Evelina assessment, what to expect

[Mumonthebrink2025]

My daughter has been given an appointment at evelina after her ASD assesment was declined and I asked for a second opinion. The lady on the phone said it will be a three hour appointment with a variety of specialists including an OT, a speech and language therapist and others.

Has anyone had similar and can talk me through what to expect- for example will they make a diagnosis that day and look at all possible diagnosis'?

My son has also been referred to the Evelina - I was told similar regarding the timings but would be interested to hear other people's experience.

My son has been completely traumatised by our local CDC so I am interested in responses (our CDC seem to think he has a severe learning disability and doesn't understand them but he is actually just completely mute and then completely freaks out because of what they are saying)

oh no, it's not easy is it? what's a CDC? if i remember to update i will after the appointment.

Sorry - CDC is the Child Development Centre (not very child friendly though). If you could that would be great. My son is starting a new specialist school tomorrow so I've been holding out so they can fill out any questionnaires.

It can help to make a timeline of the history. Sometimes Evelina likes to see reports from other professionals involved/involved previously and sometimes they like to speak to them too. Don’t panic if they do, they will come to their own conclusions rather than merely accept others’ views. That is partly why it is an MDT set up with several professionals.

You and other professionals involved will probably get questionnaires beforehand.

Most of the time, they can diagnose or not and make recommendations from the first appointment.

No personal experience, but I have seen some of their reports.

if it makes you feel any better our local paediatrician told me pre assessment that they have to extra cautious about making diagnosis because so many people lie to get benefits,and looked me in the eye and said they concluded there was nothing medically wrong with my child whilst she was mid meltdown and punching me in the arm from having to listen to me talk for 5 mins. i was like who would go through all these forms for an extra few hundred a month!

thank you! i've got the questionnaires.what's MDT?

Multi-disciplinary team, i.e. the team is made up of multiple types of professionals e.g. OTs, SALTs, doctors, psychologists (IIRC, they have EPs and CPs).

I do feel like they are desperate to avoid diagnosing anything - it feels like they have made their minds up and won't consider anything else. We already have DLA, an EHCP and are on to our second specialist school placement in a year (the first one failed due to lack of support and unidentified needs) - it is exhausting.

My DS was diagnosed with autism at the Evelina. It was several years ago now so I'm trying to remember exactly what happened. DS was around 8/9.

The whole process was very well handled and I felt we were really listened to by the professionals. DS had a positive experience too.

Our appointment was in the morning. It was quite early so we stayed in the Premier Inn nearby the night before (free breakfast for DS!).

We were shown into a room where there were three professionals. A consultant, a senior speech and language person and a child psychologist. We all chatted for a bit - I think they were 'getting the measure' of DS to see if they'd be able to work with him in a separate room without him getting too distressed. DS has always been much better with adults so after a little while, he was more than happy to go with the speech and language lady and the psychologist. They told him they were going for a chat and to play some games.
They took him into a room which was next door - there's a two-way mirror so you can see them.

The consultant then asked us LOADS of questions - stuff going back to when he was a baby. Things like 'did he crawl, if so when? When did he talk?' Lots of background information including family history of me and DH.
I think that went on for maybe an hour?

After that, DS was brought back in. We were then told to go downstairs for a coffee while they had a chat. After about half an hour, they called me on my phone to come back in.
I can still remember feeling sick - wanting the diagnosis but also not. I think DS was in the room at the time but he was playing. Maybe they offered to take him out? They told me 'we all agree that DS meets the criteria for a diagnosis'. They went on to explain why they'd reached that decision - pointing out some of their findings when they assessed him. It was really eye-opening! DS can be quite subtle in his presentation at times but they saw his difficulties/differences so clearly.

However, I also know of two families who didn't get a diagnosis on the day. In both cases there are other things going on (in terms of other genetic conditions) so I guess they had to have a think about it.

We were discharged by them on the day as that team only diagnose but a little while later they sent through a really detailed 5-page report of their findings. That was so helpful. It helped feed into our EHCP application.

We told DS straight after the appointment about his diagnosis as obviously at his age he wanted to know what was going on. He just shrugged and then asked if he could play on the slide. The Evelina has an amazing indoor slide!

Good luck to you both. I remember what an incredibly anxious and difficult time it was.

Ahhhhhh thank you, that's so helpful.

I'm also looking at the nearby hotels. She told me that all their appointments are always at 9.30am and they don't see any other children that morning, it's all about getting dd assessed. She did say whatever they write in their report will help with the EHCP, so I'm holding back on applying until then.

DD is doing a lot less masking in public when she's with me, so that's starting to help things get seen. We were in a children's ward the other day due to her mental health deteriorating and the paediatrician said she'd never seen a child like my DD before, who was kicking me the whole time I was talking to the paediatrician, so I'm hoping they can see her clearly at Evelina. But I'm sure they will with the length of the appointment, as DD gets restless after 5 minutes. She's desperate for some adhd medication to help with the rages- she will love the slide!

Personally, I wouldn’t wait to request an EHCNA. I would do it now. You can send further evidence when you get it.

Here they only give you a few weeks to send evidence and the appointment is three weeks away and could take a while for any reports to come through to me.

The rules are the same in all LAs in England. Don’t believe everything the LA tell you. They are fobbing you off. And even without the report from Evelina, you will have enough information to see you over the EHCNA threshold, which is relatively low - a) has or may have SEN, and b) may need special educational provision to be made via an EHCP. Delaying requesting an EHCNA, delays DD getting the provision she requires.

i already applied for one this summer, with all the relevant info and they denied it. i couldn't get the evidence i did have to them in time.

