Ds1(7) , AS (ish), given diagnosis. Then diagnosis is basically, withdrawn.

[Oblomov]

Ds1, bright, minor issues, assessed twice by a Paed and a Clinical Pychologist. Both said Theory of mind = severe. And empathy = severe. But when doing AS teat, not enough boxes ticked to give diagnosis.no surprsie, because even I wasn't sure.

So CAMHS does DISCO assessment.
She says in her ASD Assessemnt report :

"DISCO, fullfils diagnosis of childhood autism.
But school , and our vist (they visited and watched him for 15 mins in classroom, then 15 minutes in playground, and he played very nicely, with 2 of his friends), = at odds with this finding. so now I must speak to dh"

"Mum can't rememeber some development questions. so maybe stress ? maybe mum had attachement problem, due to her health, plus child is rigid, so this could explain it."

I'm like, "you what".
You do the test, he gets enough to warrant diagnosis. But school disagree. Then our own 30 minute observation, makes our question this.

So now we are basically questioning mums judgemment. maybe it is actually
attachment and bad parenting after all.

Dh has made an appointment to see her.

I had a sob. No one beleives me. Its not as though I would make it all up.

((hugs)) oblomov

thesis, thank you. laughing at your name.
But is it really worth it ? what am I fighting for ?
Sometimes I question myself. Maybe he is more normal than I realise. And I am making a mountain out of a molehill.

No one believes me anyway. How would going to someone new help ?

Thanks Corny. I sobbed on your shoulder at the christmas party. And here i am again, doing so. I seem to spend alot of time sobbing, (I sob once a month over all this shit) over the draining journey that I seem to be on. maybe I need to get off the ride, for a bit
You know what I mean !!

They watched him for under an hour, in a very familiar setting, and he played contentedly with familiar people? And they think that rules out ASD? Words fail me.

To quote my BIL at Christmas:
'Watching this lot [DS1 and his cousins], you'd flag DS1 as the only normal one of the bunch. The other buggers are completely feral!'

DS1 has a full-time statement and a place in an ASD unit, but I know just what he meant.

She met him yesterday for the first time. for 30 mintes. she had already written her diagnosis report. she only met him becasue I insisted. I said any diagnosis without meeting the child, was nigh on meaningless.
They only went into the school, her junior colleague, becasue I insisted.

Did you know thta I can get you a diagnosis, without you even seeing the doctor, these days. or so it seems. beggars belief.

You would think professionals would know by now that some kids can appear totally NT at times! It really angers me! The head of CDC walked into our group one day and said rather rudely "not sure why she's here" and pointed to my dd. Meaning she thought my dd was totally fine. With that dd scuttled over and started sniffing her legs and wouldn't stop sniffing her for the whole 20 mins she was in room! People need to look a little further than the end of their nose!
And as for attachment issues I can see why your pissed off! We know our kids best remember. I even asked dds pyschologist if she thought there were issues or if she thought I was imagining things and she said there were definate problems. Sometimes professionals make you doubt yourself - don't let them

I know what you mean tto Lancelottie.

This is really rubbish.

I think now is the right time to look for a private dx. To stop you doubting yourself, and so that you can get the right provision for your son.

I never had attachment problem when he was born. I bf him and loved him. It was when he was about 4, that all my parenting techniques had failed me, and I was worn down by him, exasperated, that my love for him waivered a bit.
She has no evidence that there was attachment problems. the reaon why she has no evidence, is becasue there was none. My dh and my mum say there were not attachemnt problems.
Chundle, I respected her. But her insistance that there is no As'ish behaviour becasue, well, becasue school say so. has questioned my view.
Many people have said to me,t hat schools often can't see AS. Plus he is not full on As. Just a bit. I know this.

How do you get a private diagnosis in London. DS has deteriorated at his new school and I'm being sent back to see the same professionals who saw him first time round - lost all faith in my local PCT basically as we've spent 3 years chasing our tails.

I went private indigo. Private Clinical pyschologist, said he was severe, in certain areas, theory of mind and empathy,so severe he was off the richter scale, but didn't tick enough of the boxes, to give diagnosis.
She wrote to school saying, he " needed to be treated as an AS child". They ignored. Have doen nothing. she said, maybe they don't aknowledge private assessment. ask for CAMHS she said. so I did.
This is where I am now.

