Asperger's Syndrome

[LKC]

Our eldest daughter has just been diagnosed with Asperger's Syndrome (and high IQ), and I wondered if any of you knowledgeable people out there could point us in the right direction of any support groups or anything in NSW. I know there are a few PIO members who have worked in this area. We are PR now, and I know that there isn't much in the way of help out there for her at school and so on, but I wondered if there might be any informative websites/forums/local groups which might be helpful from a parenting support point of view. I have some books, and we will be seeing a specialist psychologist after the New Year, and I have googled a bit, but I would rather have personal recommendations.

 

I can't say that her diagnosis has been a bolt out of the blue, because it hasn't. I had a feeling that she had autistic tendencies probably two years or more ago (she is six), but I mentioned it to my mil and she poo-poohed the idea so I put it to the back of my mind. She was bullied at school this last year, and as a consequence developed obsessive compulsive/anxiety behaviours. When we saw the psychologist she recommended assessment for Autism because she felt that the anxiety was secondary to an underlying cause and that the bullying was as a result of a social developmental problem. I am not upset or anything, just relieved that it is something we can deal with, if that makes sense.

 

Anyway, sorry for rambling! If anyone does have any information, or if there is anyone out there who has experience at parenting an Asperger's child I would be most grateful for the help.

 

Cheers!

[Johndoe]

Makes sense to me chook. Nothing's changed..................your daughter is still your lovely little girl, despite getting a dx.

 

Girls have been notoriously difficult to dx in the past as their behaviour is not as much "out there" as boys............no different that NT kids I suppose

 

This website should give you a lot of help and there is a section dealing specifically with girls in the 2nd column. http://www.tonyattwood.com.au/

[LKC]

Makes sense to me chook. Nothing's changed..................your daughter is still your lovely little girl, despite getting a dx.

 

Girls have been notoriously difficult to dx in the past as their behaviour is not as much "out there" as boys............no different that NT kids I suppose

 

This website should give you a lot of help and there is a section dealing specifically with girls in the 2nd column. http://www.tonyattwood.com.au/

 

Thank you! I have one of his books but I hadn't realised there was a website too. I'll have a look on there now.

 

I did read somewhere that girls are more difficult to diagnose because they are good at copy-chatting, so they can copy social behaviour even if it is a mystery to them. I am not sure that we would have got a dx had she not been bullied, so in a way I am thankful that we caught it early.

[Johndoe]

Thank you! I have one of his books but I hadn't realised there was a website too. I'll have a look on there now.

 

I did read somewhere that girls are more difficult to diagnose because they are good at copy-chatting, so they can copy social behaviour even if it is a mystery to them. I am not sure that we would have got a dx had she not been bullied, so in a way I am thankful that we caught it early.

 

She'll be right (as they say here). It was actually one of Attwood's team that dx'd my son. One of my friends has 3 girls and the only way that she was "alerted" to the youngest being aspergers was the difference in behaviour between the three. The two oldest interacted fine, but the youngest didn't. There was no behavioural problems other than this, but it would have been likely that if the mother hadn't found early intervention, then the girl would develop problems when she got to school as the other kids would pick up on her being "different"

 

Big hugs :hug: I know how hard it can be to find out that your child is being bullied. I don't have to tell you that the school needs a "flea in their ear"

[Fisher1]

Hi LKC

 

Sorry to hear about your child being bullied - its really awful when that happens.

 

I dont have a chld with Aspergers but I am a retired a teacher (4-6 years) and have taught children with Aspergers syndrome. The most recent was identified, as with your little girl, because of bullying. I noticed (thank goodness) that another little girl was sort of 'homing in' on this other child, a few weeks after they had all started school. The little girl with aspergers had been very quiet and quite withdrawn but this can often happen during the first few weeks, and it doesnt do to go tilting at windmills. It soon became clear that all was not well and the parents and I worked together to sort out the best way forward for their child.

 

The most important thing is to get an appropriate educational programme for your daughter and stay alert for bullying, which can often be a problem if children have special needs. I wish you well for the future which can, given the right help, be bright.

