vicbee

Yes, i watched all of the last series and especially the 2 young lads in their 20's were particularly interesting - the one who only eats chips and the other who ate only chips and beans. I cried all the way through both of those ones, I really felt for them!

Karen A, with reference to your last paragraph here, this is very interesting as my daughter really does want to be able to eat properly again. She said that the first thing she will eat when she is better is macaroni cheese - which used to be one of her favourites. Obviously the fear has just taken hold and she cannot just get over it without help. She smells things like bacon butties and drools at the mouth and says she'd love to have a bite, and even attempts to put her mouth around it but just cannot take that bite. The last time she ate proper solid food, such as a piece of bread was around a year ago. So I am really really hopeful that because she has the desire to change and the motivation is there, then we could get somewhere...fingers crossed!!

Thanks for the positive feedback, I'm cautiously optimistic!!!

Thank you for your reply. I have recently discussed things again with the team and they are going to use boardmaker with her to give her visual representation to aid the therapy. I am looking forward to getting things started but not pinning my hopes on this therapy alone doing the trick...we will see!!

My daughter developed what the family call 'phleming up'. I'm not 100% why it started but i suspect it was as a result of her fear of choking and she doesnt like swallowing saliva etc. Over the past year and half this has progressed so much so that she has an obsession with tissues. She is never without a tissue in one hand and a packet of tissues in the other at all times of the day so that when she 'phlegms up' she spits it into a tissue. One tissue per 'phlegm up'. I buy around 18 pocket size packs of tissues a week - as she has to take '5' packets to school (no less than 5 and one day I emptied her school bag and there were 20 packets in there - i had an absolute fit but she said she had cleared out her school tray!) She suffers with anxiety and panics if she doesnt have her tissues. I also know now that when she 'phegms up' more often, then there is usually something that she is worried or anxious about. it has become a signal to me of her anxiety. It drives me absolutely potty sometimes when she is really anxious and she also gets into trouble with it at school. They think she is spitting but she isnt. They are getting used to it now at school but i understand their frustration because it sounds disgusting and when it goes on continuously every few seconds its enough to send you crazy. and then there is the problem of tissues ALL over the house, constantly! The problem with our children is that the smallest thing can easily become an obsession!

What was worse for me is that as my daughter has only just been diagnosed (at 12) she went through all of this from year 2 onwards (reception and year one everyone tends to invite the whole class - usually anyway) but the worst thing is, I never knew why she was never invited to parties or friends houses. To go through all those years just thinking your child is very unpopular is soul destroying. Bless her, she makes me laugh now because she still says every year, 'ooh, think I will have my birthday party here/or there' and I think to myself 'bless ya darling, thats all well and good but you dont have any friends to invite to this wonderful party!'. She doesnt have any friends at all. She breaks my heart when i watch her out in the garden playing with the little 3 year old girl next door 'over the fence' (we have a low fence). She seems happy enough with this but I often wonder what gthe little girl's mother thinks as they have only just moved in. Although i think she will be shocked when she finds out that my daughter is actually 12 - nearly 13 and not 7/8 like she looks and acts.

This is my daughter too - the dog breeds. Her other one is teddy bears - she has every dog breed in a teddy and has every teddy she got since birth and even remembers all their names from ten/twelve years ago even after them being in the loft and forgotten about! funny!

I did always wonder if this was some sort of self harm issue. It has always been a bone of contention for me since she was very little as she has always done this (but only recently diagnosed with ASD). I could never figure out how she could pull her own toenails off without being in pain at the time. It was always afterwards that she would cry about it being sore when she got an infection. It's amazing how you just live with these things without thinking it is that weird but actually - its ###### weird!!! I will tell her psychologist when we meet soon definitely - she can add it to her long list!!!

Hi, my daughter may be offered CBT to help in her treatment of her 'fear of choking' on solid food. I am a little concerned that this may not help as generally from what I have heard about CBT, a person has to 'imagine' a different outcome to their current fear and also use probability. Both of these things do not come naturally to someone with ASD. Has anyone had any experience of this therapy with their ASD child?

My daughter has bitten not only her finger nails for years, but her toe nails - to the point of where she has pulled the whole toe nail off on a number of occasions. It ends up infected and swollen. She does it periodically. I really ought to mention this to her psychologist some time! No tips for you, just thought I'd share my daughter's weird and wonderful ways!!

Really good article. Im beginning to accept now why no one realised my 12 year old daughter was autistic until recently. Been angry for a long time with previous primary school for not picking it up...i just hope it is better for others in the future. Autism needs more awareness big time for this to be achieved. Although i have to say that since I realised my daughter may be autistic - a year ago now, I am hearing so much more about it.

