westie

any forum discussing any topic can have people posting who have great differences of opinion. I think that as long as moderators are aware and remove anything that flouts the rules of the forum,and posters bear in mind that others may not be of same opinion then what is the problem. Likewise with unqualified part, as long as owners/ moderators are not posing as experts or something/ someone that they are not again I can't see what issue is. I cant see why an NAS run forum would be so different. Academics in the field have their difference of opinion on autism and other topics, so the fact that the forum "belonged" to the NAS would not really alter this...... just my opinion, feel free to disagree I won't hold it against you.....

Sharon, thanks for your reply. Which type of ADHD does yr son have - the mixed type, inattentive or hyperactive/impulsive? I thought a long time ago about medication to help his behaviour but never actually got to discuss this with a professional (our local CAMHS do not recognise or treat PDA, last yr got referred to another service who initially mentioned looking again at diagnosis, but decided not to - I never mentioned all the stuff I posted it was about behaviour he was referred and thats all I talked about though I did fill in a few checklists which I am sure would have highlighted the things like organisation bad etc.... perhaps they never looked at them, or took them as all part of PDA/ ASD??) I also have same thoughts as you about medication - re it allowing other interventions to work because it is helping them to calm/ be more attentive. As to whether they would be manageable later on when you have taken them off it who knows, fingers crossed. There must be adults who were medicated as children and are not now.... Some info. I read suggested that medication in many cases meant children were less likely to turn to illegal substances later on in life as a way to deal with their condition and its effects on their life. I found this quite reassuring. Are you using particular behaviour approaches with him, or trial and error? Imagine its a bit harder with him being older now! Am dreading James becoming a teenager!!! (suppose a lot of parents do, having been there themselves ) What about his other symptoms such as the disorganisation? Has that improved? Or are you working on "major" thing first - i.e. behaviour? before looking at other things? Sorry to ask so many questions! Know you have posted a thread yrself so know you have other things on yr mind. I always think posting your thoughts/ worries etc on a forum like this with other parents sharing same/ similar issues helps me, hope you find same. there are plenty of people on here who give useful advice and support to others thats why i keep posting!!

My son (age 10, diagnosed PDA) has over last few months improved so much in terms of reduction in aggressive behaviour, controlling his temper more and behaving better in school and he seems to be much happier nowadays. A number of things may have contributed to this (new teacher, mum at home now, some work at home relating to anger management, behaviour chart at school - not needed now ) WE are SO pleased with this (and as ever hoping that it continues!) However I do have some other concerns about things which I am not sure are PDA/ ASD related or if its something else as well (ADHD?) .I have listed a number of things about him below (would say they are centered around organisation, think some points may also fall under "executive functioning") and I wonder if any others have noticed similar traits in their PDA children/ themselves? 1)I have to prompt him to get dressed, and remind him to wash/ brush teeth each morning or evening. 2) He often rushes out of the door in a morning forgetting his lunch/ bag/ coat/ pe kit and myself to walk him there - he is focused on going to school but forgets all the things he will need in the day 3)If you speak to him it often appears he is not listening. 4) He does not sit still even when on pc or watching tv he constantly fidgets. He is same in school and the teacher overlooks a lot of it if it is not disrupting the others too much (I think if she pulled him up every time he would have been banned from the classroom. I have seen this for myself as I go in to help the children in the class once a week) 5) He takes off his coat/ shoes/ any other clothing he does not want to wear as soon as he walks in to the door and drops it on the floor and goes off to do whatever. This is same whatever he is doing, as soon as he loses interest it is abandoned. 6) He loses money, and other things that you would think are important to him 7) His bedroom is very untidy If you ask him to look for something he can never find it even when its under his nose, and he appears to have no idea on how to make a logical plan to start searching for it. 9) After much effort on both our parts homework that he does finish often does not get handed in (and I have to stand over him and help him to make sense of it and keep him focused on finishing - I know the reluctance to do it is part of PDA) 10) He often leaves items at school such as PE bag, homework, shoes. 11) His mind is often focused on his obsessions (at the minute army, lego, bionicles and Bakuman) rather than what he needs to do 12) He is just starting to get the hang of telling the time 13) If he wants your attention he will be really obvious in your face no matter what you are doing and he often puts his hand up or shout out when he does not know the answer to a question Part of his objectives on his statement are to work on these skills at home and school, but I do not have any bright ideas as to how (other than telling him each time, and to be honest I am getting fed up of hearing my own voice ). I have stuck up visual charts for weekday morning and evening routines - one of each in his bedroom and also the morning one in the kitchen, so he sees it before he runs out on me for school. Can anyone help with other ideas that do not involve so much verbal prompting/ reminding from me or the teacher?? Do you think more visual aids will help or will he just learn to ignore them?? Any books you can recommend? Is it worth pursuing an assessment for ADHD? Would medication help with these things or are the other strategies enough in themselves to work therefore meaning a formal diagnosis not necessary to help him... Am worried about how he will cope in secondary school, and if he cant his behaviour will deteriorate again...

