The autism thread
Discussion
Hi all
New to this thread. My son missed out very narrowly on a diagnosis when he was 5. He is now 10 and in the intervening years have had lots of interventions from Speech and Language, OT etc etc. We are now pushing for an EHCP along with the school SENco and the paediatrician who saw him initial for his ADOS has seen the myriad reports and assessment which we've sent him and, on the strength of those, has agreed to see him again.
It is becoming increasingly apparent that my son will struggle at a mainstream secondary school so the diagnosis, EHCP and EP assessment will be vital.
I hope I can find some sort of kinship with those parents who are going through a similar experience as it can be extremely stressful and frustrating.
As an aside, I often feel that I am on the spectrum myself but my 4 year old daughter very much seems NT.
New to this thread. My son missed out very narrowly on a diagnosis when he was 5. He is now 10 and in the intervening years have had lots of interventions from Speech and Language, OT etc etc. We are now pushing for an EHCP along with the school SENco and the paediatrician who saw him initial for his ADOS has seen the myriad reports and assessment which we've sent him and, on the strength of those, has agreed to see him again.
It is becoming increasingly apparent that my son will struggle at a mainstream secondary school so the diagnosis, EHCP and EP assessment will be vital.
I hope I can find some sort of kinship with those parents who are going through a similar experience as it can be extremely stressful and frustrating.
As an aside, I often feel that I am on the spectrum myself but my 4 year old daughter very much seems NT.
stabilio said:
I haven't read through all the pages on this thread but wondered if anyone could give some advice please?
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?
Sorry for not getting back sooner - below are options my wife often gets involved withHas 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?
Socrates.org.uk (Huddersfield)
Judy Eaton at help4psychology.co.uk (my wifes preferred supplier) (Norwich)
axia-asd.co.uk (Chester)
judging by the desription you give, you may wish to look at ADHD as well and Judy Eaton can help with that.
I think most offer 'remote' appointments at the moment. generally speaking you are looking at 1.5-2k although can be dearer.
Schools should accept a private diagnosis as long as its from a suitably qualified person, and not jim from the chippy. :-)
Edited by sparkyhx on Tuesday 6th October 16:33
fat80b said:
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?etc
etc
etc
MrJuice said:
Any experience of using either blankets/lap toys to keep kids focused and sat in one place for longer?
This is not to deny my son breakout space etc. But rather just to keep him focused for longer
I have used a fidget cube in the past and found them useful.This is not to deny my son breakout space etc. But rather just to keep him focused for longer
Daughter uses a weighted blanket, but only for lowering anxiety not concentration.
Sooooo
We named a school in the draft ehcp. The school has all the resources (mainstream school with special provision) but has written back saying they're full to capacity and could not take another child. Fair enough
But some of their reasoning is ridiculous. Consistent with many children with autism, my son is easily distracted, finds Loud noises troubling, needs a breakout space etc. The school have said they're quite big and noises are inevitable, that their breakout space is all spoken for, that the year groups are already oversubscribed etc
The writing is on the wall. But the school have been disappointing. All schools are under pressure with new ways of working etc
Not sure whether to appeal to the SEN panel at the local authority or just accept and move on. The annoying thing is that the school has quoted an ed psych report extensively. The EP report specifically says that it's scope is limited given the EP was unable to assess our son in person. EP basically had a 45min chat with me and did his report which is fair enough given covid. But the school have taken it a gospel and also, they have not done a face to face assessment themselves either.
So they've said no without an objective assessment.
What do we think?
We named a school in the draft ehcp. The school has all the resources (mainstream school with special provision) but has written back saying they're full to capacity and could not take another child. Fair enough
But some of their reasoning is ridiculous. Consistent with many children with autism, my son is easily distracted, finds Loud noises troubling, needs a breakout space etc. The school have said they're quite big and noises are inevitable, that their breakout space is all spoken for, that the year groups are already oversubscribed etc
The writing is on the wall. But the school have been disappointing. All schools are under pressure with new ways of working etc
Not sure whether to appeal to the SEN panel at the local authority or just accept and move on. The annoying thing is that the school has quoted an ed psych report extensively. The EP report specifically says that it's scope is limited given the EP was unable to assess our son in person. EP basically had a 45min chat with me and did his report which is fair enough given covid. But the school have taken it a gospel and also, they have not done a face to face assessment themselves either.
