give me some feedback.
1) Eye-contact...does it really matter? I'm not particularly keen on sustained eye-contact myself, so I can understand the feeling. I suggested to my little girl she looks at mouth or nose of whoever is speaking to her, but her SEN teacher seems to think that it's important for her to use eye-contact.
2) Stims. The only one that bothers me is violent head rubbing (when she's tired/stressed/needs the toilet. Cos it turns her hair to "felt" and it's really hard to brush her hair cos she does it while I'm brushing!
I asked her if she could rub something else like a knee instead but she says "My naughty hand won't stop doing it". Any suggestions?
Is she likely to get teased about "happy-flapping" when she's older? If so, should she/could she be able to control/modify it? Personally I think it's quite cute, but I know kids can be mean when they're older.
3) Water.She wants me to teach her to swim (she loves fish and insisted I buy her a little snorkelling kit). I love swimming and snorkelling, but the big problem is she hates getting her torso and hair wet and freaks if she's splashed, but she loves wading in the pool/sea. Somebody suggested I get her a wetsuit, but I'm not sure how she'd cope with the feel of it (has a lot of "clothing quirks). Any ideas?
5) Noise sensitivity (freaks over hoovers/hand-driers etc.) Does it decrease as you get older?
4) Are there any aspies out there who enjoyed secondary/senior school? Teens can be so nasty to each other......I'm worried in advance!
Thanks for listening
littlem
Thanks for all the advice and info.
Re; eye contact. Was interested in the "animal dominance" idea, cos she used to complain a lot about the family cat "staring at her" (the two of them have jealousy issues!). I told her to "stare back", and she got a real buzz when she found out he always blinks and turns away first.....
Re; head-rubbing; Tried the hand-held game idea today at hairbrushing time, and she said "No I can't play now cos I need a hand to rub my head!"......My brother (who was sitting next to her, and who knew the plan) was rolling with laughter. Still her cousins recommend getting her a Nintendo DS, and she adores computers and new gadgets, so maybe the toy in question just wasn't alluring enough....I shall work on that idea some more. She has head rubbing bouts about 8-10 times a day (always looks like she's wearing a fright wig in school photos). I fear it would have to be a crew-cut rather than braids....
Re; "Whooshing noises". I usually hoover/mow lawn while she's at school, or she hides in the bathroom until I've finished. We had a mini-meltdown in Pizza Hut today over a hand-drier in the bathroom, a common problem in public toilets. However usually we can use a "Disabled toilet" where I can make a big show of switching it off.
Re; Water. I think the distraction idea is good. They have a "fun session" at the local pool with lots of water toys, and she's always less nervous during those trips. One time they'd overheated the pool (it was like a very warm bath) and she actually went in shoulder deep and never fussed over splashing. So maybe water temperature has something to do with it too.
One last question...Can aspergers/HFA affect sleep patterns? Cos I haven't had a night of unbroken sleep since she was born. She usually wakes up (crying out for lost teddy/ or to be tucked in) about 3-4 times per night. I've taught her not to get up before the clock says 6AM, but she'd like to get up at 4.30-5.30 AM.
Anyway, thanks again for all the input. It's so nice to be able to discuss these "quirks" with people who have firsthand knowledge of the issues. It was sort of a relief to get a diagnosis, cos I never realised anybody else experienced this stuff.......
If its any consolence to you, I am and aspie and I am having a wonderful life.. yes my famil always new something was wrong with them.. we referred to it as the family curse! Now we have a name and a face to this thing. I am the first to be officially diagnosed at the age of 55.. now 56... I just had my Bday
Scoliosis will be a challenge but with the support and right attitude she will be fine... there is a female international billards player nicknamed "the black Widow" lOL beautiful woman.. who had scoliosis... so she is a wonderful role model for young girls with the disease...
Yes the eye contact matters.... have your daughter take acting lessons... and learn how to formally introduce her self... you can help her... it can be learned.. it took me 18 months at the age of 21.. don't wait that long!
The hand rubbing can be OCD... over 25% of Aspies have OCD and hair rubbing and pulling are one of the signs. CHeck out the OCF which is the Obsessive compulsive Foundation.
