The autism thread
Discussion
WinkleHoff said:
Hi All,
My son is 7 and is Asd. What you might call high functioning, but I always find that a misleading term at times. He is extremely bright, has photographic memory, and scientific understanding well beyond his peer group. Struggles with speech delay and emotional regulation. Often can't stop talking and asking questions - non stop! He's a real character.
...
It's tough being an asd parent. It strains your life in more ways than you can imagine. But I love my boy to bits and I will never stop fighting for him.
Sounds just like my son!My son is 7 and is Asd. What you might call high functioning, but I always find that a misleading term at times. He is extremely bright, has photographic memory, and scientific understanding well beyond his peer group. Struggles with speech delay and emotional regulation. Often can't stop talking and asking questions - non stop! He's a real character.
...
It's tough being an asd parent. It strains your life in more ways than you can imagine. But I love my boy to bits and I will never stop fighting for him.
Sorry to hear of his rough time at school, we are starting out in that respect, but will be keeping a close eye as historically, his school doesn't have a great track record with SEN pupils.
Discovered this brilliant autistic comedian... https://www.facebook.com/NetflixANZ/videos/3099744...
Hi all.
I've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
I've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
wiggy001 said:
Hi all.
I've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
Both mine were in their teens when diagnosed. I know of people who never told their kid and its caused huge problems now they are in their 20's. So you are right to tackle this. I've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
Try NAS they may already have guidelines/approaches, look at adoption sites they may have approaches how they broach the adoption question.
Start slow, do it at their level of understanding, let them ask questions, its not a one off process but a long term repeatable process, bring it into day to day so it becomes something you and they can talk about openly and not taboo.
sorry best I can do
wiggy001 said:
Hi all.
I've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
Curly hair project has resources for girls with autism https://thegirlwiththecurlyhair.co.ukI've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
Our two were diagnosed in secondary school so knew straight away about the diagnosis.
Hi everyone
My son's draft EHCP is due soon. I've never seen an EHCP before but have read many accounts of much to and fro with the council to get it right.
Any advice from people who have been through this?
The ed psych assessment was done remotely because of covid but seems very sensible. I hope the draft EHCP is similarly sensible. Let's see
I'd be grateful for any insights
My son's draft EHCP is due soon. I've never seen an EHCP before but have read many accounts of much to and fro with the council to get it right.
Any advice from people who have been through this?
The ed psych assessment was done remotely because of covid but seems very sensible. I hope the draft EHCP is similarly sensible. Let's see
I'd be grateful for any insights
wiggy001 said:
Hi all.
I've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
This book for 7-11 year olds came out a few months ago from the founders of AuKids magazine and has been a bestseller...I've mentioned previously on here that we have learned a lot about our daughter Victoria (7 years old) during this period of lockdown and one thing we have decided is that it is finally time to sit her down and tell her about her autism. Whilst we are not sure how much will make sense or how quickly it will sink in, she is starting to understand that sometimes she gets angry and frustrated and needs to take some time out, so now feels like the right time.
Victoria loves reading and watching videos online (not just cartoons, but a lot of her learning is done this way too) so we were thinking of additional resources we could read/watch with her or that she could read/watch in her own time in order for her to better understand her autism.
Has anyone used a similar approach in the past and have any recommendations for books/videos? Or any other advice for the moment you broke the news to your little one that there is a name for their difference?
https://www.amazon.co.uk/Ice-Cream-Sundae-Guide-Au...
MrJuice said:
Hi everyone
My son's draft EHCP is due soon. I've never seen an EHCP before but have read many accounts of much to and fro with the council to get it right.
Any advice from people who have been through this?
The ed psych assessment was done remotely because of covid but seems very sensible. I hope the draft EHCP is similarly sensible. Let's see
I'd be grateful for any insights
How old is your son, the younger the better as they haven't developed the masking techniques that hide the condition and can lead to misdiagnosis/under provision of support, especially if it was done remotely. How remotely was it done, Teams/Zoom or telephone?My son's draft EHCP is due soon. I've never seen an EHCP before but have read many accounts of much to and fro with the council to get it right.
Any advice from people who have been through this?
