newly diagnosed son

Hi again.

We're in Scotland too, so the system is different, but I agree that I would be pushing for action sooner rather than waiting until after the all-powerful SATs. That's just a red herring - you need progress for you and your son, so go for it now.

Hi Hibbsy

The pessimist in me feels you should take control of this and not leave it to the Ed Psych as before you know it May will be here and I think from reading your last post you feel the same.

I really would contact the Education Rights Service on this site and also the Parent Partnership Service, you should be able to find their details on your County Council website under schools/education/SEN or put it into a search engine with the county you live in. They are there to support parents and give advice and they will be up to date with laws and have the right contacts etc.

I'm not sure what an Inclusion Officer is or does but why not ring the Education Department at the County Council and ask to speak to one or an Education Officer. Tell them what was discussed at the meeting with the Educ Psych and say you want to put the wheels in motion now, waiting until the end of May because of SATS is not good enough and not your or your sons problem it's theirs! If your not happy with the way the school are dealing with things write to the Chair of Governors.

I would also get a notebook and keep as a diary to record things that happen or are said and by whom, something I have personally been glad I did as you can never remember everything.

Never worry about upsetting these people or going above their heads to get things done - only think of your son and what help he needs, deserves and is entitled to.

Be strong and don't give up until you get what you want for your son. Lots of luck.

Moonraker

Hi Moonraker,

Thankyou for your reply. Well we did go back to the Educational Psychologist and told her how let down we felt by her. We basically asked her what she was prepared to do to help us before we take it to the Educational Authorities, and we would also be complaining about how she is letting our son down. She has agreed a meeting with an Inclusion Officer to discuss whether we would be able to ask for a statement fo our son, but still feels it's unlikely he will be put in for one. This meeting will be after the Easter hols and probably the end of May because of the Sats....the Sats that my son is not capapble of sitting, but they still maintain he is doing well!

Do you think we have done enough or should we be fighting now and not waiting for that Inclusion Officer?

Thankyou for your advice, we really do appreciate it. Best wishes to you.

I think you are being passed from pillar to post! I think you should contact the Education Rights Service of NAS for advice as your son has legal rights regarding his education. Also have a look on the website of your LEA under the Special Needs section to see if you can glean any useful info. The link for the page on this site is below:

www.autism.org.uk/.../advocacy-for-education-service-in-england-and-wales.aspx

I live in Scotland and the terminology etc is different to England but I have had to take the legal route to get the right help for my 14 year old son, it's been a hard slog (2.5 years) even with CAMHS, Educ Psych etc on my side.

I wish you and your dear son lots of luck and be prepared to fight, don't let the school fob you off as they will if they think they can get away with it!

A not so quick update!

Well, we have had a meeting at our son's Junior school this week regarding the impending Sats and also the transfer over to the high school in September. They have decided that Our son will NOT be sitting the sats because he would struggle to reach a level two and therefore the results would come back as N - non graded!

However, they have decided to let our son sit a made-up sats paper that is made to look like the national sats paper but will have questions at his level which would be easier to answer. He apparently wouldn't realise it was a made up paper, it would be marked at the school and they would ensure he recieved a level three that would at least look like a reasonable level for him. Although we do understand what the school are trying to do, both my husband and i really don't feel comfortable with lying to him, and feel despite his fragile mental state we should strive to be honest with him, he needs to trust us.

We also spoke to the school about his recent Autism diagnosis about 5 weeks ago. CAHMS went in to discuss what should be put in place, and talk them through his needs. The staff including the Headteacher had no recollection of that talk, until we reminded them and then said "Oh yes, i remember a little chat now!" Our son is still being taught at yr6 level, struggling to prepare for the sats....which he won't be taking!

We also spoke to the High school who feel our son should be statemented, and told us to discuss this with the Junior school....this was met with an emphatic no, and we were shot down in flames for discussing our son with the school when it is "their job to discuss the childrens needs....how dare you go in and talk to them!" They feel he copes well, does not need a statement and we shouldn't even be discussing it! We did point out that our son has made absolutely no progress at all in the four yrs he has been at that school, and the fact that he is recovering from breakdown is obviously showing that he is NOT coping well!