[LKC]

She'll be right (as they say here). It was actually one of Attwood's team that dx'd my son. One of my friends has 3 girls and the only way that she was "alerted" to the youngest being aspergers was the difference in behaviour between the three. The two oldest interacted fine, but the youngest didn't. There was no behavioural problems other than this, but it would have been likely that if the mother hadn't found early intervention, then the girl would develop problems when she got to school as the other kids would pick up on her being "different"

 

Big hugs :hug: I know how hard it can be to find out that your child is being bullied. I don't have to tell you that the school needs a "flea in their ear"

 

It is funny that one of the things that took me to the psychologist was the difference in how our two girls played. Charlotte (youngest) plays with dolls in what I would call a normal manner. She has tea parties with them and takes them shopping, and sort of holds conversations between them. Sophie never did that. She would either be reading, or pretending to be something (horse, bird, cat etc), or would be asking for more and more information from me about dinosaurs or planets. If I suggested that we made a space rocket out of a washing up liquid bottle, a-la Blue Peter, she would want to make a scale replica of the international space station! Same with fossils and dinosaurs, so totally immersed in finding out interesting facts! These things became more apparent as Charlotte got older and started doing 'normal' things. Sophie makes noises, and hand-flaps, kind of a form of stimming I guess, she is clumsy and uncoordinated, has poor handwriting but exceptionally high IQ, has problems with social integration and prefers her own company.

 

I think the worst thing for me is that I could see my amazing daughter be so badly affected by this bullying, that she stopped any sort of effort at school and developed these OCD-type behaviours. The teacher, in her assessment, said that she felt that Sophie, whilst highly intelligent, was pretty much the least motivated of the children in her class and that she seemed sad. She has a happy home life, but to see her unhappy at school was heartbreaking.

 

The school has been good about the bullying, there were seven children in the class bullied by this same child in the end, and I have been assured that it has been dealt with and that she will be in a different class next year.

[LKC]

Hi LKC

 

Sorry to hear about your child being bullied - its really awful when that happens.

 

I dont have a chld with Aspergers but I am a retired a teacher (4-6 years) and have taught children with Aspergers syndrome. The most recent was identified, as with your little girl, because of bullying. I noticed (thank goodness) that another little girl was sort of 'homing in' on this other child, a few weeks after they had all started school. The little girl with aspergers had been very quiet and quite withdrawn but this can often happen during the first few weeks, and it doesnt do to go tilting at windmills. It soon became clear that all was not well and the parents and I worked together to sort out the best way forward for their child.

 

The most important thing is to get an appropriate educational programme for your daughter and stay alert for bullying, which can often be a problem if children have special needs. I wish you well for the future which can, given the right help, be bright.

 

Thank you so much. This 'homing in' is what seems to have happened. Soph will come home one day on top of the world because this girl was friendly to her and allowed her to play, and devastated the next because she has taken everyone away and left her on her own. I have tried to help her to understand that a true friend wouldn't do this, but she just can't see it. It is like this girl is laughing at her, but Sophie can only see the fact that she is laughing and assumes that she is laughing with, if that makes sense.

 

I am 100% motivated to support and guide her and give her the tools to live a relatively 'normal' life. She is a wonderful little girl, and I am so lucky to be able to call her my daughter.

[milliem]

Hi LKC

 

So sorry to read what you are going through. I would like to help if I can and feel free to pm me with any questions. I have been where you are right now and it is so hard to watch your child be treated differently or singled out.

 

My son is now sixteen but was diagnosed with Asperger's at quite a young age. One of the pioneer psychologists in the Asperger's part of the spectrum is Lorna Wing, so if you google her, plenty of information should come up.

 

I just wanted to say I know it is hard right now but it will become much easier as time goes on. Because they are high functioning the children become very good at learned behaviour in terms of social skills. They come to know what they should say at the appropriate times and as such, the differences between them and their peers are much less noticeable. They do learn to deal with things having alternative meanings / metaphors etc. For example, years ago if I told my son to 'hop out' of the car at the school gate, that is exactly what he would have done. Now he knows I just mean 'get out'.