The ed psych assessment was done remotely because of covid but seems very sensible. I hope the draft EHCP is similarly sensible. Let's see
I'd be grateful for any insights
going fwd be cognizant of associated conditions that may also be there especially ADHD or ADD and Dyslexia, Executive functioning problems which can get more problematic as they get older. Bullying and exclusion from peers groups although not EHCP related, can also be a problem
,
Obviously without seeing the EHCP you are not really going to know. What kind of support are you 'expecting' if it doesnt meet your expectations question if that is a problem at your end (over expect) or theirs (missed)
the
He's 6y2m
Has a diagnosis of ASD with features of ADHD. The ADHD needs to be formally diagnosed by a CAMHS psychiatrist. We are not too sure if a formal diagnosis would be helpful or not in terms of getting him support.
Fwiw, he's mostly fairly straight forward to handle/manage/parent. That's probably because he's familiar with us parents but he definitely has his moments when things are very difficult.
The EP assessment looked at previous reports from teachers, SLT, OT. The EP also spoke with me for about 45 mins. And that was that
EP was a sensible chap and said this is a much less than ideal way of assessing but this is all they can offer right now given covid restrictions. He wrote in this report that this was a limited assessment and a full assessment is recommended whenever that can happen.
We would like a mixture of 1:1 support and small age appropriate group work for core subjects on a daily basis. And 1:1 SLT at whatever interval the SLT suggests but fornightly sounds good. And weekly OT.
We will supplement/consolidate at home with OT and SLT homework. And other work but obvs without overloading the boy.
Let's see what the draft says.
Thanks for your post
Has a diagnosis of ASD with features of ADHD. The ADHD needs to be formally diagnosed by a CAMHS psychiatrist. We are not too sure if a formal diagnosis would be helpful or not in terms of getting him support.
Fwiw, he's mostly fairly straight forward to handle/manage/parent. That's probably because he's familiar with us parents but he definitely has his moments when things are very difficult.
The EP assessment looked at previous reports from teachers, SLT, OT. The EP also spoke with me for about 45 mins. And that was that
EP was a sensible chap and said this is a much less than ideal way of assessing but this is all they can offer right now given covid restrictions. He wrote in this report that this was a limited assessment and a full assessment is recommended whenever that can happen.
We would like a mixture of 1:1 support and small age appropriate group work for core subjects on a daily basis. And 1:1 SLT at whatever interval the SLT suggests but fornightly sounds good. And weekly OT.
We will supplement/consolidate at home with OT and SLT homework. And other work but obvs without overloading the boy.
Let's see what the draft says.
Thanks for your post
I haven't read through all the pages on this thread but wondered if anyone could give some advice please?
Our 5yr lad is the very youngest in his year (Aug 31st birthday) and struggled in reception year and the teachers put him in for the 'pathway to autism diagnosis'. We sent off all the forms back to the hospital just before lockdown, but with the NHS being partially shut down, when I called last week they said his form hasn't been looked at yet and is still in a (big) queue and they are only just starting to do face to face appointments again - but can could stop ay any moment.
He's now gone into Year one but is struggling even more. He is a bright boy but just cannot listen and concentrate, tries to run out the classroom and can be sometimes found roaming the corridors if not monitored all the time.
Hes a had a psychotherapist observe him twice trying to put measures in place.
School have moved his desk to the cloakroom where hes on his own with an almost one-on-one teaching assistant.
Even this isn't really working though so school are saying the best thing is to just do part time school time (with the lessons he seems to like most) with the rest home schooling and trying to build up the school hours again over time.
We're ok with this as he did ok home schooling but myself and partner are thinking this school isn't going to be for him long and he will probably need more of a 'special' school.
To do that though, we need to get a diagnosis but this could take a long time.
Has anyone gone down the private diagnosis route to speed things up?
I've also heard that often, schools won't accept a private diagnosis so is it even worth thinking about?
To anyone who has recently gone down the 'pathway to autism diagnosis' on the NHS, how long was the wait from submitting the forms to getting an appointment?
Our 5yr lad is the very youngest in his year (Aug 31st birthday) and struggled in reception year and the teachers put him in for the 'pathway to autism diagnosis'. We sent off all the forms back to the hospital just before lockdown, but with the NHS being partially shut down, when I called last week they said his form hasn't been looked at yet and is still in a (big) queue and they are only just starting to do face to face appointments again - but can could stop ay any moment.
He's now gone into Year one but is struggling even more. He is a bright boy but just cannot listen and concentrate, tries to run out the classroom and can be sometimes found roaming the corridors if not monitored all the time.
Hes a had a psychotherapist observe him twice trying to put measures in place.
School have moved his desk to the cloakroom where hes on his own with an almost one-on-one teaching assistant.
Even this isn't really working though so school are saying the best thing is to just do part time school time (with the lessons he seems to like most) with the rest home schooling and trying to build up the school hours again over time.
