Autistic son and school...
Discussion
Not sure if this is the right section or not.
My four year old son is diagnosed as autistic. He's a bright, funny highly functioning little boy, a great chap. He's at a mainstream school but we are having a total nightmare on so many levels, he just won't settle and every day I wait for a phone call to say he's had a meltdown. He doesn't really have these at home or when we are out and about, only at school. He says he does not like school, but his speech is delayed and its hard to get him to articulate what he means. My wife and I are at the end of our tether, the whole thing seems so complex and it's eating us up. We are exhausted and my wife is struggling to cope as we also have another toddler and little family support. Looking for any kind of advice or shared experience really. I'm very worried about him accessing education.
Thanks all.
My four year old son is diagnosed as autistic. He's a bright, funny highly functioning little boy, a great chap. He's at a mainstream school but we are having a total nightmare on so many levels, he just won't settle and every day I wait for a phone call to say he's had a meltdown. He doesn't really have these at home or when we are out and about, only at school. He says he does not like school, but his speech is delayed and its hard to get him to articulate what he means. My wife and I are at the end of our tether, the whole thing seems so complex and it's eating us up. We are exhausted and my wife is struggling to cope as we also have another toddler and little family support. Looking for any kind of advice or shared experience really. I'm very worried about him accessing education.
Thanks all.
My two are the opposite. They just about cope at school then act out at home. Whilst that is hard, I am very thankful that they can go to mainstream school. It can be much harder to get school to change tactic than it is to try to change parenting styles.
We follow a therapeutic parenting model at home. It’s usually targeted towards children with developmental traumas but works really quite well with other kids who struggle to self regulate, such as children with autism. The Explosive Child is a great book which might help. Or the National Assiciation of Therapeutic Parents.
Parents groups are quite helpful too. In our area there is a great group who run education evenings every month. I have found them very useful for signposting services. The local authority schools inclusion team also provide extra services here.
Ultimately an EHCP is likely to be necessary (this used to be called a statement) if the school aren’t helping him. These are legally binding but do take a lot of work to get.
We follow a therapeutic parenting model at home. It’s usually targeted towards children with developmental traumas but works really quite well with other kids who struggle to self regulate, such as children with autism. The Explosive Child is a great book which might help. Or the National Assiciation of Therapeutic Parents.
Parents groups are quite helpful too. In our area there is a great group who run education evenings every month. I have found them very useful for signposting services. The local authority schools inclusion team also provide extra services here.
Ultimately an EHCP is likely to be necessary (this used to be called a statement) if the school aren’t helping him. These are legally binding but do take a lot of work to get.
Also If he is struggling to settle there may be sensory processing issues at school. It’s very common in people with autism for sensory processing disorder to be present. So noise, strip lighting or other environmental factors may be overwhelming him. My eldest is very light sensitive for example. Weighted blankets or backpacks are quite commonly used as deep pressure seems to be very calming. And also tinted glasses, even ear defenders are used by some kids.
https://spectrumnews.org/features/talking-sense-wh...
https://spectrumnews.org/features/talking-sense-wh...
Edited by oldbanger on Tuesday 13th March 23:56
Firstly I can empathise with how you are both feeling. One of my boys has cerebral palsy and until you are 'in the SEN club' nobody can ever appreciate what a massive, massive impact it can have on life.
My boy is 8 and being honest it's only in the last couple of years where I have finally come to terms with it and adapted or dare I say accepted.
Just remember that there will always be help and there will alway be an answer - you are just in the eye of the storm now.
I can appreciate that at this stage you just want him to be 'normal' and attend a 'normal' school and perhaps the idea of SEN school is the last thing you want to consider, but keep all options open. There are some truly wonderful schools that can teach a totally normal curriculum but have staff that are fully trained to understand and adapt to children with SEN.
Just one final thing to mention as a proactive thing for you. The divorce/separation rate for couples with disabled/SEN children is 80% and I can see why. It can either rip you apart or force you ever tighter. Luckily for us we are closer than we could have ever been.
As you are both no doubt highly stressed and emotional at the moment try to recognise this and talk to eachother, support eachother and face this together. Just be aware that you both may be drifting without realising.
My boy is 8 and being honest it's only in the last couple of years where I have finally come to terms with it and adapted or dare I say accepted.
Just remember that there will always be help and there will alway be an answer - you are just in the eye of the storm now.
