Asperger's Syndrome - help!!

[endofmytether3]

My 3 1/2 yr old ds has had behavioural problems for some time. I find him difficult to deal with daily. I'm short in tone and always in a bad mood as I just cannot cope. Everyday is a battle. He is at nursery school and they too have trouble managing him although he appears worse there. he has been referred to a behavioural paed who has said that it may be emotional underdevelopement. If there is no improvement in 6mths, AS will be considered and he wil be evaluated accordingly. I have always known that he is different to other children but I could not put my finger on it.
If he has AS, i don't know how to help him now or how to manage him. He's an anxious, unhappy little boy and I feel partly responsible for his sadness. Any parenting advice welcomed!

What is he doing?

Have you thought that this is his way of telling you that he's unhappy at nursery?

It's really hard to make suggestions without knowing more about his difficulties; but I had to reply - your last sentence mirrors how I felt when DS was 3. Knowing he is anxious and unhappy without knowing what to do must be causing you heartache. Could you try to find the things he can do and praise him for those? Even if it has to be a positive comment on what he has tried to do?
What did the paed suggest you should do now? Six months is a long time for you to continue struggling.
Do you use his name at the start of each sentence to him? When I understood DS hated cuddles, we developed 'magic finger' (like E.T.!)
What makes him happy? For about 6 months at that age, DS ate,swam,slept, walked,and talked like a JCB!
Has he got somewhere he feels really safe - like a big beanbag to snuggle into? Do you keep to the same basic routines every day?
There are some brilliant MNs on here who will be able to help!

Thank you for taking the time to reply. He's very very bright and so we are always amazed by some of the things he says. We make a point of praising his good behaviour but he often responds by saying "no, i did not do well". He is quite a negative little boy. The paed has not made any suggestions yet. We have to wait for the clinical psych to get in touch now.

I think we use his name at the begining of each sentence, however I will make a point of doing it from now on. We have the same routine everyday (although it does get altered at weekends). I noticed that from infancy he seemed much happier on a routine. The strange thing is, that his is very tactile and he loves hugs and kisses. Our health visitor (HV) told me that his behaviour is often inappropriate as he likes to kiss other children and cuddle them.
Sadly, I don't know what makes him happy (except repeatedly running from one end of the kitchen to the other). It can change from one min to the next. He feels safe at home and doesn't really like going out.

We did consider that he may be unhappy at nursey, but the paed and HV told us he is happy there, although he will not join in the activities and doesn't really interact with the other children. He prefers adult company. He always wonders off on his own when the class are expected to sit together. I do not take him to any other activities anymore as he wonders off and plays with the doors, plug holes etc. The guilt for the way that I feel is often overwhelming and I feel responsible for his misery.

Please do not feel in any way responsible-if he has AS the traits are there, as part of him, and are not as a result of anything you have done.
As catok says, he will be happiest if you keep to a fairly rigid routine. If there are to be any changes to his day, try and prepare him for them-children with AS respond well to visual timetables. Perhaps you could try reading a book such as Tony Attwoods The Complete Guide to Asperger's Syndrome which gives a good general background and will help you to understand how your DS may be feeling.
The running up and down is common-my DS does it (he is 9 and has AS). He also jumps up and down and flaps his hands. These are all "stims" and are common in children with AS.

Ooh yes "no I not/no I didn't" for praise. It is so disheartening to hear them sound like they have no self esteem at such a young age DD is starting to change to accept praise now, she is happier when I say I am proud of her, rather than that she did well etc.

I have been lucky, DD thrives on the routine and rules at school/preschool so she has always been very settled there.

Brenda Boyd - parenting a child with AS is a really helpful book. I think it is going to come into its own more as we hit 9yrs and onwards, but there are lots of helpful advice bits as it is set out so you can look up how to deal with specific situations.

My paed was disappointing, he is under the impression that AS can't even be considered until they are 7 , so for the time we are just getting by accepting who she is and working with it like we would if she was diabetic and needing insulin etc, she is different and needs different things.