So they've said no without an objective assessment.
What do we think?
sparkyhx said:
fat80b said:
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?etc
etc
etc
The other thing that has triggered us into action is that Victoria was rated as borderline "urgent intervention required" in a recent assessment carried out by all children in her class, and we have had more work come home for which she doesn't have the first idea of how to begin to solve relatively basic maths questions (2 x 5 = ? for example - explaining that it is "two lots of five" in the same way her teacher does and I might as well be speaking Mandarin and even doing it visually with counters and I am basically doing it for her).
Thanks to everyone on this thread for the continued advice and support for me and others here - it really is much appreciated.
MrJuice said:
Sooooo
We named a school in the draft ehcp. The school has all the resources (mainstream school with special provision) but has written back saying they're full to capacity and could not take another child. Fair enough
But some of their reasoning is ridiculous. Consistent with many children with autism, my son is easily distracted, finds Loud noises troubling, needs a breakout space etc. The school have said they're quite big and noises are inevitable, that their breakout space is all spoken for, that the year groups are already oversubscribed etc
The writing is on the wall. But the school have been disappointing. All schools are under pressure with new ways of working etc
Not sure whether to appeal to the SEN panel at the local authority or just accept and move on. The annoying thing is that the school has quoted an ed psych report extensively. The EP report specifically says that it's scope is limited given the EP was unable to assess our son in person. EP basically had a 45min chat with me and did his report which is fair enough given covid. But the school have taken it a gospel and also, they have not done a face to face assessment themselves either.
So they've said no without an objective assessment.
What do we think?
It will be the default response and worth pursuing further, but get some advice locally how best to do it. Your local NAS group would probably be a good place to start.......there will almost certainly be someone on there who can help and probably been in exactly the same situation.We named a school in the draft ehcp. The school has all the resources (mainstream school with special provision) but has written back saying they're full to capacity and could not take another child. Fair enough
But some of their reasoning is ridiculous. Consistent with many children with autism, my son is easily distracted, finds Loud noises troubling, needs a breakout space etc. The school have said they're quite big and noises are inevitable, that their breakout space is all spoken for, that the year groups are already oversubscribed etc
The writing is on the wall. But the school have been disappointing. All schools are under pressure with new ways of working etc
Not sure whether to appeal to the SEN panel at the local authority or just accept and move on. The annoying thing is that the school has quoted an ed psych report extensively. The EP report specifically says that it's scope is limited given the EP was unable to assess our son in person. EP basically had a 45min chat with me and did his report which is fair enough given covid. But the school have taken it a gospel and also, they have not done a face to face assessment themselves either.
So they've said no without an objective assessment.
What do we think?
I've been debating getting an ECHP formy youngest but up until COVID we'd been just about muddling through without one - with a lot of work behind the scenes from us.
Unfortunately since COVID her behaviour has really escalated. In just the last two months her attendance is down below 50%, we've had social services investigate us (but not offer any assistance), and now we're onto the second exclusion in just over 3 weeks (both for fighting with other pupils - she doesn't start but she definitely tries to finish unfortunately).
Social services say they can't offer anything, the local autism team don't have capacity to provide any support, CAHMS closed the last referral whilst she was still on the waiting list for counselling. She is a pupil premium plus child but the extra funding doesn't have to be spent on her personally, and I only met the designated LAC teacher for the first time this week, three years after she started at the school (and she has no knowledge of my daughter). The school are quibbling about organising a youth mentor for her in case there is a cost (I have even offered to pay).
We are quite rural so we've not got a lot of options in terms of alternate schools and she's already at the best mainstream school for SEN in the borough. So, if nothing changes with the latest exclusion (assuming it's not permanent) I think an ECHP is the way forward.