We're ok with this as he did ok home schooling but myself and partner are thinking this school isn't going to be for him long and he will probably need more of a 'special' school.
To do that though, we need to get a diagnosis but this could take a long time.
Has anyone gone down the private diagnosis route to speed things up?
I've also heard that often, schools won't accept a private diagnosis so is it even worth thinking about?
To anyone who has recently gone down the 'pathway to autism diagnosis' on the NHS, how long was the wait from submitting the forms to getting an appointment?
This rings true with us
We were referred by GP in Nov 2018. There was something wrong with the referral so it was bounced back to GP. GP didn't do anything. I chased it a month later with community paeds and was told the referral had been bounced. I then chased the GP who sent through the outstanding stuff. We then wait a week before the consultant looks at the referral and accepts or rejects it. He accepted it and we were finally seen more than 20 weeks after initial referral.
We also saw a private paediatrician in the interim who made a provisional diagnosis. But overall, that didn't do anything. It cost £900. We did it because my wife wanted son to be seen and get a provisional idea of what is happening. Fair enough I guess but I'm not sure it helped move things forward for my son really. But it didn't give something to my wife.
Autism in our son put a lot of strain on our marriage. We are dealing with it much better now but lived apart for 18m which was bad for all of us.
For you, I'd check that the referral has been accepted. And then just wait. You could pay for a private review if you wanted answers to some stuff but probably better to spend that money on your son.
All the best
We were referred by GP in Nov 2018. There was something wrong with the referral so it was bounced back to GP. GP didn't do anything. I chased it a month later with community paeds and was told the referral had been bounced. I then chased the GP who sent through the outstanding stuff. We then wait a week before the consultant looks at the referral and accepts or rejects it. He accepted it and we were finally seen more than 20 weeks after initial referral.
We also saw a private paediatrician in the interim who made a provisional diagnosis. But overall, that didn't do anything. It cost £900. We did it because my wife wanted son to be seen and get a provisional idea of what is happening. Fair enough I guess but I'm not sure it helped move things forward for my son really. But it didn't give something to my wife.
Autism in our son put a lot of strain on our marriage. We are dealing with it much better now but lived apart for 18m which was bad for all of us.
For you, I'd check that the referral has been accepted. And then just wait. You could pay for a private review if you wanted answers to some stuff but probably better to spend that money on your son.
All the best
stabilio said:
He's now gone into Year one but is struggling even more. He is a bright boy but just cannot listen and concentrate, tries to run out the classroom and can be sometimes found roaming the corridors if not monitored all the time.
Can't a huge amount in terms of the process, but that sounds just like me at his age, 25 years ago!I wonder if you can contact a suitable 'special needs' school in the area, confirm they can offer what is required, and speak to them about the process required to get him there? Only thinking aloud but they might well know as much about it as anyone else.
My partner works in the NHS and sadly the waiting list of this sort of thing are typically off the scale.
Daniel
stabilio said:
Has anyone gone down the private diagnosis route to speed things up?
I've also heard that often, schools won't accept a private diagnosis so is it even worth thinking about?
To anyone who has recently gone down the 'pathway to autism diagnosis' on the NHS, how long was the wait from submitting the forms to getting an appointment?
We've kind of been down this path. For us the back and forth between the school and the GP was getting us nowhere and we still haven't made much progress with a diagnosis on the NHS. It's measured in years. I've also heard that often, schools won't accept a private diagnosis so is it even worth thinking about?
To anyone who has recently gone down the 'pathway to autism diagnosis' on the NHS, how long was the wait from submitting the forms to getting an appointment?
We were just about to get a private diagnosis when CV hit but haven't yet re-arranged this. (It was in central london and was going to be £1500 after two appointments of £300). PM me if you want the details - I thought the doc and the service was pretty good and whilst not cheap, they were working for us / the boy and I felt like this was going to be super important as we dealt with the school.
We were told by our local authority that a private diagnosis was just as good as an NHS one so was a way to speed things up (but I gather that not all LAs have the same rules). Our school seemed happy that we were going to go private as it would help get the EHCP which ultimately gives them additional support as well.
The home schooling and return to school has been a bit of perfect timing for us if I'm honest. - If it hadn't have come along when it did, I'm pretty sure we'd have been dealing with an exclusion from school aged 7...
