Sick of waiting for NHS Autism assessment

[Catterpillarwithconverse]

I spoke to my GP over a year ago about my suspicion of being autistic, nothing has happened yet and I don't even think I am on the waiting list. I thing he has just been faffing about with (not) making the referral. I'm now considering going private.

What do you think of this...

www.rtnmentalhealthsolutions.com/combined-diagnostic-assessment

Is that a full diagnosis?

I had a ADHD screening along with my full dyslexia diagnoses which said I had elements of ADHD but could say for sure. So I'm considering getting the combined test with the company above.

Does it seem legit? What sort of questions do I need to ask to make sure its a proper assessment?

Thank you.

You won’t get a proper assessment online. You need to see a specialist in person. See a different GP and insist on being referred. Be prepared for the waiting list to be 2-4 years though.

Hi, you need to ensure first of all that you have nhs referral through. Then you need to ask the department you’re referred to what process they follow and which providers they outsource to.

Ideally what you want is to have an assessment with a provider the nhs already uses with the same criteria covered. This will enable you to have your report ratified in the event of an affirmative diagnosis, then you will be able to access nhs services and have no hassle at a later date over diagnosis.

It costs in the region of about £1000 on average now to go private. I did rather than wait 4 years. I wanted it over with. Do your research.

Thank you both for your replies. I'm so frustrated about the whole thing.

@velda I'm not prepared to wait 2 to 4 years though, especially since I've already waited over a year. That's why I'm looking into going private. I detest speaking to my GP about it as it one GP in the whole practise and I just feel so self conscious talking to him. I'd rather a big practise where I'm just a number so if I stumble over my words I don't care as they wont remember who I am anyway.

@SensationalSusie I'm not sure I believe that a thorough assessment can't be done online...why not?

I guess what I'm questioning is weather the company above does a full assessment rather than a screening. And also if I do have ADHD will my GP accept it and then be able to prescribe.

The company you’ve mentioned is not appropriate. You need to be seen face to face to undergo an assessment process that follows specific diagnostic criteria. It takes about 6-8 hours over a few sessions, seeing a few people, you’ll have checkbox tests to complete as well and someone who knows you well may need to be interviewed.

www.nhs.uk/conditions/autism/getting-diagnosed/how-to-get-diagnosed/

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria

By all means go private, but ensure that you have the NHS referral set up first. Check that they will accept a private report and ratify it, and if there are private
providers they would prefer you to go to/what assessments they require.

Stop fixating on the GP the only one who is suffering out of that scenario is you.

What I would suggest to help you with both the GP and assessment process if you struggle to talk is to write things down in detail and bring it with you. Get someone to help you do this if necessary and take your time with it.

Do a bit of reading up about autism, the symptoms and likely behaviours on websites like this www.cdc.gov/ncbddd/autism/signs.html

Then compile a document

1. Background: I have struggled with X,Y,Z for X long. This has caused me X problems (things like difficulties with relationships, school, work, daily living etc). I am pursuing diagnosis for autism because I believe my symptoms fit with the profile and I would like to attain X outcome.
2. Social and communication difficulties: from the websites/books you research, write down all the symptoms you match with and anything else you think is noteworthy. When you have your list for each factor give examples of your experiences and behaviour.
3. Restricted or repetitive behaviour or interests and sensory issues: again make your list, and give examples.

I would advise you to be as in-depth as possible as NHS is not accepting vague referrals at present. I had to fight hard for myself and my child to be accepted onto list and gave a lot of information.

@SensationalSusie

None of this would make a difference at my GP, they don't refer adults.

Re. ADHD assessment, this is a separate NHS wait list, about 6 years. You need to be referred for that too if you think you have it also. Again look at info, write out your background and symptom profile to make things clear going forward.

The cost privately is about the same as for autism, however if you already have had the autism assessment with a specific provider and they also do ADHD you can find the cost is reduced for the second assessment as background crosses over.

Perhaps someone else could advise on process for adult assessment/treatment of ADHD via NHS? I only have experience with children for this.

Well this is nonsense, there will be an adult autism service available in your area. Look it up what the closest is to you.

Move GP or submit complaint if necessary.

Unfortunately most of the legwork to get action needs to be carried out by yourself with the current number of people referred you need to be pushy to get forward.