My eldest, however, started college in September. Some things have been quite hard to adjust to - a new location, new friends, and a completely different style of teaching/learning - but overall I think she's going to really thrive there. For a start she now just doing the one subject (art) and doing a course which will allow her to go on to university if she wants to. She's even organised her own work experience - already! She started that last week.
Unfortunately since COVID her behaviour has really escalated. In just the last two months her attendance is down below 50%, we've had social services investigate us (but not offer any assistance), and now we're onto the second exclusion in just over 3 weeks (both for fighting with other pupils - she doesn't start but she definitely tries to finish unfortunately).
Social services say they can't offer anything, the local autism team don't have capacity to provide any support, CAHMS closed the last referral whilst she was still on the waiting list for counselling. She is a pupil premium plus child but the extra funding doesn't have to be spent on her personally, and I only met the designated LAC teacher for the first time this week, three years after she started at the school (and she has no knowledge of my daughter). The school are quibbling about organising a youth mentor for her in case there is a cost (I have even offered to pay).
We are quite rural so we've not got a lot of options in terms of alternate schools and she's already at the best mainstream school for SEN in the borough. So, if nothing changes with the latest exclusion (assuming it's not permanent) I think an ECHP is the way forward.
My eldest, however, started college in September. Some things have been quite hard to adjust to - a new location, new friends, and a completely different style of teaching/learning - but overall I think she's going to really thrive there. For a start she now just doing the one subject (art) and doing a course which will allow her to go on to university if she wants to. She's even organised her own work experience - already! She started that last week.
wiggy001 said:
- We were advised that a private diagnosis would not be of any use to us so please do check and double check that
Some LAs will say this but provided the assessment has been properly carried out, following the right guidance and by appropriately qualified people, they can’t make the position stick. Well worth tracking down ex-NHS specialists operating privately and asking them about their experience/record of getting private assessments accepted in the relevant region. We had pushback from one individual about a private assessment but they quickly backed down...Sadly the relevant services in the UK are massively underfunded. Delaying assessment and arguing the toss about what needs to be in EHCPs unfortunately seems the be a response to budget issues. It’s a tragedy for many that by the time they’ve worked through the process, if they even do, years of support have been missed as a result.
LooneyTunes said:
wiggy001 said:
- We were advised that a private diagnosis would not be of any use to us so please do check and double check that
Some LAs will say this but provided the assessment has been properly carried out, following the right guidance and by appropriately qualified people, they can’t make the position stick. Well worth tracking down ex-NHS specialists operating privately and asking them about their experience/record of getting private assessments accepted in the relevant region. We had pushback from one individual about a private assessment but they quickly backed down...Sadly the relevant services in the UK are massively underfunded. Delaying assessment and arguing the toss about what needs to be in EHCPs unfortunately seems the be a response to budget issues. It’s a tragedy for many that by the time they’ve worked through the process, if they even do, years of support have been missed as a result.
Happy new year to those following this thread... I daren't ask how Christmas followed by Covid lockdown etc has been for parents as I know only too well that the almost-constant changes to routine are in no way easy at the moment.
My daughter's school (Kent) is closed except for children of key workers and those with an EHCP - as we are still at the application stage we have just restarted home-schooling which really highlights just how far behind she really is. It's also again highlighted that we are not teachers!
At the moment we are contemplating a private tutor and I just wondered if anyone has any experience of going down this route for a child with autism that they would like to share? A quick Google suggests rates of £20 an hour for what looks like a childminder that doubles as a teacher (am I being too harsh?) to £100ish an hour for a special needs teacher with an armful of qualifications and experience.
I'm also not sure whether a private tutor now would be of greatest benefit (as it would add yet another change to her life) or whether we should let the covid dust settle and get a tutor to help her "catch up" when things are more stable. And by "catch up", I mean catch up to her potential rather than catching up with her peers.
Any thoughts or experience would be much appreciated.
My daughter's school (Kent) is closed except for children of key workers and those with an EHCP - as we are still at the application stage we have just restarted home-schooling which really highlights just how far behind she really is. It's also again highlighted that we are not teachers!
