justine1

Filming maybe but not sure if photos will help as anybody could have done it.Lining up toys/objects is not uncommon in neurotypical children of a young age(under 5's) however with ASD children its more about how they react if it is not exactly how they want it to be,so if you were to remove an object from the sequence(without him seeing) would he notice it was missing and how would he react? This is the type of scenerio the paed will be looking for.

I agree with the above. I personally do not think I could "side" with the majority if I thought what they were saying was wrong. I have (as in this case) agreed with people on the forum on many occassions,unfortunatley it is sometimes the minority and therefore to the OP may be swept aside in favour of the majority or just what they perceive to be good advice. I loathe the saying "if you got nothing good/positive to say don't say it" much prefer "the truth hurts" so I think being honest(but not brutal) with giving an opinion is important. I do think it can get too personal sometimes and then I would bow out of such a discussion. Everyone should be able to express themselves though.

Sam loves fireworks and Dan cannot stand it! It makes things awkward as I cannot take Sam(and my two NT boys) to a display because of Dan.

Definatley think its down to the parents,as most have mentioned. A point I was going to make is if you look at the ASD community it is largely white middle class society,why is that? My own theory is that prehaps there is an equal(or slighly fewer)population of other ethnic groups living with ASD but have no diagnosis and function just fine in society,really believe it is down to how they are raised. Ethnic minorities (generally) put more pressure on their children to succeed,there is also far more discipline(prehaps not the "right" sort) which works in the long run,as far as respect etc. Of course it is also down to culture and the fact disability/having a condition of any sort is not always accepted by everyone and if someone's status in society will be affected I suppose they will brush any thought of diagnosis to one side. I personally believe as parents we should raise our kids to be the best,whether they have ASD or not. I look at myself and question am I doing the right thing but only time will tell. Some parents say "your boys have ASD they don't have to go out or they can skip that lesson as they not coping..." etc so maybe I am wrong maybe I should be making allowances for them. I have five kids,two with ASD but I still work and study whilst others sit at home and claim carers allowance. I am not judging them but I don't think it gives my children the right impression about what life is about. They do not know about benefits they see me working hard and providing for them,so they know they will have to do the same to provide for themselves. Another point is Sam gets DLA and has a statement but despite Dan having a dx of HFA and hypermobility syndrome I do not claim DLA for him and although I may one day get him a statement at this point he does not really need it. So again I really do think its down to what the parents make of the diagnosis,it does not have to be negative,limiting or used to gain something for nothing.

Exactly Dekra you have worded that very well! Dan is one who is in the middle so to speak (his dx been HFA) he has quite delayed speech(2.5 yrs behind) but is very popular,although he struggles to play with his friends rather alongside. Alot of his social problems are to do with touch,he hates touch of any kind(especially on his head) and the other is getting dirty which is a challenge if you are a 6yr old boy. He loves football and is very good at it but the teamwork side is an issue for him. Sam's problem is just to maintain friendship's which he has been able to do for about a year now( since age 8) he is capable of making friends and can interact well at times. Unlike Dan he does'nt have to much issue with touch,this could be because he has been doing massage in his ASD unit for two years,and does not have an issue with getting dirty. He does have sensitivity to sound but his best friend at school is quiet so that helps alot. ASD is a develpoment order and I for one have seen how 6mths,12mths,2 years can make all the difference. When Dan was 4 yrs old I was so sleep deprived and worn out by his behaviour,now he is 6.5 years old and he is not so much of a challenge(only if we are out!) The ASD has not gone,he still has many issues but I do feel he is developing albeit 2 yrs behind his peers.

Not sure about headbanging. My two boys have rocked,flapped and do other "stimming" behaviour I think the more I have made it "ok" for them to do it and not stopped them the better. They have over time realised they cannot do certain things when we are out as they may hurt others or themselves but at home they have the need to do it,my 9 year old does it more when he is excited and it can go on for hours but he is happy and not hurting anyone so its fine. Tantrums like any other should have course have a consequence/sanction depending on severity. Sometimes my boys may "kick off" for something that in part is my/or schools fault and sothey just go and let off steam in their room,there is nothing in there for them to break and they cannot harm themeselves. They will cry and scream for up to an hour and then come out as if it never even happened. If it it something where they are rude/disrespectful or break something (neither of them really lashed out physically) then they lose computer/xbox/telly time from their timetable. I work closely with the ASD unit on behaviour strategies so that there is consistency. But thats just me others may medicate for hyperactivety,the lack of sleep etc but thats not addressing the route cause which is behavioural and ASD,which as I say you cannot medicate.

