ASD high functioning daughter, secondary schools Surrey - advice please!

Hi I just found your post and was interested in how you got on. My daughter sounds the same (just finished Yr 6 but dropped out twice and currently forced to HE. Would really like to share common experience. I am writing a EHCP request as I have no other options that I can see 

thx 

Yes, it was quite sudden for my daughter. She always used to have the 'I hate school' phases but when she started saying the more 'hardcore' stuff I went back to the school and didn't let them to tell me she is OK and they have been great since - I wonder whether they also realised they should've listened to me earlier... 

I feel as though my daughter is reaching all the 'milestones' but with a huge delay - it's only just now that she started to be interested in actual content of a book (previously she would read the words - with expression and fluently - but if you asked her what she was reading about she would say she doesn't remember). She still uses fingers to count. It seems that she only just now 'plays' with other rather than alongside... I believe if the school system allowed kids to start later - for her maybe when she was 7 then she would do so much better and be happier. 

You are right - I absolutely want to put her well being first, it honestly is so secondary how well she does in her academics - I wonder whether within a mainstream school setting they can be flexible with regards to her following the curriculum or whether it can be tailored to her specifically? I also wonder about part-time homeschooling - it would alleviate her anxiety if she could spend a couple of days at home with me. Also, if she gets EHCP and goes to mainstream school can she use her funding on therapies such as OT, play therapy, etc. Thank you.

Juniper said:

I'm still 'learning' to know my daughter as she is such a complex child - but the self-hating seems to be triggered by pressure - either when academics at school get hard and she can't cope with the speed of learning - she gets taken out for 1:1 work or groups and she doesn't like it because they make her work hard

So it's her, she is not trying hard enough?

I understand where you are coming from, also because I've been there myself at various stages of my now long journey with my children. I suppose it is also a natural part of discovery and adjustment, one goes through stages and not always think of putting a name to our feelings, I was in denial I suppose.

The thing is that most of those many threads about autistic young people crushing into a MH crisis I read on the popular forum for middle class women that all seem quite smug, I count myself among them, that they set up their bright autistic children for oxbridge, making to selective 6-forms, SEN support in place, things going well, then suddenly seeing a total implosion and grasping helplessly for help which doesn't exist because the problem is not sufficiently researched. I had a period when I though problems happen to those other children who are 'low' functioning and 'low IQ', but of course I understand well now that the spectrum is not a line, but a space with multiple axis of various needs in which autistic people have profiles shaped as spider diagrams. Very bright people can have severe needs in some areas and people with intellectual disabilities with the right support can go to university and have rewarding lives. 

This forum is full of graphic accounts of autism barriers, bullying and discrimination catching up with university educated talented people later in their life, or when they are doing their PhD or when they just made it to university, not to count those many teenagers sitting at home on antidepressants, playing computer games and self harming..

I was under impression that school refusal and self harm are quite a high marks on the dial of SEN. Most self harming cases I read about were teenagers in 6 form, coming on the long journey of SEN provisions and various school placements. Having a school refusing and self harming girl in year 5 without her being diagnosed and having EHCP put in place early in primary school is quite unusual. Did you daughter develop these issues quite suddenly? it seem that the problems developed much faster than the school's understanding and it is good that the Senco seem to have caught up with it now. 

I had a generous share of dealing with various professionals and minimising and denial of emotional distress and support needs are not unusual, so it is really important that you listen to your daughter.

Simon Baron Coen reported that 12% of people who died by suicide were autistic.  autistic people have high suicide rate^[i] and high suicide risk^,[ii],[iii] .^. 40% of adults who attempted suicide self-reported high autistic traits^[iv]. 41% of autistic children showed signs of suicidal ideation.^[v]

[i] https://www.cam.ac.uk/research/news/human-rights-of-people-with-autism-not-being-met-leading-expert-tells-united-nations

[ii] Cassidy S, Bradley P, Robinson J, Allison C, McHugh M, Baron-Cohen S. Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. Lancet Psychiatry 2014; 1: 142–7.

[iii] Fowler JC. Suicide risk assessment in clinical practice: pragmatic guidelines for imperfect assessments. Psychotherapy 2012; 49: 81–90.