At the moment we are contemplating a private tutor and I just wondered if anyone has any experience of going down this route for a child with autism that they would like to share? A quick Google suggests rates of £20 an hour for what looks like a childminder that doubles as a teacher (am I being too harsh?) to £100ish an hour for a special needs teacher with an armful of qualifications and experience.
I'm also not sure whether a private tutor now would be of greatest benefit (as it would add yet another change to her life) or whether we should let the covid dust settle and get a tutor to help her "catch up" when things are more stable. And by "catch up", I mean catch up to her potential rather than catching up with her peers.
Any thoughts or experience would be much appreciated.
sparkyhx said:
It will be the default response and worth pursuing further, but get some advice locally how best to do it. Your local NAS group would probably be a good place to start.......there will almost certainly be someone on there who can help and probably been in exactly the same situation.
We appealed to the SEN panel without any specialist advice etc. I just put down what I thought was reasonable and thankfully, the sen panel agreed. The school we were hoping for was named on the final EHCP and our son starts there Monday. I must say the school have been above expectations. We went for an informal tour on Thurs after school and many teachers stayed behind to show us round and greet us. Other teachers were were wfh that week arranged a zoom meeting the next day. They even sent an especially prepared 15 page social story to orientate our son to what he can expect. Really top notch service. God bless them all
I guess what I'm saying is the EHCP journey is long. We started in sept 2018 and it's Jan 2021 and we are finally in the correct place. It's a long process. It may well be a bumpy road for you and your child.
I'm no expert by any means but happy to chat via PM to anyone who needs a sounding board. Equally, happy to lend my thoughts on here.
All the best everyone
wiggy001 said:
Happy new year to those following this thread... I daren't ask how Christmas followed by Covid lockdown etc has been for parents as I know only too well that the almost-constant changes to routine are in no way easy at the moment.
My daughter's school (Kent) is closed except for children of key workers and those with an EHCP - as we are still at the application stage we have just restarted home-schooling which really highlights just how far behind she really is. It's also again highlighted that we are not teachers!
At the moment we are contemplating a private tutor and I just wondered if anyone has any experience of going down this route for a child with autism that they would like to share? A quick Google suggests rates of £20 an hour for what looks like a childminder that doubles as a teacher (am I being too harsh?) to £100ish an hour for a special needs teacher with an armful of qualifications and experience.
I'm also not sure whether a private tutor now would be of greatest benefit (as it would add yet another change to her life) or whether we should let the covid dust settle and get a tutor to help her "catch up" when things are more stable. And by "catch up", I mean catch up to her potential rather than catching up with her peers.
Any thoughts or experience would be much appreciated.
I think this very much depends on your child's needs and what you agree as parents. My daughter's school (Kent) is closed except for children of key workers and those with an EHCP - as we are still at the application stage we have just restarted home-schooling which really highlights just how far behind she really is. It's also again highlighted that we are not teachers!
At the moment we are contemplating a private tutor and I just wondered if anyone has any experience of going down this route for a child with autism that they would like to share? A quick Google suggests rates of £20 an hour for what looks like a childminder that doubles as a teacher (am I being too harsh?) to £100ish an hour for a special needs teacher with an armful of qualifications and experience.
I'm also not sure whether a private tutor now would be of greatest benefit (as it would add yet another change to her life) or whether we should let the covid dust settle and get a tutor to help her "catch up" when things are more stable. And by "catch up", I mean catch up to her potential rather than catching up with her peers.
Any thoughts or experience would be much appreciated.
My wife likes to sign up to all manner of things for our son. He had elective home schooling last term as we finalised his EHCP. She had him doing a day exchange with another home schooled kid. Eg she would drop him to other kids house once a week and other kids mum would school the kids. And vice versa the next week.
Wife signed our son up to kumon.
Forest school.
We found asking other people who were in our positions a year/two/three years prior was good. They'd been through it and had useful insights.
