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.

I think yabu with ADHD. The adhd diagnosis is very heavily based on consistent reported behaviours over time reported both at home and school in settings on Connors type questionnaires, not really just on what’s seen in clinic as a snapshot and so I have complete confidence in an adhd diagnosis over zoom as the actual input data in the questionnaires is obtained IRL and over an extended period of time.

I expect money saving is a big reason why. It's less than half the price of an IRL assessment (I've been looking into it for one of my children as NHS assessments just aren't available here even if you're accepted onto the waiting list, as he was, it's decades long). I am able to pay the difference as I'd rather get him seen irl but not everyone has that choice. If the NHS are paying that want to save money too. But I agree it's not a good way to do things.

On ASD I’m in two minds. I would not choose to take my dc for an online ASD dx, because I think diagnosing social difference is harder to do accurately online. A clinic setting IRL would be far better and always be my preference.

But one of my dc has ASD which is so significant and obvious that even strangers seeing him in a shop can tell he’s disabled and stand aside for us. His questionnaires for school and us for ASD contained very high scorings for the traits that make up the diagnosis. An online diagnosis would definitely have been possible for him tbh as his ASD is very obvious.

We've got an online assessment for my DS next month through the NHS Right to Choose. I'm also dubious, eg you can't even tell if someone is making eye contact as it depends where the camera is in relation to the person on the screen. DS hates video calls as well. But it was only a 12 month wait as opposed to many years so it's all we've got.

My DC was diagnosed via the Right to choose route. It involved three (very long—two hours ish) Zoom calls—two with my DC and one with me) and extensive questionnaires. I was dubious but ended up very impressed at how the interviews were conducted. They got my DC to do various activities while on the call as well as asking lots of questions and the interview with me went into great detail and depth about my DC’s childhood behaviours (they have had the assessment as a young adult). Although I’d agree that IRL assessments should always be preferred, anyone having an online assessment should be reassured that this is not done less thoroughly. At least not with the organisation we were matched with.

I think if whether online is used is based on initial questionnaire and information and maybe age of child it could possibly work. I don't think it would have been appropriate with my DC and the school observations and the occupational therapy and the play based psychologist sessions were needed

@Currentquandry can I ask which organisation did your DC's assessment? We're with Psychiatry UK and it seems to just be one 1.5hr meeting (plus forms we've both already filled in). DS is 18 but he'll want me to be there with him.

For my DD it was the other way around. An online GP in a 10 minute consult asked if she was Autistic. I was floored and asked why - he said it was a hunch but worth investigating. Boom - a mix of forms, online interviews, face to face reviews and a computer based test reveals she's AuDHD. Masked beautifully for 15 years with never a suspicion from 4 schools and family who are medical and teachers.

I'd say online reviews have their place, but not in isolation.

It worked really well for us. Extensive questionnaire, the boy in one teams call being observed by one person and working through tasks/conversation with the other, us in another teams call doing developmental history. The clinicians then discussed and called us back in with a diagnosis with the report to follow

For my own DC, they are incredibly bright and articulate, it was the subtleties in their non-verbal communication that ‘gave it away’. So much of Autism specifically is about differences in non-verbal communication. How can you recognise this from a screen?

We have annual meetings with their ADHD psychologist, and they assess differences in symptoms as they get older. When we tried medication, they assessed whether it had helped physical symptoms e.g. difficultly keeping still.

When my DC first met their ADHD psychologist, they were on ‘best behaviour’, and didn’t present how they would normally. It’s only been since getting to know the psychologist and relaxing that they’ve been able to fully ‘unmask’ and show their symptoms in full force.

I just don’t see how this is possible via Zoom.

I appreciate that the NHS is overstretched, but this just doesn’t sit right with me.

Our DCs non diagnosis involved us and school filling in behavioural descriptor questionnaires, a visit to the child development clinic that included various sessions for him and an interview with us. There was also an observation in school. My worry with a Zoom diagnosis and, presumably, no school observation visit would be that they are skipping a very important part of the picture. For us this element was vital. The consultant admonished them for how they'd filled in the descriptors.

I had my assessment as an adult online. My mum had a 3 hour interview about me and my childhood to show evidence and then I had to answer lots of questions. My mum and partner also filled out questionnaires. I actually find it harder to mask on video call compared to in person. If you meet one autistic person, you've met one autistic person. What is right for your DC isn't necessarily right for other people...