On the same note - maybe she has started her periods. is this possibly the issue?

Sorry I didnt see what JSmum put before me - hey great minds think alike!!!

Hi - just a note in addition - you can look into applying for Carers allowance now too - but you do need to meet certain criteria - you should receive information with the confirmation letter received from the DLA - but you can do it online - it is a lot quicker. vicbee

Hi Dee I have just read your post and actually cried! It's the fact that you both and especially your partner have experienced things for many years that you never had an inkling that there was an explanation for and then to suddenly find that last jigsaw piece (the way i describe it) is an immense and really indescribable feeling. My 12 year old daughter was recently diagnosed with ASD but only because I (a year ago) started to hear things about autism, aspergers etc and after a particularly bad episode where i lost a good friend through a bout of my daughter's blunt remarks and lack of empathy did i look up about Aspergers on the internet. And like you and your partner - it was like a light was suddenly turned on. I never slept for literally a whole month. I spent every waking moment on the internet and went to bed with my head filled with nothing but AUTISM. I was living in Spain at the time and had already decided the week before to return to the Uk because I couldnt cope with my daughter's behaviour on my own out in a foreign country. I could not wait to get on a flight to the UK to go and see my GP but whilst i was waiting for the appointment i made diaries and wrote out all of my daughters traits in great detail and presented it to my GP. A teacher friend of mine advised me not to go in to the GP and suggest that she had an ASD as doctors and other professionals (like previously said by another member) do not appreciate self diagnosis. However in your partner's situation it is slightly different to taking a child in but i would word things carefully to your GP. The sad fact is - there are probably a lot more people out there who are suffering the same way your partner has done over the years and will never know what is behind it. There really needs to be more awareness raised as ASD is a relatively new issue. I had never heard of anything but classic autism until a year ago. Now i think i know just about everything and could probably write a book! My daughter's diagnosis has been a godsend to me - the relief of knowing that I was not a failure as a parent as i previously thought was immense. I have always been on my own with my daughter since she was a baby and we had a turbulent relationship. I used to get very angry with her, i was constantly wound up and stressed out and frustrated because i could never reason with her, she lacked any empathy and i just thought i had brought up a monster. so after 12 years of thinking i was to blame for our bad relationship you can imagine the relief of realising there was an explanation - which is pretty much, im sure, how your partner and yourself are feeling. In the report written by CAMHS (child and adolescent mental health services) who assessed my daughter and diagnosed her, they stated the following when making recommendations for her future education: 'Children with similar difficulties to Elizabeth are at high risk of severe behavioural disturbances in later school years and adolescence if they do not receive appropriate and highly specialised intervention and support (Cohen et al 1996)'. It is scary to think what would have happened to my daughter had she entered high school last year without knowledge of her problems. Luckily, she is repeating the final year of primary school again and I have secured a statement of special needs for a special high school where she should be properly supported. Your partner unfortunately has obviously had to wander aimlessy through life wondering why he has caused upset (or maybe not!), had various reactions from people etc and not known why, which has obviously had some part to play in the problems he has experienced. I really feel for you both but I can assure you that getting a diagnosis should hopefully change things immensely. Once you and he have a better understanding of the condition you can then learn to handle situations in an appropriate way which will go a long way to help your relationship. Now that i understand why my daughter does the things she does, i react to her in a totally different way and I have changed so much as a result and so has our relationship. We have become so close now and my heart aches at the thought of what we used to be like. I dont get stressed out about the things she does anymore, i know there is a reason for it and i try different ways of approaching a situation and try to adapt to her more now so that things are more stress free. It has taken a while to get my head round it and my mum has finally got her head round it too so we work together to alleviate any pressure but i have to say that there are members of my family and friends who dont understand and are not supportive. i have as a result pushed those people away as i need only positive input! Im sorry to take over your post here a bit, but i really wanted to let you know how much your post moved me. I wish you and your partner so much luck in your future journey. Vicbee

Hi Dana I know exactly what you mean in all of this. However, with my daughter, and it is ongoing again this week, she started her new school in September, i think what happens with her is she says things to the other kids and for reasons we as asd parents all understand, doesnt think she has said anything wrong - but of course she probably has, so for her to admit any wrong doing in the arguments that go on constantly between her and another lad - just wouldnt happen because to her she has done nothing wrong. it is hard to get her to understand this. In your circumstances - it is very difficult because of course being the new kid - he's easy to blame and I guess its a bit of a cry wolf situation. Maybe he does do things in general to upset/wind the other kids up and the one time that he has not done anything and is totally innocent, he's getting the blame. It is desparately sad i know. Does the rest of the class know about his condition? I recently got my daughter's diagnosis and she wanted the head to tell her class which she did and things have been a little better for her although the one lad she fights with everyday said to her 'just coz youve got problems...blah blah blah! They are so cruel, kids and especially being a new child in the school. I really feel for you Dana. if its not one thing its another isnt it!! Keep your chin up chuck! vicbee