 

I know what you mean about the compulsive behaviour. My son used to jump up and down a fair bit whenever he got a spare minute. He used to say it made him feel relaxed. I don't know how because he would sometimes do it for so long his face would be beetroot red. When he got a little older, I just started to tell him to leave the jumping until there wasn't anyone looking. Over time he did it less and less.

 

I decided way back when that as long as he is happy in his surroundings, I don't care about much else. He is high functioning but has problems accessing the curriculum. I don't worry about him because I know he will find his niche sooner or later. I wouldn't want him to change one bit.

 

I am also a teacher. With the bullying thing, get right on top of the school because this should be nipped in the bud. The school should have an anti-bullying policy. (hmm, for what it is worth) Ask to see it and call them out on it. Make them explain what steps they are taking to make sure your daughter is protected and get them to report to you regularly. It sometimes helps if they are allocated a buddy - a responsible peer to watch out for them or that they can go to with a problem. A place to have some peace and quiet during the day helps too. They need to sort it because when the teens come along, they can sometimes become a little withdrawn.

 

If you want to know anything at all or I can help with anything just pm me.

 

Millie x

[NowPerth]

Hi LKC, I'm really glad that you have a diagnosis as it means that you have a starting point. You know reasonably on in her life and have plenty of time to learn about the condition. The better you understand it, and the better she understands it as she grows up, the better she will be able to cope with the challenges and differences involved. It helps for you to understand how she thinks and feels and reacts, and for her to understand when she is a bit older about how others think and process things differently. I wish I had known about it a lot earlier on in my son's life.Removing the mystery for her as to why other people react the way they do is helpful. It's great for you to be able to explain the social 'rules' that other girls develop automatically in order to fit in. Things like noticing new clothes and haircuts and paying compliments. Being able to predict how she will react to situations and how to make things less stressful in advance is a huge benefit. I hope you find a local support group, and also a forum where you can learn from others and share your experiences. The more insight you gain, the more you understand.The great news is that people with 'high functioning' aspergers so often go on to acheive great things. They often start off not noticing they are any different, then have a growing awareness and discomfort about it, and then embrace it and become proud of who they are and their amazing skills.I've just read that back to myself and can't decide if it's unhelpful and rambling. Anyway, best of luck finding a support group.

[LKC]

Thank you both for your kind words. I am sure that things will work out just fine. I am very motivated to help her, and I have a couple of books and websites to work through for advice now. I feel pretty relaxed about it, at the end of the day it is what it is, and all we can do is deal with it. There is no point in being upset about it, that doesn't help anyone.

[pablo]

Cant help tbh LK,others like Millie have anyway,just wanted to say,all the best,and i hope everything works out for you and yours,thats all,tara for now

[Johndoe]

Sophie makes noises, and hand-flaps, kind of a form of stimming I guess,.

 

Jake has always done this but has developed enough social skill to only do it in private. He also, on occasion, places his head/eyes really close to corners of walls whilst doing it, which, when he was younger, resulted in a few bumps on his forhead. I haven't seen it written anywhere, merely documented that 'stimming" (self-stimulation), is a "comforter" but I firmly believe that it is much more than that, which is why we have never tried to get him to control it. I believe that it also serves the purpose of "firing up the neuro transmitters" something akin to EMDR (Eye movement de-senstitisation reprocessing)......................accelerates his thinking so to speak. His explanation of a situation or whilst even talking conversationally has always been "laboured" ie his mouth isn't in synch with his brain.............he is thinking what to say but saying it is often delayed. It isn't when he has just stimmed............almost like the stimming has made his speech "more in tune" with his thinking so that there is no hesitant speech and conversations are more normal. He Stims mainly when he is thinking about a problem or trying to analyse what has just happened, which seems to bear out that he is somehow "trying to get his brain to work" (his words) and he has actually said so.