wow it must be so hard, but think you are doing all the right things. You sound like a really good parent. Hope the hangover has cleared. X

the person i mentioned was told today that their child would probably get headaches for first week.... they have to wait for results of blood tests top make sure in good health before starting the medication though, and apparently they will be monitored ~every 3 wks to check for weight loss amongst other things.

Isnt it a "slow release/ multiple release" drug that is same base as ritalin (methylpheidate?) Someone I know starting on it soon for ADHD, so imagine they also will be monitoring closely to see what side effects it has... will be interested to follow this thread for this reason.

Hi, my son is v similar age, and diagnosed last Feb. with ASD. He is at minute going through a difficult stage "moving on" from activities at school. What they are doing is moving him away for a time from this "favourite" activity and using a timer to indicate when he can go back to it (or alternative is to use visual timer to say how long he has till the current activity ends). Like J's mum says you can use similar techniques at home or school (perhaps better if you use same techniques in both settings then it will not confuse him. You could use a kitchen timer or similar. I bought a time out teddy once, but UK stockists hard to find. Also some sort of simple visual timetable showing in pictures what activity happens when (school and on days when he is home all the time eg school (obviously you would use drawings/ photos instead of/ along with the words - though make sure neutral background in photos. This lady who worked in a school setting told us they used a picture of the painting easels on their timetables on one childs timetable, and when they took him over to start the activity and he got really stressed. Eventually they firgured out that the child was focusing not on the easels but on the sinks which were directly behind the easels in the classroom and in the photo, so he thought the sinks were part of the activity not the easel!!!!) e.g. school day Drawing, Reading Lunch/ Break Playtime Circle Time Home time home day breakfast painting television snack play outdoors lunch time visit grandma/relation dinner time bath/ bed Perhaps use whiteboard pen to tick when each activity complete, or put stickers on velcro so the child can pull them down when they have finished each activity - I use a laminated "tick", with blue tack, and my son sticks this over his "getting dressed" visual chart when he has completed each stage, ie put socks on.... If you/ his teacher at school show him the chart in the morning it may help. The use of visual prompts is V useful for children with ASD. For yourself if you can get on an NAS Earlybird course in your area I would recommend it. I did the course late last year and found it really beneficial in terms of explaining how to help your ASD child. There are more details on NAS website. Would of course be best if the autism team got into school and helped them, but in meantime there may be some tips you could give them which may help Take care

Am happy you have diagnosis. Have you had any luck re schools?

Lynne, is the book you are refering to "The Explosive Child" by Ross W Green??? It sounds like it. This is an excellent book in my opinion, and i know other parents have found it useful too. I have loaned my copy to another parent whose child is explosive and inflexible! The course does sound interesting. Glad it has inspired you, and look forward to reading how its going for you

Hi, i posted on another topic about a book called "the incredible 5 point scale", for more detail see http://www.asd-forum.org.uk/forum/index.php?showtopic=20347 sort of like Sallya's post about her son speaking at a 12 and she telling him to turn it down to a 5 or 6!!! Uses visual scale like a thermometer and pictures (and adults practising with kids the sort of volumes to use at each level) to remind them....

