ASD getting worse with age

[simplefree]

My daughter 15 has just being diagnosed a couple of months ago and somehow I think it is getting worse…common sense / executive skills / anxiety / independence / black white thinking

Will it get better?

I think 15 is a difficult age. All the stress of GCSE's coming up and then the huge worry of what she will do as an adult. So I think what you are seeing is stress rather than the ASC itself getting worse.

Having said that mine (now 20) have both improved. Getting GCSE's helped boost their self-esteem (they were at special school / had home tutors). ds1 is coping at university (second year now). ds2 is doing a work-ready course and coping with going out of the house to that even if it is not particularly inspiring him & is going to apply to university for next year. Not sure if he will cope but a massive improvement that he is even considering it.

thanks @OneInEight - she has just been enrolled in a special school but is also struggling to attend there and the part time schedule has been reduced already!
GCSEs are around the corner.

Do you know what are the options in case she does not take them (I didn’t go to school in the UK)

There are colleges that offer vocational courses if she dosn't get her GCSE's. What sort of interests does she have? Some mainstream further education colleges have a class specifically for pupils with an SEn to teach independence school but as large overall she might not cope??? There are also several independent specialist further education colleges around - she would need an EHCP to get a place at one of these. They are very variable in what they offer in terms of courses & what they offer in terms of therapies (e.g. helping her manage her anxiety). The advantage is they are much smaller. The other possibility is that there are a range of training colleges for over 16's (to 18 without an EHCP or 25 with an EHCP) that offer vocational courses and the chance to catch up on maths and english (google Jupiter or NACRo as examples). These are not specificially for pupils with an SEN but because they are small might suit (ds2 who likewise has a lot of social anxiety is coping attending one of these).

thank you so much - very helpful - I will look into everything

she is interested in games designing and identified one college - they require GCSEs maths/english 3 I think which she could achieve if she could go to her special school - open day was today and we planned be there but is not going to happen

independent education is out of our reach though

She has an EHCP and there are various professionals involved

Independent schools can be funded via the EHCP.

An EHCP can continue until 25 or 26 in some cases, so if DD can’t sit GCSEs this year it’s not the end of the world. If she wants to sit GCSEs she can sit them later or there are other courses.

Are there therapies in the EHCP? OT, SALT, MH therapies.

If DD enjoys gaming/game design have a look at Mindjam.

If DD can’t attend school full time the LA should be providing alternative provision. Are they? And if attending at all is unsuitable EOTAS via the EHCP is a possibility.

Sometimes rather than getting worse it DC become less able to mask as they get older as demands increase. Some also find they are less able to to mask after being diagnosed.

Thank you!

I didn't know independent schools can be funded by EHCP! I wonder if she could get into an online school to help her with the GCSE if she does not manage this year?

When her mainstream school was 'pushing' for me to find another school In was looking only at estate funded and could not find anything until I came across a new-ish provision right in our borough for YP suffering from 'school avoidance' - it turns out all of them have ASD and all of them are on a part time timetable but since they have been there together from the beginning of the term and DD was then accepted only before Christmas she is struggling to attend after seeing out of school for such a long time. They are all lovely though and putting steps in place for her to attend.

When her EHCP was final last year she was only receiving therapy from CAHMS and useless provision from her mainstream school where they frankly didn't genuinely care and didn't have a clue. She didn't have an ASD diagnosis back then - on the next meeting I will ask for it to get updated as she has one now. Also she was only receive CAMHS therapy but now she has been referred to psychiatry, occupational therapy, ARFID eating disorder and a nutritionist on top of her therapy being renewed with the same therapist. We also have a social worker who allegedly is specialist on families with neurodivergent YP that showed up just before Christmas with lots os plans and promises but who has not come back to us yet since. Sadly I just have her name and surname as all phone call were done via withheld number and she was supposed to send me an email after her visit but never did.

Our GP is quite involved too and is on the loop, he calls me every week or two.

I am feeling much more hopeful now. What does EOTAS mean?

Online schooling can be funded via EHCPs, or if more appropriate home tuition. EOTAS is education otherwise than at school i.e. provision that doesn’t involve attending a registered school. DS1 has an EOTAS package which amongst other things includes home tuition and therapies.

You need to ask for an early review of the EHCP (IPSEA have a model letter you can use) as if it doesn’t include therapies and DD is struggling to attend full time it isn’t fit for purpose. Did DD not have an OT and psychiatrist assessments as part of the EHCNA? What about SALT? Having therapies in section F means they can be in excess of what would typically be provided via the NHS without sitting on waiting lists, and means it must be provided.

As well this, email the Director of Children’s Services requesting provision under s.19 of the Education Act 1996 as DD is unable attend school full time.

For social care support contact the general number. If that doesn’t work email the Director of Children’s Services - whose email address will be online.

