To ask for people's experience of SEN provision

DS is in a specialist ASD base within a mainstream secondary school and can attend the mainstream lessons if he wants to/is able to - he is also able to leave and go back to the base if other children are being too loud/disruptive.

We've found that having some control over this is beneficial to him, and he's done well so far in attending many of the mainstream lessons.

We were fortunate in that we had a fantastic ALNCo (we're in Wales) in primary school who fought to get DS assessed for ASD quickly (we waited a year rather than the initial estimate of 26 months), and the Engagement Team were also excellent.

Outside of that though it was hellish. I spent hours phoning round different organisations just to be signposted to other organisations that signposted me. Actual practical help was pretty much non-existent - what we begged for over and over again was help with what to do when DS has a meltdown as they are violent, and we have had nothing, no help at all outside some information on NVR most of which we found we were already doing and none of which is much use if it gets to the point where you're being bitten and punched in the face because of something outside of your control.

CAMHS have been useless (I don't completely blame them I know the pressures they're under due to my job) - wouldn't do anything about a child with extreme anxiety who was constantly talking about wanting to die or killing themselves. Just getting the assessment was a fight, with the ridiculous requirement that we had to check out services DS wasn't even eligible for due to his age. Then when they turned down the initial request for an assessment they sent the wrong fucking letter and instead told us he wasn't accepted for ASD assessment (he was on the waiting list at this point), which was an awful moment - I have never seen DH so despairing and angry as when he saw that letter.

DH and I were both referred to the Primary Care Mental Health Service, where we were told in the face of daily violence from our child to try mindfulness. DH never contacted them again. I did and got six sessions of counselling, and the lovely lady I was talking to was so concerned about me during the sixth session that she got permission to provide an extra two sessions. Apart from that I was offered group CBT I couldn't get to, or if it was online it was during DS bedtime routine.

We've had a number of services involved with DS, all of them were lovely people, but ultimately got us nowhere, except to give us more to do and a lot of appointments to work around. Then everyone dropped us at the same time on the grounds of all the other people/services we had involved, so now we have nobody except the school. I should try to contact a couple of them - OT for example - but I feel permanently exhausted. I'm also going to be made redundant this year and will be involved with the wind up of the organisation I work for, and I'm worried about how DS will take that - and that's our life, everything is about considering how DS will manage with anything that happens. Even just a family meal out is all about how well DS is likely to cope in any particular venue.

This is similar to our experience, DS got an EHCP in reception but the ASD diagnosis didn't come through till a year later. As he didn't mask at all, we had reams of evidence of ND and sensory-seeking behaviors to submit for the EHCP.

Special educational provision isn’t based on diagnosis, it is based on needs.

Yes - very hard and isolated for many. It's not just the children being excluded from mainstream.

I haven't read the entire thread. For me (parent of sen kids and previous job in working with parents of sen kids) please please do not underestimate your role. In the same way that taking a child to swimming in between lessons will help them learn to swim quicker, you also can support learning. But God, it's a bloody tough and lonely road.

@soupyspoon. When children are placed in specialist provision because of difficulties it's not unheard of that they can be re - integrated into mainstream after intensive support. I've seen this happen - but years ago. System now not serving parents/ children. Too many vested interests - hanging onto some children for funding.

Social services very fragmented and underfunded to support above.

@robotindisguise No hard disagree here that autism needs its own school.

Autism, particularly groups formerly known as Asperger's maybe not best served in specialist provision.

From personal experience I've seen poor provision, bullying, poor academic achievement and devastating low levels of self esteem.

I get that parents want to protect their children especially when younger, but spending many of their formative years excluded from mainstream peer cohort is limiting their future ability to navigate mainstream society.

It definitely does, and if it did the mental health of all kids would be better, but I think autistic kids with a usual academic profile would always be better in their own school. I would like to see one per county

Mainstream schooling needs to adapt for ALL children. Teacher training (teacher perception) needs to adapt to the changing cohort of children that don't fit the "average" profile.

Money currently being given to private specialist provision, should be directed into mainstream with better oversight of effectiveness.

SEN children are being poorly provided for in all types of schooling limiting their onward life chances.

I think a lot of people dont understand that many specialist provisions will seek to end the placement when it becomes apparent they cant meet need (ie the child is too disruptive, non attending, violent to others other risk factors)

Then theres no other specialist provision for them so they're out of school.

My son was 'lucky' he got his EHCP on need and not diagnosis so got the ehcp in year 1 and not diagnosed ASD and ADHD until year 4.
My son didn't do masking and when his needs weren't met the whole class knew, as that meant he was disruptive he got his EHCP, it was an awful time pre EHCP of me trying to get them to understand it wasn't bad behaviour for no reason , he wasn't making 'bad choices' but looking back I'm glad he didn't mask as he wouldn't have got the support.

Local authorities didn't take private diagnoses because:

• when there's money involved there's an incentive for overdiagnosis of borderline cases
• private providers don't prioritise cases the way NHS services do. If you can pay you can get assessed. This means you get an uncapped number of people seeking diagnosis based solely on ability to pay and not severity of need.

