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?

Thanks @BoardLikeAMirror ! I will take a look 😊

I've read quite a lot and taken a few online tests, including this one: psychology-tools.com/test/autism-spectrum-quotient

I scored 34.

I've had CBT for social anxiety before which helped with some coping strategies, but the underlying "symptoms" never go away. I've never had many friends, I don't know how to talk to people unless I have a particular mandate (ie at work I can talk to clients because we have an agenda which we don't tend to stray from). I obsessively plan car journeys, parking, train journeys, etc. Holidays always have a timetable. I really struggle with noise and environments like shopping centres - this has been magnified since having a baby as of course, they are noisy 😁 also, I am struggling with a lack of routine since DD came along. I loved lockdown, it felt like a real mental break for me.

Do you mind me asking the cost please?

It must be a postcode lottery then as we only waited 3 months.

I was diagnosed this year through the Owl Therapy Centre who were fantastic. It was £1500, very comprehensive, and they did an ADOS which is pretty much the gold standard autism diagnostic process from what I’ve read. The report they wrote was so detailed and would recommend them to anyone considering a private assessment/diagnosis.

My diagnoses have led to more awareness in general as well as finding more ways to cope.
So I would say yes.

Thank you @StellaElevator - I will have a look!

Op my dc’s assessments (both in the last eighteen months) were £2400 and I think £2200. I have read that children’s assessments are more expensive.

fwiw my older daughter would probably have once been described as highly functioning. Her school already accommodated her so my stbexh felt the assessment didn’t benefit us tangibly - however for the relief she felt just being able to explain certain aspects of her personality it was worth it.

Thank you @stealthninjamum - would you recommend the provider/s?

@PossiblyND one daughter was diagnosed by an organisation who only assess children and they were amazing - very thorough - and because they were a paedetrician/ speech therapist team they were able to give medication.

The other organisation weren’t quite as thorough but were still good - they were. Psychologist / speech therapist team so not able to prescribe medication and not quite as experienced. They do children as well as adults. If you pm me I’m happy to give you their name (otherwise I’m worried about being outed) although I think they only do my county.

I think the process for being assessed as an adult is different to a child - friends who go through it have had to get their parents to do a form about their childhood and some parents refuse to admit anything was unusual about their child 40 years ago which can ruin an assessment. I have one friend who wanted an NHS assessment but didn’t get past an initial screening process because the parents felt she was neurotypical. I think if women masked as children it might be hard for a parent to pick anything up - especially if their view of autism was from Rain Man!

I think it’s worth going private if you afford to spend the money without it impacting your finances if there’s an emergency like needing a new boiler.

Two of my children are autistic, the oldest was diagnosed via the nhs 5ish years ago and it took 4ish years to get it. His sibling went on the nhs waiting list July ‘20 and he got his formal diagnosis in August ‘22 because we took up the offer of a virtual assessment.

camhs reached out in the August with a Development and Well-Being Assessment (DAWBA) and then they got in touch again to say that due to covid-19/lack of face to face assessments they were offering virtual assessments via Clinical Partners which I accepted as I didn’t want a 4 year wait like my oldest had.
I’ve double checked my emails and the first session was mid April 22, 2nd was end of May, final chat (adults only) August, report sent through in Sept.

I've looked up the cost for the private autism and adhd assessment with CP for myself but it’s all a bit too steep for me right now, but If I had the money I’d definitely do both with them as I was pleased with how they were with my son and the turn around time.

No, I've come across dismissive attitudes towards private assessments from others, too. For example, an NHS psychiatrist in the general adult service, who gave me The Look and said "Mmhmm, a private diagnosis, yeah?" in that not-actually-a-question way, then had to go back and correct what she'd written when I said "No, NHS". It was very obvious she'd assumed I wasn't properly autistic, and so my diagnosis must be one of those spurious private ones that they assume are just handed over if you part with enough money 😒😅

If you happen to have an NHS ASD diagnosis — particularly adult-diagnosed — and sometimes need to inform people about it, you can often see a subtle change in people's reactions, a difference between when you initially tell them you have an ASD diagnosis, and when they subsequently find out it's an NHS one. It's like it becomes more real to them. Many people in this country, including professionals, mistrust paid healthcare.