I can appreciate that at this stage you just want him to be 'normal' and attend a 'normal' school and perhaps the idea of SEN school is the last thing you want to consider, but keep all options open. There are some truly wonderful schools that can teach a totally normal curriculum but have staff that are fully trained to understand and adapt to children with SEN.
Just one final thing to mention as a proactive thing for you. The divorce/separation rate for couples with disabled/SEN children is 80% and I can see why. It can either rip you apart or force you ever tighter. Luckily for us we are closer than we could have ever been.
As you are both no doubt highly stressed and emotional at the moment try to recognise this and talk to eachother, support eachother and face this together. Just be aware that you both may be drifting without realising.
Op as others have said get it diagnosed, release the funding and support which is fully available.
My now 8 year old (mild autism, anger issues) had trouble in normal school 1 but loved going and they loved him but he was frequently sat outside the heads office - very sad to see.
So we went nuclear and private with a class of 6, £10k and 7 months later it was worse as although they had senco, therapy and meetings they just wanted kids that “fitted in”
So my wife went into hero mode and meticulously checked out every school in the area, many we had no idea existed. He is now doing well in a class of 32 but the place has a lovely atmosphere and fingers crossed it’s set till 11.
So I have to get her a faster car as the twins go to schools 6 miles apart with 10 minutes start time difference and similar pick up times! But we manage.
If you want a chat with my mrs send me a pm she knows all the funding, caveats and potholes.
My now 8 year old (mild autism, anger issues) had trouble in normal school 1 but loved going and they loved him but he was frequently sat outside the heads office - very sad to see.
So we went nuclear and private with a class of 6, £10k and 7 months later it was worse as although they had senco, therapy and meetings they just wanted kids that “fitted in”
So my wife went into hero mode and meticulously checked out every school in the area, many we had no idea existed. He is now doing well in a class of 32 but the place has a lovely atmosphere and fingers crossed it’s set till 11.
So I have to get her a faster car as the twins go to schools 6 miles apart with 10 minutes start time difference and similar pick up times! But we manage.
If you want a chat with my mrs send me a pm she knows all the funding, caveats and potholes.
You're not alone. There’s a wonderfully supportive magazine and Facebook Group for parents of Autistic children called AuKids. Set up by a mother of autistic twins (I know her) when she had the same challenges as you getting clear, positive information, they have lots of expert professionals involved too. There’ll be articles on schooling in the back issues and I am sure other parents in the Group will have had similar experiences too.
Just search FB for AuKids or go to the website:
www.aukids.co.uk
FYI, the founder has just written a new book too which may be helpful:
www.amazon.co.uk/gp/aw/d/1785924389
Good luck!
Just search FB for AuKids or go to the website:
www.aukids.co.uk
FYI, the founder has just written a new book too which may be helpful:
www.amazon.co.uk/gp/aw/d/1785924389
Good luck!
Can’t really add much more than the above really EHCP will get him either 1-1 support in mainstream or specialist provision where staff know how to cope but you can’t get this without an EHCP. Fact is mainstream can’t cope with the high numbers they have nevermind anyone who has additional needs hence why they are calling you all the time rather than trying to do their job and teach your son this wouldn’t happen in specialist school the staff are property trained to cope with all manner of conditions and severity. How has he been diagnosed with autism and not started with a EGCP?
Good luck.
Good luck.
My son has verbal dyspraxia and hypermobility.
He's 4 years old and only recently did we get his EHCP.
It was a total nightmare and took well over a year to get it all sorted.
I have to say, I honestly think the biggest difference that can be made is having good teachers.
If you can get good teachers who will give him the time needed even just a minute or two to calm them down, it makes a huge difference.
He's 4 years old and only recently did we get his EHCP.
It was a total nightmare and took well over a year to get it all sorted.
I have to say, I honestly think the biggest difference that can be made is having good teachers.
If you can get good teachers who will give him the time needed even just a minute or two to calm them down, it makes a huge difference.
Lovely to see so many posting advice for the OP. As someone inexperienced with autism and the education system there are acronyms in there I'm not sure I understand. Bear in mind the OP might be in the same boat if he's new to all this.
SEN is special educational needs I think, so presumably SENCO it's either SEN coordinator or SEN children's officer?
No idea what EHCP is.
If you have Netflix then try Atypical, there's an episode where the Dad goes to a parents support group and hates it because of the jargon. It's not what any of you intend, but can alienate people that are new to all of it.