[iv] https://molecularautism.biomedcentral.com/articles/10.1186/s13229-019-0274-4

[v] https://www.spectrumnews.org/news/reactions-insar-2019/

There is a 15 years old girl posting here on this forum and I find heart breaking her suicidal thoughts and self loathing of her autism resulting from her feeling that she let down her family by being autistic. 

You need to focus on your daughter's well-being, confidence and self worth and separate them from various external attitudes and cognitive biases, including your own. One way of learning about her autism is to listen to the autistic community. Read some threads in here.

I'm still 'learning' to know my daughter as she is such a complex child - but the self-hating seems to be triggered by pressure - either when academics at school get hard and she can't cope with the speed of learning - she gets taken out for 1:1 work or groups and she doesn't like it because they make her work hard (she does like to emotional support work with adults she knows well). Also, when she has nobody to play with - she struggles to approach people to initiate play but once she is in a group she can be very lively and a great fun, it's just the step for friends to get to know her. She also can't cope with unkind behaviour which is starting to happen - it's quite covert as when I mentioned it to the teacher she wasn't aware. It's subtle things like pushing in a line, saying a place is taken at lunch, no, you can't join this game because it's only 4 people game. I mean anyone would get upset but she doesn't have the resilience to recover, so she says things like 'I hate myself' and 'I shouldn't have been born'. Once a Psychologist told me that it's because she doesn't have the language to describe how she feels and goes for the worst thing she can think of, so I tried to rephrase it by saying something like "You feel awful about what people said", etc.I blame myself for not organising more playdates, etc. I mean I did but maybe I should've made more effort. She is now quite happy as she has about 3 close friends who kind of 'adopted' her. 

Loved the video - it really seems like an amazing school, such a shame there aren't more of these. How hard was it to get your daughter in? I liked how the children described what autism is - it so true that when people say 'spectrum' it's not just 'autistic spectrum' but for each aspect of their personality they are somewhere on the spectrum for that individual aspect - like sensory, social, academic, etc. 

Another thought that crossed my mind was - part time schooling with a couple of days to be homeschooled to help reduce anxiety. Of course, this would impact our family financially and I'm not quite sure how would it work, but the SENCO said some people do it. 

Juniper said:

she gets through phases where she seems to cope ok with school's emotional and other demands followed by a phase where she refuses to go to school - threatening to harm herself if we make her.

You know your daughter and what is best for her, but this sounds like evidence that she cannot cope with mainstream school. Do you know what triggers the self harming phase?

I've seen countless threads on various forums about autistic children starting mainstream schools with EHCPs and imploding to the point of school refusal, mental health breakdown, or even exclusion, parents scrambling to find provision able to put their children together again. My own daughter was in total emotional and educational agony, her confidence and sense of self completely crashed, hating herself, having panic attacks everyday, crying herself to bed everyday 'Mum, why is this happening to me?'. 'mum, why can't you help, you promised to help...'.   so for me the only option was to prioritise her well being and build her positive identity. I had to make a tough decision.

I have also seen what happens when you dismantle and withdraw the support that is working, like with my elder daughter. A  complete implosion and mental health crisis at a crucial stage of transition to adulthood. It is taking years to put my elder daughter together.

Obviously the right school for your daughter depends entirely on her needs and you are really well placed to make the right judgement for her.

Many people go through circles of hell and multiple tribunals to get the right placement for their children when they implode at the wrong school. Often that involves a compromise between the support and the academic side as well as long commutes and residential placements. It might be helpful to talk to the other parents of autistic girls in your area and all over the country to get a sense of how things are working out for other girls and boys. You really need to consider and prioritise your criteria very carefully.  You probably might look in the independent sector, and obviously there is a range of independent special schools all over the country, some of the them with eye watering fees. I am not particularly familiar with Surrey schools apart from my research into the suitable schools for my daughter. I had to make my compromises, yet the decision was crystal clear. If you strongly believe that a particular school is the right place for your daughter, you should go for it.

For my daughter Limpsfield Grange is the only place. It takes anxious and sometimes broken girls like my daughter and build them up to be confident, articulate and positive about themselves. Imo this sets them up for independent fulfilling life. Self worth and well being should be a human right for a child.

https://vimeo.com/216052066

Limpsfield Grange is really a unique place with an inspirational head teacher leading innovation in autistic education. If only we had schools like this in every borough, but we don't.

