Private autism assessment and cost

[glissilg]

Hello,

I am very new to this. Our nursery has flagged that our 3.5 years is displaying the profile of a person with autism (speech delay, not very physical, and style of play).

We are looking at private assessment as nursery flagged the NHS wait times are very long.

The costs for this seems to be between £400-2100.

Are all autism assessments of the same standard or is there a directory of credible companies who offer this?

Some websites seem to mention school and home observations, while others don't make it clear.

Also, should we be pursuing an NHS diagnosis too? In case our private diagnosis isn't accepted by the NHS etc.

Sorry if these questions seem silly, I'm still in the process of researching and understanding this.

Thanks in advance for any help.

Actually a more succinct way to put it...

What should I be looking for when booking a private assessment?

Thanks!

Disclaimer: I am no expert.

We are having our ds2 assessed privately by the Essex Autism Service. Cost is nearly 2k. They use the same methodology the NHS use which means that any diagnosis will be recognised by school etc which is obviously important to us, esp as ds2 is 14 so it's not a case of waiting and seeing anymore. Their assessment process seems pretty thorough which is also important to us because it's not clear cut that he does actually have autism (he definitely has social anxiety plus some other other autistic traits but maybe not the whole triad).

I looked at a few providers but everything that looked similar was a similar price. I didnt see anything that looked like providing a full diagnosis for £400 but maybe that is due to his age?

A private diagnosis is more likely to considered robust if it is undertaken by either someone who also does NHS work or by a MDT.

Having said that, what are you hoping to gain by a quicker diagnosis? Support is based on needs, not diagnosis, therefore waiting for an NHS assessment does not mean DC will be left with no support - with a few exceptions such as specialist ASD schools.

Thanks for your replies.

@Porcupineintherough I just saw the £400 on one particular website but it didn't detail what that entailed.

I contacted about 6 organisations today, and one came back and explained the process, which would be with a MDT, the cost was £2100 so sounds similar, which is reassuring.

@Imitatingdory I think we'd like a diagnosis sooner rather than later so that we know where we are with it all if you see what I mean, I feel a bit lost at the moment. And from everything I've read so far an early diagnosis (though not too early) is preferable to a later one.

Early diagnosis is best, but more from the pov that early diagnosis can mean early intervention. Whereas late diagnosis more often goes hand in hand with needs not being recognised until later on and masking. However, DS can receive that early support based on a suspected ASD diagnosis. I mention it because some parents go private because they think a diagnosis will open doors to more support, and it mostly doesn’t as support is needs based, not diagnosis.

Have you looked to see whether you can self refer to SALT and OT locally? You can in some areas. Also Portage.

Another vote for clinicians who also work in the NHS. Ideally there will be two professionals involved e.g. a psychiatrist or paediatrician and speech therapist or psychologist etc. You should be looking for someone who will follow the NICE guidelines and not just do an ADOS.

@Imitatingdory

Early diagnosis is best, but more from the pov that early diagnosis can mean early intervention. Whereas late diagnosis more often goes hand in hand with needs not being recognised until later on and masking. However, DS can receive that early support based on a suspected ASD diagnosis. I mention it because some parents go private because they think a diagnosis will open doors to more support, and it mostly doesn’t as support is needs based, not diagnosis.

Have you looked to see whether you can self refer to SALT and OT locally? You can in some areas. Also Portage.

Thanks so much for this info.

I feel like a diagnosis would help us understand our son better not necessarily guarantee us access to services, as you say it's needs based.

He is on a SALT waiting list at the moment as his speech delay was picked up earlier last year, we are hoping to hear in March/April this year re: appointments.

I haven't looked into portage, but I will now thanks. Is OT occupational therapy? - I hadn't even considered this, I will look into this too.

Is portage and OT oversubscribed too? Just from my experience from the SALT process - everything took very long, from getting an appointment, to referral etc.

@SleepWhenAmDead

Another vote for clinicians who also work in the NHS. Ideally there will be two professionals involved e.g. a psychiatrist or paediatrician and speech therapist or psychologist etc. You should be looking for someone who will follow the NICE guidelines and not just do an ADOS.

Thanks for this. The company that came back to me today said this... does this all sound like standard/best practice?

The screening call is conducted over telephone call and usually lasts around 30 minutes. This is just to gain some knowledge about your sons background, day to day behaviour, and allows us to do a risk assessment as well. The contents of this call will then be passed onto our Medical Director, for approval to proceed with the assessment (there is usually no reason as to why we can’t proceed).

There are two parts to the assessment, please see below:
• ADOS Observation – Face to face with your son at either your home address or a nearby clinic. This involves table top tasks and general interaction with a clinician and lasts around an hour.
• ADI-R ‘Parent’ Interview – This is a remote interview conducted with you over video link that will involve questions from your sons birth up until present. This will last around 2-3 hours and your son does not need to be present for this.

When both parts of the assessment are complete there will be an MDT meeting to decide the outcome, following which a draft version of the report will be prepared and sent you with the decision included.. The assessment process takes in the region of 6-8 weeks.

There will absolutely be a report produced that you can then use to gain access to support services. We do advise to keep your GP in the loop and tell them you are seeking a private diagnosis, but we certainly have never had any issues in the past with reports being accepted by the NHS.

Yes, OT is occupational therapy, often with similar waits to SALT. Not all CCGs commission sensory OT, but it sounds like a referral to OT would still be helpful even without the sensory aspect.

