To mothers of DD’s with ASD…

[Thatsnotevenmyusername]

Could you please tell me your DD’s traits, what prompted you to seek an an assessment, what support (if any) your DD has received and how her development is now?

We are currently pursuing assessment for my DD 4.5 after it being at the back of our minds for quite a while however now that DD is in preschool it has come to our attention that she is struggling socially and “stands out” from her peers. I have started to compile a list of her little idiosyncrasies which I now recognise as possible ASD traits and would like to compare them with other mums of DD’s with autism.

(This has also been posted in Being a Parent before I found the SN topic)

At that age our DD seemed to cope with school but was having massive meltdowns at home, some SLT, and was very fussy with her food. She also needed a huge amount of time for us to settle her at night.

She's much older than your DD and is now on the Pathway. They've prescribed Melatonin which has had quite a transformative affect. The lack of sleep in her teen years has been chronic at times.

I think if I were you, I'd do this SLT progress checker. It will tell you if she needs some support with SLT and that can be a good way of getting her into the system.

I'd also call your HV and ask her to refer DD for a hearing test and ask her to assess your DD. I'd fill in the Ages & Stages for 50 months and take that with you and ask her to score it. You can score it yourself if you prefer, there will be score sheets in the internet somewhere. If you do prefer to score it yourself and it does throw up some concerns, you might want to miss out the HV altogether and ask your GO to refer her to a Paediatrician for assessment.

Thank you for your response. She had an SLT assessment a few weeks ago who said she has subtle ASD traits but it wasn’t enough to refer her for an assessment although I don’t think I gave them the full picture as I wasn’t prepared for some of the questions. It was only after the appointment I thought I should have said this and that so I began to compile a list of possible traits and have came up with about 20 possible traits ranging from social problems with peers to repetitive play, aversion to loud noises and frequent echolalia. She is also a fussy eater. DD sees a paediatrician yearly for a review due to low birth weight so I will be speaking at length to her paed about this at her review next week and hoping for a referral.

Has your DD’s schoolwork been affected? My DD’s preschool teacher thinks she might need a 1 on 1 assistant for next year as she seeks out adult support a lot in the preschool but the educational psychologist said there wasn’t enough evidence to assess her. I feel like because she’s not displaying obvious ASD traits then no one wants to refer her for assessment however in my area the waiting list is around 4 years long anyway and she needs support for starting school put into place now so may have to look into private assessments.

Ages and stages also do a social & emotional questionnaire which is useful.

Have t got much time to respond now but if she's a fussy eater definitely read up on ARFID before the appointment. I think there's a thread running on it currently on the Eating Disorders section

Hi all, quick update. My DD had her review with her paediatrician today, I laid out all my concerns re: DD and ASD, paed listened and agreed that it sounds most likely she has ASD. She actually sits on the panel of assessors for our trust and has said she can fast track DD to the ADOS assessment as she is already her patient and she has her history. I said I understand she can’t diagnose her in 30 mins but on the information I’ve given her does she think ASD is likely and she said she thinks it is the most likely outcome as DD exhibits strong traits according to the list I have compiled. I am devastated and relieved at the same time, a mish mash of emotions.

Can anyone tell me their experience of the ADOS assessment?

Nothing helpful to say but I'm at literally the same stage and had a similar conversation with our paediatrician and your comment of being relieved and devastated resonated. I am questioning is she isn't she constantly and wish this was a quicker process. All the best on your quest for answers and support.