But that’s the whole point - how do they determine who’s suitable for being diagnosed online vs who needs to be seen in person.

With Autism becoming such a huge spectrum now, I think it’s more important than ever to get the diagnosis right and to be thorough. One of the key criteria and symptoms is non-verbal communication and body language.

Many autistic people also have hyper mobility. How can this possibly be detected and adequate support given if the entire assessment is via Zoom?

As another person pointed out, how can educational recommendations be made without seeing the child in their school setting? Many autistic and ADHD children behave very differently at school vs at home, this is a very common phenomenon amongst the ND community.

Having been through the adult ASD diagnosis pathway, I feel doubtful that an online assessment would be as effective. There are so many little cues you can observe in the flesh that would be missed over Zoom, not to mention that it's a completely different for the person being assessed and if they happen to struggle with communication as many with ASD do an online assessment can exacerbate that.

My diagnosis for ADHD was a 50 min zoom call. I still have doubts with it, I didn’t feel it was in depth enough and I was upset by the psychiatrist’s analysis of me after such a short, superficial assessment.

Locally, the waiting list is 6 years. Many young people are in crisis because the lack of diagnosis means often also lack of adequate help and support. I totally understand why people chose RTC and remote. From the friends who used this service, all say it was rigorous. what do you suggest families do instead?

I completely agree, and actually I think it would have gone the opposite way with my DC. They are completely tech obsessed and so used to Zoom, WhatsApp etc. it would have been much easier for them to fake their way through it.

How can you diagnose what is fundamentally a communication disability without communicating with the person face to face?

I completely get that and that’s why I keep saying I do understand this is a problem with the NHS…

I just don’t see the solution as Zoom assessments, and I don’t see how this can adequately diagnose people and make appropriate support suggestions.

They may say it is rigorous, but are they in a position to make that assessment if all they’ve experienced is Zoom appointment(s)?

For my DC, it was:

• Initial questionnaires to parents, school and child themselves.
• In person interview with parents, based on questionnaires.
• In person interview with SENCO, based on questionnaires.
• 1 hour school observation.
• 3 hour in person assessment with DC, with the psychologist and a speech and language therapist.
• Written report, much of which discussed differences in body language, not picking up cues or other oddities in non-verbal communication.
• 1 hour post-diagnosis discussion - including recommendation to seek an ADHD assessment.

I fail to see how this can be replicated via Zoom only.

I don't know the solution to the long NHS waiting lists, but I don’t think this is it.

my son was just diagnosed this way, it wasn’t a quick process I had a two hour call beforehand and then he had an hour call where he was asked lots of questions and asked to preform some tasks, his report is very detailed and a lot of information is also given from schools. The only thing I did find off is when I applied for an ehcp for him and his appointment with the educational psychologist was a telephone call (not video call)

I have 3 autistic children, all NHS diagnosed. 2 had the ADOS face to face and the eldest did it on zoom (age 15). It was fine for her. You actually can still pick up on eye contact, body language, fidgeting. It would not have worked for my son who was 4 when he was diagnosed because he wouldn't have engaged. But I think for teenagers it's fine.

One of my now 7 year olds (twins) had her part of her Autism assessment via Zoom last year (just turned 6).
I have never seen her unmask as she did with the female practitioner that day. I was gobsmacked, as she masks in front of everyone, apart from her twin and me.
Zoom can work for assessments.

DD2 was assessed completely in person. DD1 was hybrid - the ADOS was in person and the psychologist interview was via Zoom. DD2 was assessed over Teams. For DD3 they had two professionals on the screen, with one observing and one leading the discussion. I had been given a list of items to provide for the assessment in advance.

Wait so it was just one phone call with the ed psych?

No additional assessment?

My daughter was diagnosed virtually. It was actually better for her as she struggles a lot to leave the house.

her assessor picked up all the things you mentioned? Aside from the shoes obviously. She noted little eye contact, constant hair touching/trying to hide behind hair. She also carried out the ADOS test with her. it also wasn’t just a zoom call, it was information from us as parents, information from my daughter herself, information from her school.

it’s not as simple as you’ve made it out to be.