If your DS is happiest at home, then I would say try to stick with that as much as possible - have friends come to you etc. If you do need to get out (for your own sanity!!), then have something homey (preferably of his choice) that you can always take with you (beanbag/blanket etc) so he has that support thing. Mine is the opposite, she likes being anywhere other than home , so we spend all our time arranging places to go!

If he gets upset with the activity changing etc, then give 5-10 min warnings (with a timer if possible) - I give 10 mins, then 5 mins, then 1 min so that she knows when we're going to have to stop what we're doing etc. We have been doing it for long enough now that we don't need the timer, just the verbal warnings.

I found myself constantly rargh with her and the world in general. We then worked out that she doesn't seem to see me changing from calm to angry, she only understands when I start yelling, so we now have verbally stating of feelings - I say "I am starting to get cross" and she understands! The same with her, she used to just yell "NO!" etc over and over, but now I ask her how she is feeling, and she says "I feel cross" and it breaks the cycle and we can talk about why and how to fix it.

I don't think the guilt will ever go away - not so much that you have caused them to be like this, but that you just don't know if what you are doing is for the best.

It is a hell of a lot easier when I just accept that this is who she is and that we need to treat her differently to other children.

Oh, she is also much easier to handle if she is additive, sweeteners and colouring free! With too much processed food or anything in her system she can't control her behaviour and it upsets both of us.

MN has helped me soooo much through all this. I still have my days when I look at her and think I am wrong, and it is just my parenting, and then it all goes back.

Excellant Post Flame

I cannot believe how much procress you have made in the last couple of months.

Endofmytether, Do your sons pre school have much experiance working with children on the spectrum? Obviously im not saying that you DS has AS. But lots of the ideas suggested here work really well for NT and SN children.

When my DD was at pre school (shes now 5 and has AS) she had like a strip thing with differant activites on, she would carry it round with her along with a 5 miniute timer. When she had completed each activity she would take off and move on to the next thing on her list. This really helped her, before this she would just wonder round in circles and not really do anything.

Her pre school also used to give her a list of the activaties that they would be doing the next day. The strict routine of all this changed my DD in to a new person her, confidence seemed to almost grom overnight.

Hope this helps and Good Luck.

There are a lot of very bright people (adults and children) that have a couple of traits of aspergers, it runs a very fine line with gifted and talented. Gifted children can be very critical of themselves and the things that they can do because they want more. This type of behaviour is perfectly normal. There are gifted children who find social interaction difficult because mentally they are on a higher level and they can't understand why other children behave or play the way they do. Young children also need routine, whether aspersers or not, as this makes them more secure. This is normal behaviour, I have seen so many children that get use to having their breakfast at 8, then getting dressed, then watching the tv etc, it becomes familiar to them and makes them feel comfortable. As they get older they are more able to do things on the spur of the moment. They just need the routine when they are small. From what you are saying he is a very affectionate child, this is lovely but it will change as he gets older. If he is recieving alot of cuddles at home then this is normal for him.
My ds is a gifted child and he has displayed the same behaviour as your child. He liked to talk to the staff at nursery and prefered to spend time with them because he could talk to them and ask them questions. He likes it at home because he's occupied and feels safe. He became very bored at nursery, there's only so much painting a child can do and he wanted to learn. It sounds like your son withdraws at nursery, my ds messed around. You son would probably benefit from finding an interest to keep him occupied. Maybee learning about vehicles or animals? I wouldn't listen to the hv or paediatrician, they only spend a small amount of time with your child, you know him better than anyone else. You can move forward from here, don't feel overwhelmed, it sounds like you are doing all that you can to help him and you should be proud of what you are doing. It sounds like your child is very bright and is showing you this behaviour because he's unhappy and bored. It took me a while to pick up on what my ds needed, I thought that he was bright but wouldn't behave because he was naughty. I have learned that, although sometimes a bit odd, this is him. Take each day at a time, you will learn to understand him and this is what he needs. I honestly don't think he has aspergers but he does need support and guidance. Please email me through mn if you need any help. It's a rocky road raising a very bright child, he sounds like my ds so if there's any way that I can support you and give you me experience then I will happily do that. My ds is perfectly normal, although not in the other kid sense, he doesn't have aspergers or any other problems but is recieving help and support to help him to socialise.