In the meantime, we have pushed the school for support and have got through the EHCP process (without a diagnosis) which is something. We have a 1:1 TA for 100% of the lesson time in school and while it won't solve all of the problems, I think it has to help. I am also hopeful that having an EHCP and funded support makes it less likely that he ends up getting excluded but we'll have to see how that goes.
I'll put a separate post together specifically on EHCPs as in my mind, this is of much more use than a diagnosis of any sort tbh.
My advice would be make sure you are in good contact with the LA people (and not just the school) - build a relationship with them and you can push the EHCP forward as this is ultimately the help that the child really needs. A diagnosis is just a step on the way to getting a meaningful EHCP in place.
Edited by fat80b on Tuesday 29th September 21:12
One additional resource we used was IPSEA - https://www.ipsea.org.uk/
Particularly useful when you are dealing with the school - You can get an appointment with someone who can offer various advice on process and the legal bits n pieces. I spoke to them when we were told that we were on the path to a permanent exclusion and they knew exactly what the school was allowed / not allowed to do.
oh and anyone that wants a chat about the various things I've learnt, feel free to PM me and I'll gladly share our journey and approach (what worked and what didn't etc)
Particularly useful when you are dealing with the school - You can get an appointment with someone who can offer various advice on process and the legal bits n pieces. I spoke to them when we were told that we were on the path to a permanent exclusion and they knew exactly what the school was allowed / not allowed to do.
oh and anyone that wants a chat about the various things I've learnt, feel free to PM me and I'll gladly share our journey and approach (what worked and what didn't etc)
fat80b said:
We've kind of been down this path. For us the back and forth between the school and the GP was getting us nowhere and we still haven't made much progress with a diagnosis on the NHS. It's measured in years.
We were just about to get a private diagnosis when CV hit but haven't yet re-arranged this. (It was in central london and was going to be £1500 after two appointments of £300). PM me if you want the details - I thought the doc and the service was pretty good and whilst not cheap, they were working for us / the boy and I felt like this was going to be super important as we dealt with the school.
We were told by our local authority that a private diagnosis was just as good as an NHS one so was a way to speed things up (but I gather that not all LAs have the same rules). Our school seemed happy that we were going to go private as it would help get the EHCP which ultimately gives them additional support as well.
The home schooling and return to school has been a bit of perfect timing for us if I'm honest. - If it hadn't have come along when it did, I'm pretty sure we'd have been dealing with an exclusion from school aged 7...
In the meantime, we have pushed the school for support and have got through the EHCP process (without a diagnosis) which is something. We have a 1:1 TA for 100% of the lesson time in school and while it won't solve all of the problems, I think it has to help. I am also hopeful that having an EHCP and funded support makes it less likely that he ends up getting excluded but we'll have to see how that goes.
I'll put a separate post together specifically on EHCPs as in my mind, this is of much more use than a diagnosis of any sort tbh.
My advice would be make sure you are in good contact with the LA people (and not just the school) - build a relationship with them and you can push the EHCP forward as this is ultimately the help that the child really needs. A diagnosis is just a step on the way to getting a meaningful EHCP in place.
Thanks for this and some good advice there We were just about to get a private diagnosis when CV hit but haven't yet re-arranged this. (It was in central london and was going to be £1500 after two appointments of £300). PM me if you want the details - I thought the doc and the service was pretty good and whilst not cheap, they were working for us / the boy and I felt like this was going to be super important as we dealt with the school.
We were told by our local authority that a private diagnosis was just as good as an NHS one so was a way to speed things up (but I gather that not all LAs have the same rules). Our school seemed happy that we were going to go private as it would help get the EHCP which ultimately gives them additional support as well.
The home schooling and return to school has been a bit of perfect timing for us if I'm honest. - If it hadn't have come along when it did, I'm pretty sure we'd have been dealing with an exclusion from school aged 7...
In the meantime, we have pushed the school for support and have got through the EHCP process (without a diagnosis) which is something. We have a 1:1 TA for 100% of the lesson time in school and while it won't solve all of the problems, I think it has to help. I am also hopeful that having an EHCP and funded support makes it less likely that he ends up getting excluded but we'll have to see how that goes.
I'll put a separate post together specifically on EHCPs as in my mind, this is of much more use than a diagnosis of any sort tbh.
My advice would be make sure you are in good contact with the LA people (and not just the school) - build a relationship with them and you can push the EHCP forward as this is ultimately the help that the child really needs. A diagnosis is just a step on the way to getting a meaningful EHCP in place.
Edited by fat80b on Tuesday 29th September 21:12
It does seem an EHCP is more important than the diagnosis itself.