We have managed to speak with CAHMS who feel like us, that we should not lie to our son about the SATS, absolutely not. They have said that although our son does need a statement we would have to fight tooth and nail to get one, and from their previous experience, they know it is unlikely to happen. Sadly, thats just the way it is. So, what do we do? Who knows?

Anyone out there who could advise us?

Thank you.

Hi There,

Once again, thankyou for caring.

Yes i think my son does understand about his breakdown and he still has weekly appts with CAHMS to talk through it, so i think you could be right in saying that might be the way forward to explain to him we worry about his illness, and perhaps we could bring CAHMS in to help us discuss it with him He has an excellent relationship with them and is close to one of the ladies there, so thankyou....i think that could be an answer. We will also talk to him about the dyslexia, as he does seem to accept that.

I have read the other posts on here and all i can say is i relate so much to how you are all feeling. My heart goes out to you all and i just hope and pray that life gets better for you all.

This forum helps so much! It really does make a difference to speak to others who understand.

Sending my best wishes to you, once again.  Thankyou!

You say that children tend to tease him as his reactions are so extreme they enjoy the show.

I'm afraid it is very familiar ground for me - I was good entertainment. But though I cannot say my experience was the same as your son's, with me it was the end result of a drawn out process. I could be wound up to perform, but it took time. But children are good at spotting weakness and working on it, and they'll pursue the end result with patience and tenacity. I've never really had problems with meltdowns since school; I've always subsequently found a quiet place and the right moment. I know its not so easy for many others on the spectrum.

I venture to suggest that it is not instantaneous response to an immediate cause, but the last straw in a continuum of hurts received by someone with heightened sensitivity and a narrower coping bandwidth.

So please stop and think about the psychological effects of the step as a punishment, seeing your husband getting angry with him. Try to look at things from his perspective. Think of days when you've been pushed to the end of your tether, and then try to imagine if you were more sensitive and less able to cope, being at the end of your tether was permanent.

Its about having difficulty communicating and understanding other people. So you don't get the release that social interactions can offer. You have to analyse every situation to find a safe passage, and that leads to spiralling anxiety, every daily situation that you'd get over and forget about spiralling round and round in your head. There's no let up every minute of the day.

Hi there.

What's really rubbish about this whole thing is that the school places such an emphasis on SATS. This puts all the pressure on your son, in terms of his expectations on himself, and also means that for several months, there's no getting away from it. Without all that he would be much calmer and not feel he has to prove his academic success.

However, that's not the case, so it's not easy, I agree to explain that he won't be doing the exams. I guess this may therefore be tied up with how you approach the whole Aspergers thing with him. Ironically I can't help here. I built myself up for talking to our son about it and when it came to it, he just looked at me and said, oh yes, Mr X at school told me I had that! It's not something he talks about very much, but every now and again he'll ask a question about what it really means, how it affects him or how it makes him different to other people.

It might be a way forward, I suppose, to talk to him just casually about difference, and maybe use the dyslexia as a starting point. That everyone is different and everyone is good at some things and struggle with others. Does he know / understand about what happened when he had his breakdown? Could that be an explanation as to why he's not doing SATS this time - that you don't want him to become ill again???

It's really hard, I think, finding out (even if you knew it anyway) just how much your child is struggling or is behind, or how much support they really need. I find it washes right over and through you, this realisation of what life must be like for them. So, I empathise with how you must feel right now.

Not sure what else to say just now, except take it a day at a time and I hope things will slowly improve for you.

All the best,

H x

Hi all,

Just a quick update. Have had a phone call from the school, and my son's teacher has told me that she has been in meetings this week with SENCO, Ed Pscych, and CAHMS. They have decided between them that our son will not be sitting the SATS. they have been assessing him and said there is no way he can cope with the tests and it would be unfair to put him through it when he is unlikely to reach a grade of 2 or 3.

I am totally devastated, although i do understand what they are saying. This year, yr 6 do SATS practice constantly....the whole year is literally taken up with sats, mock sats, and even more sats....that is literally all they do from xmas until may, when they sit them. My son is literally working his socks off in the hope of gaining a level 4 "like everyone else". He will not accept that he won't get the grade and had a massive breakdown over his last SATS test results ( level 2). I understand that the school wants to remove that pressure on him.....but how on earth am i going to tell him? What do i say to him?

We have also been told at this stage, not to tell him he is autistic as his fragile mental state means it is too much for him to cope with. How do i explain all this to him? It really does feel like too much, i feel like i am swimming in mud, such a dark time and i can't see any way out of it.