Don't worry, it'll be fine.

Your aboslutley right Avenanap the traits for a very gifted person are alarmingly similar to AS.

However a massive percentage of people with AS are also gifted in some area.

This makes interesting reading.

www.gt-cybersource.org/Record.aspx?NavID=2_0&rid=11381

Avenanap gosh I cant tell you how happy I amreading your post it has put my mind at rest. My ds is 3 he will be 4 in july he started nursery last september. Teachers have asked me to get him a referral he has always been very bright and is far ahead of his peers however he is struggling socially with other children. He communicates well one to one with adults but struggles with his friends. I have mentioned to nursery that I think he is bored the teacher said they were doing something the other day about pairs my ds did the task within seconds but got really angry with himself because his friends couldnt do it. He is a very lively little boy and I started to think of the aspergers, adhd lines but maybe he is gifted. That is food for thought.

It's recognised that social skills do not come easily to some children, I don't think that this means they have aspergers though. My ds has for many years been socially inapt, he can be rude and thoughtless however last night he asked me if he could raise some money for children who have autism after reading about them in a magazine. They are having a school disco next week, the last one he attended he ran around and pushed people over. He's told me that he won't do this because he does not want to hurt a younger child if he bumps into them. He has found social situations really hard, not because he has aspergers, but because he thinks on a different level and he has not picked up the rules of making friends, patience, playing etc as quickely as others. He's a happy child who will play with everyone and he didn't understand why children will be best friends one day and then will refuse to talk to their best friend the next. He'd nag people to play with him because he thought they would change their mind. Once things were explained to him and he understood he's not had this problem again.
I brought him a book (the unwritten rules of friendship) which was very kindly recommended by another mnetter (thankyou, it's helped so much). I've read bits of the book to him and done some exercises. We only recieved it on Monday and his teacher is already commented on how much effort ds is making to get along with people. Just because some children find social skills hard it does not mean anything is wrong with them, they just need a bit of help and support. There is a very fine line between aspergers and being gifted, you need to look at the child at home with the family, not just how they are at school or nursery. You need the whole picture to be able to say that they have aspergers. Try the book, if it doesn't help then you know that they have problems that you need professional help with. If I'd have known about the book my ds's social problems would have been solved along time ago, it goes into what behaviour annoys people, what signs people show when they are annoyed, how to help a vulnerable child etc.

As to the gifted but unhappy, find an area that the child enjoys and encourage them to go with it. My ds loved books. By 14 months he knew the alphabet and could recognise the letters out of sequence. He was always bringing books to me so that I could read them so I taught him to read, it took 10 minutes, he was 3 and a half. They have brought him so much joy and I'm pleased that I did this. I know that he was young but if he had not have picked it up so quickly I would have left it a while until he was ready. He has always asked questions, his vocab has always been fantastic. His general knowledge is outstanding because of all of the books that he has read. I try to balance this by encouraging other activities, music and sport. When a gifted child is bored that's where the probelms occur. My ds became disruptive and depressed, others become shy and withdrawn. They can be critical about themselves and appear odd to their peers because of their level of knowledge and vocab. Try the book.

avenanap-Having Asperger's does not mean you have "something wrong with you". And as has been pointed out, many children with AS are also gifted. There is nothing wrong with getting a diagnosis!

I wasn't implying that. I'm just saying that the two can be closely related and that not all children are born with good social skills, some have to be taught them. A diagnosis doesn't always help as children can end up with the label of special needs. All other avenues need to be looked at aswell.

I really feel your attitude is a bit negative here. I do not see anything wrong with the label of special needs if it means the child gets the help he or she needs. My child has AS and is several years ahead of his year in Maths. He is still classed as special needs.

Quote Avenanap,

There is a very fine line between aspergers and being gifted, you need to look at the child at home with the family, not just how they are at school or nursery. You need the whole picture to be able to say that they have aspergers.