I know it varies depending on where you live some appointments can take anything from 1-2 months to a year! I would contact the place where you have been referred to and ask if they have received the referral(I have had to do this in the past) if so ask the approximate waiting time,they won't give you an exact waiting time based on your circumstances it will just be a general estimate. If he has started school where you have moved to you could ask them to write a letter to the speech and language team.

There is no medication for kids with ASD so nothing has changed there.

I have enjoyed reading some of these comments and agree with most of what has been said. I wonder though when we say the "label" may have changed things with regards to using it as an excuse for negative,does this not still apply once diagnosed as an adult? Is it not possible to look back and say "oh I must have done X cause of my autism" which is the same thing as making excuses when young IMO. Personally I never went out to get a diagnosis for Sam,I did believe something was wrong but at the time had no access to internet so unlike other parents I could'nt/did'nt google anything. It was only when he was 5/6 years old the school he was at (the third school he had been to) told me to takehim to the GP. I just thought they would tell me to go to parenting courses(I had already done two on my own accord.) I was surprised when they said its ASD.With Dan's dx it was different as I now had more knowledge on ASD but even though I thought thats what it was I went to get a referral for his eating as that was my main concern andfrom there he to was dx'd. But I never knew about the dx before and had raised them just fine,so I never changed. My boys are mixed race so I already push them harder,we live in a very competitive world so I want them to be the best,that does not mean I want them to be surgeons or MP's I just want them to excel at what they want to do. I make sure they never make excuses for bad behaviour in fact my family even ask me why I do this. Recently my brother took his two kids to an indoor play centre and there was a boy in a tunnel throwing balls at every child who entered,everytime he done so his mum would apologise saying her son is autistic. My brother has never heard me do this so asked me why,I replied well how do I know Sam or Dan is doing that because of his ASD or just because he wants to be a brat? I do say to people that we have to leave because one of them is acting up but don't elaborate. Both of them go to mainstream schools(although Sam is in a unit for most of the school day) so they don't have excuses at school. I am glad they have a dx only because(in Sam's case in particular) it has given them more of a chance. Sam had missed out almost a year of schooling because we had no diagnoses the LEA would not even send in an ed psych or behaviour support for him and the school just could not cope. He definatley would not be doing so well if he had no statement and as a result I am able to work and study,which I believe will be a positive influence on all my children,if not I would have had to home educate him.

Sorry don't have much advice but going through the same at the moment. I believe it is only in April that we have to make a choice on whic schools so have a few months left. However I was lucky enough to have his usual annual review last week and we were able to discuss options, which I believe we will discuss more at the review in March as by then the ed psych report should be in.To be honest they were not that clear either but I do believe they do not wish to sway me in a different direction as it could lead to me blaming them when it goes pear shaped. They have said,which may be the same for you,that we should look at ALL schools including those which I do not think are suitable(we have a mainstream just 5min walk away) as if it is a catchment school they may insist he goes there,apparently it has happened in the past. So when looking at schools try not to look at the positives but mostly the negatives that way you can say why that school is really not suitable. Not sure about the SALT as my son is at a unit so the SALT is provided through the school we get two reports from her every year so it should cover for when we chose a school.Good luck it is so stressful.