I know when I called the hospital, the very helpful woman there told me that once diagnosed (whatever the outcome), there job is done with no further support and the child is then off the system as such and all further care is within the community/school etc.
stabilio said:
fat80b said:
We've kind of been down this path. For us the back and forth between the school and the GP was getting us nowhere and we still haven't made much progress with a diagnosis on the NHS. It's measured in years.
We were just about to get a private diagnosis when CV hit but haven't yet re-arranged this. (It was in central london and was going to be £1500 after two appointments of £300). PM me if you want the details - I thought the doc and the service was pretty good and whilst not cheap, they were working for us / the boy and I felt like this was going to be super important as we dealt with the school.
We were told by our local authority that a private diagnosis was just as good as an NHS one so was a way to speed things up (but I gather that not all LAs have the same rules). Our school seemed happy that we were going to go private as it would help get the EHCP which ultimately gives them additional support as well.
The home schooling and return to school has been a bit of perfect timing for us if I'm honest. - If it hadn't have come along when it did, I'm pretty sure we'd have been dealing with an exclusion from school aged 7...
In the meantime, we have pushed the school for support and have got through the EHCP process (without a diagnosis) which is something. We have a 1:1 TA for 100% of the lesson time in school and while it won't solve all of the problems, I think it has to help. I am also hopeful that having an EHCP and funded support makes it less likely that he ends up getting excluded but we'll have to see how that goes.
I'll put a separate post together specifically on EHCPs as in my mind, this is of much more use than a diagnosis of any sort tbh.
My advice would be make sure you are in good contact with the LA people (and not just the school) - build a relationship with them and you can push the EHCP forward as this is ultimately the help that the child really needs. A diagnosis is just a step on the way to getting a meaningful EHCP in place.
Thanks for this and some good advice there We were just about to get a private diagnosis when CV hit but haven't yet re-arranged this. (It was in central london and was going to be £1500 after two appointments of £300). PM me if you want the details - I thought the doc and the service was pretty good and whilst not cheap, they were working for us / the boy and I felt like this was going to be super important as we dealt with the school.
We were told by our local authority that a private diagnosis was just as good as an NHS one so was a way to speed things up (but I gather that not all LAs have the same rules). Our school seemed happy that we were going to go private as it would help get the EHCP which ultimately gives them additional support as well.
The home schooling and return to school has been a bit of perfect timing for us if I'm honest. - If it hadn't have come along when it did, I'm pretty sure we'd have been dealing with an exclusion from school aged 7...
In the meantime, we have pushed the school for support and have got through the EHCP process (without a diagnosis) which is something. We have a 1:1 TA for 100% of the lesson time in school and while it won't solve all of the problems, I think it has to help. I am also hopeful that having an EHCP and funded support makes it less likely that he ends up getting excluded but we'll have to see how that goes.
I'll put a separate post together specifically on EHCPs as in my mind, this is of much more use than a diagnosis of any sort tbh.
My advice would be make sure you are in good contact with the LA people (and not just the school) - build a relationship with them and you can push the EHCP forward as this is ultimately the help that the child really needs. A diagnosis is just a step on the way to getting a meaningful EHCP in place.
Edited by fat80b on Tuesday 29th September 21:12
It does seem an EHCP is more important than the diagnosis itself.
I know when I called the hospital, the very helpful woman there told me that once diagnosed (whatever the outcome), there job is done with no further support and the child is then off the system as such and all further care is within the community/school etc.
- It took nearly 3 years for us to get a diagnosis for our daughter which was primarily due to the availability (or lack of availability) of speech and language therapists. We have since heard that paediatricians at our local hospital (who did the first couple of assessments) are being training in speech and language to help reduce that roadblock in the process. This is in NW Kent so not sure if this is being done elsewhere.
- We were advised that a private diagnosis would not be of any use to us so please do check and double check that
- Prior to getting it we thought that the diagnosis was the end game. We were wrong. It is just the beginning. We left the doctor's room with a diagnosis in black and white, a handful of leaflets about autism and a "good luck". If you don't then push for the help and support you need you are simply left to it.
On this last point, I cannot stress enough how invaluable we have found a local charitable organisation ( wearebeams). They have given us a lot of help, advice, support (including a support group for fathers which I attend). There is no better support than being able to talk to people that have been on your journey already and can offer independent advice that is relevant in your area. It's the reason I started this thread but this or other forums are no substitute for actual conversation with local people.
