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Share your dilemmas and get honest opinions from other Mumsnetters.

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

88 replies

Purpleturtle46 · 31/01/2025 17:39

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.

OP posts:
marthasmum · 31/01/2025 21:13

Hi OP, I too had a diagnosis given in the way that others have described I.e. multiple professionals, CAMHs input and we as parents were interviewed about her development. I actually found this part therapeutic as it was very thoroughly and kindly done and I felt really listened to - I’m sorry that you didn’t get this experience as part of it. Asking for more info sounds like the way forward xx

BeNavyCrab · 31/01/2025 22:13

Our daughter was a young adult by the time she finally made it to the top of the waiting list. The first contact was with the GP who went through some screening questions with her and then referred her to the NHS autism screening unit. They sent a long questionnaire that required filling in by both her and us. It went through behavioural things as well as why we thought a diagnosis might be helpful. They asked for contacts who could talk about her education and development. That then got graded and they decided that a diagnosis might be appropriate.

It then took nearly four years before she got an appointment. Around a month before it, I was told that they would call me a week prior to her appointment. During the call they asked everything from how the pregnancy went, to if she passed her milestones and how she was at school.

Prior to the appointment they contacted her and explained how the process works and if there was anything about the environment they could change to make her more comfortable.

At the assessment she requested for me to come with her. The first question they asked was what we hoped for during the assessment process. Then they explained that they normally need to see her multiple times and then sometimes they would then need to have a meeting with everyone to decide whether they could see evidence of things that fit the criteria. Only in exceptional circumstances where it was obvious, would a diagnosis be possible on the first visit.

There were two people in the assessment and they both asked questions. They once again went through childhood with her, educational things and how she would respond in hypothetical situations. They explored her mental health and asked about friendships. They explored the type of support she was receiving at university and how it was working.

Our appointment had a couple of breaks for drinks and then at the end when we had gone over time, they said they had a diagnosis and would she like to hear it then or come back next time to hear it. She opted for straight away and was told she was autistic. They gave her some leaflets and answered some questions she'd had.

They then arranged another appointment to discuss it further and start to write the report and a document of specific information and adaptions that university, employers or healthcare settings should make for her. This was a very collaborative process and she was able to add in things later via email (she doesn't do phones) afterwards.

They also enrolled her on the online course they run for newly diagnosed people and other charities that can offer support.

I wouldn't think that a speech and language therapist is qualified to decide if your child is autistic by themselves, even if they discussed it with the ND team. We were told it needed to be observed by two practitioners and they both had to agree with each other. If one has any doubt, it would require to be assessed further.
There was also an emphasis on what we all thought about the diagnosis and how it would affect us. The document to "introduce her" and suggest reasonable adjustments was a very important part of the diagnosis and nothing was hidden from her. They explained what they were saying about her, why they thought it and how she wanted people to treat her in different circumstances. This is entirely lacking in what has happened in your child's case. If nothing else, it's left you feel shocked, unsupported and questioning if the diagnosis is correct. None of this is right, even if your area has given the speech and language services the ability to diagnose autism.

If you were just told that they were going to write up the report for the "diagnosis", it's possible that they were talking about the speech and language elements as the "diagnosis". We had years of speech and language therapy for our oldest and he had a diagnosis of Auditory Processing Disorder. Maybe you have just misunderstood.

It might be different because of your child being under 18 but I would expect some explanation and support for you both about having been diagnosed. I would also expect there to be some formal recommendations for adapting the school environment and ways they relate to your child. I would have thought to prepare it, they would go through their findings and get your input on the changes too.

Be gentle with yourself, it is an emotional time. Even though our daughter had requested the assessment herself and we were quite convinced that they were going to think she was autistic, it took time to process.

Remember that nothing has changed about your child, they are the same as they were before the diagnosis. Now you just have the way to explain to others about them and autism is a protected characteristic in law.
It doesn't mean that all the dreams they have for the future can't be realised.

soupyspoon · 31/01/2025 22:15

Purpleturtle46 · 31/01/2025 17:39

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.

Yes, I work with children and we have a myriad of ways children have been assessed, SALT with ND lead or paediatrican is common.

