JCB

Oh my goodness. I'm completely new to this (son is 4.5 and is right at the very beginning of a dx for possible Aspergers) I've just read about PDA and my C fitted EVERY category, even more so than Aspergers. Have I got it wrong? How similar are these two? Does anybody have any experience of PDA and how it differs from Aspergers? I was absolutely convinced that was what was wrong but now I'm doubting myself. It definitely seems much more like PDA. I actually feel like I've had an epiphany!

Aargh! It should be b!

Ooh I got an emoticon instead of a oh well!

Thank you for your answers. I really appreciate the time you have taken. The type of behavior I'm talking about him 'getting away with' is things like going up and down the stairs in he correct order and making sure the biscuits he eats are whole etc etc. for example, this morning, my 3.5 year old decided she had to have an unbroken biscuit for her snack. The only reason for this is that C will never eat a biscuit that is even slightly damaged so she thinks she can do the same. I obviously didn't let her have an unbroken one and tried to explain to her why C needs to have one but I ended up with a 30 minute tantrum that I ignored. This then set C off. He runs our lives, everything has to be planned around him. We can't even go to the supermarket as a family any more. It's so hard. C is also very very violent towards others. He kicks and punches me and my husband and his siblings when he is frustrated. My youngest (the 2 year old) is becoming the same now and its worrying. What's most frustrating is that as he has no diagnosis yet, I find it difficult to know if I'm always doing the right thing with him as I have nobody to ask. I have worked with children with Aspergers so I understand to a small degree what he needs. We have noticed C was different from birth, he hated being held and hated being left in his cot/chair. We couldn't win. We have been telling various GP's and HV's over the years that something's not right but we haven't been listened to. We moved into a new area and the HV actually agreed with us, along with the nurse that visited. She, along with the GP referred us recently to the local paeds but we have 3 months to wait for this appt. the paed will see us and decide if C is severe enough to go on a 9 month waiting list for the CDC. We are looking at 18 months minimum before we get a yes or no diagnosis. I would go private if a) it wasn't so expensive and it wouldn't put me in the realms of accusations of god knows what. (yes we've had private and NHS clashes with a different medical issue in the past leading to nearly disastrous consequences - but that's for another day and another post!)

I have a terrible problem with my other children mimicking my 4.5 year old's (undiagnosed yet) behavior. I have 4 children, 7,4,3, and 2. The others all copy C when they don't get their own way as they see C getting his own way so they think it's acceptable. It's got to the point where my youngest is continually displaying the same sorts of behaviors as C did when he was 2. It's very hard to tell if there is genuinely something there or if it's pure mimicking. For example, he will 'play' with his cereal every morning in the same fashion. He has to have 2 bowls. He pours the dry cereal between both bowls for about an hour, occasionally eating some. He does this every single morning. He has an obsession with pouring. Anything he can get his hands on that can be poured, he does. He can also zone out completely. You can call his name for ages (minutes) and he will just stare and stare the other way. I'm sure he can hear fine. He will just suddenly snap out of it and come running. He also hits strangers all the time. We have never paid any attention to this behavior but it's so embarrassing in the supermarket when he just runs up to a grown up and whacks them. They don't see the funny side! He does baby baby ballet with his sister at the weekend and spends the whole entire class stiff and staring across the room. You cannot rouse him. The only time he wakes is when the teacher brings out the tambourines. He springs to life, joins in and when its over, sits back down and zones out. The other parents just look at him strangely, it's sad to see. I'm sure he is just copying this behavior from his older brother because sometimes he can be really funny and sociable (with adults) hes not yet at the developmental age where he will play properly with other children his age (he just ignores them or hits them). So my question is: do your other children copy this behavior? To what degree? How do you deal with it?

We have just the HV who agrees with us, the GP who agrees with us and a referral to this general paed. There is nobody else involved at present. I just don't know where else to go. I will take the advice though and go for a private SALT.

Thank you for your replies. The paed secretary is back next week and has a message to call me. The HV sent the referral through as urgent so apparently my son is top of the list. We shall see. Apparently this paed is the 'usual' way to get a dx of autism in my area. SHe's just a general paed and she has to decide whether to refer him onto the CDC locally. Seems a bit roundabout to me. He's not in nursery at the moment, I did have him in the nursery of the school he was due to start in September (my eldest attends this school too). They were so rubbish with him that I pulled him out and turned down the reception place as nursery and reception share the same teachers/ classrooms. The local autism support group passed me onto a local nursery who deal with autistic children but they said there's no point in sending him there as its only up to school age kids. It's too much disruption sending him there for a couple of months only. I think he really needs the input that this sort of social environment can provide, even though he won't join in with the others.