I have BUPA from work. They paid for all his private assessements. Up to a limit. then it ran out. so I took her advice and requested CAMHS. And got it.

just to reasure you Oblomov when my DS was 2 we (my DH and I) knew there was something wrong and i spent 4 years trying to tell them and was fobbed off and blamed as you are now, I did what you said I got off the rollercoaster ride for a few years because I wasnt getting a DX or any help whatsoever and was at the end of my tether... hes 11 now had a dx and is moderate ASD and Dyspraxic so much time wasted hes now in a SS as was doing so badly in MS and got so far behind in every way and bullied , so dont give up I so wish I haddnt but I had to stop for a while due to sanity because if they can make you believe its you they will , if they can save a few grand in money they will, dont let them get away with it were here for you your not in the wrong and all you wants whats best and right for your DC.

As the mum of an 8 year old Aspie, I feel for you and feel angry for you. I kind of thought this sort of crap was coming our way with the completely useless consultant psychologist in charge of DS's case -really she was useless beyond words. So I asked to swap to someone else.

You can ask for a second opinion on the NHS and go to a specialist tertiary centre like Gt Ormond St or the Maudsley (and there's one other). You can ask them to refer because you are not satisfied with the failure to diagnose and you think your son's problems are subtle and require expert assessment.

You don't have a right to this, but you shouldn't be refused as a matter of good practice.

These specialist teams at specialist centres are experts and will completely understand that high functioning children are able to adapt and cope with accomodation and when feeling comfortable (or when getting the world the way they want it!) but this doesn't mean the core deficits in functioning aren't there.

Please don't doubt yourself. Get a referral to someone who knows what they are talking about. How dare this woman raise attachment issues without any evidence. What a disgrace!

sorry you are being given the runaround re:DX, fiduciary suggestion re:tertiary centre is very good I think.

I have a Paed. saw him last sept. due see this sept.
At work, will post more later. Many thnaks everyone.

Oblomov

The problem here is the system, and the real lack of professional understanding of the issues involved.
There is no independent body which provides a specific series or battery of tests to determine the very wide range of clinical issues which can cause the observed tickboxes used for many of these labeling processes. I am not trying to minimise the problems you are facing but questioning the whole diagnostic process and whether the professionals really have full understanding of the issues of the issues they claim to be able to make a judgement on.

If for the sake of discussion you consider Invisible Disabilities to be an onion, the the top layer represents the observable issues such as dyslexia, and the issues on the Autistic Specttum and many others. A couple of layers down you will have the sensory, motor, and attention disorders, such as Scotopic Senstivity Syndrome, Auditory Processing Disorder, Developmental Coordination Disorder (dyspraxia) ADHD, and many more. And the layers below that are the neuron end neurological electrical activity, or lack of it, which can cause all of the above issues, and many more.
Scientific research is still at the cutting edge of developing the technology, and the resulting understanding of these complex issues, and are still trying to understand the layers below the observable top layers. Which means that those who claim to understand these issues using the best available information need to be well informed with regard all scientific advances, which can happen at a vary rapid rate, as has happened in recent years.
So the real question is are our local diagnostic professionals able to provide a really informed diagnosis or are they working to some preset Local Authority model.

Oblomov this is ridiculous, don't let them make you start to doubt yourself

The first thing that struck me in your OP was the Theory of mind - severe and empathy - severe. I was wondering whether it could be NLD rather than ASD if he isn't ticking enough boxes for ASD. The assessment team were leaning to NLD for my ds right up until they did the ADOS with him. He appears highly social at first glance and has some friends, even a best friend - all of whom are NT. He had been seen by two EPs and observed by three member of the ASD inclusion team prior to the ADOS assessment and they were sure there was something going on and definite that his non-verbal skills were very poor, but no-one could make a call on which way to dx without carrying out the ADOS. We were all shocked at how badly he performed during the ADOS assessment, including the EP that had been working with him for a few months beforehand.

His final dx report says Asperger's Syndrome/ASD, but is qualified by the final section, which stresses that his presentation is atypical and as his non-verbal skills are so poor in comparison to his verbal skills teaching staff, parents and professionals should look into/reasearch NLD and its treatment/handling in order to be able to effectively support him.