If you made 2 cards, one with "quiet time/ bed time" and a picture on showing quiet activities and a reminder no singing (the red circle with cross over someone shouting or singing? , and another card with "ok to sing" (or similar, not sure exactly what as "noisy time" may not be helpful even if rest of house up!) and a picture. perhaps if you gave them to him at set times and explain to him when he has the quiet time card he should do the quiet time, then handing him the other card when he is allowed to make more noise..... As involves physical prompt (picture reminder to be quiet), and you giving him the card to say "yes you are ok to be noisy" it may be less confusing. I have adapted this from an idea someone told me about helping your child to share - this was making a card with "WAIT" written on it, and then using it in games involving turn taking. When its the childs turn you hold the card and wait your turn, then when it is your turn you give the child the WAIT card and they then let you take your turn. Its kind of a reminder and distraction in one. I know another parent who has found this helpful too - it doesnt happen at once though!! I also know another parent whose PDA child had sleep problems who used a card with "family time" and "Sam time", before bed time they used to play with Sam doing whatever he wanted until actual bed time time and then swap the "family time" card for the "Sam time" card. This was a visual reinforcement that he was expected to stay in bed without family member being present. They also made a "sams bedtime box" of stuff for him to keep in bed to help him occupy himself until he fell asleep (non stimulating toys/ objects of course!) Or there is a book called "the incredible 5 point scale" which explains a technique used with ASD children, and involves using visual scales (look like thermometers when drawn), with numbers and pictures to explain feelings/ expected behaviours/ controlling emotional responses in certain situations.... for "voice volume" it has a 5 point scale, 1 = no sound, 2 = whisper, 3 = conversation, 4 = loud, 5 = yelling. at side of each number is a picture of a face (simple drawings) saying things relevant to voice volume (i.e. the no. 5 picture is saying "HELP" and level is yelling, the no. 3 is saying "hi Tony"). The helper/ parent demonstrates to the child the voice volume at each level, and then practise with the child. According to the book colours and faces on the picture may also help the child to understand differences between each. And then after practise, you then explain to the child that when asking for something they need to ask at a level 3 voice, or you could say in your case to speak in a level 1 or 2 voice in the morning until a parent comes in and says okay to use a level 3 voice...... the book covers other scenarios as well. if it is over his bed or something it will maybe help him to remember.. the clock with closed eyes seems like a good suggestion and other visual techniques may work for you. A reward chart in combination with complying with card or scale may be good thing. Good luck I hope you find something to help!

I know someone who is an adult who receives DLA for themselves for a medical condition and whose partner also does receieve DLA for a completely different thing. Both are physical illnesses though, affecting mobility and requiring care obviously.They told me that some benefits person told the hubby to apply for carers allowance for helping wife, even though he could not get money because of receiving some other benefit (incapacity benefit??) but it would mean that they would get an underlying entitlement to it, and it would increase some other benefit. I am confused, how can you get benefit for caring for someone if you need care yourself and are registered disabled? Can someone explain to me as I have never heard this before and am a bit confused about it... (I hate not understanding it!!!) peaches if it is true i wonder if same applies to your situation that you would have underlying entitlement to it and get some extra money another way??? thats what set me off thinking about it!

Congratulations on getting the DLA award peaches. You did not mention so wondered if you have also notified child tax credits, as they will increase if the children you care for get any level of DLA (it is more if the child receives higher rate care - classed as severe disabled by tax credits) I think your tax credits will be backdated to the time you got your DLA awarded from, but there may be a time frame they will pay your backdated money to, so best to tell them as soon as possible. Jonathan, it is worth considering if you/ anyone else gives more help to your child than you would expect for his age, because of his disability. Does your son get extra help at school? Does he have lots of help at home? help from other professionals? What about his personal care, supervision needs? Do you consider them to be more that another 9yr old? If so then it is worth applying. I do have a pdf file that helps you fill in a form for children under 16 on "mental health" grounds - dont be offended its just the "physical" health grounds is more about children who have a physical disability preventing them getting around, the sort of problems you have with ASD fit more with this, although of course both may apply. This could be downloaded from a website but I tried it today and no luck, seems to be no longer a link with server but if you want I could try and send you this - not sure I can attach it to a post on the forum though..... if anyone can help then great. the web address which does not seem to work now is www.bhas.org.uk they had lots of helpful info. on applying its a great shame if it no longer works.

I think the siblings booklet I mentioned in my reply previously might help you with this, but sure there are other books out there which others could recommend to help with this. Good luck. It is all a bit overwhelming at times, your approach to it seems sensible. Got to go, youngest is having hysterics due, I think, to being tired. For last few hours he been alternating between hyperactive running around to sobbing hysterically.....

tried to research, not read book but going to loan it from my teenage neice. Cant find any mention of main character having autism/ aspergers, but apparently in the bbc production there is a girl playing a character called poppy (who has aspergers), and according to the info I read the actress actually has asperger syndrome herself and was v. good. I understand there is another thread on this forum somewhere..... has inspired me to read the book - cant watch the bbc program on iplayer though its too long after it was on tv....

