Lack of ASD diagnosis - where to go from here

[VyneVibes]

Having gotten no where with the NHS route we went through private assessment for our 4 year old daughter for ASD. The initial screening gave a mixed review, but we decided to go ahead with an ADOS assessment to see how she would react in a new setting. The report has just come back and she scored as autisic in the parent screening and the ADOS (score of 13) but did not score highly enough in the feedback nursery gave (actually just under the cut off point on the SRS score) nor the clinician observation.

Does anyone have any advice as to where we go from here. Do I ask them to review their decision, do we wait until she starts school and wait for new problems to arise?

I feel let down by the process, our daughter masks her behaviour at nursery to some extent so they never bear witness to the worst of her struggles. The clinician observation was max 2 minutes on a zoom call which unfortunately I had prepared her for and she'd scripted herself a conversation and came across as quite sociable (not normal for her!). The lady who completed her ADOS seemed to think her ASD presentation was quite clear.

We'd really appreciate any advice - we are feeling very deflated at the moment.

I would go back to them and ask them to relook at their decision. A good assessment should be well aware of masking.

In the meantime, support such as support at nursery and school is based on needs, not diagnosis, so not having a diagnosis shouldn’t prevent DD receiving support. As soon as you know what school DD will be attending speak to their SENCO.