CWP

Thanks Cmuir. The thing is they told us it'll take an hour and a half and his diagnosis will be confirmed or not at the end of the meeting. So after about 4 years of concern its decided in an hour and a half. I find that odd! I take your point if he is anxious then it'll prob be evident but I hate the thought of him like that in another room where I can't help! That'll be two of us in an anxious state! The last time i saw him sit a test was at 5 to assess his language capability which came out at age 10. I was there so he was calmer but got very bored and withdrew eventually so I'm concerned he'll 'switch off' and they wont see the real him. I'm not even sure what they will ask us. I feel we are being judged but this all probably goes back to the anxiety I was caused by two years of a particualr nursery nurse (while I had Post Natal depression following my second son) constantly jusdging me and saying it was learned behaviour etc. I was told to ignore his 'tantrums'.But a 4 year old who panics at what seems nothing and hurts himself cannot be ignored. Rant!

We live in Scotland. He already has an Educational Psychologist and Speech and Language Therapist. They've been in place since he started primary school. At nursery he was treated as spoiled as he always cried when things didn'tgo his way. Now he is such a good boy its obvious that this only happens as a result of frustration at change or the unexpected. We have been more or less told that all the evidence is in place and this is more a formality than anything but I can't help but worry that it'll be a case of people who don't know him see him for ten minutes and say 'no he's fine'. I just want all the help I can get for him. He gets teased so much and I know this wont stop that but he needs help and guidance. I know that the Scottish system is very different and so when I speak to people on here they give advice and I mention it at meetings and they always say 'that only applies in england'. I've typed up a lot of examples about his behavior and obsessions and motor difficulties so I hope that helps. Its just that one time a Paediatrician said he seemed fine to her. That was because he was terrified to the core because he couldn't understand her accent. She also stated he had cafe au lait spots which I disagreed with and was proven correct. He has hypomalenic macules and his first cousin has TS so we are now waiting to hear if there is a connection. I am diversing here my apologies. Thanks for your quick reply.

I have my son's final diagnosis appointment on 07 Dec. We live in South Lanarkshire. We have been told that he will be taken away (which concerns me I'm not sure how he will respond to that and we will be interviewed seperately. Other than that I'm not sure what to expect. He is 6 and 1/2 and we have waited a long time for this. Any advice?

Thanks Sally thats a great reply. If they refuse to see him then I will definately be fighting my corner. The problem is that i've been told Statements don't exist in Scotland. I'll get onto NAS and try and get a hold of what the correct procedures up here should be.

Hi everyone, Can I just start by saying sorry for not responding earlier. I've had a bit much on recently. My neice was in hospital but thats another story. Anyway thanks so much for all your replies. I should probably explain a bit more. My son doesn't have a diagnosis yet. He has been referred for diagnosis but we have been told he might not be seen as they have too many referals and are prioritising kids going from nursery into primary school. I had taken him out of nursery previously because they were worse than useless and punished him for tantrums making them worse and causing him great anxiety. It was his Primary one teacher who straight away said she thought he had Aspergers and was furious at how he had been let down. I have asked about statements but apparently they don't apply here in Scotland. He has a SALT who goes in every week. The head teacher has said to us that very often he does think people are teasing him when they aren't and he thinks any form of touch is deliberate and so I'm not sure now what actaully happened that day. He seems to have let it go now though and thankfully there are only two weeks of school left. In September we have been told there will be a meeting between us the Ed Psych, SALT, Paediatricain, new teacher and head teacher to discuss way forward. Everyone involved has supported his referall for diagnosis and it seems perfectly clear to them but its getting him assessed that is the problem. They keep saying that even if he doesn't get called that they will support him the same way they would if he has a diagnosis but I'm not sure if thats true. What are the main benefits of diagnosis? Again its great to know you guys are here for advice its much appreciated. I got so stressed over that incident and my neice being in hospital and then my son bolting away in a crowd that I actually collapsed. Feeling great now though! LOL