You can self refer to a counsellor if you pay for it yourself. Look for a counsellor who is registered/ accredited by the BACP (British Association for Counselling and Psychotherapy) You can also phone the NAS database of counsellors and counselling services (for details of counsellors across the UK who have experience of counselling people with an ASD) tel 0845 070 4004 We have struggled for a long time with eldest having behaviour difficulties. Maybe social stories would be worth a try - Carol Gray has written books on this topic, and I am sure others on here may have used them with their children. Perhaps some visual reminders (or lists if he prefers to read rather than visual prompt) may help with remembering key things. There is also a book called Aspergers - what does it mean to me? it is a workbook explaining self awareness and life lessons to the child or youth with high functioning autism or aspergers. It is fairly expensive but has lots of chapters, including ways of thinking, people, understanding, thoughts, communication, school, friends, feeling upset to name a few. You can pick and choose which bits are relevant to your son. Each chapter has a number of worksheets for the child to complete to help them understand things, and explain how they feel. At the end of each chapter is a section with info. for the caregiver, which explains purpose of each chapter and how to use the info. In the "friends" section for example, it has a part on how to be a good sport, teams, a friend coming to my house, getting along with a friendplaying with friends, pretend play, playing outside. It has info and pictures and parts to complete to make it relevant to them. In the introduction section it has sections called "autism is another thing about me", what is autism, and why do I have autism, and was I born with autism. They may help you to explain to your son what it is. There are also some "siblings" booklets by Julie Davies which can be bought from a centre in Nottingham. These explain autism and aspergers and these may help him to understand things (and his sister too) I have a brill one about PDA which I got from the Elizabeth Newson centre in Nottingham (Sutherland House is the school that is part of this centre) - the info for siblings booklets are also helpful for family members to read. Link below is to full list of publications from the centre they are not too expensive. http://www.sutherlandhouse.org.uk/docs/Pub...list-Sept07.pdf ---------------------------------------------------------------------------------------------------------------------------------------------- In terms of helping my son to manage his anger I bought a good book called "Anger Management, a practical guide for Teachers, parents and carers" which had some worksheets at the back and I managed to sit down with my son and do at a rate of about one a week. They are staged, so first one looks at what makes you angry - is a list then space to write down other things your child may feel angry about. Next worksheet is "how do you feel when you are angry" - again a list and space to add your own things to. Next worksheet looks at particular scenarios, and what thoughts about them would make you angry, then other ways to think about it that would not make you angry - for example teacher ignores you when you ask something - angry thoughts would be "she hates me" or things on those lines, non angry feelings are that "she is distracted by something else", "she did not hear me" - again there is list of scenarios, a couple of completed examples and then others are for you to discuss with the child. Then next worksheet are looking at things you can do when you are angry (obviously that are acceptable/ do not hurt others) - again it is a couple of suggestions then space so you and yr child can discuss. Next sheet looks at the last time your child got mad. It has questions to complete, what happened, what did you do well? What did not go so well? What could you do next time? I did one each week, it was quite hard as he hates talking about things like this but we did perservere and I think it helped him to get thinking about it and has helped some. There is lots of other info in the book, its for older children about 8 plus I would say in terms of the worksheets, but there are tips for anger in preschoolers, primary age and teenage children. I know yr son is 12, If you/ anyone want worksheets for younger children there is a book called "a volcano in my tummy" that has similar type worksheets but for children a bit younger - format of this book implies more for a school/ group discussion but I think they could be used for 1:1 work, or perhaps with a sibling?? Perhaps you could loan the books you may be interested in from a library to have a look and see if it is any use? - I am sure libraries can order them from british library if they do not have a copy yet?! or sometimes ASD groups may have these books to loan to parents (parent partnership in my area had books and other resourses for parents to loan for a time, and when I did the earlybird course they also had a collection of books to loan to parents on the course). Sorry post is so long! Take care, Deb

