Well assessment over!

[runikka]

Hi there

Little Daniel had his assessment today and it seems our fears have been "unofficially" confirmed. The doctor said that there were signs that directed her to Daniel being on the autistic spectrum and promptly passed us a leaflet on autism and portage before saying she couldn't be definite (pretty certain she was). Anyway, Daniel is apparently about a year behind in his speech development and has some delay in his play skills that we were unaware of.

I feel somewhat calm and looking forward to the portage sessions commencing...any step that can help him along. Daniel has to go back in three months for re-assessment. On the positive side the doctor said he was a mixed bag as obviously possessed a sense of humour/cheekiness and had one or two good communication aspects (knowing cause and effect).

I obviously have been doing further reading now and it has pretty much confirmed things for me (though there is always the "please just be late developing hope"). My latest worry is the link to schizophrenia. Does anyone know anything about this ie: shared symptoms, experience of anyone suffering etc. My paternal aunt has schizophrenia which is the main reason for my panic.

Best Wishes
Kirsty

Message withdrawn

Runikka - your experience (and your reactions) sound so very similar to ours a year ago. I would echo what Tobysmum has said - once you get the services in place you'll start to see progress. DS2 has also benefitted hugely from a good 1:1 at nursery, from Early Years support, Speech Therapy (though we had to go private ), dietary/nutritional interventions and home based programmes (initially from BIBIC and currently from Growing Minds - ABA/VB based). Like Tobysmum's DS, ours still has a long way to go, but the progress is happening.

Sense of humour is great!

Runikka

Great to hear that your concerns are being taken seriously but from my own experience I'd exercise a little caution until you have an oficial diagnosis.

My 8 yo DS was dx'd AS in July this year after over three years in the system. Our first request for an assessment when he was in Reception was ignored and he was finally assessed while in Y1/2. The paediatrician coordinating his assessment told us informally that she was '99% certain' J was autistic, the subsequent ADOS scored him highly even though he was marked very strictly. Like yourselves, we were advised to contact the NAS, read books on autism, treat him as if he was autistic etc - no other outcome was considered at that time.

However... come the end of the assessment and we came away with nothing. We were told he didn't fulfil all the criteria and we were advised to go away for yet another year and see if things developed. We pushed for a second opinion assessment with a local expert and got the dx this year - if we hadn't we'd still be twiddling our thumbs and have no explanation for J's complex difficulties.

I'm saying all this because we were led to believe that a dx for J was imminent and without question. We informed J's school but when the provisional/verbal dx was rescinded we were the ones who were made to look foolish - it had to be our mistake, not the professionals (of course). It made us look unreliable and 'paranoid parents' who'd misread what we'd been told by the psychiatrists.

I realise we have been very unlucky in our experiences with the professionals but I also know how distressing that emotional rollercoaster can be to live with, so please keep a sense of caution and be prepared for an inconclusive outcome to the full assessment.

Sorry, I don't want to burst your bubble but I wish I'd been prepared for the worst during J's assessment.

Many thanks for your replies. At the moment, I am uncertain how I feel about receiving absolute diagnosis. On one hand it may open doors for us to get further support in helping Daniel but on the other, he is still very young and I appreciate that many assessments are required to get an accurate diagnosis. Our main priority is getting all the help we can and we are at least on waiting lists for Portage and to see a SALT.

I have spoken to his nursery ( he attends twice a week) about having portage sessions and the overview of the assessment. We decided not to mention that being on the autistic spectrum had been mentioned as, although the paed suggested it she also backtracked quite a bit and said it was just one of many possibilities.

This week has been a bit disheartening as Daniel has had a high temp and all the progress he appeared to be making is not evident at the moment. I know this is understandable but when he is ill he gets over the physical symptoms reasonably quickly but the emotional fall out takes weeks sometimes.

Regards
Kirsty

I can't help with info about schizophrenia but I'm glad you're on the way to getting some help for Daniel. Portage has been a life-saver for us.

I hope Daniel feels better soon. xx

runikka, I know where you are coming from on the schizophrenia concern. I have a cousin the same age as me and, looking back on how she was as a child, I am 100% sure she's on the autistic spectrum. Sadly, she also developed schizophrenia as a teenager although this was not dx'd or treated for years. She has led a dreadful life herself and made the lives of those around her an absolute misery. It is one of the things I worry about most for my ASD ds's (you may remember that I have one who has a dx of HFA and one who is currently being assessed).

However, I would urge you not to panic - it is simply pointless to look into the future like that - there is so much that you (and I!) can do for our DSs in teh meantime. And it's pounds to pennies that your aunt didn't get any care early on either - like my cousin. You and I are not going to leave our DSs in that state, of course, so they have a massive advantage straight away.

Please do stay in touch, your DS is about the same age as my DS3, I think - so we can try and support each other through the assessments etc.

sending you my very best wishes