Hi everyone Ive mentioned this problem in various posts but not actually requested advice about it. It is our main issue and probably the reason why my daughter was diagnosed so quickly with the ASD as her main problems are her extremely low weight due to a fear of choking. she developed this a few years ago after choking on a dorito crisp. things went down hill rapidly but for the past 8 or 9 months she eats nothing solid. She eats only soup, ready brek and yoghurt. We are under the dietician who tried for 3 months to set targets to try new foods but it didnt work (i could have told her at the start that it wouldnt and saved her the time and effort - but we had to try). She is taking enshake supplement drinks and calogen every day to boost her calorie intake and we are awaiting multi agency meeting with CaMHS and others on 9 March to discuss future plans and hand over from CAHMs in our old town to our new town. I have read a couple of books on problem eating on the autistic spectrum but nothing seems to relate to the problem my daughter has. This has completely taken over our lives. it goes without saying that we do not eat out, she has only just started eating soup at school - but a big transition took place to get her to eat in front of others, she confuses the feelings of hunger with anxiety (i can see why) and we are trying to get her to recognise the signs of hunger. she also has to be constantly told to drink. if i did not bribe and coerce her to eat and drink - she probably wouldnt. this is having such an impact on our lives - especially me as a single mum. she has taken to not wanting to go out anywhere as she is scared of feeling anxious. we have to make sure she has her lunch before we go out anywhere and that usually means her eating at sometime between 11am and noon so that she has something in her stomach before going out. last week when they were off school, i had lots of fun things planned to do - things she would normally love. she didnt want to go out of the house for fear of getting anxious. This is really getting me down because i feel like i am climbing the walls with cabin fever. I have become so isolated because of it and finding myself getting more and more depressed but trying desparately to fight it. I have explained all this to CAMHS last week but my team in my old town have their hands tied as they are handing over to the new team. I am just wondering if anyone else has this problem and can you tell me what sort of therapy is likely to be given in these circumstances and might there be a chance that she could get over this - i know it will take a long time and she might never get over it completely. I must say that she has eaten 'normally' over the years - very fussy but has eaten meat bread solids etc before and actually says she would love a bacon buttie or something but just cannot get over the fear of choking.

I am sorry ...but i am laughing so much reading this thread!! Isnt it funny when your child does something that you think is unique to them only to find that actually there are loads of asd kids doing exactly the same thing. My daughter is a list freak! I am so sick to death of finding lists everywhere around the house, around the computer, all around her bedroom etc. Her lists are usually of her teddies names and the games she plays with them - ie vets - who has had what injection, who is staying in overnight. Then there is the endless lists of her nintendo games - these are usually repeated many times. Just before her birthday i stupidly told her to make a list of what she wants for her birthday. She spent every day writing a list of all the nintendo games in the Argos catalogue along with page number, price and catalogue number. the list changed from day to day but usually ended up being A4 size. I have now turned this obsession round to an advantage as i now use it to encourage her to do something in a particular situation or advise family to use it when she visits to distract her if they are getting into a sticky situation. If she is bored i get her to reseach flights for me on airline websites and make me a list of prices times etc - she just loves doing this. When we moved back from spain last year, i had her researching jobs, houses to rent, flights, schools and she loved making the lists. Shes my little researcher and I actively encourage her to do this as i know she is good at it - and she generally gets it spot on too! Just before my daughter was diagnosed recently, i took in a huge collection of the lists to CAMHS to show them. i think it was definitely a huge help in them understanding her obsessions. They are a great tool for proving your theory about your child too. Vicbee

My daughter was on an IEP from around Year 3. i didnt really know what this was - in fact i didnt know that was the name for it until recently - i just went in occasionally and signed a form. This was for help with her literacy and numeracy which never seemed to improve and in fact now seems worse than ever. i remember going in to parent's evening in year 2 and her teacher said to me "well look at this colouring in - the cow is blue - cows arent blue". (i thought to myself - actually - in the tv programme 'Blue Cow' - they are!! this was in front of my daughter too - unbelievable - how to knock a child's confidence hey! that particular teacher did nothing but produce negativity in that meeting. I left there devastated that day but made a stand and went back in the next day and asked to point out something positive about my child. she was rather sheepish. Every parents evening i was told how she was so immature, doing stupid immature things to the other kids, like hiding there pencil cases and lunch boxes. she was falling way behind her peers. she played on her own at break time. she would talk to the teachers at playtime instead of playing with her peers. i could go on but its pointless. I just think that so much heartache could have been avoided for us both but hey - we are getting there now. Now that I understand my daughter - we have become so much closer and thats only as a result of our learning curve.