We have recently spoken to our daughter's school about getting an EHCP and have been advised (by them and an independent assessor) that we should wait. Victoria's needs are described as "complex" as she excels in some areas (reading for example), struggles in others (maths) and is completely different to her peers socially and lacks the understanding that a child of 7 should normally have. It is therefore thought that she would need an educational psychologist assessment and at the moment (in our area at least) they just aren't happening due to Covid. We are going to wait 6 months and see what the situation is then before pursuing this further.
On a different note, I have to say I love it when this thread jumps up to my recent threads again. I genuinely started it to share my story in the hope it might help others, and with the hope that others would do likewise. And I've not been disappointed. I really hope others are getting something out of this as I know I have.
This thread is and example of what is great about PH!
EP assessment
We were also told not to apply for EHCP until that is done. There's always a long wait. We went ahead without it. We were rejected by Sutton (see recent BBC panorama about Sutton....f
king stheads), appealed to tribunal who ruled in our favour that son does need assessment.
We have since moved. Now new local authority is much better. They ordered EP assessment as part of the application for EHCP. It was chat with EP and he took on board all the reports etc from various people that have already been done and wrote a report. Less than ideal but fulfils the purpose to an extent. We can have a repeat assessment when circumstances allow
I'd advise to get the application in. I'm no expert but from what you describe, your daughter clearly has needs and so the assessment will happen. The statutory time limit to complete the assessment from the point at which it is accepted by LA is 20 weeks. You will have to have an EP assessment during that time. I imagine it'll be like ours described above.
I imagine there's some extension to the statutory time limit given covid but our new LA are being sensible. Hope to God you're not on Sutton.
All the best
We were also told not to apply for EHCP until that is done. There's always a long wait. We went ahead without it. We were rejected by Sutton (see recent BBC panorama about Sutton....f
king stheads), appealed to tribunal who ruled in our favour that son does need assessment. We have since moved. Now new local authority is much better. They ordered EP assessment as part of the application for EHCP. It was chat with EP and he took on board all the reports etc from various people that have already been done and wrote a report. Less than ideal but fulfils the purpose to an extent. We can have a repeat assessment when circumstances allow
I'd advise to get the application in. I'm no expert but from what you describe, your daughter clearly has needs and so the assessment will happen. The statutory time limit to complete the assessment from the point at which it is accepted by LA is 20 weeks. You will have to have an EP assessment during that time. I imagine it'll be like ours described above.
I imagine there's some extension to the statutory time limit given covid but our new LA are being sensible. Hope to God you're not on Sutton.
All the best
wiggy001 said:
We have recently spoken to our daughter's school about getting an EHCP and have been advised (by them and an independent assessor) that we should wait.
This is the line that jumps out to me....From what you've said, this makes very little sense when compared to our experience and I'd respectfully 100% disagree with the advice of the school - (We ended up desperate for the EHCP facing permanent exclusion when it finally came through at the end of year 2). What are they waiting for?The EHCP process itself is painful and you need to be working towards it for years to get it through first time.
For example, it helps if the school can demonstrate that they have been self funding support for a period of time - this needs the documentation all in order. etc. To do this, you need to push the school to name a TA just for them, only then do you have the evidence that is needed.
It helps to show the LA interventions that have been tried. All the extra sessions, (we had lego therapy, cooperative play sessions and 1:1 time with two local charities). It all needs documenting.
One thing that we did was ask the school to provide the entire paperwork trail for our boy. You can then sit and go through it building a pattern based on the set of information. You can also see everything that the school have written. (after 2 1/2 years in school, our file stretched to about an inch thick)
If I was you, I would:
1) Get a meeting with the school SEN person - tell them that you want all the paperwork and you want to work with them to build a rock solid EHCP case right now. flatter them.
2) Find out the name of the LA case worker and Ed Psych. Phone them and start bending their ear. Get all the details of the meetings / interventions they have had - Push them to do more - I got the EP to go and visit the school just by asking if they had any cancellations in their diary - by luck they did and I arranged it with the school for them to visit! Not my job as such but you do what you need to do.
We had been round the system 2 or 3 times before we had enough contact with the LA to get through the EHCP. When we submitted, everyone saw it as a formality to get it through because we'd done all of the groundwork.
3) Build the evidence case. Be the person that knows all of the dates and details so that you can reel it off as a long term pattern of behaviour etc whenever you come across a new person in the system,
And lastly - don't let it get you down - it is emotionally hard. My day job is stressful but in a good way, I found this stress way harder.
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