Hi Mrs D Sounds like you have a lot going on. There are positives to this. You are fortunate that diagnosis is happening so quickly. My son had a rubbish nursery and things only started moving when he started school. Hes nearing the end of his first year. Therefor you should have all the support in place before this happens. With regards to your daughter it is easy to start worrying if you are missing something. I also worry for my youngest son but like you I believe if there is anything it is much milder. As far as coping emotionally that comes with time and reassurance if you get good support. I was a year ago much like yourself but now I am accepting and enjoying educationg myself. One of the best things ever said to me throughout it all was that Connor is first of all Connor. He is still a person and infact a far more interesting one. No two kids on the spectrum are the same and so you raise them the same way you raise any other child. You cannot know what the future holds. You have to take care of your own emotions too and stop trying to hard - I know this from experience of making myself ill! Your boy will pick up on your stress. Continue to love him the same way you always did and you will find a way thought this. Don't know if my thoughts helped but I hope you can take some comfort. Take care x

I am still struggling with this one myself. I am still waiting for diagnosis also. However it makes me sooooooooooo angry when people assume its bad behaviour or my parenting. People really don't have a clue. What bugs me most is the people closest who act like they care and yet refuse to actuallyeducate themselves. The best one is 'yes I know he has Aspergers but sometimes do you not think he is using it as an excuse'. Shut up no he isn't he can't BECAUSE HE HAS ASPERGERS!! Its people who think that things like depression don't exist - 'you just need to pull yourself together'. If it was that easy I would you complete ignoramous! Rant over!

Hi there I wanted to ask for some advice as I feel completely lost. My son is nearing the end of his first year in primary school. He faked sickness the other night as he didn't want to go to school. It turned out that the children in his class were stealing his snacks in the playground and sharing them out then putting the rubbish back in his pockets. He tried to get to the teacher but they pushed him back and kicked him and so he ran away and was too scared to tell. So I assured him it wouldn't happen again and got him to go to school. He no longer wants to be in the plaground and says he has no friends and anyone who he likes hates him anyway. I knew he played alone but had no idea he felt this way or was being bullied. The school were very quick to deal with it and he has been encouraged to go out into the playground with a buddy in tow from a senior year. Will this give them more reason to tease? It breaks my heart that he is so aware and I am worried for his self esteem. If he feels like this at age 5 what will he be like by 16? Will he end up self harming or worse? I'm so worried and feel like school is not the place for him. He is so clever and loves learning but the social side is definately too beyond him. He used to try hard to fit in but appears to have given up already. I'm crying now! Can anyone advise me whats best. I don't want to take him out if thats not the answer. I don't even know if thats really an option. I'm taking him away for the weekend to our caravan where his only friend is. I'll be back on on Monday and look forward to any advice you can give.

Thanks Sally that was a very informative reply. its much appreciated. There will be a visit out to the school tomorrow to observe him so i will see where that takes us. Hoepfully things will move on but at least I know a little bit more now on how to handle this. I feel a little out of control of things just now until I gain a better understanding of the processes.

Hi and welcome to the forum. I am relatively new to this too. My son hasn't been diagnosed yet. He is also called Connor. I read your post with interest as I do with most new posts. I can't offer you any advice as you are further on than me but I wish you and Connor all the best. I would say that if you feel your son needs to be statemented you should fight your corner. x

Hi Like most parents I am constantly trying to find ways to help my child. On the internet I found the Ben & His Helmet books. Has nayone else read or tried these. We are at an early stage of understanding the Autism Spectrum and indeed our son. I found these books extremely helpful and my son is incredibly fond of him. Infact they made him open up quite a bit. I was unable to find them here and so ordered them from Australia. I'd be interested to hear if anyone else has found them useful or from any professionals who may have an opinion.

Wow. I just watched both videos and there is a tear in my eye. On a day where my 5 year old(still awaiting Diagnosis) lay down on the floor screaming 'I hate myself and everyone hates me' its quite hard hitting. I have signed petitions and thoroughly support this rally. However I have been informed (I live in Scotland) that the reforms will apply only to England and Wales. Does anyone know if there will be any reforms in Scotland or how to go about trying to get them?