Most GP's do not prescribe sedatives(or melatonin) for minors they are prescibed by specialist paediatrician. You could go back to the GP and ask for a referral to a paediatrician or to a sleep clinic(some are run by paediatric nurses)

I agree and disagree AS-warrior. I do agree some people do moan and do not seem to take the advice given and generally do not appear to want to get the help themselves. However as a parent of two boys with ASD I do need to moan or vent whatever you wan to call it,generally not about them but the lack of support or understanding we encounter occassionaly. It can be very lonely,I am a student nurse and I work so I am in contact with people everyday,yet they do not know what it is like to have children with ASD and have not been through all of what I have been through. I feel this is (one of)the only place where people do understand and can relate. I personally do not look for sympathy and generally speaking I am lucky as all my children (ASD and NT) are doing well. My older two boys are both on the school council,my (almost) 12 year old has had 30merits and is pupil of the month. So I am a very proud mummy that despite everything they are doing so well.I don't like to take all the credit but I personally am a get up and go person I donot like to sit and do nothing and this has rubbed off on them. I have mentioned in the past my story,not that in depth but believe me if people know all what I have been through they would be surprised that I am still standing. I like you would love to tell more people that anything is possible and anyone can achieve whatever they want,I am living proof,but some people are just not like that and will never change. Don't give up though but I have learnt the hard way some people just don't like the truth!

Thanks Jeanne,got the hearing in November,unfortunatley the people that are meant to help my children have failed big time and they have had 6 people(4 from cafcass and 2 social workers) speak to them in the past year,all of whom sent reports to court to support me but because they kept changing people the hearings were often cancelled was meant to have him back in March! Him coming home was very hard,not just because of how long he had been away but their father is very controlling and twists things. When the cafcass officer assessed his needs she said how confused he was and how he had such a low opinion of me but that he loves me,basically their opinion was my ex is trying to eradicate me from his life. Also that he was/is very unhappy. It is still a challenge when I see him because he is with his dad more than me he mistakingly calls me daddy alot more than the norm,it really hurts. The other challenge is because its just him and his dad he finds it hard to understand that I have to pay some attention to his brothers to.Thats what hurts the most my ex's actions were to hurt me but it has had a massive impact on Dan and his brothers,who miss him terribly. I am hoping once everything is settled we can spend more 1:1 time which is not possible at present.I do think these things take time,but kids/people adjust and as long as they have things/people they love around them then they will be fine.

Awww Jeanne I am so pleased for you. I wanted to comment before but kept forgetting. I know how hard it can be to be away from a child for so long. My ex took Dan in 2010 and would often keep him from me and his brothers for 4 weeks at a time and then when my partner moved in I did'nt see him for three months! I am now going through the courts to get him back its awful,I do see him much more now as there is a court order but I want full custody. Hope you have a great weekend.

Hi Wow your son sounds so much like my eldest Josh,he will be 12 in a few weeks. He does not have Aspergers/ASD(my middle two sons' do) he is gifted though and like your son was put on various talented and gifted scheme,including Children's university. I do worry as teachers always say how lovely he is and how excellent his work is and I feel he may start to relax now he is in secondary school. They also don't realise how disrespectful/backchatty he can be,he is extremely spoilt. Like your son he also leaves things until the last minute,like with food tech he will tell me at 8pm the night before what ingredients he needs to bring in and I have to go out at 9/10pm to get everything. It is very frustrating. Actually in many ways that reinforces the idea that my son does not have ASD as my others two with ASD plan well in advance(sometimes to much so!) I do agree with Lynda sometimes when a person goes abroad they grow/mature far more than if they stayed in their home country. Being at home with you or even in the same town means he can easily rely on you when he needs to but its much harder when abroad,there is also the need to succeed not come home a failure. I know this from experience,my eldest brother came to the UK in 1999 age 18,he was very immature but he survived living in shared accomadation getting his own job etc.He is now married with two kids,owns his own home and does well for himself. I followed him here when I was 19 and although I was not as immature as him I do find I rely much less on my mum and anyone else since I been here(10 years now!)

Having not read through all the comments I do agree with some of what the OP says. I am a mum of five,two with ASD,even I don't always comment on everything to do with children or education. I cannot agree with every parent on here just like they won't agree with me. There is a separate section on the forum "beyond adolecents" which people can stick to so as to avoid discussions mostly related to children. I may comment on beyond adolecent not because I have ASD but more because there are sometimes topics which I feel anyone can experience not just people with ASD,by commenting as an NT maybe it can reassure the person that this is not necessarily ASD related. Personally I used to come on here a whole lot more but actually whilst some adults feel they cannot have their say,I feel the opposite as a mum and feel my points are not valid. To say I do not understand ASD is a bit out of order,whilst I cannot feel what my boys' feel I do know how their ASD affects them. I must say that my two boys' are so very different,if I asked a question on here about my 9yr old the advice may not help him but it may help my 6 yr old if and when he goes through the same.I don't thinking holding back what you say is exclusive to this forum rather for any forum to be honest,people are always bound to get lost in translation. I will also say that I don't think people should hold back (providing you are not being abusive) some people need to have positive and negative feedback, people mostly only what the positive but I do think it should be balanced. Adults with ASD make a huge contribution to the forum and I do wish more adults would comment on topics related to children,it can be reassuring for both parties knowing they have or are going through the same.