Good luck OP, I suspect there's no right answer. Different schools suit different people for different reasons, there's no one size fits all for any kid and I assume this is likely to be more extreme for your lad. My advice (and I'm not even a parent yet, but I was often asked for advice on schools as a teenager because I went to a Grammar) is that nothing beats going to a school and meeting the staff, then taking your lad and asking his opinion. Ratings, reports and prospectus tell you very little in reality. Feeling safe and comfortable in a learning environment makes more difference
SEN is special educational needs I think, so presumably SENCO it's either SEN coordinator or SEN children's officer?
No idea what EHCP is.
If you have Netflix then try Atypical, there's an episode where the Dad goes to a parents support group and hates it because of the jargon. It's not what any of you intend, but can alienate people that are new to all of it.
Good luck OP, I suspect there's no right answer. Different schools suit different people for different reasons, there's no one size fits all for any kid and I assume this is likely to be more extreme for your lad. My advice (and I'm not even a parent yet, but I was often asked for advice on schools as a teenager because I went to a Grammar) is that nothing beats going to a school and meeting the staff, then taking your lad and asking his opinion. Ratings, reports and prospectus tell you very little in reality. Feeling safe and comfortable in a learning environment makes more difference
It sounds like you've got support services and so on there. Get him onto early intervention etcetera and fill your boots. Getting professionals onto it at this early stage can make a lot of inroads into the problem. You (or your missus, whoever he is closest to) could have a decent chat about his day before bed - he in bed, you sitting alongside or whatever. Be patient and let him talk and ask gentle questions. The other to try the odd chat too as the little terrors do hold back things from one parent but will tell the other (but don't tell mum!). Then you can start to get a picture about the school environment and what's going pearshaped. See if you can set up a regular chain of comms with his teacher, say via email. Good luck with it all.
Edited by rodericb on Wednesday 14th March 08:09
Some great advice in this thread, ive also found the NAS website has some useful information on it.
My son was diagnosed as ASD when he was 3, he is now 7. At first, knowing little about autism it came as a real shock getting that diagnosis, even though we suspected. Or at least my wide did in the main, she was brilliant in this regard and has been ever since.
We had him in mainstream primary school (and still do) but the SENCO was not particularly good in our opinion, so we moved. As it happens we moved counties; this being something we also were doing to secure a better way of life, rural living etc. We have found and been told that there is significant variation in provision for ASD services and assistance between regions. The new school had an inexperienced but very enthusiastic and capable teacher as the SENCO and the school have been fantastic. Just last month we secured his EHCP which took a lot of work but the school were very helpful. We paid for a private EP report to be done last summer as well which assisted.
As said OP, some good advice in this thread, keep us updated as how things progress.
My son was diagnosed as ASD when he was 3, he is now 7. At first, knowing little about autism it came as a real shock getting that diagnosis, even though we suspected. Or at least my wide did in the main, she was brilliant in this regard and has been ever since.
We had him in mainstream primary school (and still do) but the SENCO was not particularly good in our opinion, so we moved. As it happens we moved counties; this being something we also were doing to secure a better way of life, rural living etc. We have found and been told that there is significant variation in provision for ASD services and assistance between regions. The new school had an inexperienced but very enthusiastic and capable teacher as the SENCO and the school have been fantastic. Just last month we secured his EHCP which took a lot of work but the school were very helpful. We paid for a private EP report to be done last summer as well which assisted.
As said OP, some good advice in this thread, keep us updated as how things progress.
OP - does he have speech and language assistance or interventions?
To add to comments above, there are specialist schools available. I initially was completely against the idea of even speaking of them for our son - the stigma, the acceptance of his difference, all quite hard to come to terms with. Even though he remains in mainstream at the moment at 7yrs old, we have done research into ones nearby, and we remain very much open to the idea that if either the primary can't provide what he needs in the future, not through lack of willing but more by design, then this would be something we would consider. Or if not for primary then we will still keep options open for when he's 11 and needs to move to secondary school, although we are blessed having moved to an area to secure a better (in our opinion) future that they are still really good in their provision.
To add to comments above, there are specialist schools available. I initially was completely against the idea of even speaking of them for our son - the stigma, the acceptance of his difference, all quite hard to come to terms with. Even though he remains in mainstream at the moment at 7yrs old, we have done research into ones nearby, and we remain very much open to the idea that if either the primary can't provide what he needs in the future, not through lack of willing but more by design, then this would be something we would consider. Or if not for primary then we will still keep options open for when he's 11 and needs to move to secondary school, although we are blessed having moved to an area to secure a better (in our opinion) future that they are still really good in their provision.