I posted on here a while ago asking for advice and got a lot of help (so thank you) We have since moved house into a new area with new doctors and new systems etc etc. My son is 4.5 and is due to start nursery in September (I have withdrawn him as he did attend the nursery there and we're rubbish). We are on the waiting list for another school so it looks like he will not start this September after all as all the schools are full. (BD10 - Bradford). There is an autistic school opening this September but they need a full diagnosis first. He displays a lot of worrying behaviours that we as parents are really struggling with. Having worked with autistic kids, I am almost certain he is autistic. Our HV actually agrees (wow we seem to have stumbled across a half decent one!) her and the GP have referred our son to the local paed to be 'assessed' we have been told there is a 9 month waiting list for this appt. Great. She has also referred him for a hearing test which is pointless as he will not participate whatsoever. I'll take him just to show them. Below is a list of his 'behaviours' we have been compiling for approx 9 months. Any views on them would be much appreciated. I filled out the PDD autism screening questionnaire http://www.childbrain.com/pddassess.html and my son scored 168 which is classed as 'severe'. My last question is a bit of a taboo one..... Has anybody got a private diagnosis that has been recognised by the NHS? I'm aware it needs to be a multi disciplinary diagnosis which we will happily pay for (to speed things up) but I don't want him to need two sets of 'tests' he won't cope with one! My long long list... Often refuses to talk to anybody but me (mum) very angry if we don't go down stairs in size order, or an order he decides won't wear pajamas unless they match in colour very angry if tv show is turned off before end credits has own set ways, very angry if we try to change anything will not wet head - bath time torture for all involved regressing with development - wearing nappies again after months of not will not dress himself - used to though often doesn't listen - conversation is one sided - keeps talking about own subject his own toys have set places - very angry and cries if not put back correctly sometimes flips between happy and sad in heartbeat - usually happy to sad when angry, tantrums can go on for hours and nobody but me can talk to him pretends he can't hear you, even if you are right next to him started to say ''what'' very often, even after repeating 5 or 6 times next to his ear inappropriate eye contact - usally doesn't make much but sometimes stares continuously and 'freaks people out' plays much better alone - can't leave unattended with younger brother and sister as can get violent will NEVER wear coat/ cardigan unless fastened correctly to the top inc. buttons and zip very active - runs in circles for an hour or more then will suddenly become sleepy and extremely grumpy becomes fixated with tiny cuts - won't get them wet at all constantly talks about them doesn't appear to feel pain or discomfort but will fly off handle at something he expects should hurt - ie play fighting with siblings can ask a question 10 different ways - eg. whose is that biscuit, who does it belong to, who owns it, who is going to eat it, etc etc. has to use correct entrance in school - will not use inside door to nursery when I am volunteering in a different class, must walk to the outside entrance if something is not done his way, he will go back to the beginning eg. if he i putting a toy away and his sister does it, he will take it out of the box, put it back where it was and put it back in the box himself corrects us often - we have to use a correct name for something or he gets angry - eg. his crocs are not shoes, but crocs and a cheesestring is not a snack, it's cheese talks to himself when alone - usually asking himself questions, when interupted, is not embarassed makes high pitched sounds for many minutes, sometimes over an hour eg. his ooo ooo ooo ooo ooo ooo noise is what he does to 'chase the clouds away' nobody can stop him continually repeats himself until he is certain EVERYBODY has heard him often refuses to eat what rest of family is eating even if it was his choice initially inappropriate contact - does like cuddles with me but often holds on to a family member's legs and refuses to let go - has to be literally prised off - just zones out asks for help to stop doing a certain behaviour eg. ''I can't stop kicking my sister, I need help to get my leg to stop'' Talks like he is much older but doesn't necessarily understand the words - uses words in their literal sense (also, it's not big, it's large etc.) Does things he likes over and over again - plays on computer on educational games for hours if left alone - often clicks on the same sequence and watches it numerous times Now refuses to join me in assembly after nursery on Friday - we have done this for months - shouts out and doesn't allow other children to pass him to collect awards etc. just sits in the way even though 200 pairs of eyes are on him Regularly wakes at night, usually before midnight. Comes downstairs frequently for no valid reason Issues at school also - eg. his teacher noticed his coat was inside out so she started to fix it for him. He went spare and said he wanted it that way. A massive tantrum ensued and he forcefully took it from her. He then proceeded to turn it back the way it was. It took about an hour to calm him down Won't eat food if it is not 'whole' eg. if a biscuit is broken in half, he won't eat it, even if you give him both halves. It must be complete and undamaged - will not eat bananas unless they are perfect, can't cut the 'bad' bit out, must be whole - won't eat apples without the stalk on the top - says they are bad if stalk is missing struggles to use toys in their correct way - e.g. will use a car as a rocket or a camera as a toy gun, will not listen if you try to tell him otherwise. gets angry when things are moved that are his - eg. questioned the whole household this morning as to who had moved his cup from the position he had left it in next to his plate - he had moved it himself but not realised - he was rather cross example of his speech - in the car last night, I wrote it down word for word as he was saying it - ''Mummy, I like to look at strawberries'' - (''Yes they are red Cal, maybe we could go and pick them in the summer?'') ''Well I like to look at the…Daddy are they called seeds or nuts?'' (''Seeds Cal'') ''They have seeds on the outside that are bumpy and I like them…well if we have a plant and it is growing and it's getting bigger and erm, there are round things on them that are growing and they are round like a hill and with a stalk coming from the top, well if it is still growing, then we could pick some off'' - he talks like this all the time, like he is missing the point of the conversation i.e. focussing on the smaller details Often forgets what he is saying mid sentence - might say mummy 5 or 6 times before he has got halfway through his sentence i.e. Mummy, well, mummy, pause.....mummy can I have, mummy....well mummy..... has a favourite film that he will watch for weeks on end - at the moment it is Meet The Robinsons loves games where he puts things inside another - eg. has a bucket he fills with toy cars and a toy house he fills with play food - his bedside cabinet must contain all his 'soft' books Will not get into bed at night unless his toys are lined up on his headboard. Will not get in to bed at all now, sleeps on floor, has done for weeks. (he has to make his own bed the way he wants, gets angry if you help him, Callum's words 'it's not the right amount of scrumples') Has become violent towards others. Strangles adults if he is not correctly understood or is in a 'mood'. Cannot control anger towards others, lashes out regularly at siblings. Getting very difficult to teach. Refuses to learn words which don't sound like they are written. ie. BOAT Callum will learn as BOWT. He will not be told otherwise even though he is extremely intelligent. Will 'conform' in new situations he is expected to conform in as long as they are not too unusual. eg. school - his nursery brushed off our concerns as he hardly displayed them in the few short weeks he was there. Old nursery witnessed these behaviours and provided 1 on 1 but did not help further. If he realises theres no way he can get away with a certain behaviour, he will change the 'parameters' so he can still cope. i.e. he might say 'yes that's what I meant' if it means he can still get his way. Is far more comfortable in the company of adults Laughs and cries for no apparent reason. eg. At a recent meeting I attended where he was the only child, the adults were laughing around the table. Callum started laughing forcibly and uncontrollably though he did not get the joke. He often does this when nobody else is laughing, or if somebody is crying, he may laugh instead. Starts most of his sentences 'don't forget'. i.e. 'mummy, don't forget there is a picture of Bambi on the wall at my new club'. despite the conversation being about something totally different.

