Just back from panel meeting and no dx - what now?

[skidd]

DS1 is 4.5 and we have had concerns for a while now (links below for background):

here

here

and here

Just had the panel meeting following a 5-day assessment and they said he has sensory processing difficulties and although the psych thought he had ASD, he scored low on the ADOS and just missed 2/3 cut offs on the ADI (over cut off for restricted behaviours) so he isn't getting a dx. They said they can't say whether he will get a dx in the future (obviously) so we are still in limbo....

He starts school in September - it's going to be so stressful for him and now probably with no support - although the OT has made some recommendations which is good. I thought this MDA would give us some answers but actually things are no clearer than they were 18 months ago - what on earth do I do now??

what were the cut off figs? do you know or do you have to wait a report.

I have my ADI cutt off figs here if it helps :)

You do have one dx and that is of sensory processing difficulties to start with. The OT can go into school prior to him starting to help the school alter the environment to best suit his needs and provide training on a sensory diet if needed. Do you know what his sensory issues are? Maybe I can help

Hi coff, thank you.

His scores on ADI were something like 4, 5 and 1 and cut offs were 3, 8, and 4 (ish, have to wait for the report)

In the ADOS he only scored 1 so nowhere near

Yes you're right I guess the sensory stuff is a diagnosis. I'm not completely clear what sensory issues he has, rather the behaviours he displays: obsessive rituals regarding breakfast, toileting and bath time. Very little social interaction with peers - the OT thinks a lot of this can be explained by sensory stuff which I suppose makes sense - it's just that his behaviours seem very ASD-ish... maybe I just need time to process this new possible explanation for his difficulties as I was sure they were down to ASD

Also remember he is still young and only starting school September. Gather all the information together and whatever reports you received and keep them in a file handy. Keep a diary from day one of school along with your ususal diary at home of any concerns, outcomes or possible reasons for it and how you acted on it.

When he starts he is going to experience a whole new set of life and interaction and social issues. As he gets older his differences may become more apparent. If you see difficulties and are not happy you are entitled to request a second opinion :)

Yes good idea, thanks. I was keeping a diary but stopped when we were told he was having an MDA. Will start again tomorrow

Tell the OT that you would like to complete a sensory profile questionaire if you havent already done so. That will give you a guide. Then the OT can give him a proper assessment, go into school for them to complete a sensory questionaire (a bit further down the line of his first year) and a parental sensory questionaire which is more indepth and the basis of a final report.

If you cant go back to these people, wait till you get their report and go back via your GP expressing about his SPD and it needs more looking at.

Sorry this is in bits having a chase ds around the house day today LOL

definitely ask (push) for sensory profiling to be done

DD has dx ASD but this alone means nothing wrt to support and input (IME - some areas may be different)

it's her sensory profiling and SALT assessment that have OTs recommendations attached, this is what schools can read and use to indicate levels and areas where support will be useful

Thanks coff, have just had a look at an online checklist and I think he is hypersensitive to movement and hyposensitive to noise - is this possible??
I have the OT's email so I will contact her about a questionnaire. Am also going to buy 'The Out of Sync Child' as I don't know much about SPD

Thank you for your advice, in bits is fine - just grateful for anything anyone can tell me!

this is an example if it helps of ds ADI interview and ADOS

He was dx with Aspergers (also co morbid ADHD, SPD, SCD, tourettes)

ADI

Qualiative impairments in Reciprocal Social Interaction score 18 cut off (10)
Qualiative Abnormalities in Communication (verbal) score 18 cut off (8)
Qualiative Abnormalities in Communication (non verbal) no score cut off (7)
Restricted, Repetitive and Stereotyped Patterns of Behaviour score 10 cut off (3)
Abnormality of Developement before 36 months score 2 cut off (1)

ADOS

Qualiative Impairmentss in Reciprocal Social Interaction Score 8 (autism cut off 6) (autism spectrum cut off = 4)

Communication Score 2 (autism cut off 3) (autism spectrum cut off =2)

Communication & Social Score 10 (autism cut off 10) (autism spectrum cut off =7)

Imagination & Creativity Score 0

Stereotyped and Restricted Score 1 (yet he was high in the ADI so it can vary)

Bear in mind this was done when he was 2 months short of 7 years old which is why I am saying give it a bit longer and go back if you need to :)

Meant to add prior to school and social pressure nothing was recognised due to 1 to 1 anyhow in nursery so it was similar to home suroundings.

Thanks, that is really helpful - my DS did module 2 of the ADOS - did yours do Module 3? The scores look quite different but I might be remembering it wrong...

Oh yes they also did an IQ test and he did really well on verbal tasks (equivalent to age 6ish) but really poorly on nonverbal (equivalent to age 3ish) - she said he was within normal range - though equivalent to age 3 when you're 4.5 doesn't sounds great to me...

You are right - I just need to see how he gets on over the next year or so but it is really hard being in limbo!

Yes it was module 3 skidd sorry! didnt know there was a 2!! oops!

Blimey Skidd, your situation is almost identical to my own. Same dx, same ASD traits. I'll add some more after tea...just marking my place.

No worries coff, Module 3 is for children with fluent language, Module 2 for children who speak in phrases so i think my DS should have done Module 3 really but I reckon because he is young they chose Module 2?

DCsunhill - oooh really interested to hear about your DS and your thoughts on his dx (or lack of!)

One more thing - I wonder if anyone knows about this - is that they were interested in his 'sandal toe gap' which (yes I googled!) is often a marker of Down's Syndrome or another genetic disorder. I have sometime wondered if he has an extra X chromosome because from the little I know about it, these children can sometimes present with autistic traits, sometimes with mild learning difficulties but often their difficulties are so mild that they go unoticed (I know this from a study which tested a whole cohort of children and found that at least 50% of children with an extra chromosome were not diagnosed with anything) and parents had no concerns