The 'problem' with my daughter is that she gets through phases where she seems to cope ok with school's emotional and other demands followed by a phase where she refuses to go to school - threatening to harm herself if we make her. 

She is just in the middle of the assessment (EP is coming to school on Monday - I'm going to see her too), so I'm not sure we will know the result before we have to apply.

I asked the school's SEN Coordinator for advice on possible schools but she only recommended one school -  Limpsfield college which is 45 minutes away from us and apparently very oversubscribed. My daughter would hate the commute anyway. I was a bit disappointed that despite knowing my daughter and her needs well she wasn't able to give me some more recommendations. 

Currently I'm leaning towards a local mainstream school with (from what I've heard - haven't been able to visit yet) very good SEN provision, medium size and apparently all the kids that go there from the primary school where she is currently get put in the same class. This would help her as she likes familiarity and takes a very long time getting used to new people. 

I don't know the extent of your daughter's needs and whether you are likely to get an EHCP, as usually it is a battle.

The thing about the schools is that if you choose your local mainstream, you will have every flexibility and support from the LA to get your daughter there.

if you choose a mainstream with a unit, it will depend on the EHCP and the availability of places, as well as the transport policy, usually, the LA will push back.

However, if you choose a Special School, unless your daughters needs are clearly seen by the LA as requiring a special school, they will fight back and it would depend on the places as well. 

talk to your local SENDIA as well to check what the LA would do, SENDIAS are good at telling you the LA position.

Thank you for your response, Tinyexplorer, thank you for suggesting the 'Local offer' - I will contact them and see if they are able to help me with regards to narrowing down my search - my issue is that I don't really know where to start with regards to schools as I'm running out of time...  I won't be able to view that many schools before I have to submit my application. I wish my daughter had been diagnosed earlier and that I had realised how time consuming and tricky the whole process would be!

I wonder whether if you realise that a school you have chosen is not the right fit you are then able to change your mind even after you have submitted your application. 

I wish there was a kind 'school comparison app' where you would put your criteria and it would give you a list of potential schools to consider :-) 

Thank you for your reply, Ross-Mod, I will have a look at those links. 

I was kind of hoping there might be someone out there who already went through the process in my area and would be able to give me some personal insight and give me a few names of schools that they viewed and were considering. I appreciate that each child is different and thus one school might suit one child and not another, it's just I don't know where to start really and I feel quite overwhelmed as I feel we left it a bit too late... I wish we got our diagnosis earlier (I tried in Y3 but was told that there is no problem and year expectations are met...). 

Thank you, NAS63124

As you are awaiting decision on EHCP, you know the process. If you get EHCP, you can name the school and go through the stages of the process to get there. If you don't get the EHCP, you may settle, or decide to appeal and basically continue along the said process. NAS offer excellent advice on the first text of the proposed EHCP.

I am sure you are aware of the excellent schools maintained by the Surrey county council. They should be listed in their 'Local offer' on their website.

Have you visited them? 

Deciding on a school is a very anxious time for parents, you feel responsibility not to make a mistake, how can you judge what will work well and what will not. I've been there.

The best way is to make a list of as many schools as you like that feel possibly right for your daughter. Then to visit them, to research them, to talk to them. You will get more clarity and will have new evidence to re-evaluate your criteria and your list. Keep on doing this and eventually you are going to converge on the school that intuitively and explicitly seem to be the best fit for your daughter.

Getting a place in that school is another thing all together. Charities like NAS, IPSEA and SOSSEN are all able to help.

Hi NAS63124,

It might be worth having a look at the Surrey county schools section of the county website - https://www.surreycc.gov.uk/schools-and-learning/schools/admissions/child-with-a-ehcp-or-a-ssen - which goes through applying for a school place for a SEN child, and has links down the page to a directory of mainstream and special/independent schools in Surrey, information, advice and support for parents looking for a school place, and other kinds of help that sound like they might be appropriate to your situation.

You also might want to look at this page - https://www.autism.org.uk/services/education/mainstream.aspx - as the NAS operates four specialist support centres in mainstream schools in Surrey (although none is in Guildford).

Hope this is of some help,

Ross - mod