Difficult behaviour difficult to prove but have no caught it

Hi Penski

I was very much like your daughter in that I was quiet and shy at school and out of the house but loud, angry and difficult at home. I really feel for her.  I've only been diagnosed now, in my forties. The reason I was drawn to your post and your videos is that I'm trying to make sense of my past and I could relate to what you were saying about your daughter.   

I can only tell you what it was like for me, I'm not your daughter, she may feel differently. I feel a lot of shame about the way I behaved, but I could not stop it. I had a horrible time at school, was bullied and became almost mute there, then I'd come home and explode and scream and shout at my mum. Secondary school was loud, noisy and overwhelming and I hated it but I wouldn't have been able to put that into words at the time.  I couldn't understand the emotions I was feeling so I exploded and shouted, screamed, said hurtful things and threw things.  Then once the storm had passed I would cry and say sorry. 

I've heard that people with Asperger's get angry over what can seem trivial things. We don't have the safety valve that other people have, we just blow. Add the hormones of puberty and being a teenager can be pretty difficult.

After an outburst I feel shame, and I also feel pretty shaky. Doing something that calms me afterwards can help. I also need to be alone.  That's probably why your daughter goes off and reads a book in the other room in one of the videos.  She maybe felt flooded with emotions she couldn't perhaps name and was doing something that calms her.

A lot of the stuff she's doing like crawling on the floor, putting a skirt over her head and rocking, she could be doing that to calm down or because she likes the sensation.  The skirt over the head made me think that she's trying to black everything out, get a bit of solitude. That's my interpretation of course and may not be right but it's the sort of thing I would do. Just let her do it and don't make her feel bad or weird about it.

I think your idea of a rota is a good one.  I used to like staying with my auntie who had a rota.  At home it was a free for all (my parents had no idea about Asperger's back in the eighties) and then I'd get into trouble for not helping, but I didn't know what to do. 

I've finally found some things that work to help control meltdowns. I think if I'd known about asperger's before I could have figured this out earlier. Everyone's different, but here's what works for me.

* Make sure I have plenty of time on my own. I work in a busy, noisy office and I am drained at the end of the day.  I need time on my own with no demands on me to recover from work.

* Make sure my blood sugar is stable. Eat whole grains, gluten free, no white carbs or sugar (I don't stick to this all the time, I like sugar, but it makes a huge difference to the meltdowns.

* Get away from the source of the distress and do something calming. Things that work for me are  exercise, running, walking or cycling, playing a mindless computer game like Candy Crush, surfing the net or reading a book. 

When I was a kid, my mum would shout back at me and that would exacerbate the problem as I'd then shout more.  For me, if she had just let me rage and left me alone, the storm would have blown itself out quicker. I didn't share a room though as I had a brother and I understand you don't want to be seen as allowing bad behaviour because it's not fair on your other daughter but try to understand that Ali doesn't want to be like that and may feel bad because she's not like her sister or other kids.  Maybe giving her 10 minutes on her own may help when she blows. 

Please, please, please take those videos down or at least make them private so that only people who have the link can see them. I was mortified by my behaviour as a teenager and had a lot of shame about it and I would have died if my mum had posted a video of me on the internet (luckily it didn't exist them!).  Imagine how awful it would be if one of the kids from school saw them, especially as she puts in so much effort to keep it together at school. 

Ok I've written too much so I'll stop typing now. I've got to pluck up the courage to post this now...  I hope you and Ali find a way to get through this. I've got a very good relationship with my mum now and have had for a long time.

Cheers

redcat

oh and the doc said he needs some feedback from the school to say they agree she has a problem but they are insisting again that she is monitored. She has been like this for years and her mum is at her wits end.

Hi no she has not been diagnosed as yet, her mum has been trying to get her some help via the doctor, who put her in touch with someone at school and her mum has been trying to get the school to agree that there are problems, They have been vey unhelpful and although they keep reporting problems to her mum, then say they don't have problems, yet she is bullied for being too friendly, underachieves even though she is intelligent, disrupts the class but doesnt seem to understand she is doing this, and is does things on impulse even though she has been told it is wrong and says she understands, but then will do the same things during the course of the day. She is often overhelpful and constantly on the go, often does things that most children would stop when told it could be dangerous such as wandering off, nothing you explain to her seems to sink in, for more than a few minutes. she is extremely loving and generous, sometimes to the point of giving away all that she has.

menu,

Does you grandchild have any kind of diagnosis?

One might assume that, because you're asking this on an Autism website, she may have a diagnosis of Autism, which firstly may not be the case, and secondly, if she also has any other conditions, such as learning difficulties, then your approach may indeed not work.

However, if she does have a diagnosis of Autism, or even if she also has ADHD, then your approach can work, but you need to be clear, logical, and consistent.

People on the Autistic Spectrum are not stupid (in fact we often have higher than average levels of intelligence), however, we are often confused by the illogical, and inconsistent, world that neurotypicals live in.

