Has anyone been through ASD assessment for their child that could help please?

[Senmommy]

We have been on the waitlist for close to two years. I recently got in touch with the secretaries to see if we were getting close to an appointment. We have been under paediatrics for 5 years (DS is 6) and have regularly seen the speech therapist, she did her part of the assessment earlier this year. We haven’t yet seen anyone else other than his paediatrician. DS masks at school so other than home and the speech therapist it’s been hard to get evidence.
so I was expecting that the next step would be the assessment. However I have today had an email back that says the clinicians will be discussing him at the next meeting and then we will receive a phone call appointment to discuss the outcome.
Has anyone else had this? I’m unsure how they could come to an outcome without a proper assessment?

Yes I recently experienced this with my daughter. Her speech and language therapist and I filled in a form which I thought was to decide whether she was to go on the waiting list. From that form only she got a diagnosis. I am very confused by the whole process which was no explained to me.

The school didn't support the referral as she masks at school so the only evidence they have is from me and the speech and language therapist, who she has only been seeing for 6 months or so.

Apparently they are doing this in some areas of the country to speed up the waiting times.

My understanding is that an ASD diagnosis is only given after completing an ADOS assessment and 3Di interview, and has to be agreed by a multidisciplinary panel.

@Purpleturtle43thanks for the reply, it’s good to know it’s not just us this has happened to. Im glad you got the diagnosis for your daughter. I’m just really concerned now that they will dismiss him because of masking at school. The annoying thing is that when we originally filled out the forms the school had said they didn’t see much signs but things have got worse this year and his teachers have now also referred him for ADHD assessment as well. Hoping to just get some answers soon!

@Olsenthat was what I thought too but it doesn’t seem to be the case according the the email.

That's not the case everywhere. It's definitely good practise to involve a MDT in the decision making but currently this doesn't have to happen and a paediatrician, psychologist or psychiatrist can make the decision independently.

Good luck, Op, I hope that you receive the news you want.

Sometimes the child is visited by various professionals at school which can form a multidisciplinary assessment but over time. So that you still have several practitioners involved (as should be the case).

My now 16 year old was diagnosed this way at 9. She was diagnosed rather late because they dragged their feet and she had been diagnosed with ADHD at 6 so this conflated things somewhat. We did get the dx but the report was not very good and hasn’t been much use tbh!

My 5 year old received her diagnosis from Caudwell children in the Easter holidays. The report is very thorough. The assessment follows NICE guidelines. We got a 19 page report which is much more thorough.

@Lyannaathats my worry, that even if they have decided they have enough evidence that the report won’t be very thorough as it was 18 months ago that we filled out the forms and things have changed a lot since then. If we don’t agree are we able to appeal it?

Our diagnosis went through CAMHS and appeared to be a different process to if you entered it through doctors/GP. We were seen at least 4-5 times by psychologist (once with DC present), two play sessions with psychologist plus senior observer, two sessions with occupational therapist, multiple questionnaires, two sets of school observations as well as teacher questionnaire so it was a very thorough process. DC also masks a lot at school so the obs there didn't show too much but teacher had noticed some slightly unusual behaviours though nothing massively conclusive. Seems weird not to have psychologist observation sessions to me but maybe as you have been with doctor and speech therapist so long they have a lot of info already

We're slightly ahead of you. Waited 2 years and then had the phonecall assessment bit. One call for me, a separate one for DD.
That was in late January/February this year and we've heard nothing since.

Apparently the next stage is face to face assessment but I'm expecting by the time we get round to that DD will be over 18.

IMO the whole system is broken and not fit for purpose.

My son took about 3 years on the waiting list and finally saw Community Paediatrician March 2024. All referral assessments from school and SLT had to be redone to get up to date picture and he also had a QB test. Then over the last 12 months he had audiology plus 2 lengthy Occupational Therapy assessments. He was also observed at school by the community paeds nurse once just before he left primary and once within a few months of secondary. He saw paediatrician again in Dec and we had a phone consultation in Feb which confirmed ASD and DCD. They wanted to watch and wait for ADHD and he’ll see them again 6-12 months.

I was surprised at how comprehensive the whole process was. We’re in the North West.

We had ds asd assesement today before we even got there she knew she would be giving ds a diagnosis.
She used reports from speech and language, occupational therapy, physio and portage.
She did say the only reason we had a face to face appointment was because ds also has some issues walking so.she wanted to examine him.

Our SALT did all of the assessing in normal appointments, we had my daughter's community paediatrician at the diagnosis appointment but the decision had already been made.
The SALTs do extra training to allow them to do the assessment and they can do it without stressing the children out too much.

thanks for the comments, it’s making me feel slightly better about the situation. @Gloaminggnomethis is what I was wondering had happened. Although the SALT saw him regularly they only saw one huge meltdown about two years ago. They then said they weren’t seeing many signs. Until they did his assessment recently and they said he had no understanding of social situations, so when they showed him pictures etc he couldn’t explain how people felt or what was happening in the pictures. I just thought they would be more strict about what evidence they needed, not that I’m arguing it as it’s been obvious to us since he was little (head banging, huge meltdowns over little things, showing no remorse or empathy to others, not playing with others his age, stopped talking after one until he was three, massive sensory issues, won’t eat apart from one or two types of food, won’t sleep unless he’s had his melatonin, to name a few things) I’m just worried they will say no to the diagnosis if he doesn’t have a proper assessment.

@Senmommymy DS was diagnosed age 4, by a paediatrician, no assessment as such, just she observed him, and had his forms from nursery, health visitor and speech and language.
I think sometimes they have enough evidence, that’s it’s an obvious diagnosis.
My son was then diagnosed with ADHD age 6, with the same format, no assessment as such, but it is very obvious with him, it was just a waiting game until he turned 6, to get formal diagnosis.

Not sure if anyone is still watching this but I am wondering if someone can help with another question. I was told DS was being discussed by the panel today and we would be contacted to make an appointment to discuss the findings. Can anyone let me know how long after the panel meeting they found out if they had got a diagnosis or not? I’m an anxious wreck with all this waiting!