I am going to be writing a book for parents of Aspies , on how to help their children overcome challenges, which I learned naturally and succesfully, not knowing I was an aspie..
Clothing quirks are a big factor.. It trial and error depending on what she will like.. have her design something.. I know I had when I was a preteen.
Sound NO... it does not get better.
Yes I loved JR HIGH and High School and was an elected officer and popular in my OWN right... I have found memories and have many who love contacting me and still have friends from those years.. My best friend is also an aspie but not diagnosed.. she had a miserable time but is very successful... She had major social issues, but I have to say some were of her own doing... stubborness.... which aspies can be... She was respected however for her mind and talent.
My daughter (nearly 6) has just been diagnosed as HFA/aspie...she also has hemiplegia and scoliosis, hence the delay in picking up on the aspie issues.
As far as I'm concerned she's a bright, happy, well-behaved, chatty (with me) affectionate little girl. I come from a family of rather eccentric, reclusive folk, so who's bothered about "normal". Most of the issues seem to be about "what other people think". However there's still some stuff I wanted opinions/advice on, I'm hoping you may be able to give me some feedback.
1) Eye-contact...does it really matter? I'm not particularly keen on sustained eye-contact myself, so I can understand the feeling. I suggested to my little girl she looks at mouth or nose of whoever is speaking to her, but her SEN teacher seems to think that it's important for her to use eye-contact.
2) Stims. The only one that bothers me is violent head rubbing (when she's tired/stressed/needs the toilet. Cos it turns her hair to "felt" and it's really hard to brush her hair cos she does it while I'm brushing!
I asked her if she could rub something else like a knee instead but she says "My naughty hand won't stop doing it". Any suggestions?
Is she likely to get teased about "happy-flapping" when she's older? If so, should she/could she be able to control/modify it? Personally I think it's quite cute, but I know kids can be mean when they're older.
3) Water.She wants me to teach her to swim (she loves fish and insisted I buy her a little snorkelling kit). I love swimming and snorkelling, but the big problem is she hates getting her torso and hair wet and freaks if she's splashed, but she loves wading in the pool/sea. Somebody suggested I get her a wetsuit, but I'm not sure how she'd cope with the feel of it (has a lot of "clothing quirks). Any ideas?
5) Noise sensitivity (freaks over hoovers/hand-driers etc.) Does it decrease as you get older?
4) Are there any aspies out there who enjoyed secondary/senior school? Teens can be so nasty to each other......I'm worried in advance!
Thanks for listening
littlem
Simen , me too.
Now that i am taking Lexapro for my OCD, my sleep is better.
One last question...Can aspergers/HFA affect sleep patterns? Cos I haven't had a night of unbroken sleep since she was born. She usually wakes up (crying out for lost teddy/ or to be tucked in) about 3-4 times per night. I've taught her not to get up before the clock says 6AM, but she'd like to get up at 4.30-5.30 AM.
Yes. For instance, Insomnia is more frequent in adults with AS. Here's another study:
The prevalence of sleep disturbances in 52 children with Asperger syndrome (AS) as compared with 61 healthy controls (all subjects aged 5-17 years) was investigated. Problems with sleep onset and maintenance, sleep-related fears, negative attitudes toward sleeping, and daytime somnolence were more frequent among children with AS than among controls. Short sleep duration (<9 h) was almost twofold (59% vs. 32%), and the risk for sleep onset problems more than fivefold (53% vs. 10%) more common in the AS group than in the control group. Child-reported sleeping problems were also more prevalent in the AS group than in controls (58% vs. 7%). The results suggest that sleep disturbances should be routinely evaluated in children with AS.
link
Apart from that, as I recall many people with AS report sleep-related problems. I have had trouble sleeping (getting to sleep, actually gaining rest from sleep, retaining a normal sleep cycle) for years.
Hi,
Thanks for more info......will definitely investigate more about "sleep" and "O.C.D".
Re; Sleep. My daughter seldom has problems getting to sleep (we follow a pretty good bedtime ritual)....just problems staying asleep. She seldom has nightmares, doesn't seem anxious, just wakes frequently and rises early. I never put on "big light" (just in hall outside)...and I'm always to 'zombiefied' to offer much excitement!