@Covidia

It's not nonsense. But I shall bow out now, I'm not here to fight over my health boards policy.

Susie is right. It is not sufficient to do a self assessment online. When you see an assessor in person they look at lots of things like eye contact, speech patterns, how you complete a task using props, what you do when you’re left alone in the room and you think they aren’t watching, etc. And they interview your parent or spouse too.

Is there a NHS mental health clinic you could attend which would refer you for diagnosis? Otherwise you’ll just have to see your GP and be firm about needing referral. Take a family member with you to fight your corner!

@Velda

It is not sufficient to do a self assessment online.

Not sufficient for what?

It's no a self assessment though, it says this is inclueded...

"Diagnostic questionnaires sent, collated and analysed.

An online mental health screening

An online diagnostic interview with an HCPC Registered Clinical Psychologist.

A full diagnostic report with recommendations for aftercare.

A post-diagnosis online session with a member of the RTN team."

@Catterpillarwithconverse

An online assessment that does not meet the diagnostic criteria for an autism assessment will not be considered sufficiently valid.

I repeat - It is not valid -* *you may as well set £1000 alight and write yourself a note saying you are autistic for all the notice support agencies will take of it. All they will say is, that’s very nice and indicates you could be autistic, come back to us when you’ve been properly assessed.

In fact we could not progress with getting one of our children supported at school until the private report we paid for was ratified by the NHS and considered valid.

Why having a proper valid assessment matters

• support at work
• support with education
• access to therapy, support programmes, intervention
• medication
• access to disability benefits and things a disabling facilities grant, carers assessment/grant, other support grants

If you really want to pursue this online thing and spend the money, it’s up to you. But really you’d be better to spend the money elsewhere and follow the routine channels if you want proper support and acknowledgement. And also to be sure you are autistic, to rule out any other issues.

support at work I'm self employed
support with education the uni has already accepted my dyslexia diagnoses and honestly I think that's all the support i need from them
access to therapy, support programmes, intervention I don't believe there is any!!
medication yes I agree with this for ADHD. I'd need to go down the right channels for ADHD.

access to disability benefits and things a disabling facilities grant, carers assessment/grant, other support grants I won't be applying any of that.

Just to add, I had a look at the website you posted more thoroughly and I couldn’t see anywhere them mentioning ADOS or following NICE guidelines. It looks very London and impressive… but I’d be concerned because they don’t mention how they do anything, just a lot of fluffy language.

I randomly looked for a number of other private assessors in the U.K. and all of them state following NICE guidelines and doing ADOS, some give more info than others and state reports are acceptable for NHS CAMHS/Adult autism service. That’s what I’d be looking for.

@SensationalSusie thanks for the, that's really helpful

That*

Not sufficient for what?
Not sufficient to diagnose autism accurately. A self assessment questionnaire and a video phone call simply isn’t enough. Autism assessment is an expert field and a proper assessment takes multiple hours of face to face contact with you and your family members. That’s why there’s such a long waiting list! They can’t do a proper assessment in a single video call.

And while you may not be claiming disability benefits or support grants right now, you could end up needing them as you get older, and you won’t be eligible. You may end up spending time in hospital or in care and you won’t be entitled to reasonable adjustments for autism. Your employment status might change and you won’t be eligible for reasonable adjustments at work. If you want to sue someone for disability discrimination you won’t be able to. Etc.

If you really want to pay for autism assessment then do so - a full face to face assessment costs about £3-4K. But I don’t suggest wasting money on this online assessment bollocks.

If you’re at Uni that means you are young. Yes you are self employed now, but in 10 - 20 years time this may not be the case. Please bear in mind that you are getting this done for your lifetime support and the validity of diagnosis may become an issue at a later date. You may also have preferential access to certain jobs with a proper diagnosis as organisations need to fulfil their disability quotas.

You’d be surprised what help or assistance you may need through your Uni course - for example whenever you need to do group work or presentations…

There are plenty of support programmes and help available. We’ve found it amazing for our children and just starting to get a handle on things for myself. But you need the diagnosis.

If you don’t want an extra few thousand a year to help you cope with your disability and to pay for therapy/assessments that’s up to you. Also you will miss out on more money at Uni potentially.