Mandylovescandy · 31/01/2025 22:22

The diagnosis for our 8 year old DC was through CAMHS and it took several months though it was quick from referral to being in the assessment system (3 months but we were already seeing CAMHS). There were 2 observations with DC, occupational therapy review session with DC, multiple interviews and questionnaire with me and my DP plus a school observation (very little seen as DC is generally ok at school) and then a final review meeting with everyone involved and a meeting where we got talked through the decision and a lovely report that focused very much on strengths and lots of paperwork to support talking to DC, parent group and some specific guidance and exercises to do

anon168231245630 · 31/01/2025 22:24

Speech and language are the ones who do the assessment where I am.

What's unusual about this was that you didn't seem to know she was being assessed. It's usually an observation, history taken, paperwork from parent and schools then the actual assessment.

Our assessment and feedback was given by my daughter speech and language therapist but I knew she was being assessed.

Flamingoknees · 31/01/2025 22:31

This might be a new way of cutting waiting lists for paediatrician assessments. There are assessment criteria, which must be met, before diagnosis us given. Ask the ST to go through this with you, and to explain the evidence that DD meets criteria. My opinion, based on work experiences, is that ST's are very well placed to complete these assessments.

BogRollBOGOF · 31/01/2025 23:02

DS was diagnosed 5 years ago.
9 months after GP referral had a QB test.
14 months after, had a Paediatric appointment with the consultant.
She diagnosed him on the day.
He'd been under SALT age 3-6 a few years earlier so there was a long standing multi-agency paper trail.
There was evidence from me (forms and the somewhat extensive mindmap I submitted with the referal) and forms from school (showing classic masking "high functioning" traits.

There was a moment when she dithered, spoke to herself that actually she had enough evidence, and then said to me that she was diagnosing him. I think the clincher had been when she mentioned The Wakefield Report and having not outwardly paid much attention, DS (looking at me) announced that he'd take that report, turn it into a paper aeroplane and fly into the bin Grin
There had been quite a lot of communication clues demonstrated through the appointment. I'd never registered his habit of looking at me while talking to a 3rd person before. Naturally I've noticed it ever since.

I clearly knew there was something unusual about his behaviours hence making the referral, but I'd had doubts that the extent was clear enough for a diagnosis, let alone that a professional would see it so clearly and decisively. It was a suprise that it came that day and it took a while to really process it. It was the first time I felt really listened to and understood (primary school never seemed to "get it" even despite the NHS headed diagnosis "he's doing well enough".

I'm glad she was decisive about it because a few months longer in the system would have tangled it up in Covid delays.

LuluBlakey1 · 31/01/2025 23:04

Is this S and L therapy private?

Purpleturtle46 · 01/02/2025 05:15

soupyspoon · 31/01/2025 22:15

Yes, I work with children and we have a myriad of ways children have been assessed, SALT with ND lead or paediatrican is common.

Do you mind sharing where you are based?

OP posts:
Purpleturtle46 · 01/02/2025 05:15

LuluBlakey1 · 31/01/2025 23:04

Is this S and L therapy private?

No, NHS

OP posts:
Purpleturtle46 · 01/02/2025 05:16

anon168231245630 · 31/01/2025 22:24

Speech and language are the ones who do the assessment where I am.

What's unusual about this was that you didn't seem to know she was being assessed. It's usually an observation, history taken, paperwork from parent and schools then the actual assessment.

Our assessment and feedback was given by my daughter speech and language therapist but I knew she was being assessed.

They have observed her in school but that was purely for S&L and was before autism was mentioned at all.

OP posts:
Agix · 01/02/2025 05:28

It may not be an autism diagnosis.

PermanentTemporary · 01/02/2025 06:05

It seems tome if you're not 100% sure what diagnosis it was, that's the clearest sign that it was at the least a poor process.