My granchilds mum is fairly sure that my grandchild has some form of adhd and it certainly seems most of the time that there may be a problem as my granchild has a short attention span and continuously does things that are wrong and no matter how much you explain to them that they have done wrong and they seem to understand, they keep doing these things. That is just a small part of it and it happens wherever they are i.e home, school, out in the community. My grandchild is still of primary school age and although i agree there seems to be a problem, i keep hoping that it may just be a case of making them understand. What i would like some advice with is this. My grandchild stayed with me recently, and i set some simple boundaries, such as not opening cupboards without asking, and sitting on the sofa whilst i was occupied, instead of wandering about and touching things or going into other rooms. My grandchild was well behaved most of the day and i decided to have a chat with them about some of the things that they get constantly told off for, such as wandering off without telling someone or being disruptive or touching things they shouldn't to name but a few. When it seemed that i had their attention and they were  joining in the discussion about these things, i pointed out how nice it was not to have been in trouble whilst staying with me or constantly being told to stop doing something. I then explained how their actions can affect other people around them such as making people worry when they wander off, or upset someone if they touch their things and break them. and that it would be better to ask someone if they could do these things and then they wouldnt be in trouble. Now i understand that if my grandchild does have a problem then although they may say they understand, that they may well not, but i felt it was worth a try if it meant that it would help them to improve, if it turned out that the problem was not something like adhd. However, when i spoke to my grandchild's mum, she was rather angry that i had done this as she is convinced that it isn't just a matter of trying to make my granchild understand what she is doing is wrong, and that my grandchild definitely has a problem and cannot help the things they do, and that i should not have pointed out the effect the things they do, can have on other people. My grandchilds mum said that it was classed as abuse as it could mess my granchilds head up and make them feel guilty for something they cannot help. Whilst i can understand what she means, i dont feel that we should give in trying to help my grandchild understand these things, until a professional can confirm that they do have a problem that cannot be helped by this method, it seems as though my grandchilds mum has decided that as she has tried everything and nothing has worked then my grandchild must have this problem, her other reply to me was, that my grandchild says they understand, but then keeps doing things, so i would be wasting my time trying to talk to my granchild about things. Have i done wrong by trying to do this and have i potentially made things worse for my grandchild by explaining how their actions can make other people feel, i certainly do not want them to feel guilty or mess their thinking up. Sorry if this is longwinded but i feel guilty for trying to help.

Also...

Penski said:

Of course I do.  We have an open talking policy in our house; nothing is not discussed.  However, it doesn't stop the arguments, shouting and being awkard.

That is not quite the same thing as simply talking, and trying to understand what life is like for her.

One possible reason for her falling asleep is that she's exhausted!

You say she is only like this at home, well, it is likely that the behaviour you see when she is outside the home takes an incredible amount of effort and energy to maintain.

She probably feels that home is the only place where she can relax, hence she falls asleep.

She may also feels that home is the only place where she can truly be herself, hence the difference in behaviour.

Also, as Azalea says, the skirt may either be a way to block out the external world, or she may simply like the feel of it.

Hi Guys

Firstly I just want to thank you for your comments and taking the time to feedback to me.

I won't be leaving the YouTube videos on for much longer.  I put them up merely as a means to get help. 

Already someone has kindly shown me that my daughter's laughing for no reason could be part of panic or anxiety.  True, I wondered why she says at the end, I'm shaking and my teeth are chattering.  Which is what I do when in shock.

I am struggling to understand her condition - we've been through so much, every day she astounds me with the things she does.  When she was 3 she was able to tie her shoe laces and we enjoyed times counting up to 100 and back again.  She was determined to ride a bike without stablizers at 4. She does so much yet her communcational understanding, visual cue non recognition are a constant bemusement to me.  One day, when she was 7 years old, her behaviour reduced me to sobs.  She was laughing - I looked at her with sudden acknowledgement that something wasn't right and said, 'Darling, I'm not laughing, I'm crying.'  She looked mortified.

I do hope you can all give me more insight into her condition and continue offering suggestions.  More importantly, do any of you know why she falls asleep randomly, with a skirt over her head?  Why she does some of the things on the videos?

Once I get a better understanding, the videos will be removed.

Many, many thanks for your help and support.  I by no means wish to offend anyone, I just want to understand my daughter and have a happier home.

Crystal - with the advice of her father, two days ago I put together a rota - this has helped immensely.  The thing is with this condition, it's hard not to think that she's doing things deliberately.  Everything has to be her way - this is what I struggle with.  I, myself, too am a compulsive person, I'll do almost everything spontaneously, now I am having to learn to plan.  It's a learning curve.  Oh, and sticking to the plan too.  I know, it's gotta be done :-)

Hi - I had a look at 3 of the videos.  Sorry, but I don't agree with putting her on U tube.  If it were me, I wouldn't want to be on there so anyone anywhere could view me, especially when I was upset etc.  Can I ask what allowances you make for her.  I've altered some of my behaviour over the years to relate better to my son.  My natural personality fits in with him in some ways, but not others so I've modified as best I can the bits that he would find unhelpful.  Eg:  I'm a "get up + go" sort of person but he needs a lot more time for certain things as he likes to go thru his routine.  So we stick with the routine.  Things work out better that way.  Also, even if I feel a bit irritated I try not to show it because I don't think he's trying to irritate me.  I find things like that make life easier for us both.

Of course I do.  We have an open talking policy in our house; nothing is not discussed.  However, it doesn't stop the arguments, shouting and being awkard.

Do you ever, you know, talk to her, ask her what life is like for her?