Thanks Smiley,but its not a headache he is getting,he can differentiate between this feeling he gets and a genuine headache. He actually very rarely gets headaches,usually when he has a cold,hayfever or occassionaly when he goes swimming. This "brain pain" is not a headache and as I say its short lived,for example if he is doing work he will have the pain and feel "mudddled" but then if you say he can have a 5min break he will go off and play and have no pain,whereas if it were a headache it will still hurt even when he plays. I hope that makes sense. I do wonder Darkshine,it may not be all that common but I am certain some people with or without ASD do experience this. I do actually have an idea of what he may be feeling,but on a lesser scale,like when I am doing essays or studying for exams I get to a point where I just cannot go on like nothing more could fit in my brain(he decribes this same feeling) I then either have to take a break or just quit altogether. Last year when I was due to write my exam I did not study two modules as I started reading it and remembered it all so did not feel it was worth focusing on and I passed that section with 75% The thing that worries me is that at the ASD unit they do give Sam 5min breaks during work he finds difficult and I am thinking prehaps they are not doing this when he goes over to the mainstream part or prehaps they are trying to phase it out in preparation for secondary school.

Thanks all for your replies. Sally he seems ok generally,I would'nt say he is anxious(my two younger boys display alot of anxiety) it's definaley just when he has work to do. I am hoping to find out more when I go for the review. He is on the waiting list to be seen by either camhs or a paed,as he has not seen anyone since we moved two years ago. Darkshine that sounds exactly what he means! It is never one particular part,like with a headache you can say whether its a cluster or tension by where the pain is coming from,also if untreated(i.e pain relief given) it becomes worse, this pain he gets is just when concentrating,like what Lynda experienced with maths. He does say it is his brain,he also says its like there is too much information in there. Thanks again its good to know he is not alone.

Yes but my boys don't chose to be nervous,you can chose to put a lead on or not,thats the difference. I think peoples needs should ALWAYS come before an animals,your dogs need for freedom to be off a lead is (IMO) not as important as my boys' need to feel safe and secure without having to worry about dogs bounding towards them. They are even afraid of dogs when they are on leads but at least people can steer them away when they see how scared they are. It happened last week when a lady had her two on leads she saw how my son froze and was crying and she said don't worry they won't harm you and she steered them away,on the other hand someone whose dog is not on a lead cannot provide that reassurance when they saying the dog won't harm them yet allowing the dog to come right up in his face. Many people are fearful of different things if you afraid of the dark you can switch on a light or if you afraid of heights you can avoid looking down,this means YOU are in control of the fear.So my boys' are afraid of dogs but they have no control over people letting them off leads its just wrong. Saying "my dog is fine off the lead,its other dogs and people to blame" is no different to me saying "my son lashed out because the other child wound him up" there is no justification for it. One act of aggression is one to many IMO,it does'nt have to be a bite,as I say my boys have not been bitten but have as much fear as a child/person who has because of people not taking anything other than their dog into consideration.

Hi Ok this may sound strange but Sam(9) has been complaining about having brain pain,not necessarily a headache its more connected to when he has to do work at school. He just started year 5,he attends an ASD unit attached to mainstream,I believe they are trying to increase his integration as we are due to start looking at secondary schools this school year. Anyway,this week he appears to be very anxious at school and beginning to be very argumentative and rude to adults,he is like this occassionaly at home and its usually connected to a problem or change of some sort. I am wondering if the work has become more challenging as well as the integration,as he sat with me tonight and said how his brain hurts alot at school. We do have his annual review in two weeks time and I will bring this up,but just wondered is this common at this stage of schooling?