Edited by Last Visit on Wednesday 14th March 08:11
Just swapped messages with Debby at AuKids over your post and she said do get in touch if you’d like:
aukidsmag@gmail.com
If you prefer to read, she recommended:
“Best book explaining autism EVER is Understanding Autism by Clare Lawrence published by Emerald Guides. Best schooling guide EVER is Flying Starts by Adele Devine published by Jessica Kingsley www.jkp.com With both of these he and school will have the info they need.”
aukidsmag@gmail.com
If you prefer to read, she recommended:
“Best book explaining autism EVER is Understanding Autism by Clare Lawrence published by Emerald Guides. Best schooling guide EVER is Flying Starts by Adele Devine published by Jessica Kingsley www.jkp.com With both of these he and school will have the info they need.”
oldbanger said:
Also If he is struggling to settle there may be sensory processing issues at school. It’s very common in people with autism for sensory processing disorder to be present. So noise, strip lighting or other environmental factors may be overwhelming him. My eldest is very light sensitive for example. Weighted blankets or backpacks are quite commonly used as deep pressure seems to be very calming. And also tinted glasses, even ear defenders are used by some kids.
https://spectrumnews.org/features/talking-sense-wh...
Oh boy does that ring bells, I’m 6 weeks away from 57 and only found out 4 years ago, my brain filters nothing out, light, sound, movement, everything goes in, I just thought it was me.https://spectrumnews.org/features/talking-sense-wh...
Edited by oldbanger on Tuesday 13th March 23:56
I register on most autism scales and very heavily on dyspraxia.
It’s only because my fabulously patient wife who just happens to be a brilliant psychologist specialising in addiction and behaviour spotted it straight away that I know I am not a ‘wrong-un’
Mind it’s taken her years to get me to listen
My son has aspergers and adhd, he is 8, was diagnosed 2 years ago now.
Prior to having the diagnosis we knew something was wrong so we engaged with the school. Things we implemented to help him was having sensory chew toys for him, resistance bands around the front two legs of his seat for him to kick against, time out tent for when he knew he was going to go, making sure all teachers knew and that he was allowed a certain amount of lee-way re behavior. His teacher used visual queues for him, such as a weekly timetable on the wall so he knew exactly which class was when, no unexpected surprises.
Changes to his school routine, trips out, xmas fun etc, were telegraphed to him well in advance.
Also leaving school was a problem for him, too many people milling around, he was allowed to sit and read for 10 minutes whilst the playground dispersed.
It's just trial and error finding things that work.
Good luck, its a difficult path but you can put things in place to help your child. As they get older and can understand themselves a bit more it helps enormously.
Prior to having the diagnosis we knew something was wrong so we engaged with the school. Things we implemented to help him was having sensory chew toys for him, resistance bands around the front two legs of his seat for him to kick against, time out tent for when he knew he was going to go, making sure all teachers knew and that he was allowed a certain amount of lee-way re behavior. His teacher used visual queues for him, such as a weekly timetable on the wall so he knew exactly which class was when, no unexpected surprises.
Changes to his school routine, trips out, xmas fun etc, were telegraphed to him well in advance.
Also leaving school was a problem for him, too many people milling around, he was allowed to sit and read for 10 minutes whilst the playground dispersed.
It's just trial and error finding things that work.
Good luck, its a difficult path but you can put things in place to help your child. As they get older and can understand themselves a bit more it helps enormously.
All, thanks, I'm blown away by so many responses overnight. Here is some more info.
He has an EHCP which calls for a number of things to support him including a 1:1 key worker, trained staff etc, speech and language help. Quite honestly, the school were not ready for him in my opinion. There was a change in headship over the summer, the key worker was not appropriate and had no training in ASD (none of the other staff do, even though the EHCP calls for it). Then the class teacher left at Christmas and was replaced in the new year. The replacement is lovely and so much more engaged.
When he started school they put him on reduced hours and he was coming home at 11am. That's now been extended to 1.30pm.
Its taken us five months to actually get them to swap key workers, we knew after week four of him starting that it was a problem, but we tried to make the best of it. His new key worker is totally different but they are having a hard time unwrapping the whole thing and working out how best to support him.