It would be helpful to get the insights of an ed psych if you can. They can assess and advise on what is likely to work for your daughter. EP assessment is usually part of ehcp assessment but can be tricky to arrange at the best of times. During covid times it's yet more tricky. The insights in the EP assessment, albeit limited by virtue of it being a remote assessment, were very helpful to us. Id have happily paid for this privately.
Good luck
So. My youngest is still off school. They have offered a part time timetable of about 90 minutes a week in school with an autism specialist. We tried upping this voluntarily and it’s unfortunately backfired - she was due to go in this afternoon for an hour but spent the morning smashing her room up and screaming. She is now sleeping it off.
I applied for an EHCP over Christmas (I have a 6 week wait for the initial response, likely to be a rejection) and have yet another referral for support underway as if this afternoon. Hey ho
I applied for an EHCP over Christmas (I have a 6 week wait for the initial response, likely to be a rejection) and have yet another referral for support underway as if this afternoon. Hey ho
MrJuice said:
I think this very much depends on your child's needs and what you agree as parents.
My wife likes to sign up to all manner of things for our son. He had elective home schooling last term as we finalised his EHCP. She had him doing a day exchange with another home schooled kid. Eg she would drop him to other kids house once a week and other kids mum would school the kids. And vice versa the next week.
Wife signed our son up to kumon.
Forest school.
We found asking other people who were in our positions a year/two/three years prior was good. They'd been through it and had useful insights.
It would be helpful to get the insights of an ed psych if you can. They can assess and advise on what is likely to work for your daughter. EP assessment is usually part of ehcp assessment but can be tricky to arrange at the best of times. During covid times it's yet more tricky. The insights in the EP assessment, albeit limited by virtue of it being a remote assessment, were very helpful to us. Id have happily paid for this privately.
Good luck
Really appreciate the response. My wife likes to sign up to all manner of things for our son. He had elective home schooling last term as we finalised his EHCP. She had him doing a day exchange with another home schooled kid. Eg she would drop him to other kids house once a week and other kids mum would school the kids. And vice versa the next week.
Wife signed our son up to kumon.
Forest school.
We found asking other people who were in our positions a year/two/three years prior was good. They'd been through it and had useful insights.
It would be helpful to get the insights of an ed psych if you can. They can assess and advise on what is likely to work for your daughter. EP assessment is usually part of ehcp assessment but can be tricky to arrange at the best of times. During covid times it's yet more tricky. The insights in the EP assessment, albeit limited by virtue of it being a remote assessment, were very helpful to us. Id have happily paid for this privately.
Good luck
Our EHCP is in progress (should have initial decision at the end of jan) and we’ve been warned that the local authority may not provide an Ed Psych assessment as part of the assessment for an EHCP so we are completely expecting and willing to pay for this privately.
On a more positive note, it’s funny how life dictates at times. We’ve had new neighbours move in a few weeks before Christmas who are a young couple that seem really nice but due to Covid and winter we’ve not really spoken to too much. Until we took in a parcel for them this week and on taking it round to them discovered that the lady of the house is a special needs teacher at a school that specialises in autism and who also offers private tuition...
Will let you know how we get on with our new tutor.
Good luck to everyone
We started the EHCP process back in Sept 2019 and my child started last week in his new special provision. I lived the last year or so learning the process and trying to move their case forward spending hundreds of hours on the phone, writing emails, researching etc. Getting the plan is the 1st hurdle, finding the right school was the challenge for us. One thing i have realised is the shortage of places within state run special provisions. I've seen demand for independent settings filling up due to this.
tips to note to everyone starting the process.
Certain LA's are worst then others, you might be lucky and be within a good authority but be prepared to fight twice as hard if not
LA have 20 weeks by law to issue the first EHC plan from writing to acknowledge that a plan is needed.
Never accept the first draft, add the information you want to be in there and quantify it with evidence backing this. The vast amount of children fall foul of poor plans as parents are not able to see past the technical jargon. I had 4 revisions before I was satisfied. If they are refusing to put certain details then quote wording from the SEND code of practice - Jan 2015 as to why it needs to have specifics. You really have to go to this detail.
Funding is important to the LA. Wishy washy plans means cheaper funding.
