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.

Honestly, no I haven't. It's not necessarily a bad thing -at least you don't have a two year wait. Don't be scared to ask questions though.

Are you in the UK?

I’ve not heard of it happening this way - particularly with children who are “coping” with mainstream school. I’m the inclusion lead at a secondary, so am involved in lots of ASD referrals.

Could you email the S&L therapist with a list of questions- you really should not have been blindsided like this, I’m sorry.

Have you someone there you can talk it through with?

You should be able to look up the NICE guidelines on autism assessment.

This is not best practice. Ideally the assessment should be multidisciplinary e.g. a Paediatrician and an SLT and should use an assessment e.g. ADOS. Some trusts are trying to manage long waiting lists by offering different pathways e.g. my trust have brought in that the Paediatrician can, in some cases, diagnose alone but with reference to the SLT notes or following a discussion with the SLT. I can therefore accept varying processes but the main issue to me is this process hasn't been explained to you before and you haven't been given the opportunity to discuss and ask questions.

Thank you. Yes I have people I can talk to, I am waiting for my husband to get in from work so we can discuss it. Even though I have obviously suspected she has autism I was not expecting anything to happen for a long time. I am in the UK, yes. She did say that sometimes the ND lead would need to meet if they were on the fence but this seems to have been an open and shut case which I am surprised by given she is coping well day to day and at school.

I was given the diagnosis each time by the pediatrician immediately

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

My DS SLT definitely drove his assessment, made the process faster and got his name out there, but he did have multi disciplinary assessments before we got the diagnosis. I think he was referred for first appt at 2, saw SLT for first time around 2.5 and was diagnosed just after 3yo.

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.

My eldest dd got a diagnosis after 2 1 hour appts at camhs. They said an ados wasn’t necessary as it was clear she had ASD and diagnosed them discharged her the same day

2 x DC diagnosed with ASD. Both diagnosed after 2 appointments with a paediatrician with my history and a school referral taken into account. So not quite as quick as yours but certainly not the 5 year slog some people have to go through.

It could be that your LA is doing this to try and deal with the insane wait times. I’m very surprised its been almost rubber stamped through - in my area, most of the referrals we’ve supported with where the children are “coping” have been rejected.

Does your kiddo have some very “obvious” traits?

Are you surprised at the speed of the diagnosis or is it the way it was delivered to you? I know I felt at odds with other parents of sen kids as I have had no issues in getting an ehcp nor any diagnoses. I thought 'god they must have it severely then'

No, I don't think so!

I would encourage you to think about what your concerns are. You might want to:

• Question how they made the diagnosis so you can feel confident it is accurate
• Provide constructive feedback or a complaint about how the process was communicated to you
• Request a time to speak without your daughter present and with your DH there

These would all be reasonable. If you know what you want to achieve then go back to the team and discuss further.

Both

This sounds very poorly handled. If this is the process happening locally I would say it is inadequate. I agree about emailing the SaLT and asking for a session to go through the assessment and report to understand the outcome. I'd say don't be afraid to complain if you think at the end of it that it doesn't add up.

Nope

SALT gateway the ASD assessments here. Our first appointment was with them, and they referred to CAMHS. We had a mixture of questionnaires, and appointments with the consultant .. then it was all taken to panel, and they did the diagnosis.

Any CAMHS involvement?

What has the S&L therapy been focused on?

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 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.

We had the following last year, a multidisciplinary panel to NICE guidelines via private clinic.

Initial pre screen questionnaires and meeting
Developmental questionnaire completed by parents
ADOS assessment (with child)
3DI interview (with parent, completed by psychologist)
School feedback form
Report and feedback

I don’t think yours sounds right tbh! We came away with no diagnosis, didn’t meet all the criteria for the DSM 5, it was very thorough. And expensive. 😬

No, my daughter has recently been diagnosed. The process included a general review with the paediatrician who asked to refer her for an ados assessment. This assessment was done by the same paediatrician and a Salt. The full assessment also included a questionnaire to the school. Even after the assessment it still was a month's or so before we had an appointment to give and discuss diagnosis and a full report was sent in the post a week or so later.

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.

No camhs involvement, I thought that was what the referral was for. I self referred her for memory processing/word finding difficulties but when they did the assessment for that it came out fine so she continued on as she doesn't form some of her letters correctly so she is currently getting help with that.