Have you heard of an autism assessment being done this way?

[Purpleturtle46]

I have suspected my daughter (8) might have ASD for a couple of years. Struggled to get anywhere initially as she masks at school so they weren't supporting a referral. She has been attending speech and language therapy for the last few months and her speech and language therapist asked if she could refer her. I agreed and we filled in the referral form together a couple of months ago.

Today my daughter had her usual speech and language appointment and at the end the S&L therapist dropped the bomb that she had been given a diagnosis. She said the report is currently being written and she will arrange an appointment with me to discuss it. I couldn't ask any questions as I didn't want to discuss it in front of my daughter and she also caught me totally off guard.

I have never heard of an autism diagnosis being done in this way and was gearing up for a 2 year wait for diagnosis. She said the meeting was with her team leader and the ND lead I think but the conversation was a bit of a blur. I would have thought she would need to have seen a specialist for a specific autism assessment but apparently that's not the case and from the information I have given and the S&L therapist has given that is enough?

Has anyone had a similar experience that can confirm this is correct, it all feels a bit strange?Please be kind as I am a bit overwhelmed.

Curiouser and curiouser…

Doesn’t sound like an obvious ASD diagnosis and doesn’t sound like the right people have yet been involved.

If she has an ed psych and is under SALT referred by a GP, I would already assume she is "in the pipeline" and on the road to a diagnosis. Most kids take a year to get that. If you think she has it, a diagnosis will open a lot of doors with the EHCP process. I would be grateful and let it slide.

I'm a SALT. If you feel comfortable, feedback how this news was delivered to you to save anyone else having to go through similar. Not being given a window of time to process this and ask questions is terrible. I hope you're ok.

I'm a SLT and this doesn't sound right at all. She isn't qualified to make the diagnosis even after discussion with a "ND lead" sometimes a SLT might be the one leading the conversation if they were the professional who knew you best after a MDT decision but that doesn't sound at all like the situation here.

I've worked a long time and I've heard of mistakes happening, like a child being diagnosed and the therapist telling parents before pediatrician was able to or a child with a cardiac condition that is also has abbreviation having autism written on reports as therapists misunderstood the notes. I wonder if this is some kind of error and I would query it

Not for autism - i has initial parent history appointment (1hr covering everything from pregnancy onwards), questionnaires to school and parents, hour meeting with child then a separate hour with child including ADOS assessment.

Is it definitely an autism diagnosis not something else?

Well she was right in terms of the fact an EP can't make a diagnosis. They aren't medically trained.
But equally, nor can a SaLT.
Don't get me wrong, SaLTs input is crucial, they absolutely can see Autism in children they are working with, but they must then pass that information on to the Paediatrician for the Paed to make the diagnosis.

Diagnostic pathways vary from area to area and, given wait times, many places are running virtual models. You mention professionals from at least 2 disciplines who may have shared observations and assessments to meet NICE guidelines. The EP may or may not be involved in your area's pathway.
Can you ask when you'll receive a report outlining the nature of the assessment and conclusions?
I'm sorry it's come as a bit of a shock for you OP. Not quite informed consent.

It’s totally different from my experience as a parent, which involved in person appointments with several different healthcare professionals and my son, a questionnaire, a phone interview with just me and input from my son’s teachers. It took several years to complete.

EPs can, and do, diagnose autism. It may not be an area they choose to specialise in and if, they're employed by a LA, it may well not be part of their role. It's not a medical diagnosis, but is diagnosed by observation, discussion and behaviour over time. All core activities for an EP

@Purpleturtle46 this doesn't sound right at all, and depending on area, the wait is 2+ years after the initial assessment.

In our area you have to fill out zillions of forms, then providing your child ticks enough boxes, you then eventually get an initial assessment, and if this is successful, you get put on the official waiting list which is 4 YEARS in my area.

My DS2 was flagged up aged 6 (Y2 at school) as being likely autistic by his teacher (although there were signs there from aged 2). It took a year of form filling in and initial rejections where they then said he was just anxious and offered us an anxiety management program which we gladly accepted to get some help.

When the CAHMS person met DS2 (who was in Y3 at this point), she could clearly see he was autistic, so they put him on the diagnosis waiting list and backdated it to when the official forms were initially filled in (Y2). He is now in Y4 and we are hoping he will get assessed by Y6 before he goes to secondary school.

Some areas have a different system and shorter waiting lists.

My son saw an OT and a SALT. Us parents had a 3 meeting with a psychologist I think she was. Might be worth looking at the NICE guidelines

No, that doesn't sound usual. Both mine had the ADOS, and both diagnoses were given by a paediatrician. My DD's assessment had input from school, a SLT and a Clinical Psychologist, my DS only saw the community paediatrician although she took input from preschool.