Thanks for your replies. I have calmed down somewhat since my last post. My son has been dragged through so many NHS waiting rooms that i worry about the effect on him psychologically. He has been assessed for Dyspraxia, Muscular Dystropy, Arthiritis among others. When his school mentioned AS and I started reading up on it I finally felt like -this fits. When we got the appointment I thought this was the start of helping him so when I was told it couldbe another year my heart fell out my shoes. Like any parent I want the best for him and I often feel like for a five year old he has way to hard a life already. Like I said I've calmed down a bit and am more prepared to take things slowly - they've been slow since he was two. Thanks again for your replies and advice it really is much appreciated. Unless you've 'been there' you can't really understand and its nice to be understood. x

My son has only recently started assessments for Aspergers. He was at his second appointment yesterday with a Speech and language therapist. He is 5 years old and they assessed his relative age for language comprehension to rule out any developmental delays. His age came out at 9 so we agreed there are obviously no issues there. The therapist has now said that she will be recommending that a Paediatrician goes out to school and to home and that they make a referral to Autistic Diagnostic Services as his problems point towards him being on the Spectrum. She then said that children in a transition from nursery to school or primary school to secondary are given priority and that he may not even have his referral accepted if they are 'too busy' although she feels his case is quite strong and will push for it. If his referral is accepted it could be up to a year before the whole process is complete. He was treated as naughty at nursery and I feel badly let down. I eventually had to remove him. He is nearly at the end of Primary one and the thought of a whole year longer without support for him or us is a bit much. He is teased at school and I find him becoming increasingly stressed. He badly needs social skills training and to be honest we badly need support. I wonder if anyone knows how to go about getting a private diagnosis and whether the local authority will be bound by this to provide support. I should mention that we live in Scotland. We also have an issue that we live on a border of two health boards and that appears to be a problem as to who should see him. It would be either Lanarkshire or Glasgow.

Oh my goodness. I can't believe anyone has left you in such a state of fear. They can't take him into care. I don't know enought yet about the ins and outs as I'm new to this but please know the support is there.x

Hi there and welcome. My son is 5 and 1/2 and being assessed for suspected Aspergers. Can I just say how much I relate to your post and I hope I can help. I have no such diagnosis but I never felt I fitted in and had major social issues. I have made tow OD attmpts prior to having my sons who are 5 and 2. I assure you that because of who you are you will only ever be the most understanding parent ever and your child will be blessed to have you. If your child has an ASD then think how nuch you will relate. I find this so amazing with my oldest. And you know that you can achieve so you will only be the best rolemodel to have him. If he is NT as my youngest is then your relationship will blossom from what you can teach each other. Have faith. I understand you are worried but this will be the maiking of you as it was me. x

Welcome! I am quite new too but I must say the support is amazing. Hope you find that too. x

Hi I'm horrified. I have signed petitions about this. I am quite new to the forum as my son is only being assessed now. However I found out today that the bill only applies to england and Wales. I am from Scotland. So if anyone is from Scotland or Northern Ireland I think we should all contact our local MPs and make sure this becomes a passed bill in devolved parliament.

Hi Thanks for your comments. I've spoken to a few people who agree with whats been said here. I think I will take the advice and be gently honest. I wont mention Aspergers or Autism. I've been advised to use the speech I always use. So I usually say to him that I know he struggles sometimes and gets upset if he's having a meltdown. I will say that the nice lady is going to help him with the things he struggles with and that she wants to see how he is a real big boy sometimes and brave. Does that sound ok? I really appreciate the help. x

My 5 year old son is going tohis first assessment with a Speech and Language therapist on Tuesday. Hi school are convinced he has Aspergers. I have no idea what to tell him as to why he is going. He is a bright boy and will ask a thousand questions. I'm not sure how honest to be as I don't want to make him anxious. Any advice?

At the fourth attempt at trying! I ame determined to reply to you as I know where you are coming form. My son is not much younger than yours and I have had simialr life experiences and struggled with what to blame. Since I started reading about AS I wonder if the experiences I had were down to a possible ASD within myself that led me to trust the wrong people. I have a very supportive husband and I suffer form depresssion. I understand why you are trying to determine whether the chicken or the egg came first. All I can say is you will probably never know but try not to be so hard on yourself - as my husband always says to me to no avail! If you want to chat more I'd be glad to help as I already find your story helpful. This is much shorter than my last three attempts because I think I will lose my conneciton agian! x

Hi there I don't think I can be of much help here but would be interested to see the responses of people who can. Just so you know though you are not alone. My son is being assessed for suspected AS. He is 5 and his brother is 2. Obviously in my situation the age of my children means that this is somewhat to be expected. My 5 year old is very controlling. He struggles not to snatch things from his brother. Every game they play ends in tantrums most of the time. What we do find is that if we play board games and join in with them it is easier to contol and we counsell each outburst. It helps them to take turns and we are able to keep the oldest calm. I do find that their play is better supervised as if they are left alone its a bit of a countdown until it inevitably ends in tears.