Section B and Section F are key sections of the plan. What ever is put in section F, by law the provision will need to meet. "X will have 1 hour occupational therapy a day with a trained professional" is not the same as "X will have occupational therapy". The LA will try to put the latter.
Get names, dates etc. Be on there case 24/7. The louder parents get heard first. It's just the way it is.
MP, local media and the ombudman are your friends. Use them and make it clear you are in direct contact. Get the emails of senior members of the LA in your emails and put them in the CC. They will not reply but they are reading.
If you name an independent provision in section I you will almost certainly be refused. Be prepared to go to tribunal if this is the case and again, this is a long road. If you are not confident to defend your case there are plenty of solicitors that deal in SEND cases. You just have to weigh up the cost of doing this £5k - £10k+
Good luck to all. Its a slog but worth it in the end. Please message me if you want help or support.
We started the EHCP process back in Sept 2019 and my child started last week in his new special provision. I lived the last year or so learning the process and trying to move their case forward spending hundreds of hours on the phone, writing emails, researching etc. Getting the plan is the 1st hurdle, finding the right school was the challenge for us. One thing i have realised is the shortage of places within state run special provisions. I've seen demand for independent settings filling up due to this.
tips to note to everyone starting the process.
Certain LA's are worst then others, you might be lucky and be within a good authority but be prepared to fight twice as hard if not
LA have 20 weeks by law to issue the first EHC plan from writing to acknowledge that a plan is needed.
Never accept the first draft, add the information you want to be in there and quantify it with evidence backing this. The vast amount of children fall foul of poor plans as parents are not able to see past the technical jargon. I had 4 revisions before I was satisfied. If they are refusing to put certain details then quote wording from the SEND code of practice - Jan 2015 as to why it needs to have specifics. You really have to go to this detail.
Funding is important to the LA. Wishy washy plans means cheaper funding.
Section B and Section F are key sections of the plan. What ever is put in section F, by law the provision will need to meet. "X will have 1 hour occupational therapy a day with a trained professional" is not the same as "X will have occupational therapy". The LA will try to put the latter.
Get names, dates etc. Be on there case 24/7. The louder parents get heard first. It's just the way it is.
MP, local media and the ombudman are your friends. Use them and make it clear you are in direct contact. Get the emails of senior members of the LA in your emails and put them in the CC. They will not reply but they are reading.
If you name an independent provision in section I you will almost certainly be refused. Be prepared to go to tribunal if this is the case and again, this is a long road. If you are not confident to defend your case there are plenty of solicitors that deal in SEND cases. You just have to weigh up the cost of doing this £5k - £10k+
Good luck to all. Its a slog but worth it in the end. Please message me if you want help or support.
Edited by marked1 on Sunday 17th January 21:22
Edited by marked1 on Sunday 17th January 21:23
marked1 said:
Good luck to everyone
We started the EHCP process back in Sept 2019 and my child started last week in his new special provision. I lived the last year or so learning the process and trying to move their case forward spending hundreds of hours on the phone, writing emails, researching
............etc. etc etc
Good advice there, unfortunately the provision is not really there, LA's differ, generally they are not good cos they don't have the cash, and you need to be prepared to fight and shout. Which is wrong cos you shouldn't need to and its unfair on others who don't have the knowledge, contacts, resources.We started the EHCP process back in Sept 2019 and my child started last week in his new special provision. I lived the last year or so learning the process and trying to move their case forward spending hundreds of hours on the phone, writing emails, researching
............etc. etc etc
HappyMidget said:
@sparkyhx; hope you don't mind but I sent you a DM last week about your blog post you linked to. Might be in your junk folder if you haven't seen it already and chosen not to reply 
I'm really sorry, I'm in the process of decorating my 'office' and my personal computer is dismantled. So I haven't seen anything. I have a feeling its gone to an email account I don't have access to on my phone, cos its one I use to register for sites to stop spam. I will DM you with another email address.Also posted lots of links so not sure what you are referring to
Edited by sparkyhx on Monday 25th January 17:32
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