Autism / ADHD diagnosis via Zoom?!

[WhatEh]

I had heard this was happening on the news, but to be honest, I thought it must be a small, isolated amount of people…

However, upon speaking to my friend yesterday, it turns out it’s very common for the NHS to refer people for ‘remote’ diagnosis - her own DC just did their autism assessment over Zoom and was diagnosed!

I understand needing to reduce the waiting list and burden on the NHS. I can’t help feel this is totally inappropriate.

When my own DC was diagnosed with dual ASD and ADHD, so many things the psychologist picked up on were from physically seeing them. Differences in body language, eye contact, sensory differences (one of the things that alerted her was them taking their shoes off when they came in the room).

I just don’t understand how something as complex as ASD can be diagnosed over Zoom, especially when lots of the criteria relate to differences in body language and communication. I am not autistic and I communicate differently when doing a meeting in person vs online. They haven’t even met the person who they are diagnosing.

Who says they are self paid for?

Mine was theough the NHS right to choose.

I was told the waiting list for a direct NHS appointment was 6 years, or i could go through a private company under the NHS within 6 weeks.

They don't get any more money for a positive diagnosis vs negative, just like the NHS.

I don’t doubt the person I doubt the method. You’re supposed to observe the person in different contexts in person.

False. I know of a few people who have not met the criteria for a diagnosis and that was private! You usually have to be screened first to see if you even warrant an assessment!

No. My son’s ADOS was conducted the exact same way as my daughter’s was. One face to face, one virtual. Both had their positives and both noticed the same things.

Agree.

My daughters friend went for a private diagnosis after my daughters NHS one was done and they felt she had some of the same issues. They paid £2k and she her result was she was not autistic.

Exactly this.

My child was rejected on screening with the NHS - they didn’t meet the threshold based on the school questionnaire (they mask at school and are a top achiever).

They were diagnosed privately and are very clearly autistic and moderate ADHD. They would not have received a diagnosis had it just been a questionnaire or Zoom assessment.

I am not saying Zoom is over or under diagnosing, I am questioning the methodology.

I think it’s better than people waiting years to be seen in person.
a huge part of the assessments are the results of the Connors plus also the ADOS and for ADHD the QB test.
I don’t have any issue with people being diagnosed this way. If someone is a close call, perhaps an in person consult would be a good idea to avoid them slipping through the net. But my son’s consult could have been done online and it was done privately through BUPA.

Why though when it’s proven to be OK? There’s no way the NHS would allow it otherwise?

I sent all my daughters assessment notes to our local paeds who happily accepted that it met NICE guidelines and their departmental standards. That was virtual.

The NHS is a shit show. Nobody in my immediate circle has had a good experience with them recently, all are having to go private or without due to misdiagnosis, bureaucracy, inefficiency.

it’s a different issue to say a child is achieving sufficiently to be rejected from NHS assessment. I can see how that can happen when they are doing well at school. But it doesn’t mean a private assessment can’t be done adequately online. Eg the QB check would flag up the ADHD

I don't think anyone is diagnosed solely on the basis of one zoom call, though.

By the time my 8yo dd gets assessed (whether in person or virtually), we have the following as evidence:

• One parenting course certificate (required in order to access the pathway)
• Two early help referrals including notes from several Assess Plan Do Review meetings with school
• Notes from several meetings with the school's family worker
• 6 weeks of one to one support from a mental health practitioner via camhs
• One half term of missed schooling (authorised absences due to mental health breakdown)
• A report from a private specialist we brought in to assist with getting her back into clothes and back to school
• A report from an Educational Psychologist
• A successful application for an EHCP
• A referral from a General Developmental Assessment with a paediatrician
• Multiple questionnaires and forms

Oh, and the senco at her former school believed there was nothing wrong, such were her masking skills.

Believe me, after all of this, I'd welcome an online assessment if it speeded things up. She's been in the system for four years. There are multiple pieces of evidence suggesting neurodivergence.

yep but you only have to look at threads like these and others to see people who don’t believe private diagnosis either.

I’m not quite sure what people are saying here, tbh.

The majority of cues can be seen over Zoom - fiddling, engagement, speech patterns, eye contact, use of language etc.

If sufficient cues are present, together with other evidence (history, behaviours, communication difficulties etc) then a diagnosis can be given.

Surely no one thinks that’s a problem?? The evidence is there and being assessed robustly by an appropriately qualified medical professional.

If you’re worried that you won’t get diagnosed because the signs are so subtle and a few of the in-person cues can’t be seen (such as difficulty in an unfamiliar place, response to a strange environment etc) then you can always ask for a second opinion/follow-up in person - although you might have a prolonged wait.

