Private autism assessment

[PossiblyND]

Inspired by another thread which has reignited a little voice in my head which thinks I may be autistic.

A diagnosis wouldn't necessarily make a huge difference to my life, but I would like to know one way or the other, especially as I now have a DD.

Two of my cousins have children with ASD and several other ND individuals in the wider family.

I suspect I may also be dyspraxic.

To my questions:

1. AIBU to think it would be worthwhile getting a diagnosis so I know one way or another?
2. WIBU to spend a decent chunk of money doing so when I'm currently only on SMP(although I do have a decent amount of savings)?
3. AIBU to ask for recommendations for private assessment providers, preferably in the London or Surrey areas?

God knows what happened to the formatting there - damn app!

I don’t think YABU

Following with interest as I have wondered about the same OP

I am almost certain that I am, and have wondered the same, but when I looked into it, it's thousands - probably worth a punt on the NHS first and see how you get in with them.

For some having the diagnosis could be life changing, especially with a previous misdiagnosis, and worth jr

I wouldn't pay £500+ for a private assessment just because you are interested to know unless its not a lot of money for you. Lots of people wait 2-3 years on NHS waiting lists but I was assessed and got the results in less than a year so its not always a really long wait.

If you get any London recommendations, can you let me know too please? I’m on the waiting list (NHS) for DD, but want to get earlier assessment privately too if possible (for us, school needs NHS), and for me as well as pretty sure now that I’m where it comes from 😞

@Jenn3112 it is a lot of money, but I could afford it due to savings.

I don't think a diagnosis would necessarily impact my home life, but I would like to know for DD and because of my job, I am aware of the importance of disclosing any disabilities - and I do feel I have certain traits which could be viewed negatively but are more "understandable" if I had a diagnosis ifyswim. I'm probably phrasing that completely wrong.

@MotherOfPuffling yep! Have they said how long the wait is for your DD?

@schnausages I've seen some online for less than £1,000 but I don't know if they're legit or not 🤷‍♀️

Thanks @PossiblyND! it was the GP that suggested we go private, as she said that the CAHMS service in London is totally overwhelmed. Other families she’s been dealing with have apparently had to wait more than 3 years just to start the process, which can then take a couple of years (the process of assessing children that is, it is much faster with adults I think, don’t have to go and observe them in the classroom etc after all!) she back said, go private or accept it will be a very long wait.

@MotherOfPuffling that's insane! Although does tally with my cousin's experience, I think they waited 4/5 years for their DS to be diagnosed. They simply didn't have the money for a private assessment.

I have always just accepted I was a bit ‘odd’, but now am thinking to get assessed sort of alongside DD, to see if helps me to understand and support her any better. Friends have been on the child ASD pathway for longer. One took four years, one five years, in both cases their DC only got the final assessment this year, and post Covid apparently there are more delays. Which is scary.

Exactly @PossiblyND! 4-5 years is just nuts, and those of us starting our DC on the pathway now can expect it to take longer! The LEA we are in will only accept an NHS assessment though. Cynically I wonder if it’s because the extra money they will get is less than the cost of the additional support they may be required to provide… Luckily DD’d school is v good on this, and she spends time every day doing sensory circuits etc. even though we’re still trying to build the evidence for an EHCP etc. The TA who runs them is great, but the school may not be able to afford to keep any of its TAs much longer, which is v worrying.

@MotherOfPuffling I don't think you're being cynical, I think you're being realistic!

DH was assessed on the NHS and diagnosed a few years ago. Quite a lot of people don't seem to take private diagnosis seriously. Many times we've been asked if his assessment was private, and people have gone 'oh OK then' when it's NHS. I would therefore go on an NHS waiting list if you can, it seems to hold more clout in our experience.

@jevoudrais that's interesting, thank you.

Private assessments by a qualified professional hold the exact same weight as NHS. It's only Local Authorities who try to question them when trying to wriggle out of issuing an EHCP or having to offer additional support that will cost them ££.

I received a private autsim diagnosis in the summer. The psychologist sent the report to my GP, who accepted it without question and it's now on my medical records.

@Punxsutawney can I ask how much it cost and who you used please?

My son is diagnosed ASD, there is no real benefit medically speaking as there is no real support out there. Each symptom is treated on its own merit and that would be done regardless of an ASD diagnosis. For example speech therapy, or counselling etc you don't need a diagnosis to access those. However, I know that my DS benefitted greatly from his diagnosis. Because he knew he was different from other people, and this really helped him embrace his quirks, helped his confidence.

@TiptoeThroughTheToadstools that's partly how I think it would help me.

Hi @PossiblyND There are several threads about private adult assessment and issues surrounding diagnosis generally on the Neurodiverse Mumsnetters' board - you might like to have a browse and join us

www.mumsnet.com/talk/neurodiverse_mumsnetters

Op my dc had private assessments as the waiting list was too long. As long as the assessor follows NICE guidelines it will be to the same standard as an NHS one. As far as I know LEAs who don’t accept private assessments are breaking the law and trying to get out of supporting a child.

I don’t know how much you’ve read about autism and the diagnostic criteria, so apologies if this sounds rude. I would firstly ask you how much you’ve read about autism and the diagnostic criteria. There seems a lot of misunderstanding about autism. Autism is “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests”, present since early childhood, to the extent that these “limit and impair everyday functioning”. A lot of people seem to miss out that last bit! Maybe discuss it with friends & family if possible.

Then try your GP and see what they say. You never know.

If you want to have a private assessment, then look for a provider that assesses according to NICE guidelines. I’ve seen some pretty dodgy ‘providers’ that’ll charge you £800 for a 30-minute video chat and will then ‘diagnose’ you. If it were me, I’d forever be questioning the validity of such a diagnosis, so it wouldn’t really solve anything!

My DS did have a private assessment last year, after we couldn’t wait for NHS any longer (it had been 18 months from initial referral and counting). We’ve not had a problem with school or anybody accepting his diagnosis.

The other thing to consider is that if you do have difficulties with things, perhaps look at therapies or other things that help autistic people and just try them. You definitely don’t need a diagnosis for self-help! If something helps, then great. If it doesn’t, then you’ve lost nothing.

I'm pretty sure I'm autistic but I'm not willing to fork out to be told it. If it was free or cheap I would as it would be nice to know for definite - but I don't think it would make a massive difference to me. I am fairly sure I'm okln the spectrum, and it explains a lot. That's enough for me! I also suspect my son may be autistic- but again, I'm not rushing for a diagnosis.

LAs refusing to accept a private assessment/diagnosis just because it is private are acting unlawfully, and SENDIST certainly accept them. Having said that, support in schools is based on needs rather than diagnosis, so a diagnosis isn’t essential. It sounds like you should just apply for an EHCNA now, the initial threshold is relatively low and a EHCNA itself will provide evidence for an EHCP.