He still doesn't have a formal respite space inside the school where he can go. It took them months to buy a little tent but that is in a room that other kids use, so he doesn't like to go there. The SENCO is based on another site nearby and isn't resident.
Staff are keeping a log of his behaviour to try and identify his triggers. Some days he has been totally fine. Some days are total meltdown and we get a phone call.
I think the first five months have been a total nightmare for him, issues with his key worker, a class teacher who was not engaged, lack of training, lack of facilities. It could not have been much worse. I walked in to this thinking "EHCP, problem solved!". I was wrong.
I'm very reluctant to take him out, I want the school to deliver on their responsibilities but i also want to work with them in doing so. I'm worried about damaging his self esteem.
On a positive note, his phonics and writing have come on, but his delayed speech is an issue making friends and communicating his feelings.
Regarding relationships, yes its a real strain. Its hard not to snap at each other. Sometimes to feels like its relentless pressure, day in day out. Its very hard on my wife, and I find it hard to concentrate at work, because I'm very worried about him and also my head is full of thoughts about what to do.
He has an EHCP which calls for a number of things to support him including a 1:1 key worker, trained staff etc, speech and language help. Quite honestly, the school were not ready for him in my opinion. There was a change in headship over the summer, the key worker was not appropriate and had no training in ASD (none of the other staff do, even though the EHCP calls for it). Then the class teacher left at Christmas and was replaced in the new year. The replacement is lovely and so much more engaged.
When he started school they put him on reduced hours and he was coming home at 11am. That's now been extended to 1.30pm.
Its taken us five months to actually get them to swap key workers, we knew after week four of him starting that it was a problem, but we tried to make the best of it. His new key worker is totally different but they are having a hard time unwrapping the whole thing and working out how best to support him.
He still doesn't have a formal respite space inside the school where he can go. It took them months to buy a little tent but that is in a room that other kids use, so he doesn't like to go there. The SENCO is based on another site nearby and isn't resident.
Staff are keeping a log of his behaviour to try and identify his triggers. Some days he has been totally fine. Some days are total meltdown and we get a phone call.
I think the first five months have been a total nightmare for him, issues with his key worker, a class teacher who was not engaged, lack of training, lack of facilities. It could not have been much worse. I walked in to this thinking "EHCP, problem solved!". I was wrong.
I'm very reluctant to take him out, I want the school to deliver on their responsibilities but i also want to work with them in doing so. I'm worried about damaging his self esteem.
On a positive note, his phonics and writing have come on, but his delayed speech is an issue making friends and communicating his feelings.
Regarding relationships, yes its a real strain. Its hard not to snap at each other. Sometimes to feels like its relentless pressure, day in day out. Its very hard on my wife, and I find it hard to concentrate at work, because I'm very worried about him and also my head is full of thoughts about what to do.
67Dino said:
Just swapped messages with Debby at AuKids over your post and she said do get in touch if you’d like:
aukidsmag@gmail.com
If you prefer to read, she recommended:
“Best book explaining autism EVER is Understanding Autism by Clare Lawrence published by Emerald Guides. Best schooling guide EVER is Flying Starts by Adele Devine published by Jessica Kingsley www.jkp.com With both of these he and school will have the info they need.”
Thanks Dino, will drop her an e-mail!aukidsmag@gmail.com
If you prefer to read, she recommended:
“Best book explaining autism EVER is Understanding Autism by Clare Lawrence published by Emerald Guides. Best schooling guide EVER is Flying Starts by Adele Devine published by Jessica Kingsley www.jkp.com With both of these he and school will have the info they need.”
Go see the head, your lads school is s
t. This isn't your problem, the school aren't catering to your disabled sons needs and are likely in breach of numerous laws and regulations with regards to his care.
You need to realise this isn't your or your wife's fault or problem, the school needs to figure out what they are doing wrong and fix it, they cant be calling you everyday because he's had a meltdown.. You've learnt to adapt to his needs in the last 4 years, the school needs to pull its finger out and do the same.
t. This isn't your problem, the school aren't catering to your disabled sons needs and are likely in breach of numerous laws and regulations with regards to his care. You need to realise this isn't your or your wife's fault or problem, the school needs to figure out what they are doing wrong and fix it, they cant be calling you everyday because he's had a meltdown.. You've learnt to adapt to his needs in the last 4 years, the school needs to pull its finger out and do the same.
Edited by Foliage on Wednesday 14th March 09:37
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