Welcome to the forum, I have also only recently joined as my son is in the process of being assessed for suspected AS. He is prone to being teased and I'm sorry you also experienced this. It is great to have someone who will have so much experience, understanding and advice to offer. I'd like to say congratulations on your degree. My son is very intelligent and its good to hear a first hand success story. I hope to speak with you again. x

Hi Denise My son is just over 5 and 1/2 so a similar age to your son. We have just started the process and are awaiting our first appointment which I think is to be with Speach and Language Specialists. He is my oldest unlike yours but I have another son age 2 and 1/2 and I worry about equally dividing attention and how their relationship will progress. I'd be happy to share experiences with you as our sons grow as they are very close in age. I know what you mean about people thinking there is nothing wrong as for the most part it isn't obvious. My son is very advanced mathematically and relies on routine. He also throws tantrums. Hope to speak again.

Hi gemgems Sorry I haven't been on recently. I'm a bit in limbo just now. My son has now been referred for assessment. The school themselves seem unclear about the procedures as they have apparently changed recently in Scotland. We have been told we should expect an appointment for him to see a Speech and language therapist first but don't know how long this will take. The school have been great thouh keeping an eye on him and conversing with us. They have said they are treating him already as though he has a diagnosis even though he doesn't as he responds well to them when they do and they are convinced he will receive a diagnosis down the line. He's doing ok. I think as my understanding grows my stress decreases. From posts I have read this may change as he gets older and faces different challenges. However at the moment his main problems are tantrums through frustration and literal thinking. We have been told by his teacher that academically he runs rings round the rest of the class. He is a bit of a sponge. Especially with numbers which he has a 'fixation' with. The other day he was really quiet after school and looked worried. It took me all night to get out of him what was wrong. One of the other kids had fell and really hurt themselves and there was quite a bit of blood which I don't think he's ever really seen. He thought because the boy was hurt bad and had to go to A&E that he would die. It was such a shame. His mind just works over time. Sometimes I think he no longer trusts people to tell them what he is thinking incase he is mocked. Or should I say he will think people are laughing at him. You know that way when you say 'oh sweetheart that wont happen' and you kind of laugh or smile he thinks you are laughing at him. On a good note I am coming down more now on the side that my younger son has simply been copying the behaviour. I got him into a playgroup and he joins in and shares and its so different to my oldest. He used to say he was 'doing a story in his head' if he was playing with someone and if another kid spoiled his story he would have a huge tantrum. My youngest however seems to instictively shift the game and share toys. Its bittersweet for me really. I am delighted for the youngest but it did bring a tear to my eye when I realised how much the oldest had been struggling all that time and everyone just treated him as a 'bad sharer' and he would get more and more upset til I had to take him away. All that time he must have been so lost and I as his mother couldn't help. As I watched the little one it was like flashback after flashback. No mums were looking at me as though 'can you not control him' and they were sociable towards me as my son was to there kids. It was the complete opposite the last time around. As my son was more and more shunned by the kids I was more and more shunned by the parents and it made me so anxious. I haven't become involved with parents at school and I'm quite happy that way. I have plenty of good friends and family who love me an my boys equally and regardless and feel it is better for both our stress levels to keep ourselves in an environment like that. Some people think we should keep pushing him into social and he'll 'come round'. No he wont. I wont force him into situations he can't cope with. To me thats cruel. This isn't a minor case of shyness. Infact hes not at all shy he just gets exhausted as he says' trying to do things the right way all the time'. That turned into a bit of a rant. I guess I just enjoy being able to sound of to people who actually 'get it'! How old is your son? Does he cope well? I get the impression we are from different parts of the country. What is reception? Is that like his first year?