This is the number for the benefit enquiry line. They can arange for help with filling in the form if necessary. They send form out to you within a couple of weeks, and stamp it with the date you phoned, and the date for return (6 wks later I think). If you return it by this date you will get the claim backdated to the date you requested the form. Telephone: 0800 88 22 00 If there is a specific reason for it being late, you can tell them and maybe they will be understanding but I think this is at their discretion.... You can also apply online, but you do not get backdated to date you started filling it in, or so I understand. http://www.direct.gov.uk/en/DisabledPeople...nce/DG_10011925 link is to directgov page on how to claim, there is a link to online claims form on this page. You have to fill in each part as much as you can and say why your child needs more help in this area than another child of same age. When completing it think about each question, for example one parent I know put no help needed with eating, ()( they said this as their child could hold a knife and fork and put the food in their mouth). She has complex communication problems so I said well does she need help to communicate what she does/ doesnt like to eat?, or to communicate if she is full?, does she have food fads/ poor eater and need encouragement to eat? there are other things which may also apply. If you have other older children (or even younger ones) you may see a vast difference between the child you are applying for and their sibling/ friends at the same age. If you can connect their "symptoms" to a diagnosis then put this on the form (i.e. XXXX needs help with communicating with others because of his autism, he does XXX which is related to his diagnosis of autistic spectrum disorder). For my son with PDA I printed off some info. from the internet to explain what the condition is, because the person assessing the application may not really know about the condition in great detail and therefore may not be aware of the level of support your child needs (obviously your child is individual but it will give them a general idea).. If you can ask a professional to fill in the part where it asks someone who knows the child to tell the aboutt their difficulties (I believe it adds more weight, and I sold it to head of sons school by pointing out that if they did this, the DLA may not bother writing again!! IF you have any reports from professionals which detail help your child needs, or info from school if they are statemented I reckomend adding this as it may save time for them contacting others. Copy everything you send as well including your answers Also someone I know had award put down and was told that this was because although child was statemented and helped a lot at school it was not her as parent who was providing it - if your child needs significantly more help than a child of same age (and to me a statement/ help at school is exactly saying that - consider how hard you have to fight for it!!!) then it does not matter who provides it, so dont be fobbed off by that.. Good luck X I will post another link to a help site which has ideas for helping with DLA claims on mental health grounds (as per physical) and I have found this helpful to look at as it goes through each question one by one and suggests things you should consider for each question..

Hi Peaches. The info below is taken from a useful NAS info. directory that someone on the earlybird course gave me: NAS Rotherham Branch www.autism.org.uk Formerly Actively Supporting ASD Parents (ASAP) the branch meets every other friday from 12.30 to 2pm. The meetings are for parents and carers of children who have a diagnosis of an ASD, focusing on Asperger syndrome and high functioning autism. The members of the group help and support each other and share experiences. Speakers are invited to attend the meetings. Covers Rotherham age 0 to 18 Cheryl Wilson, secretary Rotherham@nas.org.uk Tel. 01709 320173

Hi, the www.childrenwithspecialneeds.com/pecs link no longer works, I have posted a new link to what I believe to be same info below. http://www.childrenwithspecialneeds.com/in...6&Itemid=65 (you may have to paste in not sure if it will show as a link on this post) also when i went to infoispeek.org it gave me a page about roulette wheels and gambling?? has anyone else found this?? The www.ispeek.co.uk did take me to info. about pecs and communication symbols though!

Both my children (almost 10!, and 3 1/2) seems to want to eat with fingers, rather than cutlery. They both have issue re poor muscle tone/ youngest has hyper mobile joints. Eldest ok with spoon but not good with knife and fork. At youngests last appointment at CDC the Occupational therapist mentioned "caring cutlery" - they do a small childs version but she recommended the adults version as youngest would outgrow the childs set pretty fast. The handles are a special shape (hard plastic, not the soft foamy things my grandad used to use, also the knife and fork have indents on the handles for you to put your finger on to ensure you hold them correctly. I tried holding them and they do help a lot in making your wrist and hand "stiffer". I bought a set (knife, fork, spoon, small spoon) for about �12.50, and both kids have tried them. They do seem better, (esp. eldest son with knife and fork) so am considering investing in another set. If you google caring cutlery you will find an online supplier for same price I paid.

wish I was going but am away that week so unable to make it, hope you find it useful - would be a good opportunity for forum members in the area to meet up.

Hi, The NAS are lauching a new branch in Rotherham in October. The link gives more information about the launch (including an event at MAGNA in Rotherham where they are having a stall on 28th October), contact details and some information about a support group in Rotherham which will meet every alternate friday. http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=253&a=17720

I am currently attending the earlybird course (almost half way through), I think its really useful and agree that one of best parts is meeting other parents of ASD children in your area. They give you some really useful information about how to try and help your child and how to understand how autism/asd/aspergers affects communication, social skills behaviour etc.

I am thinking along the lines of Jsmum in that appeal for change can be made at annual review OR if there is an urgent need there can be an emergency review if it is felt needs are not being met with current statement. Perhaps if you have a local parent partnership service they may be able to help/ advise.

Thats terrible. Do they never accept late appeals for good reasons? (I ask because a long time ago I applied for DLA for eldest which they turned down, and I appealed late with the reason that I was waiting for a particular assessment to finish plus some other school related stuff and they did accept my appeal - which I did not win in the end but it was reassessed at least even though I was over time limit). If not is there any way she could ask for a new assessment for SEN?? I am not aware of rules regarding this, sorry