She couldn't cope with flashlight (hemiplegia causes problems with fine motor skills/manual dexterity)....but I will try putting in one of those push button stick-on lights by her bed for teddy tracking (favourite ted is rather small). Thanks for the brainwave on that one!
At weekends/holidays she's allowed to get up at 5AM, and play with toys and watch videos upstairs, while I have a lie-in. Unfortunately she can't do that on school days, cos if she does, she "burns out" by lunchtime and needs to be sent home to rest.
Re;Acting lessons, I may try that later, but I don't think she could cope yet....she's on small steps at the moment, like "speaking briefly" about something in class "circle time"/show and tell.
She hated nursery and would scream about going. I was initially advised to send her to a "Special School" for kids with severe physical and severe learning difficulties.......but she doesn't have any learning difficulties (teachers say she's actually "very clever"), and she is not wheelchair reliant. So I found a very good supportive mainstream primary school, and she is happy and doing very well. In fact her social skills have improved dramatically since she started in September (with both adults and children). She seems to be quite popular with the other kids despite often being "rather aloof" (maybe it's the "treat them mean keep them keen" factor!).
When I asked her (rather worriedly) about playtime, she said "I like playing by myself, if I feel lonely I play with the other children okay?"
So that shut me up!
Her teachers had tried to intervene with playtime social interaction, but the outreach teacher from the "Special School" told them to leave her alone to make her own "social choices".
She's happy now and enjoys school, so I just hope it stays that way as she gets older.
Hi,
Em has several different 'conditions' which affect her in different ways, so it would be rather overwhelming and possibly confusing to tell her about all of them while she is so young.
However, when. she asks questions, I answer them truthfully in a way she understands. So far she has only asked why she has to wear a back-brace (which she hates)...I told her about the scoliosis (curved spine) showed her the x-rays, and said the brace was sort of like the stake we used to make her sunflower grow straighter (we made one for Ted too).
She also asked why I don't have a "mark" like hers (she has a large strawberry birthmark on her forehead). So I explained about that...she's rather sorry for me on that, cos she likes her "raspberry".
She has never asked why she can't run and jump like the other kids (hemiplegia - a form of cerebral palsy), and has never asked about any of the aspie symptoms. When she does (and I imagine she will at some point) I'll talk to her about these things.
Since she was little, she has seen lots of doctors and travelled to lots of hospitals. I think it became her "normal". Fortunately now we have got the various diagnoses, the hospital visits have tapered off.
The main thing that I tell her is that she is clever, funny and pretty (which she is) and that she's the best little girl in the world as far as I'm concerned, and that I love her very much.
Welcome to the forum, littlem! It's been a great resource for me, even though I no longer visit as often as I used to.
My opinion on your questions:
Eye Contact
While I think it will be important for your daughter to eventually learn to make eye contact, I think it is also important to realize that many on the spectrum find it very overwhelming and uncomfortable to do so. It has been described on this forum as receiving too much information.
Personally, I think other issues come first. At your daughter's age, learning to manage the sensory environment, and figure out how to adapt the world so it is less scary, seems primary. She can't focus on the basic skills like reading, writing, and communicating if she is constantly overwhelmed with sensory input, or tasks that seem too large. My son easilly gives up; it is easy for things to become too much, and for him to believe the accomplishment is impossible. Breaking things up into smaller pieces is essential. Given all that, I find it difficult to see how forcing a child to adapt a very uncomfortable skill that won't be nearly as essential until later in life is necessary at this age. I would wait until you feel you have managed the other areas of conflict in her life. She needs to develope confidence and a sense that her world can be managed and pleasant to live in. That comes first, in my opinion.
Stims
Stims are self-calming for those on the spectrum, and an important part of how they deal with the stress and overload that faces them. However, stimming in public will result in teasing, depending on how obvious or socially unacceptable the behavior is. With my son, we've focused first on the stuff that bothers the kids around him most. We've helped him learn to understand that those behaviors are resulting in social issues for him, etc (he cannot see the connection). At home, we've loosened up. He can pretty much do as he needs to within the boundaries of home; home is his safe place, his de-stress place. It seems to be easier for him to manage the stims in public knowing that he does not have to do so at home.