If you are thinking of applying for an EHCNA both SALT and OT assessments can be part of the needs assessment and provision it excess of what would otherwise typically be available included in the EHCP without the need to sit on waiting lists.

Portage depends on your area, some have a little list, others have a waiting list so long DS will be too old before being accepted (the upper age limit various area to area).

When my son was 2.5 I was considering similar, and looking at the costs of a private assessment. In the end I decided to use that money for private support (play therapy that uses some SALT techniques, some ABA, to encourage his speech and expand his play).

It felt like, with the limited funds I have, I was at least cutting to the chase and getting to the good bit, which is early support with his language and play skills. It means I could be in the dark for years as to whether or not he meets the criteria for a diagnosis via the NHS community paediatrician, but he's enjoying his play therapy and making good progress in language acquisition, so so far I feel happy with the decision I made.

Just some food for thought!

Thanks @Scratchybaby I have actually just been doing this today - I've been emailing everyone within a 40 mile radius using the ASLTIP website. A few have come back to me so far but to say their caseload is already full. Hoping someone can might have space, or at least a waiting list.

We are 4 months into our wait on the NHS for a SALT, I chased them today and they said the wait is a minimum of 6 months - so could be more.

@Scratchybaby

When my son was 2.5 I was considering similar, and looking at the costs of a private assessment. In the end I decided to use that money for private support (play therapy that uses some SALT techniques, some ABA, to encourage his speech and expand his play).

It felt like, with the limited funds I have, I was at least cutting to the chase and getting to the good bit, which is early support with his language and play skills. It means I could be in the dark for years as to whether or not he meets the criteria for a diagnosis via the NHS community paediatrician, but he's enjoying his play therapy and making good progress in language acquisition, so so far I feel happy with the decision I made.

Just some food for thought!

Did you ever pursue a diagnosis too?

@glissilg We're still on the NHS waiting list so hope to be seen someday. I still understand the value in being assessed, I just made the decision of where I considered my money best spent. Everyone I encounter seems to say that, upon getting a diagnosis, they get a few leaflets and are sent on their way and out to fend for themselves.

My DS is just approaching 3, so if he DOES eventually get a diagnosis then we are at the very very beginning of this journey! It could be that in 5 or 10 years time I'll look back on a lot of mistakes I made along the way, so take my opinions for what they are - just opinion! The only thing I will say is that, in spending that money on private support, his speech has finally started to come on and I feel immeasurably better - and more sane - feeling like I'm finally doing something that's helpful to him.

All that said, because I haven't sped up the assessment process by going private I don't know if there's statutory support I'm missing out on. I'm guessing no, or that at best it would be more waiting lists, but others could provide more informed opinions on that.

OP, Scratchybaby’s post explains better what I was trying to say about parents seeking a diagnosis because they think it will lead to additional support. If funds are limited, and let’s be honest at the price of support you would have to be extremely lucky to be able to fund private assessments and therapies indefinitely, imo it is better to divert money elsewhere. Personally, I would start with independent reports with the aim of trying to get provision specified and quantified in an EHCP.

Scratchybaby does DS have an EHCP? If so, the therapies/provision can be included in there, then you don’t have to pay. Why don’t you spend the money on excellent assessment reports with the aim of getting the provision in there, even if you need to appeal. If DS doesn’t have an EHCP you can apply for one yourself. The only support you would be missing out on by not having a diagnosis are things like ASD courses, ASD specialist schools, depending on area ASD specialist teaching service etc.

@Imitatingdory it's actually a long and boring story, but everything has gone through nursery and there have been a lot of cock ups. I need a sit down meeting with them to pick apart what they've actually done (or not done). The only thing I know for sure is they made an Early Help referral, which has led to a referral to a paediatrician as well as a few observations and meetings - but no actual help beyond some badly photocopied, single-page worksheets with very low ambitions for my DS.

But with waiting lists as they were for an appointment with a paediatrician (6-12 months) and SALT (more), I actually ended up finding an ABA consultant to set up a programme because I'd heard good things about the approach helping speech delays in all sorts of situations, not just ASD. This resulted in some detailed reports on where his skills were and where we could focus extra support, and then of course some actual support followed! I'd love some free support but so far I'm not holding out a lot of hope, given the sum total of what we've had so far.

Scratchybaby I would make an EHCNA request yourself, you would be aware if the nursery had applied. IPSEA have a model letter that can help. EHCNAs are governed by statutory timescales, so you don’t have the same waits. EHCPs are statutory documents, the support in them must be provided, if it’s not you can enforce it. If the LA/NHS can’t provide it and private provision must be sought.

Also ask the nursery to get in contact with the Area SENCO.

Does anyone know...

Should the ADOS Observation be at home or in the nursery setting?

Some places offer home, others nursery or a clinic, I feel like the setting would have an impact on what they observe.

Hi
We've just had our 8 year old diagnosed with ASD and comorbid ADHD. It was done in our own home via Teams as our son struggles with change. School / nursery will be sent forms to fill in as will you, then you will have an assessment with your child at home where he will finish the assessment process.
I honestly could not recommend Mark enough, he cares so much about the children he works with and he understood and connected with our son immediately (and me!)
He works for the NHS as his full time role and his assessments follow all relevant NICE guidelines (which is what you should be looking for when researching companies)
We've had no issues with school and the NHS accepting the diagnosis and the price was incredibly reasonable compared to some companies.
We were seen within a week and had the diagnosis the next day. Have a look at his website and the Google reviews -
Developing young active minds
www.developingminds.co/

Wishing you so much luck on this journey whatever you decide to do xx