The NHS tends to have no choice but to focus its limited resource on those who have (or appear to have) the greatest levels of impairment.

The state cannot afford to provide the level of individual, tailored educational experience to vast numbers of pupils the way a lot of parents currently expect. I'll get immediately flamed on here for saying it but someone with kanner/level 3 autism who is incontinent, non verbal, totally unable to interact socially, needs a greater level of resource than someone with what would be termed "level 1 autism" (eg DSM 5).

Trying to keep it short.
My son (Asd and adhd) head teacher in year 1 told me to put my son's name on waiting lists for SEN schools (after already giving him fixed term exclusions age 5) as he knew there would be a wait. But a head of 20 years in a 3 form entry school seemingly had no clue of the process and that I couldn't just put my sons name on a waiting list and had to navigate the system myself to learn what an ehcp was and start the application process.

Son ended up with a 1 to 1 and staying in the same school as his needs weren't significant enough for the special school, it was a struggle and full of conflict with a school who's head didn't want my son there and had no clue or want to understand SEN. Some years the teacher got him and it was ok other years not so much.

My children are at a state primary and a huge number of children receive support with SEN - especially for neurodiversity and behavioural/emotional/sensory related needs (rather than for learning difficulties). It's far more than when i was at school or when my parent was a teacher (retired 10 years ago). On here our county has been mentioned as not good for EHCPs etc but a friend has just got one within the 20 weeks for her DC with autism. Our school gets the same grumbles all the local schools do that they don't do enough for SEN but they seem to do loads.

Sorry, but this may be how local authorities justified it to themselves, but it isn’t why they didn’t take private diagnoses. The didn’t take them to keep demand down - it was a 1-2 with NHS trusts refusing to refer you in the first place. That way, your SEN child had no diagnosis and had no costly support in school. And without a diagnosis they were invisible to the local authorities so no other help either.

@Jadebanditchillipepper both my sons were above average academically so not failing there. I totally understand it's a fight. Just think though that if you manage to get anything acknowledged and on paper this can help her until her twenties. Post school and into college/ university.

@BrightYellowTrain Thank you. I agree, but I'm not very good at putting it all I to words. I am really grateful for everything you have said and I will get back onto the school

@Jadebanditchillipepper the definition of ALN is set out in the Additional Learning Needs and Education Tribunal (Wales) Act 2018.

“(1) A person has additional learning needs if he or she has a learning difficulty or disability (whether the learning difficulty or disability arises from a medical condition or otherwise) which calls for additional learning provision.
(2) A child of compulsory school age or person over that age has a learning difficulty or disability if he or she—
(a) has a significantly greater difficulty in learning than the majority of others of the same age, or
(b) has a disability for the purposes of the Equality Act 2010 (c. 15) which prevents or hinders him or her from making use of facilities for education or training of a kind generally provided for others of the same age in mainstream maintained schools or mainstream institutions in the further education sector.”

There is more to consider than academic ability. Being academically able does not prevent a child also having ALN.

I guess it's how you define additional learning needs really isn't it and I think this is the problem with the school. Dd doesn't have learning needs if you accept that she is bright and doesn't have any problems with understanding/reading/writing etc. BUT, she does have problems that stop her from accessing that learning by giving her school anxiety and leading to school avoidance.

To my mind, because she has problems accessing the learning, she does have ALNs, but the school's perspective is that she doesn't because she is bright and doesn't need any help to learn. The fact that she can't access that learning, as far as they're concerned is my fault because I'm "pandering" to her anxiety

@Jadebanditchillipepper it is worth looking at this page because either way you should have had something formal from school.

@BrightYellowTrain Thank you, I will look that up. No, I haven't had any communication to say that they don't believe she has ALN. They accept that she has ASD, but they don't believe she has ADHD and have declined to refer her

@Jadebanditchillipepper if you ask the LA for a reconsideration, on their website, SNAP Cymru has a model letter you can use. If the school decides DD has ALN, they must prepare an IDP. You should know if the have judged DD not to have ALN because they should have written to you notifying you.

@BrightYellowTrain No, I haven't done that yet, but I have been meaning to if they didn't respond to the latest request. They have put reasonable adjustments in place so I'm assuming they accept that she does have ALN. I'll ask them one more time, making it clear that I'll contact the local authority if they still don't comply.

@Jadebanditchillipepper if the school has decided not to prepare an IDP, they must have decided DD doesn’t have ALN. If that is the case, have you requested the LA reconsiders the decision? Then appeal to the Tribunal if necessary?

@stomachamelon @RhaenysRocks @BrightYellowTrain

Thanks. Unfortunately, we're in Wales where EHCPs don't exist and the school are very reluctant to give her an IDP (individual development plan) which is what we have here - probably because it's too much work. I've even had an outside agency (SNAP Cymru) write to them and they still won't budge. They say she doesn't need it because she doesn't struggle academically. The fact that she's unable to attend school full time doesn't appear to matter because that's my fault according to school. I will keep trying though