Please can some-one help? Does it get any easier?

Thankyou once again.

Hi Again'

Pleased to hear you have a plan of action for your son's transition to the high school, it really is a daunting prospect isn't it? Llike you, i worry how my son will cope with the different class teachers for different lessons and the unpredictability of the school day. I had to pick him up at lunchtime yesterday as the school had to close due to a burst water pipe....he came out of class in tears, he just couldn't cope with the change in his routine, and was wound up then for most of the afternoon.

We have a meeting planned for next week with the head teacher and SENCO staff of his high school with a view to ensuring the transition there goes as smoothly as possible, and also a meeting with primary school staff next week to discuss whether my son sits the impending SATS tests. CAHMS say a definate no as they are worried for his mental state and feel he wont cope when he gains a lower result than he is striving for....his class teacher feels he should sit the SATS and we should be preparing him for a level 3 (which my son wont accept at the moment!)....and us parents? well, we sit somewhere in the middle, i think if he doesn't sit any SATS it will shatter his very fragile self esteem, but i also feel he needs help to come to terms with his expectations of himself (he doesn't know yet that he is autistic, he thinks he is "just dyslexic and needs to work harder"...his words, and his teachers over the years!)

Looking forward to some progress with the schools over the next few weeks, and to being able to feel more positive by being able to do something.

Good luck with your meetings too, i really do feel it's essential. A shame you are losing your ssw, thats so hard, but i really hope you have great staff, moving forward.

Sending you once again, my very best wishes

Hi there.

I agree that the thought of moving up to high school is quite frightening for us as parents. We had a meeting on Tuesday when we started discussing transition up to P7 (final year of primary here in Scotland), but also into high school! We were quite taken aback, but agree that it's necessary, as at the moment we can't imagine our son coping at all there. What we heard about the support he currently needs in school shocked us, so how he will ever get to grips with a different teacher and classroom for every lesson, plus school days which finish at different times, I just don't know.

We're fortunate that we've got an excellent spectrum support worker. She will hand over to the worker who will support him at high school at the start of the next academic year, so that he has some continuity there, which is good. Although it's a shame that she can't continue to support him right through, as she's just been so supportive.

I guess the thing is to push for as much transition preparation as possible. We're planning that by this time next year, there will be staff coming in to school from the high school to work with him and get to know him. Then by Easter he'll be going and visiting the school. They're planning on giving him more link staff than the other kids too. There should be the spectrum support worker, a guidance teacher (which all kids get) and a.n.other. This is so he's got more people looking out for him. Also, the SSW will be in the school 4 days a week, so she'll often be around, which is good.

What really worried us though, was that the SSW said that she'd already told her colleague about our son, as he would need "a lot of support". Very frightening.

Anyway, I think you need to really go for it and get as many visits and as much co-operation going asap.

All the very best!

Thankyou so much for you reply i am unable to work voluntary in my sons school at the moment, And as for CAMHS the educational psychologist is referring him there. I am lucky in that it will be the sam educational psychologist that will be in senior school with my son. She and my sons primary school are setting up a meeting with the senior school to get my son to meet his new teachers etc before he moves up to help with the transition to senior school he also has an out of school club that has been set up to help kids to transition to senior school which he goes to once a week from now until he moves to senior school which is helping him. Its just the fact i was told yesturday he is definately autistic and more or less told goodbye i wasnt given any leaflets on the subject at all not even where i could find help that really knocked me for six.

i did my own research and came across this website which i have found very helpful and found so much information.

I am glad you have also finally got a diagnosis for your son and send my wishes you you and your family to xxx

Hi There,

We do understand exactly how you are feeling as like you, although we knew for years that something "wasn't right" with our son, we just couldn't put our finger on it. We spoke to drs, health visitor, playschool teachers, class teachers, you name it....we spoke to them! We were told we were anxious parents, that our son was lazy, that our son was a "typical boy, who won't push himself"......on and on it went. We have fought tooth and nail to get him assessed, and i have to say having CAMHS (child and adolescent mental health team) on board has been and continues to be an absolute godsend, they only came on board because my son had a breakdown a couple of years ago due to the stress of working so hard at school, and being aware that he wasnt up there with his peers. It was them who pushed for the autism testing, and them who did the testing and to be honest, because we thought we already had the diagnosis of dyslexia, speech and language disorder and anxiety, we really thought we were doing it to rule out autism.....we were stunned that it came back  telling us he is in fact autistic! Like you, we are shocked and just don't know where we go from here. Here is a few things we have done, and i hope it is helpfull to you..