We also work with the teachers and kids at school, so that they understand some of the things my son does are self-calming, and because "his brain is wired differently," and are not born of an intent to disruptive. Chewing on pencils, for example, is something he can't seem to let go of unless a straw is handy (teachers are learning to have them stocked; my son literally EATS the pencils).
Water / Noise
To me, the issues with the water and the noise are related. Both are sensory problems. It is not uncommon for a child with sensory issues to still be attracted to something that bothers him. Our way of dealing with it has been to allow my son to conquer and adapt at his own pace. If his issue was water but he wanted to swim, for example, we would bring him to the water often and let him just play in his own way. Gradually suggest going further, but not push the issue. Eventually, you get lucky, and you've nudged at the right time. The next baby step is taken. It seems to me like something the child has to conquer and deal with in his own mind, and there isn't much we can do to help, other than continue to provide ideas and opportunity.
My son had a huge fear of automatic flush toilets, in a manner similar to what your daughter fears with dryers. I didn't even know about it until I discovered he was going on outings with day camp and holding his pee all day. For a while, we simply kept him from outings where there would only be auto flush toilets. Eventually, his desire to go on the outings caught up with him, and he started facing his fear in baby steps, with us present. His choice, nothing forced. Now, he can deal with it. I suspect it will be the same with your daughter. Eventually she will decide that avoiding these items means also avoiding things she desires. That realization will cause her to want to conquer the issue.
Overall, I've found parenting an Aspie child to be about listening and understanding. The better I understand where my son is coming from, the more I am able to find appropriate ways to help him. Simply desiring him to be like everyone else will never be enough to make it so, and the process to get there would do huge injury to his self-image. He already knows he is different, that he can see, and he needs to make peace with it (he has, now) rather than feel it is an obstacle too huge to overcome (shortly before we got the diagnosis, my son was starting to shut down, feeling it was all hopeless, that he could never cope - this is what must be avoided at all costs).
Good luck, and I hope something I've written will help.
I agree if you overwhelm her, it can become too much and she will give up or not do anything out of spite..
Best to take the challenges as they present themselves in her world.. eyes are not important yet... I did not look into peoples eyes till half way through college.. I finally told myself I needed to learn.. so I applied my theatre training for 18 months and it worked...
I would never want my child to be like everyone else... She is not! I raised her to be her!
My daughter told me when she graduated from college"Thank you Mom for teaching me God, because when I felt i was right and I was by myself against a group of everyone elses... I never felt alone!" It made me cry!
My daughter was a miracle baby.. and miracle babies are the best and God's' Chosen ones..
Hai Littlem,
You noticed your daughter went deeper into the water when it was warmer. The comfort of the warmth may be all she needs. The cold doesn't tell her that she's in the water. Less sensories. not as overwhelming. She's a bright kid. You can tell her how far she dared to be.
With my daughter it helped planning emergency actions. If something new was going to happen, we thought up a worst case scenario she could be in control of. We also tried to think why it was nice or important to learn new, often scary, things in the water. Lots of things were about safety, how she would be more and more in control in the water. That was what she wanted.
In cases of panic she knew the teacher would carry her and bring her in a safe place of the warm pool. If necessary she would call me (parents were behind a glass wall) to come and give comfort. A big hug, letting her know it's OK, and letting her know she was safe, almost always made her go through with the lessons. But she knew that she could stop if she couldn't cope. And that has happened. Especially if a lot had happened at school etc. But she has diploma's now and loves to swim under water like a fish, more than normal swimming. She still doesn't like her head under a shower...
It helped her a lot that she had a very good swimming teacher who took all the time she needed, and always walked in the warm water with the children. The group of children she swam with was small. She'd get lots of personal attention. And she really wanted to swim. So she wanted to dare more than she dared. And she did.
Hi,
Breakthrough with head-rubbing tonight! Put on a new audio book before I started brushing/combing....and she didn't rub once throughout a 20 minute 'de-tangle session' !