@JustKeepBuilding I appreciate your help, thanks

The OT has just been offered and referred now after the ASD diagnosis a couple of months ago. She os been os psychiatry waiting list of ages but is not part of the EHCP. When she got her EHCP she was still attending mainstream with a special respite provision when needed during breaks and stressful times but she has now moved to a special school since ASD diagnosis albeit not attending as planned.

How do I go on signing up for online school using EHCP?

I am shocked online school was not offered as an option when she was clearly struggling a lot when trying to attend. Lost all her weigh and was literally skin and bones wearing 7-8 years old clothes and the smallest uniform available looked huge.

You need to request an early review of the EHCP - you will need evidence if you want the LA to amend the EHCP to include online schooling. Alongside this request provision under s.19 of the Education Act 1996 as DD can’t attend full time.

Provision in EHCPs is based on the reports as the EHCNA was lacking the provision in the EHCP will be too. If you named a school when you received the draft the LA wouldn’t issue the finalised version including online schooling as a school was suitable so wouldn’t be able to demonstrate provision in a school was inappropriate. Unfortunately, parents should never rely on the LA, professionals or schools for information, the onus is on the parents to investigate what is available.

OT and psychiatry assessments should have been part of the EHCNA so no need to sit on waiting lists.

As well as online schooling being available via the EHCP. DD could have online provision via s.19 of the education act 1996. Longer term though provision via the EHCP will be more comprehensive.

i have just sent an email asking for revision. Ot and psychiatry was not on the table at the time of the EHCP it only came as option once the ASD diagnosis was done. In fact I've been talking about meds from a long time but the therapist was not keen and I had to put my foot down for a referral and even DD told her she wanted to try. It seems that we are nearly there on the top of the list now.

Assessments via the EHCNA aren’t via the normal route, you didn’t need for a normal referral from another professional and there is no sitting on waiting lists. Even though OT and psychiatry (and SALT) hadn’t been mentioned to you as an option, they could, and should, have been part of the EHCNA. DD clearly had relevant needs so you could have requested them.

I hope the LA agree to an early review. So you know, if they don’t there isn’t the right of appeal, you would need to either wait until the AR or request a reassessment of needs which does come with the right of appeal if refused.

If you haven’t already it is worth reading IPSEA and SOSSEN’s website and the SENCOP to understand EHCPs better.

Thank you for all the life saving information

I have emailed DD's therapist who advised me to email the person responsible for the EHCP and see what he says.

I hope she can see a psychiatrist and OT rather sooner than later if he can make a referral - her part time special school provision has already reduced her time table and she is still not able to attend.

@JustKeepBuilding sorry to be a pain but I am still trying to get my head around it all and kicking myself for relying on the LA for info and choices.

I have a question if you don't mind: so if I understood correctly, she needs the EHCP to be amended with the psychotherapy and OT plus whatever else could help in order to not avoid the normal route and queues? As it is now, she will still stay in the queue because the services mentioned above are not stated on the EHCP?

Provision in EHCPs is taken from reports, so you need reports stating DD needs e.g. OT in order for it to be included in the EHCP.

You could have requested an e.g. OT assessment as part of the EHCNA without sitting on the normal waiting lists. If you want OT and psychiatrist assessments via the EHCP now you will have to request a reassessment of needs (as opposed to just an early review) as the EHCNA has already been completed and EHCP finalised. You can do this by sending the Director of Children’s Services the model letter from IPSEA. You can request s.19 provision by emailing the Director of Children’s Services too.

If provision is written into section F of the EHCP then it must be provided. You don’t need to sit on the normal waiting lists.

Outwith EHCNAs and EHCPs the normal waiting list will apply for assessments and provision respectively.

Thank you - I’m much more clear now 🙏🏼

I will write to the director of children’s service again tonight asking for re-assessement of needs rather then the early review

The provision on session F is all about her former school however it never took place because the EHCP was ready just before summer and when the following term started she couldn’t go triggering the referral and acceptance to the special provision outside the school.
As she was already in CAMHS therapy and did not have the ASD diagnosis yet, we hoped that what we had would be enough.

Did you not have an early review when the EHCP was amended for the move to SS?

If DD was/is already receiving CAMHS therapy that should be in the EHCP.

Even if DD can’t attend school the LA have a duty to provide any provision specified and quantified in F.

I suspect I know the answer to this, but section F is specified and quantified isn’t it? No vague and woolly language such as ‘as required’ ‘would benefit from’ ‘opportunities for’ ‘e.g.’ ‘high level’ etc. A woolly and vague section F is unenforceable and isn’t worth the paper it is written on.

I have just checked and the CAMHS therapy is mentioned on the EHCP as "she will continue receiving..." She started therapy from another referral not from the EHCP - even though she was referred to EHCN first, the therapy came before and her therapist attended the EHCP meetings.

Section F is all about the named school and the outcomes DD "will" achieve if she receives xwz support delivered by abcd with the support of SENCO. Never happened because that was agreed right before summer 2022 - she went to school to only one day at the befogging of the term in September 22 and on that day the way she was treated was completely the opposite of what the EHCP recommends and she never went back.