We both work voluntary at my son's school i am a voluntary classroom assistant...not in my sons class...  and my husband is a school governor (our motto is if you can't beat 'em, join 'em, and if they can see that you are willing to work with them and set up some kind of relationship with them, then it becomes a bit easier to approach them with problems. It has given us a good insight into the running of the school, the atmosphere there, and a chance to be a fly on the wall!) not sure if that is a possibility for you but we have found they are less frosty towards us now and just that bit more approachable.

If you don't have CAMHS on board then i would look into that, either through your dr or the educational psychologist. No-one is suggesting that your son has a mental health issue, but it does help with both my son's anxiety and as a support network for us parents too.

As for the secondary school, i would suggest you arrange a meeting with the headteacher now, is that possible?  also if they have a SENCO teacher, i would ask for them to be in on the meeting, and really try to work on making that transition smooth to alleviate the stress. Our son is now going to be going over to the secondary school with the class teacher he has now. She is going to be going with him to show him around, to sit in a few lessons with him, to help him to form a relationship with the learning support teachers, and this is going to be starting around april time, and be ongoing until he moves up there in september. Us parents are also going in next week to meet the staff and have a chat with them. do you know who the Educational Psychologist is for your son's secondary school? Is there any way you could be put in touch with them now, to work through what is going to be put in place?

As for coming to terms with it, well i'm afraid that is just so hard, both me and my husband cry still, we worry for the future, and just feel so sad...it's like we are swimming in mud, trying to keep above the surface, just so hard! We look at those baby and toddler photo's of him as a smiling, cheeky fun loving boy with a huge zest for life and i just feel heartbroken at the moment at what he is going through. I just have to believe that it does get easier, and cling on to that hope....it is literally one day at a time for us, that's all we can do really.

I hope i haven't gone on too much and that this has been helpfull for you. I send you my very best wishes

hi, i have just read your post with interest, my 11 yr old son has been having difficult issues at school with his behaviour, i have been battling with schools and GP's for the last 7 yrs and finally after moving to scotland last year we have finally found a GP willing to listen and help. She and the school both sent referals for ASD/ ADHD testing of my son.

After almost a year an Educational Psychologist was brought into the school to monitor and test my son which today i had a meeting with her to be told he definiantely is autistic and she believes he has Asbergers Syndrome, but will need further testing to determine where on the spectrum he is.

Although we have suspected there was something wrong with my son to finally have it confirmed is such a shock, where do we go from here?.

The Educational Psychologist has referred him for the further testing but now also wants to refer him for help to Notre Dame Centre for help with his attatchment issues she says he has ( i didnt think he had any issues here) and also for help with his social and emotional issues as he cannot interact with his peers.

He has had a few issues with bullying in his Primary school although the school is on top of this but as he starts Senior school in August i am panicking for him with the transition to senior school. I have also been told academically he is well below his peers but his general knowledge far exceeds his peers.

Please help im just so confused right now on where to go and what to do now .

Ah, your reply made both me and my husband cry! It just means so much to us that some-one understands, and cares enough to give us that support. It really does feel like a very dark time for us, and it does help that someone else has been there, and is coming out the other end.

You sound strong and happy, and i am so pleased to hear you have that good relationship with your son. You are right in saying about avoiding those confrontations...we are the same and dread the next meltdown. I think we need to work on those withdrawals of priveliges too, rather than trying to argue with him, and we need to try and explain to him what we expect from him. We do praise the good behaviour, but the meltdowns are exhausting! I think you are right, we need to discipline lovingly, and deal with the consequences of that when they arise.

Thank you once again. It does make a difference. Sending our best wishes to you

Glad to hear you're living somewhere so nice. I love Derbyshire!