I had an assessment and formal diagnosis when I was 32.
I also wondered if there would be any point in this but I'm really glad I did.
It's allowed me to be kinder to myself and understand myself better. I also make more adjustments for what I need now so I'm not constantly pushing myself to be someone I'm not.

I would highly recommend:

www.spectrumspecialistconsultancy.com/about

I had mine with Dr Fiona Gullon-Scott.
She's based in Newcastle but I believe she is now also seeing people online.
The assessment was very thorough and I was given a report afterwards which was around 30 pages long.

The cost at the time was £700. This was a few years ago. I believe now she charges around £800.
She's incredibly experienced and I really do recommend her highly.

Having said all that, I do think it can be worth it to pay for a private assessment, if you can't get an NHS one or it would take too long. As long as it's with someone who's qualified to assess, most people will not view it as lesser than an NHS diagnosis, it should still be accepted as valid evidence in circumstances where evidence of ASD is useful, and should still provide all the self-understanding benefits that many people find helpful.

If you can afford it, and want to do it, go for it. Understanding yourself is incredibly useful. Have you read the book Neurotribes?

@stealthninjamum yes I'd read about parents etc being involved. I'm not keen on this. DM gets most uppity about everyone "being labelled" and how "we never had all this autism in my day" - like it's been invented to specifically annoy her...

Will pm you about the details on the off chance I can use them.

No I haven't @Robotindisguise but I will look it up, thank you.

This is what worries me @FurryDandelionSeekingMissile - I don't want to be seen as having purchased a diagnosis! Maybe I will speak to my GP and see what they say about NHS waiting times. Or I could look at Clinical Partners if they're used for NHS assessments anyway?

Thank you @CocktailsLimited - I'll check her out.

I think being realistic you're always going to occasionally get people who think like that, and I wouldn't want you to go into it thinking that that preconception doesn't exist.

But firstly, I think most do accept the validity of reputable private diagnoses, and secondly, in the case of things like access to accommodations, if it's been done by people with the right qualifications (and especially, as you say, people who also do NHS assessments), individual people's feelings about it won't count for anything anyway. The people who know and care about you count for most, and if the diagnosis helps you then they should presumably be happy for you.

@FurryDandelionSeekingMissile well I've had a look at clinical partners and they charge £2250. And it should appear that I'd already taken their online test which pointed towards ASD. I think I'll give them a call.

You might get lucky. My dad was all "You can't be autistic, you're my lovely daughter and there's nothing wrong with you" until I was diagnosed. Shortly after the diagnosis he started coming out with words like "neurodiverse", so I knew he'd been reading cause I certainly hadn't used that around him, and he also started taking it as read that my mum's autistic too (yeah, I'd put money on that myself…)

Parent input isn't essential… my mum described me as largely unsurprising in my development, but of course questions about things like the appropriateness of my facial expressions as a child completely baffled her because she can't really read faces (though I can), reading fluently and untaught at 3 was normal in her book because she'd done that too, and it was fine that I hated playgroups because she didn't like them either so we could agree not to go 🤣

Can't hurt to investigate it, if it genuinely wouldn't cause you potential hardship? I'd still shop around though, it's a lot of money… I'm no use to you on finding a good assessor as I was lucky enough not to have to pay, but the others seem to have made some good suggestions. Best of luck 🤞👍

In my experience the suspicion of private diagnoses for some conditions, not only autism, comes from a concern that there are some unscrupulous private providers who will essentially sell you a diagnosis. The services recommended here sound reputable and you are doing the right thing by securing recommendations, OP.

Yeah I guess that's probably it Pockets — though I don't know how much of it is a genuine problem that exists and how much is a fear that it might.