Fed up with getting no answers

[Chundle]

Had report from our Portage assessment yesterday and it's the most anyone's ever told me about dd2! It said she has sensory issues (which I knew), social interaction problems and social communication difficulties all of which she said are 'concerning'! We attend CDC weekly and no one there will ever commit to saying anything. Had psychologist visit today from CDC and she recorded me and dd playing together and said we will watch tape together next time , I mentioned what portage wrote about social communication difficulties and asked if it meant she has problems communicating with people and pysch said yes and left it at that.
We have paed app in 4 weeks so I need some advice of some good questions to ask him please? If something is wrong or not or they suspect something I'd rather know now so I can get her the help she needs. I get the feeling they are holding out as she is still young (21 months). I know the CDC are still expecting her to attend there after the summer which means they won't be discharging her so that arouses my suspicions. No one seems upfront these days

Sensory Issues + Social Interaction Problems + Social communication Difficulties

Sounds a lot like ASD doesn't it......

Yes it does! But of course you can't get acces to anything specific unless you have a diagnosis. I wouldn't mind so much if the profs said this is what we think but due to her age we can't say for sure. I'd be happy with that but they haven't suggested anything!

I'm not sure there's much you can access with a dx either.

I think you need to start acting as if you do have an ASD dx and see where that leads you.

Is there any treatments / therapies / diets you would try?
Any local support groups you could join?

A dx will make you feel better. But you don't need to do nothing while you wait for it....

I've been reading up on biomed oodjamaflip stuff going to do some more reading. Her digestive system is rubbish and has awful poo sorry tmi so may try gluten free see if it helps.

Often they don't want to say ASD in case you are not prepared to hear it - or will only say it at official diagnosis meeting - I know ridiculous. We just said straight out we think its ASD and then we found all the professionals said oh yes I think you are probably right. Its like they are terrified of saying the 'A' word before you do.

I think Agnes is right, it's almost like when doctors can never say cancer. It's like the poor old parents can't take it, when, actually, we just want to know. We asked our paed when she said it was too soon to DX, what she thought it could be, and she was honest enough with us to say ASD. We were shocked, because that hadn't dawned upon us at that point, but once we read up DS ticked loads of boxes. If you ask, like we did, "could you tell us what it might be," then add, "we won't hold you to it, but we think it could be ASD," then perhaps you might get an honest answer.

I also asked if DS could have ASD. The paed said that she thought he was so we are now awaiting the multi-disciplinary assessment. I don't think that she would have said otherwise but would have just sent us for the assessment.

Great thanks Ellen and Ben the portage report has been sent to paed and we go in June so I will ask hhis opinion then

EllenJaneisnotmyname

If you ask, like we did, "could you tell us what it might be," then add, "we won't hold you to it, but we think it could be ASD," then perhaps you might get an honest answer.

I think this will be the best way forward, the problem researchers have had trying to understand the causes issues on the Autistic Spectrum, are due in part the the nature of the problems themselves, when trying to investigate the issues with autistic volunteer respondents, and willing to participate in research experiments and trials. The researchers are having to develop neuroimaging technologies to help them work around these barriers to enable them to understand the neurological issues that cause the observed behaviours which define the various components that make up a diagnosis of ASD.
The researchers are better able to identify the neurological issues at the High Functioning end of the Spectrum, which can overlap with other clinically diagnosed disabilities and disorders.
This means that all need to be more informed about the range of possible issues, and the existing range of recognised issues which already make up the Spectrum.