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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:
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.

Agix · 01/02/2025 05:28

It may not be an autism diagnosis.

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:
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 05:15

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:
LuluBlakey1 · 31/01/2025 23:04

Is this S and L therapy private?

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.

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.

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.

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

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.

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.

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

Purpleturtle46 · 31/01/2025 21:05

PeachPumpkin · 31/01/2025 19:05

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.

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.

OP posts:
Purpleturtle46 · 31/01/2025 21:02

sunshine244 · 31/01/2025 18:23

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?

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.

OP posts:
RudbekiasAreSun · 31/01/2025 21:01

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

Purpleturtle46 · 31/01/2025 20:57

Babythreei · 31/01/2025 18:07

Hi OP,

I work in an assessment team.

So there is a couple of things here. Only a practitioner psychologist /paediatrician/psychiatrist can give an autism diagnosis (hence the discussion with the clinical lead). In terms of psychologists, it’s usually a clinical psychologist, although sometimes Ed psychs are asked to contribute to an assessment by giving information if they are school based, that is probably why they said it isn’t their remit, they probably weren’t trained in assessment or working in a diagnostic team.

A gold standard assessment is multidisciplinary, involves something called an ADOS assessment being completed and observation in school plus parent interview of the child’s development. In my team to manage the 3 year waiting list we have developed a system to support families where there is a huge wait. However, the process sounds quite different. We would only do this where the diagnosis is clear as day, no question at all and family are well aware without having had an assessment. We would still need to have all the above information but that could be gathered by the clinician working with the family, and then as a clinic we would want ‘eyes on’ the child at least once. I don’t know if there’s something around the way this has been delivered to you but I’m not sure what’s going on here. If it’s simply a case that a SLT who does not work in an ASD assessment team has asked someone with a small amount of information then no, that is not good enough. I don’t even know how they would write the report because they wouldn’t have the essential information. If that is what has happened I wonder whether what they were trying to communicate is that their conversation with the lead suggested that your child was likely to have ASD, and would warrant the child to be placed on the waiting list for further assessment.

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

OP posts:
Purpleturtle46 · 31/01/2025 20:44

AlbertCamusflage · 31/01/2025 17:58

It doesn't seem to me that this was an appropriate process.

There should be a multi-disciplinary process and a battalion of assessment interviews, including with yourself. What status does the 'ND lead' have? Is s/he another speech and language specialist? Surely there needs to be a wider input than simply from a sppech and language team?

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

OP posts:
Nn9011 · 31/01/2025 19:41

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.

Ellie56 · 31/01/2025 19:17

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. Hmm 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. Angry)

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.

Hankunamatata · 31/01/2025 19:16

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

PeachPumpkin · 31/01/2025 19:05

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.

Lyn348 · 31/01/2025 18:48

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.

Mummynextdoor · 31/01/2025 18:46

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.

Shutupyoutart · 31/01/2025 18:44

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