Yetti, what you said about her birthmark...her Grandad said the same thing to her. Em says it is a "beauty mark like the Indian dancing ladies (Bollywood style) but I don't have to paint mine on".
Hyke your comments about water started me thinking. I have a terrible fear of heights. My daughter is fearless in this area. On a recent trip to Disneyworld she got me onto some high rides that scared the pants off me and said "It's okay you can shut your eyes and hold my hand, I'll look after you Mummy". On the last one she said "Oh no it's started to rain and there's water splashing my face, now I'll have to close my eyes and hold your hand".
It's easy to view somebody elses fear as irrational, but if you have a phobia yourself it's hard to control all the panic buttons it sets off. I think she understood that better than I did............
Can a phobia also be an O.C.D?
I ask because she refuses to draw on paper that has an uneven edge, and was scared to touch or even go near a certain book cos it had a torn spine....once I mended it, the fear was gone. I tried to find out why these things worry her, but she can't explain it.
Hi Littlem,
I like your daughter. She's bringing up solutions by herself, comforting you in Disneyworld and telling you what she needs when it rains.
And I think it's very brave of you to let her take you up that high. I'm terribly scared of heights myself.
water thing get a piece of materal of a wet suit if you can and let her touch and i kmean really touch it if she wish(this could include running it across her face if she wishs)
<---diver 34 yrs... use the light weight like 1 mil or better yet I swim with a dive skin.. it is the undergarment for a wet suit.. very very soft.. we divers use it in warm waters for skin protection and a bit of temp protections.. it is soft.. comfy , warm... and like a swim suit .... covers entire body.. .keeps the cold effects of water off your skin.. The high end brand is called "Shark skin" it has an under layer that is ultra soft... I swim laps in it if the water is chilled.. takes the edge off.. Contact me if you need more info.. I know everything about water and materials.
Thanks Yetti & Guardian,
Great ideas re wet suits and dive skins. I have done some scuba diving in the past, but I didn't use dive skins, but I seem to remember seeing and feeling one...I think it could work. I'll take Em down to the dive shop and let her try/feel one.
My best ever holiday was snorkelling around Fijii coral coast (before Em was born), if I could get her over the water sensory issue, I know she'd get a real buzz out of seeing the fish and coral (she's always pulling out my old dive books to look at all the pics)...she wouldn't even have to swim there, cos she could see lots just waist deep with a mask!
Thanks everybody for all the input, it has been such a great help.
Serge in response to your comments. I'm not looking for a "cure" for my daughter. Her Ed Psych recently asked permission to refer her to a clinical psychologist, and I said "Why, what's the benefit to her, she is what she is, she's happy so am I, no problems, so what's the point?"
They then told me that it was to help the school get more "Special Needs funding".......
I asked for advice cos a) I wanted to find out more about different aspects of autism/aspergers cos we've only recently got this diagnosis.
b) I don't see any of her behaviour as "challenging", but it's a bit tricky teaching her to swim (which she has asked me to do) when she doesn't like getting her torso wet, hard to brush her hair (which I have to do) when she's rubbing it into knots and awkward using public toilets (which we both have to do sometimes) when she's terrified to enter because of the hand-driers. It's not about making her appear "normal", I was just looking for tips on how I might get around those particular situations.
I don't give a stuff about other peoples perceptions (and she doesn't either at the moment). I was worried about the prospects for future "school bullying", but as somebody has pointed out, you don't have to be an aspie to get bullied. In fact thinking about it, I was bullied at school, my brother was, and several of my nieces and nephews are currently complaining about being bullied...and we're all NT (as far as we know).
My interest in O.C.D's is because all my family (parents, siblings and self) are reclusive compulsive hoarders, I'm the odd one out cos I can see (most of) the floor in my house (just don't open the cupboards lol !) and occasionally have friends to visit.... Apparently this is now being classed as an O.C.D, which got me interested in O.C.D's.
My sister (who is also the worlds worst hypochondriac) asked me about cures (she can't see the ceiling in her house).....I suggested a builders skip and a removal van...
Like I said in my first posting the benchmark for "normal" is pretty flexible in this family !