Children with NLD can superficially present as having AS, but do not 'tick all the boxes' any professional worth their salt should be checking both possible dxs.

((hugs))

I wasn't sure from your post, but has your DS had an ADOS?
Looking at it from the clinicians point of view - assuming that a DISCO is a parental interview, rather than a child assessment (not sure about this as we did the Autism Diagnostic Interview rather than DISCO), any person can come in and 'make up' AS symptoms in an interview, so they have to be able to observe the symptoms for themselves. If he was playing nicely with friends it could quite feasibly be awkward for them to see any AS behaviour. If they weren't doing group work at the time, then they wouldn't be able to observe how your DS responds to other children wanting to do something different to him etc. I know that when DS is observed in class the first thing that any professional has noticed is that every other member of the class will at least make eye contact with them and smile at them once, DS makes every effort to not notice them! Anyhow, I digress slightly.
However, when DS was being assessed, it was explained to me very early on that it is very unusual to get a dx with just the questionnaire and the school observation visit, unless your DS is fairly severe and very typical AS. DS fell into these categories, the only reason he ended up having an ADOS is that a 'significant event' occured to him when he was very young and they needed to be absolutely sure that this hadn't impacted in some way creating the problems rather than it being autism. His ADOS scores just confirmed what the professionals already knew.
So certainly here, if the ADI gave indication of autism, even if it wasn't observed in the school visit, the child would then have an ADOS test, to be more certain. What would happen if the child then passed the ADOS I don't know. So, when your DH meets them, IMO, he should be pushing for an ADOS test.
The fact that your DS has some obvious issues that have been picked up by a paed and psych shows that even if the end result isn't AS there is obviously an issue that needs dx-ing in some way.

Much sympathy. It is trully horrible getting a dx. We had the opposite problem to you - clinical psych said DS's problems were minor and didn't warrant an AS dx but the review meeting gave him an AS dx anyway (clinical psych wasn't there, just her underlings). I think he has DCD/dyspraxia which obviously overlaps greatly with AS.

FWIW you may find, if your DS's problems are mild like my DS that his issues get greater as he gets older. At 7 my DS had friends he played with - now at 10 and in Yr 6 he has nobody. Ime, the difference between AS children and others get more marked as the children get older. If you could revisit things again further down the line it might make things clearer.

However, this depends on the school dealing with the child and not a label (even a missing or incorrect one). They need to be supporting your DS and helping him with his difficulties. From what you have said they don't accept anything is wrong which makes this strategy very difficult. I am forever grateful that DS's school took my word for it and were able to keep their eyes and ears open to things that might have been an issue. Whilst you are sorting out the dx, maybe that is the tack to take - getting the school to see that all is not well even if AS is not necessarily the dx.

Back home.
wave and leningrad, thanks for your posts.
Thesis, I did know that it wasn't as simple as AS/not AS. But I guess deep down I have not considered the other possibilities :
NLD
PDD-NOS
social communication disorder
and thnak you dealings , I will definitely consider your 'specialist tertiary centre' suggestion, which chaos also suggested.

And Dolfrog, thank you. I am starting to appreciate what a minefield this is. It is a bit like everyhting else, you meet crap solicitors, accountants and GP's, so why should SN proffessionals, be any different.

And thanks Moose. For your NLD suggestion. How are you with all your school woes ?

I have a meeting planned for school - head, senco, pwp. For 3 weeks time. In my dreams I was hoping to storm in there and wave a diagnosis in their faces and say, 'done nothing, what ya gonna do now'. >
CAMHS had suggested that there was 'more than enough for diagnosis', which gave me hope. Should have been more realistic. as to possibilities of being shat on per-usual. My own fault for hoping.

Bloody hell moosemama - NLD seems to be be describing my DS!! How come I haven't heard of it? I never thought AS fitted him, was never comfortable with his dx but I knew something was wrong and that everybody seemed to think I was in denial for not accepting the AS dx so I went with it. Thank you for that link. I has given me something to think about. Not sure what it will make any difference but at least there is a bit of a possibility I am not barking mad.

Sorry for the hijack Oblomov.