LAs act unlawfully all the time. It doesn’t mean what they say is correct.

Did you appeal? If so, you don’t need to request another EHCNA. If you haven’t appealed, what was the date of the decision letter? Do you still have the right of appeal?

@Toomanyminifigs I forgot to ask you what happened after the appointment? Was there any follow up, or did further support/therapy have to go through your GP?

I've just dug out the report - one of the advantages of never throwing anything away!
Some of it is quite 'technical' - it details the various 'scores' that he got in the assessment. There's stuff about his presentation, history, parent observations and concerns plus stuff from school. His teacher had to fill in a questionnaire beforehand.
It also details their observations of him - which as I said were eye-opening to me!

I also forgot to say that we did discuss ADHD and if DS would meet the criteria for a diagnosis. As he didn't, I'd kind of forgotten about that. They did mention that in the report that he didn't score highly enough to explore that. I'm not sure if the team who saw him for the autism diagnosis do also diagnose ADHD or if they suspect that they then refer to another team? I'm sure they will go through all that with you though.

In terms of follow up. We were discharged then and there by that team. DS was actually under the Evelina at the time for something else so he was already in 'the system' though. The report went to DS's GP and the community paediatric team. I think it's then up to you to decide who to share it with - eg school.

DS was already under speech and language. I know things are different now though and it can be difficult to access these services. Having a report from such high-level experts can be helpful in that it's hard for the local authority to argue against their findings.

One thing I would say - make sure you discuss school. I was concerned about secondary so I made sure to talk a lot about that. They said they have to be careful in what they say in their report - their remit is 'just' to diagnose. You can ask them though if they would be willing to say if DC would 'benefit' from a specific setting or being assessed by OT/speech and language. They may or may not agree but it can't hurt to ask.

Once he had his diagnosis, he was then seen by ASD Outreach at school. I think this happened automatically but you can chase. I'm not sure if they operate in all areas though?

One of the benefits of pursuing an EHCP is that EHCPs can include therapies in excess of what is typically available on the NHS. More frequently, for longer, without the need to sit on the normal waiting lists, therapies that the NHS doesn’t offer, etc.

The Evelina reports I have seen don’t offer ongoing support long term, but they can liaise with local services for ongoing support.

Not all areas have ASD specialist teaching services any more.

Following our experience with our local paediatricians my son's speech therapist also put through a referral to the Cauldwll children's charity- we are currently on the list for both this and the Evelina. Do you know if there is a difference between the assessments and follow up support?

My son is now petrified of paediatricians and hospitals because of how they have spoken about him (he is now 12 - referred to Cauldwrll just before his birthday) and I really want to make any further assessments as 'nice' for him as possible. I don't know anyone who has been to either so can't ask.

@thelittleroo the initial assessment is about diagnosis and recommendations. Ongoing support is about longer term support.

Both Caudwell and Evelina’s assessments are good, IMO. Both are MDTs. From the reports I have seen, Evelina’s are typically more detailed.

Both assessments will consider other diagnoses because they have to consider differential diagnoses when looking at an autism diagnosis. However, the Evelina team can diagnosis some other conditions but unless it has changed, Caudwell will suggest you go back to the GP for a referral elsewhere.

From the reports I have seen, Evelina doesn’t typically offer ongoing support longer term, but will liaise with local teams. Caudwell can sometimes offer a year of support, but the quality of this can vary.

Thank you - this is so helpful to know. I'll have a chat with the team at his new school and see if we can find a way to make the Evelina manageable for him as we have concerns in a number of areas.

Hello - I was just wondering if you've had your assessment yet and how you found it? I've finally booked the appointment but am apprehensive about how few and sparse the questionnaires I've been sent are... Perhaps my expectations are unrealistic.

That's interesting because I had a really long questionnaire which took me a couple of weeks to complete.

The assesment itself was okay, I felt they just spent more time focused on hearing my routine and not really enough time focusing on my daughter's actual habits and quirks and social skills.

The report was pretty damaging to be honest, they basically tried to say all her issues were caused by parenting issues, when they didn't observe me parenting at all. I felt like they overlooked so much
For example in the assesment where they took my daughter into another room to do some tasks, they wrote that she slid under the table, and growled when she didn't want to continue, yet also said she displayed no signs of nuerodiversity. I'm actually forming a complaint to PALS as it felt so unprofessional. They seemed to think that my method of low demand parenting which after six years I've found to work best, was the root cause of all my child's difficulties, even though I expressed strongly that it was a recent change in parenting technique and her issues have been present since she was a baby.

But I guess every child is different, and comes across differently and each of their assessors will be different. I can only wish you luck :)

Interesting - that is what I am worried is going to happen. Our local CDC is really pushing intellectual disability that I am in denial of (I'm happy to accept that my child has significant academic struggles) but our actual concerns (the school OT agrees) is around motor planning and motor skills and the significant effect they are having on day-to-day life. I haven't received anything related to this.
I will have a think about the best way forwards... my child will find the being taken off by random people really distressing so I need to make sure the outcome does not make this worse.

I'm really sorry to hear your experience was not better.

Hello - sorry, I know this post was a while ago. Do you know how long the others you mentioned waited to hear from the Evelina?

We went for an appointment 5 weeks ago and have heard anything...