Then I found out about the special provision and asked the EHCNA lead to refer. He did and we had 1 meeting where him, the SENCO, the therapist, myself and the coordinator from the special provision attended and once the place become available she was enrolled. The EHCP has not being updated to reflect this change.

Today I managed to track the social worker and we spoke on the phone. I discussed with her that I requested the early review but will now request a reassessment of needs and she said that the 1st option was better...say what? I tried to discuss further but she told me to get my own independent advice and do my own research - I thought she would be the person to help me with all this? She is an odd one - tries to put words in my mouth and come up with scenarios that are not happening - she assumes A LOT. I am always hyper alert when dealing with her.

Outcomes shouldn’t be in F. They belong in E.

There should have been a review and the EHCP amended. Are you saying section I still names the MS?

Whether you request early review or reassessment depends on what you want. If you want assessments then it’s the latter you want. If you already have the reports and evidence, which doesn’t sound the case, then it’s an early review you want. If you don’t have the evidence but don’t wish for the LA to assess, but instead just want the right to appeal BFI and will seek independent assessments then requesting an early review may be right for you, but there’s always the chance the LA will refuse and there’s no right of appeal so you would then have to request a reassessment of needs anyway or waiting until the AR.

Professionals involved with the LA should never be your point of contact for advice and information. They will tell you what they want you to know and the LAs version of the law.

@JustKeepBuilding you have been incredibly patient with me, thank you

Outcomes are on section E - my mistake

Section F - is the special provision - within the named mainstream school which she attended for the grand total of 1 morning since September - the special provision she is supposed to be attending now is not there and it has not been updated.

Section I - still names the mainstream - I can't explain properly but it is like a joint arrangement, so she is on roll for both provisions but she won't need to set foot on the mainstream anymore and just attend the new special provision and follow their planning (they have been amazing) and we are supposed to have review meetings with the SENCO of the mainstream.

I don't have funds to seek any assessment independently unfortunately.
The OT was refereed in December and it seems like the psychiatrist assessment is coming upon soon but we never know.

My main goal now is to seek for online schooling - We have tried evertyhing:

• Permission to go to the respite room on secondary school 1 when she started to have her issues
• A change of school to secondary school 2
• respite room on secondary school 2
• special provision on secondary school 2
• a new part time programme on special provision 3
• a reduced part time programme on special provision 3

Still not working - special provision 3 will start from the beginning again offering home visits and some online lessons - then an 1:1 at the place then see if she can join the others.

We will take the focus out of exams and GCSEs now and will focus on engaging - she will have the opportunity to do Functional Skills instead. but this will not go beyond the end of Y11 so we will need something after that and since chances are she will not sit GCSEs, I would like her to have the opportunity to have some education come September 2023 because she has missed so much.

If DD isn’t going to attend the MS at all it shouldn’t be in section I. If DD is dual registered then the MS and SS should be in section I. So the EHCP should have been amended when DD moved from the MS to SS. Section F should have been amended too.

If you appeal check whether you would be eligible for legal aid - this can fund up to 2 assessments. If not and you do appeal and need independent assessments contact Parents in Need as they can sometimes help fund them
.

Whilst sorting EOTAS via the EHCP you need to request s.19 provision from the Director of Children’s Services. If provision then isn’t forthcoming contact SOSSEN for help with a pre-action letter. This provision could be online schooling.

but this will not go beyond the end of Y11

Why? EHCPs can continue until 25 or 26 depending on circumstances.

I mean - the special part time provision she is now will not go beyond Y11 - she had a college in mind but without GCSEs and with so much anxiety attending a setting, I don't think she can go to the college right now.

@JustKeepBuilding I am not thinking about appealing. I already requested an early EHCP review but now I am wondering if a re-assessment of needs would be better in order to secure assessments (in case anything else is suggested beyond the ones she is on the waiting list for and even the ones she is on the waiting list for in case she does not reach the top quick enough).

The social worker said they could add her ASD diagnosis on the review and a re-assessement would take longer. Is it possible to request s.19 provision with the early review?

This is such a mess. You should have had a phase transfer review by now, and the EHCP will need amending to name post 16 placement by 31st March. This is something else you need to raise.

A reassessment of needs will take longer, but the provision in EHCPs comes from the reports and evidence. If the reports are missing, lacking or woolly, as they are in DD’s case, the provision in section F will be missing, lacking or woolly. For example, there’s no OT or SALT report, so there won’t be any OT or SALT provision. The MH report is lacking, so the MH provision in the EHCP will be lacking. You won’t get those assessments without a reassessment of needs.

Why are you not thinking of appealing? If the EHCP isn’t fit for purpose and not meeting DD’s needs you need to. If you want EOTAS you may end up having to appeal anyway, as many do have to.

s.19 provision is completely separate to the EHCP process and you should request that now. It should have begun once it became clear DD missed 15 days of school.

*once it became clear DD would miss 15 days of school.