Thank you for the welcome and thank you Kathryn, that is very good advice, I will do that Jen x

Here are some more of his mannerisms: Won't eat food if it is not 'whole' eg. if a biscuit is broken in half, he won't eat it, even if you give him both halves. It must be complete and undamaged - will not eat bananas unless they are perfect, can't cut the 'bad' bit out, must be whole - won't eat apples without the stalk on the top - says they are bad if stalk is missing struggles to use toys in their correct way - e.g. will use a car as a rocket or a camera as a toy gun gets angry when things are moved that are his - eg. questioned the whole household this morning as to who had moved his cup from the position he had left it in next to his plate - he had moved it himself but not realised - he was rather cross example of his speech - in the car last night, I wrote it down word for word as he was saying it - ''Mummy, I like to look at strawberries'' - (''Yes they are red C, maybe we could go and pick them in the summer?'') ''Well I like to look at the…Daddy are they called seeds or nuts?'' (''Seeds C'') ''They have seeds on the outside that are bumpy and I like them…well if we have a plant and it is growing and it's getting bigger and erm, there are round things on them that are growing and they are round like a hill and with a stalk coming from the top, well if it is still growing, then we could pick some off'' - he talks like this all the time, like he is missing the point of the conversation i.e. focussing on the smaller details Often forgets what he is saying mid sentence - might say mummy 5 or 6 times before he has got halfway through his sentence i.e. Mummy, well, mummy, pause.....mummy can I have, mummy....well mummy.....

Thank you, I really really appreciate the advice, the Cubs thing you mentioned made me laugh out loud because it sounds so much like my child! I think sometimes it feels like a relief when I see something that is so much like him because I know I'm not going mad! I googled those terms and it does sound very much like my child. The websites are great too, I have had a quick look and will continue to pore over the info today. We have an appointment with a GP in a couple of weeks - we had to hold out a month to see a particular one! We are going to take our list and our son with us although I expect he won't even go in the door when he realises the appt. is for him. We are also going to 'officially' broach the subject with the nursery after the half term. We have been mentioning things to them for a while and they kind of seemed receptive of the idea but they are the sort to shrug things off if it means more work. The school SENCO is also the nursery manager and she hates us. That doesn't help. The problem is is that until we started saying how difficult our son was at home, they never mentioned a word of his odd behavior at school! Thanks again, Jen

I don't have any advice re the ASD but with the FII/MBP, stay strong. We were accused of it too over something completely different - we used private healthcare and the NHS didn't agree with several diagnoses. It was HELL. It lasted 10 months and has only just ended. We felt like giving up completely. Our kids names thankfully were kept off the register as we had LOADS of proof inc. EVERY letter and test result but it could have gone a different way. I wouldn't give up trying to get a diagnosis, even if they think you are making it up. Ask for a different CAMHS person maybe? This may actually help your situation as well as your child's. If they try to take your child, they will go to the nearest family member who they don't think is 'in on it'. Good luck, my heart truly goes out to you.