An online assessment keeps your options open while also providing the opportunity for more kids to be seen earlier - which is vitally important.

Took appeals, 2 tribunals etc. Took ages, well beyond statutory deadlines, private reports ect. I was not easy and I came close to a breakdown. Far from easy.

I think I feel similarly to you OP, but I am biased as I had my own assessment in person.

Upon entering the room they could see I was absolutely shaking with fear of the transition, and there were many other things they picked up on that helped me in my report to access things like disability benefits through submitting my report as evidence that they simply would not have been able to report on via a zoom call.

I had 2 people in my ados, one speaking to me and one documenting my body language, and they both engaged with eachother and myself to gauge my level of emotional reciprocation and highlight any repetitive movements that I displayed.

In a small frame on their computer looking at just my face they would not have been able to see any of these behaviours.

I might still have got my diagnosis based purely on self reported evidence, but I imagine for many that the ados is significantly more impactful than the self reporting that they've submitted.

Also when I took my son to his appointment, he stripped his clothes off, flapped, ignored his name being called by the assessor until she started singing, lined up all her toy cars, and made strange and repetitive noises to her in response to how she physically interacted with him. I don't think he would have even engaged with an online pathway. His lack of engagement would have told them something was going on but they'd still not have witnessed that his behaviour happens in multiple settings which is a key part of the diagnosis.

100% this. I was concerned a virtual assessment would miss my DDs. The people who carry out the ADOS testing are extremely good at picking up subtle cues that even us as parents can miss.

There is a difference between an “online test” and a zoom diagnostic exam with subject matter experts. We are not talking about online quizzes.

they can and do though? As I said my son and daughters ADOS were the exact same and it is that that is considered the gold standard for autism assessment is it not? The lady still picked up on the subtle cues you or another poster have mentioned like fiddling, lack of eye contact etc.

I also have 3 weekly appointments with my DD ADHD clinician.. virtual does not make the diagnosis any less valid. ADHD is also largely based on questionnaires from multiple settings, a QBtest and an assessment from a clinician..

For ADHD, it's far more about reported behaviour, cross checked with reporting from multiple sources. Otherwise a dcotor woudl have to follow the person around for DAYS. If you spent a day at school with my DS, you might immediately pick up that things aren't quite right - if he's having a "bad" day - or on a good day, you might think, "he seems like a nice kid, I wonder what his mother/teachers are going on about as he's got friends, engaged with the teacher and took part in a spirited game of football."

There are so many things that impact his ADHD, which is one of the challenges - he finds some things hard. Doesn't mean he CAN'T do them, just that it's harder. Or that he can't do them all of the time. So a snapshot is never going to give you a good sense of him.

For ASD, I don't know enough about the diagnostic criteria to know if it's true that in person is much better.

yes, this is very much true. The issue isn't the online assessment. It' sthat some NHS criteria are much more stringest because there isn't necessarily capacity. That absolutely IS an issue, but it's a separate issue.

YADNBU. Nearly all posters are talking about pretty much just confirmation of a suspected diagnosis. Diagnosis is NOT just about checking you tick the boxes to confirm a diagnosis - it must also be able checking those boxes you tick don’t form part of a different diagnosis. It is not ‘autism/adhd or nothing’, it is ‘autism/adhd or something else instead of or as well as these, or nothing’ .

Will bow out of this thread but I would say virtual assessments certainly have their place. Just because one assessment is virtual and the other face to face doesn’t mean it isn’t valid.

Absolutely agree

@Schoodle Sorry for the late reply. Our DC was assessed through this organisation. https://www.problemshared.net/right-to-choose It was a very lengthy procedure despite it not being in person and involved several long calls and questionnaires as well as a follow up call and report.

@Whateh I completely understand your concerns but I think in some cases, the Zoom approach can work well.

We know someone who had an in-person assessment and it didn't sound very different to what our DC experienced (bearing in mind our DC was a young adult when the assessment took place). But from what PP are saying, it sounds as if assessments vary quite a bit in the way they are conducted. Maybe that's more of a concern?

I recently had major surgery and I was amazed at what was picked up by the rehab team afterwards via Zoom, including a slight hip issue which I wasn't aware of. I'm usually sceptical about treatment and diagnosis via phone calls and Zooms, and agree that it should not become a blanket replacement for the nuanced observations and interactions that in-person consultations can achieve. But in some situations, it can be really effective. I don't think rejecting any approach entirely is sensible especially when we're working with a health system that's so under pressure. We couldn't afford to go private and the diagnosis for our DC has made a world of difference to our DC. I'm very grateful we had the opportunity to use the organisation we did and were impressed by its rigour.

Agree with @LOLOL82 (who was a lot more concise than I've been!)