Should I still want an NHS ASD assessment after private diagnosis?

[DeathBanana]

DD has been on the nhs waiting list for ASD assessment for coming up to five years. 3 years ago we (well the grandparents) paid for a private assessment. In news that surprised no one she was indeed diagnosed with ASD.

we’re currently wading through treacle with CAMHS. While she becomes more and more withdrawn and distressed. The school are unsupportive. She’s just started sertraline and is on a year long waiting list for therapy. That part is unrelated to my question

so it seems she’s finally reached the top of the nhs waiting list. I hadn’t removed her upon receiving her private diagnosis, largely because there is so much scepticism around private diagnoses. My gut feeling was that a nhs diagnosis was somehow more reliable / accepted / important

anyway, they’ve phoned and said that they understand she’s been privately diagnosed and therefore will not assess her

I get it, there are thousands of kids awaiting assessments who don’t have generous grandparents able to fund a private assessment. But am I right to still want a nhs diagnosis for her? I’m torn and don’t know whether to ask that she is assessed or just accept it. Happy to be guided either way it’s so hard to know what to do for the best

You don’t need another assessment. If the service is just for assessment, you don’t need another, so I can see why they won’t assess again.

Places like schools and LAs can’t refuse to accept a private diagnosis just because it is private. NHS diagnoses aren’t more accepted.

An NHS diagnosis won’t automatically mean DD gets more support.

Does DD have an EHCP?

no i didn't expect it to result in more support - after all this time i am hugely realistic about the level of support available.

it's more that years down the line her private diagnosis may be not be considered in the same light as an NHS one.

she does not have an EHCP, i don't really know anything about EHCPs but having googled it refers to submitting school reports, SEN review notes, medical or doctor assessments and so on, we have none of these, other than a few letters from CAMHS which are just the details of appointments. she is in year 11 so we're just getting through the last bit really

perhaps if she's been through the nhs pathway someone might have mentioned an EHCP at some point. as it is she does well at school (academically), she is clever, complaint, conscientious. the school is not adequately resourced to help kids like her. they don't know her, they just see she is not causing trouble so therefore she's ok. Then she comes home, stays in her room on her own and hurts herself. that's her life. a NHS diagnosis won't fix that, that is not what i am asking. more just in the total absence of any level of interest from any where for year after year, is the lack of an NHS diagnosis something that has the potential to further hinder her over the course of her life.

The private assessment isn’t seen as lesser than the NHS one. There are some people who would like that to be the case, but it isn’t actually the case.

The vast majority of support is based on needs rather than diagnosis. An NHS diagnosis won’t change that.

EHCPs are based on needs, not diagnosis. Many who go through the NHS do not have an EHCP suggested to them. Equally, some who go private, do.

Y11 isn’t too late for an EHCP. EHCPs can continue until 25 if necessary, or 26 in some cases.

The benefit of an EHCP is it can include MH support not otherwise available on the NHS &/or more than what is available on the NHS without the need to sit on the normal waiting lists.

You don’t need all the evidence you listed in order to request an EHCNA (the EHCNA is the needs assessment you first request as part of the process to get an EHCP). The legal test for an EHCNA is relatively low - a) has or may have SEN, and b) may need special educational provision to be made via an EHCP. You can do that without all the evidence you list. You can use the ASD diagnosis letter, any CAMHS clinic letters following appointments, or referral letters. If you have emails, you have sent to school/received, you can send those. Any notes from GP appointments.

Although DD should be on the SEN register at school and there should be paperwork from that. You could make a SAR to the school to gather further evidence.

If you haven’t already, you should speak to the school about exam access arrangements.

Thanks roaringdragon you’ve been very generous with your response and i appreciate it. I think you probably sense that a desperate person wants to grasp anything / something but I totally get what you’re saying and do not disagree.

dd is on the SEN register and did have extra time and rest breaks for exams. She didn’t utilise these, so they’ve said they’ll be removed. The idea of getting up and leaving a room, let alone an exam room isn’t something she’d entertain.

I’ll think on on the EHCNA/ECHP

Would DD use rest breaks if she didn’t have to get up and leave the room?

Would DD use a laptop?