 

A note regarding IQ tests. When Jake was assessed he was actually only one point off being dx'd as "intellectually impaired" something which I disputed. IQ tests are geared to NT's (neurotypicals) and as such, are sometimes not suited to "logical thinkers" One of the questions related to a step ladder with two rungs missing. The illustration was of an old fashioned stepladder with rungs only on one side, something which most kids would never have seen, as nowadays they have steps on both sides. Jake pointed out that there were no steps down one side, which of course, was evident but not the correct answer. Another question was an illustration of an elephant,(on land) whale, frog, fish, turtle (in water)............he picked the elephant, (correct) but he was marked as wrong because he didn't pick it because the others lived primarily in water but because it was the only one with a "long nose" :laugh:

[Guest littlesarah]

I can't offer experiences of having a child with Aspies, or of having it myself, but I do have experience of working with people who have it. One of them was actually a health care student (who now works for the department where I met him on placement). He wasn't diagnosed until he was in his 30s, and the road to being diagnosed had been very rocky and painful - he'd got a first class honours degree in bioengineering but had been fired from every job because he took too long and had difficulty communicating appropriately with his colleagues. However, by the time he'd been diagnosed and made his way into a health degree, he had developed conscious, learned behaviours and strategies. Straight away he'd introduce himself and explain that he has Asperger's, and how it affects his behaviour. I remember him telling me "if you make a joke, or say something sarcastic, I probably won't get it".

 

He'd learned to identify how Aspies affected his behaviour, and ways to modify his behaviour to fit in with 'convention', and I loved that he was so direct in addressing those areas in which it was harder for him to consciously adapt his behaviour - here was clearly an extremely intelligent man, and it was great to see him interacting with patients. As far as I know, he still works for that department (we were really impressed with his attitude and enthusiasm), and I'm sure is doing valuable work with colleagues who appreciate his open and honest attitude.

 

Anyway, I know that story isn't really of any practical help to you right now, but I just wanted to let you know that superior intellect can overcome some of the boundaries that Aspergers may seem to impose; and in the case of this man ultimately led him down a path to a fulfilling career in a sector that appreciates his innate qualities and will work with him to support him in his work. This in spite of his lack of diagnosis for so long.

[LKC]

I can't offer experiences of having a child with Aspies, or of having it myself, but I do have experience of working with people who have it. One of them was actually a health care student (who now works for the department where I met him on placement). He wasn't diagnosed until he was in his 30s, and the road to being diagnosed had been very rocky and painful - he'd got a first class honours degree in bioengineering but had been fired from every job because he took too long and had difficulty communicating appropriately with his colleagues. However, by the time he'd been diagnosed and made his way into a health degree, he had developed conscious, learned behaviours and strategies. Straight away he'd introduce himself and explain that he has Asperger's, and how it affects his behaviour. I remember him telling me "if you make a joke, or say something sarcastic, I probably won't get it".

 

He'd learned to identify how Aspies affected his behaviour, and ways to modify his behaviour to fit in with 'convention', and I loved that he was so direct in addressing those areas in which it was harder for him to consciously adapt his behaviour - here was clearly an extremely intelligent man, and it was great to see him interacting with patients. As far as I know, he still works for that department (we were really impressed with his attitude and enthusiasm), and I'm sure is doing valuable work with colleagues who appreciate his open and honest attitude.

 

Anyway, I know that story isn't really of any practical help to you right now, but I just wanted to let you know that superior intellect can overcome some of the boundaries that Aspergers may seem to impose; and in the case of this man ultimately led him down a path to a fulfilling career in a sector that appreciates his innate qualities and will work with him to support him in his work. This in spite of his lack of diagnosis for so long.

 

Thank you for your story. It is funny that I see certain elements of your colleague in my daughter. She seems to find it difficult to communicate certain things to me, for example if she wants something she just comes to me and looks at me. I have to ask her to remember to use her words. She has an encyclopaedic knowledge of certain things, and she absolutely loves to make lists of facts and things (she makes little booklets, for example a 'Book of Carnivores' will have drawings of a lion, tiger, wolf etc on the cover, and will contain a handwritten list of the names of all carnivores in it which she has researched from the internet or my zoology books), but she takes the things that I say literally, and doesn't understand jokes at all. I am hoping that if we can firstly increase her confidence and self-esteem, we can then (with the help of the psychologist and her teacher) work on some coping strategies to help her with making friends and so on. We haven't told her much about AS yet, although she does know that she went to see a special doctor for some tests, obviously. When we do, I think we will probably take the same approach as your colleague and be open about it with other people.