Anyway, to get back to your original post, you asked what people thought of RTN assessment specified.

• I wouldn’t consider it to be a full, valid or useful diagnosis going forward.
• If I were considering private providers I would bypass this as it doesn’t look legit to me.
• The questions I would ask specifically would be do they follow NHS protocol/NICE guidelines for assessment (see prior link) and is the report able to be ratified for NHS.
• I would, once you are referred to NHS, ask them if they accept reports from RTN and what assessments are specifically required to ensure you cover all bases.

I’m sorry but I wouldn’t personally go for RTN if it were me.

@Velda

THIS 100%!!

And while you may not be claiming disability benefits or support grants right now, you could end up needing them as you get older, and you won’t be eligible. You may end up spending time in hospital or in care and you won’t be entitled to reasonable adjustments for autism. Your employment status might change and you won’t be eligible for reasonable adjustments at work. If you want to sue someone for disability discrimination you won’t be able to. Etc.

and

I don’t suggest wasting money on this online assessment bollocks.

Re. Price - my assessment was £850 but they now charge £1050; ADHD assessment knocked a few hundred off as with the same organisation.
Price varies a lot with location.

Have you looked into ‘right to choose’? You can go through the nhs but are referred directly to one of the psychologists they offload work to. The waiting lists are much shorter. Psychiatry uk is one of them (looks like it’s 12 weeks wait). Look on their website and they tell you what you need to tell your gp. Also, it’s online and perfectly valid. We have children at school who go through online assessments for asd.

Just had a look at psychiatry U.K.

Right to chose is just for adhd assessment, only England and demand is such that wait list is 6 months currently.

Had a look at their brochure and it doesn’t state anywhere about following NICE guidelines.

@nicthalion fantastic if your school accepts online assessments. Our school and any others of our friends children would only go forward with NHS ratified report which means following a thorough assessment (6 hours face to face; online tests; interview of close relative) not a 1hr job! Clearly things can differ vastly across the U.K. I’d still be inclined to have an autism assessment done in line with what’s expected in the NHS as it saves hassle later on. If NHS England are backing this online assessment for adhd to clear wait lists then that could be another matter.

for reference

www.autism.org.uk/advice-and-guidance/topics/diagnosis/pre-diagnosis/adults

Private diagnosis is always an option, if you can pay for one, but you may occasionally find that local service providers (for example, social services) will not accept private diagnoses and will insist upon you having an NHS diagnosis too.

I got an autism diagnosis a few months ago, via a private company contracted by my local NHS Trust to deliver NHS services in order to tackle backlogs and meet the high demand.

All contact was over the phone and on Teams, with online questionnaires. No face to face.

I don't know anything about any other companies but my diagnosis is valid.

Psychiatry Uk is just one of the companies you can use for ‘right to choose’ which is an NHS scheme. As someone else mentioned, the nhs contract out the assessment to them to clear the backlog. They do asd assessments too. The online assessments we’ve had at school have all been done in line with nice guidelines and through school referrals (not private) in the usual way.

If NHS is contracting out online assessments in certain areas that is A-Ok and fantastic people are being prioritised and leap frogging waiting/prolonged assessments.

Just cautioning anyone reading to ensure the private service they are accessing is either a) contracted out via NHS or b) able to be ratified by NHS dept at a later date. This way it is a valid diagnosis.

@nicthalion where you are sounds like another universe… we have had to chase all referrals and reports for our child with little input from school and now having to pay for private Ed psych and do all the paperwork ourselves too!! It’s a good school. But the area we are in is very under resourced.

To be clear: I did not "leal frog" or otherwise circumnavigate a waiting list to receive an assessment faster than anyone else in my area because my Trust uses private providers. My referral was treated the same as anyone else's when it was triaged...

...However, I was prioritised because I am in the perinatal period. Therefore I was assessed within weeks rather than months, per the standard at my local Trust.

I am in no way saying that it is the same anywhere else, but it is worth looking up the local autism strategy at your health board/Trust/local authority etc, as different places do things differently. And if you have additional circumstances such as being perinatal, ex or current forces, sometimes certain NHS staff, health conditions, etc, you may be seen or at least triaged sooner than you think.

The system is broken, for sure, but there are some areas of light and hope ❤️