Morph22010 · 01/02/2025 06:52

SmileEachDay · 31/01/2025 18:10

Curiouser and curiouser…

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

Cahms aren’t involved in asd diagnosis in all areas. In our area it’s only if they are secondary school age the referal goes through cahms

Morph22010 · 01/02/2025 06:56

For my sons disganosjs we first saw paediatrician and he took background history, we then saw salt once. We didn’t have an mdt meeting paediatrician just phoned me and told me ds was diagnosed, whilst I was at work incidentally which wasn’t the greatest timing. I got the impression paediatrician just wanted to diagnose as fast as possible and discharge. This was nhs and was in 2016

JellyMouldJnr · 01/02/2025 06:57

SheridansPortSalut · 31/01/2025 18:02

I suspect that she doesn't have a diagnosis at all. She might be on the first step of the pathway to a diagnosis but no one who is qualified to give a diagnosis has actually met with her.

This exactly. Did the SLT give you a report or anything written?

bottlemom · 01/02/2025 07:05

We had a diagnosis from the initial consultation with a paediatrician and it didn't take anyone else's views into account. We then tried to get him some private support through a different company and they wouldn't accept his diagnosis as it apparently didn't follow NICE guidelines. This was 10 years ago though, so things may have changed

lifebow · 01/02/2025 07:13

We've recently had a diagnosis via right to choose.

The process was as follows:

  1. GP sends a referral - a questionnaire (I filled this in):
  2. The provider accepts the questionnaire and sends us links to questionnaires for further information for us as school.
3 ADOS face to face with a clinician
  1. A three hour meeting with a Paediatrician and they met my DD too (via Teams).

Diagnosis at the end of the call.

EarlyM0rnibg · 01/02/2025 07:15

Yep us. My DD’s CAMHS team led by the psych. No ADOS necessary as they had so much evidence and it was clear as day. It was needed quickly to help adjust her treatment . Interestingly my dd struggled to accept the diagnosis so they re did it over a long period of time with an ADOS and many psych led diagnosis sessions, in-depth family history dive( even though they knew most of it before). Result was exactly the same.

Fundays12 · 01/02/2025 07:23

My son was diagnosed on the day but we had speech and language and a clinical child psychologist assessing him for 90 minutes whist the paediatrician spoke to me. She also referred to loads of information provided by his nursery, school and other professionals. I would be a bit concerned the diagnosis your DD got doesn't follow NICE critetia

Purpleturtle46 · 01/02/2025 07:40

JellyMouldJnr · 01/02/2025 06:57

This exactly. Did the SLT give you a report or anything written?

No but she did say that there was a report which we would meet to discuss and she would send to school.

OP posts:
GoodYawning · 01/02/2025 07:46

Sounds like poor communication. When you completed a referral form then you consented to the assessment going ahead. But surely they should have let you know when the assessment was taking place especially as your daughter is only 8 years old.

People over the age of 16 can consent to their own treatment including an autism assessment, unless there is evidence to suggest they do not have the capacity to decide on their treatment. Children under 16 can consent if they are considered to understand what's involved in their assessment.

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/assessment-and-diagnosis/what-happens-during-an-autism-assessment#:~:text=People%20over%20the%20age%20of,what's%20involved%20in%20their%20assessment.

What happens during an autism assessment

Information about the processes involved in an autism assessment, including what information will be gathered and how you will find out the results.

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/assessment-and-diagnosis/what-happens-during-an-autism-assessment#:~:text=People%20over%20the%20age%20of,what's%20involved%20in%20their%20assessment.

Phthia · 01/02/2025 07:48

Purpleturtle46 · 31/01/2025 17:52

When I brought up my concerns initially with the educational physiologist she didn't seem to see any evidence of autism and also seemed to imply that it wasn't her remit to make a diagnosis.

Generally it isn't correct. However, I know some SLTs are qualified to make the diagnosis.

LimitedEdition77 · 01/02/2025 08:16

Whatever the diagnosis, this is an example of very poor communication from the NHS and the SALT, ironically.

At the minimum you should be aware of the assessment taking place, have time to ask questions, and why did they not speak with you without your daughter being present? you could ask how the process followed NICE autism assessment guidelines but ime the lack of resources if often used to explain poor practice.

WhiteRose222 · 01/02/2025 08:19

Bobbybobbins · 31/01/2025 17:50

This is surprising. With my DS it was a paediatrician who diagnosed with input from speech therapy and educational psychologist

Same for our DD. They advised the assessment wasn't specifically for autism (even though that's what we suspected) but a range of neurodiverse conditions, eg global development delay.