Hi Lynne Not received the Statement yet - I was just chasing up the LEA on Friday to see if they had received the reports from the professionals who I had suggested in my parental form when she told me that it was going to be a statement. It was weird because they said to me that they hadnt received the reports from my suggested profs yet but my case had gone up to management to make a decision. I was quite annoyed because I thought - how dare they not look at the evidence i wanted included (which included CAMHS brilliant account of things in support of my views) but obviously there was enough evidence from the Ed Psych, school and paediatrician to warrant it. So very interested to see what the Ed Psych has to say. Should receive it in next couple of weeks. They seem in a hurry to move things as she is moving to high school in september and they need her school place in place very soon i suppose for transition purposes.

Hi Just reading through your replies. Its not something that im considering doing as having worked in the legal profession - i know how difficult these things are to prove - I just was wondering if anyone had been successful. The ###### ive been through lately leaves me with very little energy to pursue any sort of legal battle anyway! I do get angry about her old school playing a part in all of this because looking back (hindsight's a great thing) - the signs were always there. But then i stop myself and say - well, there is nothing I can do about that now - but the inadequacy I have felt over the years is hard to bear sometimes but becoming easier to handle now that i know that there is a reason behind my daughter's behaviour and has been for all these years. Doesnt stop me feeling ###### about the way ive handled her over the years though. anyway, im sure if there had been success with claims, there would be a dedicated section to it on this forum along with education, medication... LITIGATION!! Thanks for your replies. Vicbee

Hi - just a quick one after my last post. I was wondering if anyone knows of anyone who has brought a successful claim against the LEA/school for not recognising ASD. My daughter battled through a primary school for 5 years (until we moved to Spain) with social problems and other things yet no one picked up on it. The school she attended is well known for being supportive of academic and sports minded pupils. I have gone for 12 years thinking that my child was 'unpopular, a pain in the backside and basically thought I was a terrible parent because i could not handle my daughter and we didnt have a bond because of the way i was with her. I had never heard of ASD until 6 months ago. I feel very strongly that teachers should be trained to recognise the symptoms. Too many children are not receiving the support they need from an early age. it makes all the difference to how a child can learn even through his/her difficulties - if they get the support at an early stage. I look forward to receiving your responses.

Hi everyone I have only posted a few times on here but do read many of the posts and can spend a whole evening engrossed in reading similar stories to my own and then suddenly realise that it is 12am! I mainly posted at times when i was having extreme difficulties with my daughter. She has fortunately settled down 100 fold over the past few months and i think this is due to the fact that she knows that we are not moving again and basically because i have adjusted our lives around her condition (now that i finally understand it after spending 12 years thinking i was crazy). My daughter is 12 years old and as mentioned in previous posts, it was only after we went to live in spain and came back after a year because i just could not cope with her behaviour (which i now recognise as due to the extreme changes in her life) did i start to investigate the fact that she may be on the autistic spectrum. We came back to the Uk in July last year, I had an appointment with CAMHS in the September and she was diagnosed in December with ASD. My daughter is due to start high school in September and i knew that she would not cope in mainstream so I started the Statementing process myself with my own request for Statutory Assessment because her new school did not know her and i couldnt risk waiting till they did, so i went ahead myself. We are now in February and I have just been told on Friday by the LEA that they will be issuing a Statement. I nearly dropped dead on the phone when the LEA told me. I just bawled my eyes out. I could now stop trying to prove to the world and his wife that she needs the support and needs a special school. The relief and weight lifted from shoulders (as a single parent too) was immense. What shocks me more is the fact that i dont think my daughter has as many difficulties as some of the children I read about on this forum and so did not in a million years expect her to get a statement although I knew my determination would get me what i wanted in the end. When i started out on this journey last July, i read many many negative things about the whole diagnosis and statementing process. I have always been one to think the worst and be pleasantly surprised and i never get my hopes up about anything until it has actually happened. So after reading so many negative experiences - not just on this site but many other places - i certainly didnt think my story would be any different. So you can imagine how thrilled I am to be sitting here 6 months later, after realising she could possibly be ASD, with a diagnosed and statemented child. I know i have put a lot of hard work into ensuring that the authorities know everything about my daughter and have left no stone unturned but i really have to praise the CAMHS St Helens service for their fantastic support throughout the past 6 months. As we were moving to a new area during the process - they wangled it with management to allow us to stay under their jurisdictionn until the diagnosis was completed and now we are being referred to our local CAMHS service in our new area. any other treatment my daughter needs for her eating difficulties are going to be dealt with by CAMHS West Lancashire - and I really hope that they are going to be as supportive as the St helens team. right now, i dont really care - I got what i needed and got it quickly and supportively and cannot be any happier with the results. I could have kissed the lady who wrote the report for CAMHS - she did not overlook anything that we had discussed and I could not have written the report any better myself. She was so thorough. So all I want to say is that I think praise should always be given where its due. There is so much negativity and bad service in this day and age I always feel good service should be highlighted when it arises. And now, based on my own experience, I want to say to every parent out there who is struggling to get what they want, it lies in your hands - if you think that you are justified in what you are doing and really believe in what you are doing and know that whatever it is that you want for your child is going to be the best thing - then keep fighting. Every step of the way, every professional you go to see, be prepared, write diaries and give them to every professional you see. i made the mistake of assuming that because i wrote a 'book' on my parental form for the LEA that every professional that they had instructed would see a copy of it - i was wrong so i therefore had to explain everything all over again which is hard to do. We become so wrapped up in our children's problems that we assume everyone we see knows our child - but i tried to think everytime i saw someone new or filled in a new form, that this person does not know my child and i therefore have to give them a full insight into what problems she has. Its tedious and time consuming - but it works. I hope many more people can have a more positive experience such as the one we have had because god knows we all deserve it for the hard work we put into our children. Good luck to everyone in the future. Vicbee

