DD’s autism assessment today, so anxious!

[Thatsnotevenmyusername]

Just posting for a bit of support from you all.

DD5’s autism assessment is this afternoon and I am an anxious wreck, I feel like I could throw up! Just get me through this day! Praying for a diagnosis 🙏🏻

Good luck! I remember that day so well. Hope it all goes smoothly and quickly, ds was 10 at the time but was diagnosed in 30 minutes.

@itsmyp4rty thank you! I really am so anxious.

I am so worried they won’t pick up on her traits, they can be quite subtle unless you really know her. However her SEN is significant enough that she is in the process of being statemented (NI) and will be receiving 1-1 support in school. Her assessment from the educational psychologist was supportive of a potential asd diagnosis as well as a moderate learning disability and her paediatrician who is an assessor for our Trust also agreed that she fits the criteria. Her SLT and OT are also both supportive of an ASD diagnosis.

I am just SO worried we will go to this assessment with her in wonderful form and on her best behaviour and be told, nope, she’s fine! Because I know it’s not true! But I feel how can a stranger who has never met her truly assess her in only 1.5 hours. I feel sick 🤢

Have you had to write down as part of the assessment all the more subtle traits that you've noticed she displays? If not then definitely take a list if you can. You have the backing of a lot of influential people there! They will definitely take into consideration what the other professionals have to say.

I wouldn't worry too much about best behaviour, ds was never badly behaved by the time he got to the age he was assessed, the school even filled out a form that made him sound pretty much perfect, ticking all the boxes to say he managed everything and got on fine with everyone. But a lady from SENDIAS had observed him and noticed several things such as him covering his ears if noise got loud and the assessor asked him questions about things like pretending to clean his teeth and it was clear to her that he was very literal and had quite black and white thinking.

DS was diagnosed quite a few years ago and I know they have made getting a diagnosis more difficult - or even getting assessed! But IME they are pretty good at asking the right questions to get the answers they need so it won't matter if she is on her best behaviour. They might even get more evidence if she does cooperate well.

I have a huge list on my phone of potential asd traits, around 50 bullet points! Some more obvious things like her sensory challenges (she has a significant sound sensitivity), speech patterns (use of echolalia, perseverative speech, tangential speech etc), her regular routines and rituals and her severe social difficulties (she is unable to interact with her peers at all, she just stands on the side observing them all day - she scored severe in the SRS-2 social questionnaire from the Ed psych which would be indicative of a clinical diagnosis of asd.)

That makes her asd sound pretty severe but with adults she’s a delight - a sweet, gentle little chatterbox who loves to talk about herself and her own likes and interests! She makes great eye contact with family and friends, a little less with strangers and is able to play imaginatively to a degree.

I haven’t filled out anything for her assessment so far but I read out my lists of asd traits to her paediatrician which is when she said she needs referred for the ADOS as that is a very significant list. She gave me and assessment for her nursery teacher to fill out in June which I then sent back to her, the assessment detailed things like how she covers her ears at certain sounds, cannot interact with the other children at all, walks on tiptoes frequently, uses only a fleeting glance for eye contact, uses echolalia a lot and is unable to share and very possessive over the toys.

I am just hoping it is all enough and we walk out of there with a diagnosis today then the school can refer her to the autism intervention service (ed psych says we are unable to do this without a diagnosis!)

DD’s ADOS assessment went really well, she enjoyed the assessments and was very engaging. Her assessors were not able to give her a diagnosis today as they said it needs to come from her paediatrician and that the ADOS is only one piece of the puzzle. They will be arranging a meeting with her paediatrician to discuss todays findings and the paed will give a diagnosis based on her own findings, the schools findings, the ADOS results and most importantly my own observations of her at home.

I printed off her list of traits and gave it to them at the start of the assessment and they said that they seen many of the same traits during the assessment and that unless her paediatrician has strong reason to believe she doesn’t have ASD then we should expect a diagnosis.

So I am a little bit disappointed that we didn’t get a diagnosis today and have to wait to be called in by the paediatrician but I am relieved it is over and all things point towards her receiving a diagnosis.

Have they said how long it will be before the Paediatrician gets back to you?

@SiouxsieSiouxStiletto I have no idea, they didn’t say. They said the paediatricians can be difficult to tie down for an MDT meeting so it just depends really when they can get a meeting set up with her. I’m assuming (hoping) weeks but wouldn’t be surprised if it’s 6-8 weeks. Things seem to move slowly over here!

@Thatsnotevenmyusername do you mind me asking how long you’ve had to wait for the assessment? Am also in NI.

@YesMatey the process has been very quick for us but that’s only because DD has already been a patient with a paediatrician since she was a baby (due to growth issues/slow development) so at our annual appointment with her paed in June is when I expressed concern about her having autism. I went through my concerns with the paed who agreed assessment was necessary and referred us for the ADOS which she had on the 31st October.

A girl I know has gone down the traditional route of being referred by the health visitor/GP, she waited around 2.5 years for her paediatrician appointment which she had last month and was told it’ll be another 18 months or so before the ADOS assessment so much longer for her, we were essentially fast-tracked through the system.

How long have you been waiting?

That is super quick and I’m very pleased for you that that has been the case, I hear so many hopeless stories of waiting for far too long. We had about a year wait from GP to paediatrician and have been waiting about 6 months so far since referral for the assessment.