[Chortlepuss]

I have a child with Aspberger's and high IQ. I was constantly worried for her as I didn't understand her condition - The organisation Minds and Hearts in QLD did a great job in diagnosing her, and educating us. She is now at a high performing school studying maths and sciences and is in her element - there are a lot of high functioning aspbergers at the school, many of the pupils never felt they belonged properly in education before they attended. Her social skills (at aged 15) are getting much better, as she is learning to interact more. I can now envisage an independant life for her, as her skills grow and she matures. I wish I'd known more about the condition, it would have saved me so much angst in her younger years, she didn't have any friends till she was in her early teens (and has no close friends now), but the main thing was this really doesn't bother her. I have to say that with the right support and finding an appropriate educational for your daughter, it will get better.

[Johndoe]

The main thing to remember is that your child is an individual and no matter how much you research to help you better understand your child, they sometimes confound the so-called "experts" and indeed, their parents. You must never lose sight of that individuality and not see them purely as an Aspie, thereby expecting to see your child exhibiting all, or many of the diagnostic criteria.

 

It is stated that they lack, or struggle with empathy which isn't true in many cases. We were watching "Castaway" (the Tom Hanks movie) and it was the scene where Mr Wilson was drifting away and Hanks was struggling with deciding what to do. I looked across at Jake and tears were streaming down his face. To console him I said, "don't worry Jake, it's only a coconut" to which Jake repled, "It may be a coconut to you but Tom Hanks has invested so much of himself in Mr Wilson that it's like he's losing himself" He was only 7 or 8 at the time and I was gobsmacked! Even the word "invested" had me wondering what went on in that loveable funny head of his :laugh:

 

It's marvellous to hear of those who manage to "fit".......................square peg/round hole............... but we must also be aware that although some Aspies manage it, to their benefit and not detriment, that there are also those who, in striving to fit into that round hole, do so at some considerable expense to their mental health. We decided long ago that we would never "push" Jake into social situations that he wasn't comfortable with, and that it would have to be he, who chose. He has no friends (other than us) and that is his choice and he is happy with it...............it allows him to do his own thing. He has very high morals with very few grey areas so we often advise him that not everything is black and white. Despite that IQ rating of one point short of intellectually impaired, he is almost savant in remembering detail with regards to music, route planning, pop trivia, and he was kept on at school as a teachers aide because he had been so sympathetic/empathetic in mentoring other kids with disabilities.............something that we weren't even aware of until the school told us when they offered him the job. Also Aspies are often "deeper" than we think as they rarely let us know what they are thinking.

 

One other thing, I never tell anyone that Jake is Aspie. I tell them that he is Autistic (on the autistic spectrum) TBH, I am not yet convinced that Aspergers is even a bona fide condition or whether it was something "concoted" by **** Asperger to keep high functioning autistics out of the gas chambers. There is a tendency to think of Aspies as always high functioning and this may not be the case. Jake has days when he appears to not be functioning at all, except in the state of an 8yr old (he's 19). Just as with us all, he has "off days". I have met other aspies who are articulate and unrecognisable from a NT person and yet, when next I met them, they were far from it....................so......................to summarise, a lot may be expected of Aspies when on an off day, they may not be capable of delivering. If they are thought of as being on the autistic spectrum disorder.........A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum............. then they may be better understood when all is not going as well as expected.

[LKC]

The main thing to remember is that your child is an individual and no matter how much you research to help you better understand your child, they sometimes confound the so-called "experts" and indeed, their parents. You must never lose sight of that individuality and not see them purely as an Aspie, thereby expecting to see your child exhibiting all, or many of the diagnostic criteria.