Hi Peaches I applied for DLA for my daughter who is still going through the diagnostic assessments and she was awarded it within a matter of weeks. From what I can gather they didnt even contact CAMHS. Maybe I just got the right person on the end of my form. However what i did want to say is that i originally requested a form in August and the date to have the form back in was 17 September. I had problems with appointments at my local Carers Centre who were supposed to be helping me to fill the form in so i was delayed in returning the form. I requested a further form as my other was out of date and at this stage DLA told me that they had a special help line that could help me fill in the form. What i did was write a letter when i sent in the form saying that i had requested a form back in the August but had problems getting assistance to fill it in. They actually backdated payments to the original form date which again i was very surprised about. You dont need a diagnosis - as your childs needs are the same whether they are diagnosed or not. good Luck Vicbee

Hi Selsey I know it doesnt seem like it right now but things will get better - if only slightly. The main thing is to learn to back off completely. I resigned myself to the fact that as long as my daughter was eating something - i would let her have as much of it as she wanted and so at least she was getting the calories. i know it goes against all our principles to let your child eat what they want but its the only way. My daughter ended up eating only 3 things - heinz tomato soup, icecream and muller yoghurts because she has an extreme fear of choking. She wouldnt eat at school either - so no energy all day. She was just under 4 stone and was under threat of being hospitalised if she didnt put weight on. we went to see a paediatric dietician about 3 weeks ago and she prescribed Enshake milkshakes (or you can get the fruit juices) which are providing my daughter with 600 extra calories a day. She has also given some targets for us to work on with a good reward system in place. My daughter is 12 but responds well to a reward/star chart. Slowly but surely, over the last 3 weeks she has progressed to mashed potato (blended within an inch of its life) but she is trying it and thats all that matters to me. even if she eats just 2 teaspoons - thats great - loads of praise. the dietician has advised fortifying everything she eats with high fat/calorie things - so for instance - the mash potato i use double cream and butter to fortify it. using full fat milk for all drinks and wherever possible. On the other side of things - she is a nightmare to get her to drink anything. We constantly have fights because i am always nagging her to drink. she has to be encouraged all the time to drink. She only has about 300 mls of fluid throughout the day but we are working on it. I found that having someone outside the family talking to my daughter about trying to eat and the importance of drinking has helped her tremendously because she just saw it as me nagging when i went on about it. Also, she saw in picture format (centile graphs) how underweight she was and she seemed to understand it a little more. I never thought 3 weeks ago that i would ever see the day that she would be eating mashed potato again. We are making very slow progress but its much better than the stress we were under a few weeks back. My daughter is a lot worse during times of change - a lot of which has happened over the past few months, moving back from living in spain, moving into new house, starting new school. now that she knows she is secure again, she has improved in all areas and more calm around her food. I know it will only take a slight change for things to flare up again but im just taking each day as it comes. Sorry, cant remember what you wrote - have you seen a dietician? if so, have they suggested the supplement drinks? Worth asking about. I understand your stress and worries, it is a mother's natural instinct to feed her child. Just hang in there, and try everything you can. Vicbee