Are you sure the diagnosis is autism and not say speech and language disorder or some diagnosis in line with autism?

My daughter was diagnosed with PDA by a paediatrician but then I discovered that no one in Education would accept it so she was assessed at CAMHS, where she was diagnosed with asd with PDA.

Later she was diagnosed with a speech and language disorder by a speech and language therapist and she went to a specialist speech and language school for secondary.

Speech and language is often used as a way of saying autism without having the actual diagnosis of autism.

Anyway, I guess processes vary across the country but do check exactly what the report says.

I've never heard of a diagnosis being given like that no. my ds was referred when he was 3/4 had assessments at the time pre school and home and was given a working diagnosis for 2/3 he had that, was re assessed late last year, by psychologist with a SLT involved too, filled in lots of forms had two parents meetings, observed him at school and a formal assesment with ds observed by psychologist and SLT and then finally this month was given his official ASD diagnosis. he's now 7 almost 8. it sounds like you were really blindsided I hope you soon get a chance to discuss it properly with those involved as it does seem very fast but then maybe it depends where you are. I'm in Ireland. x

What did the referral form say?

I am just wondering if the referral that the SLT meant was to someone else in their team and they agree she is showing autistic traits and will provide a report for you to take to school?

My experience of assessment was the same as other posters. A multi disciplinary team and lots of paperwork and observations involved.

School's report made DS sound like the perfect child, his behaviour at school was very good (and his behaviour generally). He was diagnosed in about 30 - 45 minutes by one person - but that person was paediatrician and ASD specialist.

I really think the SLT should have been clear with you during the process that your daughter could be given a diagnosis on the basis of the information provided by you and her.

I would give feedback to them to say that you felt blindsided and felt that the process had not been made clear to you.

OP, I’m very sympathetic. I also had a similar situation where I went along to an appointment with my child, thinking it was just another information gathering appointment, and a diagnosis was given. I hadn’t been told a diagnosis would be given. I ‘knew’ my child was Autistic, but it was oddly still a shock. I didn’t have my DH with me and I would have brought him had I known a diagnosis would be given. I wasn’t given any information and very little time for questions. I did send in feedback, but for a very defensive reply. So a very unmumsnetty hug for you.

Dc assessments involved:

SALT
Parent interview
Child play session/observation
Parental questionnaire
Teacher questionnaire
(May have been school observation but can't remember)
Final assessment play session with 3 professionals when they diagnosed

We didn't get a diagnosis quite like this but it did come about because of an SLT referral.

We knew our son was autistic at the age of 3, but we went round and round in circles getting nowhere, because nobody was really listening to us. I talked to everybody I could think of. Doctors, HVs, SLT, teachers, you name it. It was so frustrating. Nobody seemed able to see what we could see.

One psychologist said our son definitely wasn't autistic on the basis of one hour's observation. An experienced Head teacher whose judgement I really respected and valued said she didn't think he was autistic, and another teacher said there was nothing wrong with him; he was just naughty/awkward/lazy (whichever adjective she felt like on that particular day. )

Our son had had SLT since the age of 3. When he was 7, a specialist SLT started working with him intensively for a few weeks. She rang me up to discuss his progress and I listened, amazed at the things she was telling me as he did none of what she was describing at home.

I told her of the concerns we had and she asked for permission to refer him to the multi disciplinary team at the local hospital. I had a discussion with a psychologist and then we saw a paediatrician for about half an hour. She said she thought we were a describing a little boy on the autistic spectrum and that was it.

It took us 5 years to get there, but it was the SLT who triggered the diagnosis. That was over 20 years ago though.

I've not heard of this specifically but for my ADHD diagnosis I had to see my psychiatrist but he also made me speak to another person who had such a random title it was something like occupational social worker (even though I'm an adult?). It could be that there is enough observations and based on weekly appointments the psychiatrist has given the go ahead to approve a diagnosis. I'm sorry it was sprung out of the blue, I'm sure it was a surprise.

I'm not sure, I will need to ask when I have my next meeting with her.

I mean that is what I was expecting, to be told she has met the criteria to be referred.

I would personally oppose such < diagnosis > and would accept a dyagnosis ONLY IF I INITIATED IT AND WAS THERE, WHILE MY CHILD WAS TESTED

She didn't specifically say 'autism' today she just said 'diagnosis' but not sure what else she could be referring to as that's the only possibility we have discussed.

Thank you, that's exactly how I felt. I would definitely have taken my husband and not had my daughter there so we had the opportunity to ask questions. I would also have been able to mentally prepare myself for the news.