Our child is nearly 4 years old (undiagnosed) and attends mainstream nursery 2.5 days a week. He has always had 'odd' behaviours and we initially thought he had SPD. After taking him to see a clueless GP, we were sent to a registrar who had never heard of it and we were dismissed. He still displays loads of SPD behaviours. He has had lots of medical problems that are unrelated. His behaviour is beginning to affect his siblings and affect him at nursery school and we have been looking at the symptoms of Autism or more specifically, Aspergers. To be honest, we really don't have a clue but my hubby called a national support group up and explained our situation - they agreed it sounds like autistic tendencies but we would like to get more opinions before braving our GP who thinks we are neurotic (something I expect most of you will be familiar with). I know strangers cannot diagnose our child but we would be EXTREMELY grateful of your opinions regardless. Here is a list of 'traits' we have been compiling, there are lots more and we add to it each day: refuses to talk to anybody but me it's not big - it's large - always uses 'different' words to that of his siblings very angry if we don't go down stairs in size order, or an order he decides won't wear pajamas unless they match in colour very angry if tv show is turned off before end credits has own set ways, very angry if we try to change anything will not wet head - bath time torture for all involved regressing with development - wearing nappies again after months of not will not dress himself - used to though often doesn't listen - conversation is one sided - keeps talking about own subject his own toys have set places - very angry and cries if not put back correctly sometimes flips between happy and sad in heartbeat - usually happy to sad when angry, tantrums can go on for hours and nobody but me can talk to him pretends he can't hear you, even if you are right next to him started to say ''what'' very often, even after repeating 5 or 6 times next to his ear inappropriate eye contact - usally doesn't make much but sometimes stares continuously and 'freaks people out' plays much better alone - can't leave unattended with younger brother and sister as can get violent will NEVER wear coat/ cardigan unless fastened correctly to the top inc. buttons and zip very active - runs in circles for an hour or more then will suddenly become sleepy and extremely grumpy becomes fixated with tiny cuts - won't get them wet at all constantly talks about them doesn't appear to feel pain or discomfort but will fly off handle at something he expects should hurt - ie play fighting with siblings can ask a question 10 different ways - eg. whose is that biscuit, who does it belong to, who owns it, who is going to eat it, etc etc. has to use correct entrance in school - will not use inside door to nursery when I am volunteering in a different class, must walk to the outside entrance if something is not done his way, he will go back to the beginning eg. if he i putting a toy away and his sister does it, he will take it out of the box, put it back where it was and put it back in the box himself corrects us often - we have to use a correct name for something or he gets angry - eg. his crocs are not shoes, but crocs and a cheesestring is not a snack, it's cheese talks to himself when alone - usually asking himself questions, when interupted, is not embarassed makes high pitched sounds for many minutes, sometimes over an hour eg. his ooo ooo ooo ooo ooo ooo noise is what he does to 'chase the clouds away' nobody can stop him continually repeats himself until he is certain EVERYBODY has heard him often refuses to eat what rest of family is eating even if it was his choice initially inappropriate contact - does like cuddles with me but often holds on to a family member's legs and refuses to let go - has to be literally prised off - just zones out asks for help to stop doing a certain behaviour eg. ''I can't stop kicking my sister, I need help to get my leg to stop'' Talks like he is much older but doesn't necessarily understand the words - uses words in their literal sense Does things he likes over and over again - plays on computer on educational games for hours if left alone - often clicks on the same sequence and watches it numerous times Now refuses to join me in assembly after nursery on Friday - we have done this for months - shouts out and doesn't allow other children to pass him to collect awards etc. just sits in the way even though 200 pairs of eyes are on him Regularly wakes at night, usually before midnight. Comes downstairs frequently for no valid reason Issues at school also - eg. his teacher noticed his coat was inside out so she started to fix it for him. He went spare and said he wanted it that way. A massive tantrum ensued and he forcefully took it from her. He then proceeded to turn it back the way it was. It took about an hour to calm him down Won't eat food if it is not 'whole' eg. if a biscuit is broken in half, he won't eat it, even if you give him both halves. It must be complete and undamaged. Will do the same with all foods [/size][/size] I wrote some more down in the car yesterday so I will add these when I go and grab it. Thanks so much in advance, JCB