The things is with Aspergers, it is very often a case of now you see it now you dont. My daughter has no problems at home. Obvouisly she can be herself and we all accept her quirky ways, so much so that we dont really notice it.

This why as a parent it is a very difficult choice to make when diciding wether or not to get you child assessed.

If i child displays AS traits at school/nursery and this is a problem for them, then it needs to be assessed by a professional.

Most adults who have not recieved a DX until adulthood, say that had they had know about there AS as a child it would have helped them cope better. So personally in my opinion i dont think holding back on getting a DX is doing a child any favours.

Tiggiwinkle, The reason why my DD was first placed on the SEN register was due to her giftedness.

Personally i think that giftedness is a special needs lable.

my ds was on the register aswell because the teacher had to do extra work for him. All I'm trying to say is that sometimes behaviour problems can be down to other things, not because a child has special needs. If a dx helps that family then go for it, I'm just aware that some parents become deeply upset when this is mentioned because of one reason or another. Surely a dx should be one of the latter options once other things have been tried?

The thing is as has parent of a child with SN, i just knew from very early on that she was differant.

For me the not knowing was the hardest thing, you can only take so much of your child being rejected by their peers. And odd look while out shopping. I now dont give a toss what people think. For me knowledge is power.

Getting a DX for DD has been a very positive thing for our family and for her. Without it she would have been labled the clever disruptive child at school. Because she has a DX various outside services have been made available for school. The TAs have all been on an ASD training corse. Her school now have a better understanding of AS and things are working out really well so far.

Hi twocutedarlings,

Being very clever is grounds for SSEN too.

avenanap-but you are still in essence saying that a dx is a negative thing. It does not change a child-or your feelings for him-to get a diagnosis. It just helps you and others to understand his behaviour. Also, it can really help the child concerned to understand why thay are different. If he has AS, then what is wrong with knowing about it? If he does not have it, he will not get a dx anyway.

"special needs" is not a bad thing... it is exactly what it says - these children are not broken, they just have different/special needs to other children.

Oh dear I do think that avenanap wasnt being nasty but just making a point. I have been told to get my ds a referal as he is lively and not very good socially. I feel sad as school just said go and see your gp there is no support there at all. It is nice to see everyones views those who have children with special needs and those without. Do you find that when you had a referal you had to go it alone ?

It just feels like she is saying that you want it to be anything but AS, that it should be the last thing you should possibly accept.

The best route is to look at everything all at once, not turn to AS after trying every other name first, but that time precious time has been lost, and self esteem with the child not knowing what is wrong etc.

Many people seem to be against "labels". Me, I'm all for it - it is not about being ill (which the term diagnosis always makes you think "I have been diagnosed with cancer" etc), but about just understanding that you are part of the group of people who's brains/bodies work in x way rather than y.

Thank you for all your messages. I have sat and cried while reading them.

I am trying to accept that he is what he is, special needs or not. Although at school they are only willing to help him if we have a report from a profesional. Until that point, he will be considered disruptive, no matter how bright he is. I will accept help from anyone willing to give me it. But I don't want sit and nibble biscuits 'talking' about it. He is known at preschool as the bright disruptive child.

He loves books at home but hates them at school. He wants to plat with other children but when he tries they always seem irrateted with him and that makes him quite cross with me, because he doesn't understand why children don't want to play with him. That then pushes him into his one little world.

I have an appointment booked with a cranial oesteopath next week (more money!). I will do anything I can to try and make him a happy little boy.

Has anyone heard of ABA therapy? Apparently it is very effective but costs around £19K in total!!! Maybe he doesn't have AS but I feel I can't ignore the signs, just in case. I feel as though the professionals have just left me to it now. I think that's probably why I feel so lost.

with school! I have been so blessed with mine who just listened to what I said, and asked how best to handle her.

School aren't being helpful. I had a meeting with the DH. Who promised a follow up. I heard nothing so I chased her. The follow up was given by his ds' teacher in the form of the traffic light system. I feel as though we are going nowhere