I really don't know what to suggest re the melt downs and the low self esteem. It sounds like you're doing all the right things already. Our daughter also loves her brother but can come off a bit worse for wear sometimes and we can't let it pass. He gets really stroppy when we speak to him about it - but is getting better. On the whole we try to teach him that as long as he reacts appropriately - as it listens and tries to take in what we're saying, then we won't be cross, but we do need to let him know about what he's done. We tell him that if he doesn't listen to us or try to take it in, then we will be cross and this will lead to more trouble for him, and us cancelling a privelidge, such as computer time or tv etc. Really we're trying to teach him how to respond and over a long time there has been improvement.

I remember when he was about 4 or 5 I was really quite frightened of his outbursts and the way he kicked and screamed. This went on for quite some time until I realised I was avoiding confrontation with him and it was affecting my relationship with him. I decided I had to try to get through to him, which I wasn't doing, and hang the consequences - I would just deal with it. This worked for me and we now have a good relationship and I feel that most of the time I can make a connection with him. I don't like his temper, but am not so scared of it. I think he's also more secure because we're trying to get through to him and we have tighter boundaries for him.

Sorry, that's a bit of a woffle, but it really does sound like you're doing a great job. I just hope things improve for you and you all come out the other end stronger.

Dear all,

I've read this post with interest. Our son is 3 and a half, and I fear for the future.  I don't know how to deal with him or how he / we are going to make it through life!!  My heart breaks for his him, and his brother, who deals with him really well. Reading how some of you deal with things and what can occur is scary but at the same time I can see that we will not be alone, and that people do go on.  We have to, right? Wishing you all the very best.

Thank you once again

We are lucky enough to live in a beautiful part of the countryside in Derbyshire, and we do make the most of it with regular walks etc. The school our son goes to is in a  beautiful setting and split across two sites...infants and juniors. We have had our struggles to get him assessed and get him the help and support he needs, and have come up on so many barriers and shocking negativity, (boy have we had to toughen up!) but i think we might finally be getting there with the school side of things now.

Now for the even trickier bit.....the constant meltdowns. How on earth do we cope with the aggressive outbursts and total meltdowns? Life is a constant stuggle where we feel as though we are walking on egg shells trying to keep things calm and have as stress free a day as we can for everyone, especially our little girl who as we speak, is nursing the most awful bruise on her leg from where my son kicked her....not for any reason, just because she happened to be in the way! She is so forgiving, but the bad behaviour has to be dealt with, and we just dont know how to do it! We do constantly praise the good behaviour and work on his self esteem, but how do we discipline the bad behaviour. i have sent him to sit on his bed and think through what he has done and we will talk about it....but he then goes into total meltdown and can't cope with life and doesnt want to go on.

Sorry for going on, but we really are at our wits end, not knowing how to move on from this diagnosis and seeing a way forward. we really feel we are losing the plot here and i don't want to lose sight of the gorgeous boy my son is as it's being overshadowed by all this.

Hi there.

I don't mind you asking - just didn't want to put in too much info to begin with.

We've made 2 major changes to our lives as a family. The first was to move away from a fairly inner city location and school, where our son was having a dreadful time. He was the only white boy in his class - which we didn't mind at all, except that the other boys didn't have the same interests or family lives, so he had absolutely nothing in common with them. As he was struggling anyway to make friends, it was fairly awful for him and he felt very lonely, which contributed to his low self esteem etc. We moved to rural Scotland and now live in a very small village where he is allowed quite a lot of freedom as it's pretty safe. He goes to a school in the next village and is in a class of 18. The other boys have much more similar interests etc, so whilst we mourn the loss of the multicultural background we wanted our kids to have, he's actually so much happier and has friends. We chose this school because they have a SEN co-ordinating role for the area and have, on the whole, been pretty sympathetic (although it's not all plain sailing), apart from with the most extreme behaviour.

We've also found that there are far more resources in the area compared to where we were before. We had very little agency support there, but within a few months of being here we'd been referred to all kinds of services we didn't know existed and got free night time pants delivered to the door!

The second change has been in our patterns of work. It gradually emerged that we couldn't sustain 2 of us working more or less full time, with children in childcare out of school hours. Our son just didn't get on well with this, so we've had to reduce our hours so that one of us is at home most of the time. This of course has meant a large reduction in our family income! This wasn't particularly a choice - but it wouldn't have been right to carry on how we were. After school club was just too un-structured for him to be there 3 or 4 days a week.

So there you are. Poor but calmer! It must also be said that the whole family has benefitted from the move from the city, so we don't regret it at all.

All the best!