 

It is stated that they lack, or struggle with empathy which isn't true in many cases. We were watching "Castaway" (the Tom Hanks movie) and it was the scene where Mr Wilson was drifting away and Hanks was struggling with deciding what to do. I looked across at Jake and tears were streaming down his face. To console him I said, "don't worry Jake, it's only a coconut" to which Jake repled, "It may be a coconut to you but Tom Hanks has invested so much of himself in Mr Wilson that it's like he's losing himself" He was only 7 or 8 at the time and I was gobsmacked! Even the word "invested" had me wondering what went on in that loveable funny head of his :laugh:

 

It's marvellous to hear of those who manage to "fit".......................square peg/round hole............... but we must also be aware that although some Aspies manage it, to their benefit and not detriment, that there are also those who, in striving to fit into that round hole, do so at some considerable expense to their mental health. We decided long ago that we would never "push" Jake into social situations that he wasn't comfortable with, and that it would have to be he, who chose. He has no friends (other than us) and that is his choice and he is happy with it...............it allows him to do his own thing. He has very high morals with very few grey areas so we often advise him that not everything is black and white. Despite that IQ rating of one point short of intellectually impaired, he is almost savant in remembering detail with regards to music, route planning, pop trivia, and he was kept on at school as a teachers aide because he had been so sympathetic/empathetic in mentoring other kids with disabilities.............something that we weren't even aware of until the school told us when they offered him the job. Also Aspies are often "deeper" than we think as they rarely let us know what they are thinking.

 

One other thing, I never tell anyone that Jake is Aspie. I tell them that he is Autistic (on the autistic spectrum) TBH, I am not yet convinced that Aspergers is even a bona fide condition or whether it was something "concoted" by **** Asperger to keep high functioning autistics out of the gas chambers. There is a tendency to think of Aspies as always high functioning and this may not be the case. Jake has days when he appears to not be functioning at all, except in the state of an 8yr old (he's 19). Just as with us all, he has "off days". I have met other aspies who are articulate and unrecognisable from a NT person and yet, when next I met them, they were far from it....................so......................to summarise, a lot may be expected of Aspies when on an off day, they may not be capable of delivering. If they are thought of as being on the autistic spectrum disorder.........A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum............. then they may be better understood when all is not going as well as expected.

 

Thank you. It is so good to have the insight of people who have been through this. Gives plenty of food for thought. On the report from the psychologist she did say that as of next year, Aspergers is going to be renamed Autistic Spectrum Disorder, so I would say that they are coming around to that way of thinking, that AS and Autism etc are more of an infinite spectrum of disorders rather than distinct ones with definite diagnostic criteria.

[NowPerth]

When it was explained to us, we were told that a number of things could contribute to a diagnosis of autism. That high functioning Aspergers together with ADHD would indicate Autistic Spectrum. Asperger's on its own may not imply autism.

 

Our son worked his way through a series of repetitive noises and movements, and they would gradually change from one to a new one and last for about 6 months. He was in his early teens when he realised that it was best not to do it in front of his friends and it was reserved for when he was around family. Learning an instrument can be very helpful in terms of channelling this energy and 'relaxing the mind'. It gives it something to focus on, it's repetitive and it follows logical rules. His new Aussie friends don't know about his claps and whoops because they've never seen him do it.

 

One of the things that has affected him most is not being able to read people's body language or mood. It used to drive us nuts and has also got him into all sorts of strife. Most children know when they are pushing someone too far, taking a joke too far or when someone is about to blow. My son could never tell when to stop. This led to stress in school (he would push his teachers too far and not stop when told repeatedly) and also, on a number of occassions, to him getting thumped. He would tease someone or wind them up a bit, then not stop. He'd keep going until eventually they blew and hit him. Them he would consider himself the victim because they had struck first. He could never see that his actions played a part. This is one of the areas where 'social rules' have to be explained and learnt where other children just understand naturally.

[Kapri]

I am a CAMHS nurse therapist. If anyone has any specific questions about ASD, I'm happy to help.

 

A good book for older children is "I am special" by Peter Vermeulen.

[Kapri]

 

I did read somewhere that girls are more difficult to diagnose because they are good at copy-chatting, so they can copy social behaviour even if it is a mystery to them. I am not sure that we would have got a dx had she not been bullied, so in a way I am thankful that we caught it early.

 

Yes, that's right. And also other girls are more willing to "mother" ASD girls which means they can be included in social groups despite not understanding some of the social interactions.