I am sorry if I offend anyone but my opinion is ALL dogs should ALWAYS be on leads!!! Whether its other dogs or people how can we all tell if another pet is harmless,just because they may be harmless to the owner does not mean the same for everyone else. An animal is an animal,they defend their territory and they defend their owners. I grew up abroad where we have very large gardens,so there is not a necessity to take a dog for a walk,its more of a treat I suppose,when we did they always had to be on a lead whether they were big or small dogs. We never had less than three dogs at a time,my mum is a bit of a rescuer whenever she found a stray she would bring it home if the owner was not found we would either keep the dog or find it a loving home. She still does this now,as well as cats. So I know plenty about the bond people have with their pets and I am not particularly afraid of animals. However...my son Dan(6) has always been afraid of dogs,my brother got his dog just before Dan was born so he was introduced to him at a young age but he is far too fearful to go near him. He gets very anxious. It did not help that about 2 years ago we were walking back from school and some careless woman let her rotweiler come bounding towards Dan,then aged just 4,not only was he scared but he was also unsteady as he has hypermobility syndrome. She did not apologise or even call her dog instead she was texting...worse of all she had a baby and I thought how can a mum allow that to happen to a child. A few months ago I was taking my other little boy Eli(4),who has not been that afraid of dogs,to pre-school as we got out our front door our neighbours german shepard came bounding to him and growled and barked in his face,he was shaking and crying like you can't believe. She was with the dog but had let him play on the green without a lead,she was apologitic and being a neighbour I did'nt make a fuss,but I was very upset. He did'nt even go to school because of how upset he was. As I say my brother has a dog,a westie,and as lovely as he is he can even turn nasty at times as he is getting on a bit. Animals are just so unpredicatable,regardless of how good you are as an owner it does not mean they are incapable of harming another animal or human. I really do think the law should be changed,in some states in the US they have lead laws meaning all dogs should be on a lead,if they are'nt the owners are charged and can face prosecution if the dog behaves aggresively.

I think its very responsible to say that you don't want children,there are far too many people out there who have children who are not wanted. By admitting you do not want children it means you can be more resposible and cautious. One thing I would say is these types of feelings are had by many people who do not have ASD just the same as there are people with ASD who do want/have kids whom they care for very well indeed.I personally go through alot of stress when having a child,always wondering if I can afford to have another baby and worrying about the future,now even more so that I have two with ASD. I don't think anyone could claim to be a good parent if they did'nt have these worries. We can also never predict what kind of parents we would be until we have had a child,in fact even though I have children I cannot rate myself as a parent as they are still relatively young. Its a constant learning process being a parent. I know many people who have said they would never have children but in their later years go on to foster or adopt. The positive of this is that you do not get a newborn baby,you can be slightly selective and chose the age group which you may prefer,say from age 10. The impact you can have on a childs life can be amazing and some people surprise themeselves as they believe they will not cope but often having a child means we cope better in more ways as we know we have someone else to care for. I definatley feel I take better care of myself and do more positive things since having children.

Thanks oxgirl. The funny thing is I to have a very high pain threshold,or I am just stubborn. I broke my arm age 13 and did not go to see a doctor until three months after it happened,I had to have surgery and a cast put on. Again when I was 15 I injured my knee playing basketball and did'nt see anybody for a month,I severly damaged cartilage and again had to have surgery and 6 weeks of physio. I have also had 5 children naturally,no pain relief(had gas and air once but made me sick) no stitches and very quick easy births. So I guess he may just have an equally high pain threshold. However I do think its more down to him not being able to express himself.He rarely cries when injured,I recall when he was 4 yrs old he fell on a lightbulb which cut his knee he was not bothered by the pain more facinated by the amount of blood. He made more of a fuss when we took him to the hospital as he did'nt want anyone touching him. Sometimes he looks like he is in pain or discomfort, like when he has a cold, he goes very quiet and not his usual jumpy self. As my partner said it would not surprise him if Sam has injured his knee as he constantly jumps,runs and climbs.

Hope sleep consultant helps.

Oops I meant the other way around special talent, Higher rate care and lower mobility.