sam5886 Report post Posted March 7, 2007 Went to have meeting with Pead today:( DS has severe speech and language delay - severe behavioural difficulties - basically a severe development delay blah blah and a list of autistic traits as long as your arm. BUT he has relatively good eye contact and doesn't tiptoe and does not tick all the boxes for your stereotypical classic autistic child - and she will therefore NOT give him a diagnosis of autistic. BUT she has agreed to a second opinion and has referred him to Guys. Does anyone have any experience of this or can give me an idea of what happens there.???????? Sam x Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted March 7, 2007 Hi Sam, our experience with DS2 was similar. When I first raised the possibility of autism with the OT and paediatrician (he'd been in the system for a while because of illness at birth and then sensory integration dysfunction was diagnosed), they politely laughed. He's far too smiley and socially oriented and his eye contact is too good, they said. But because everyone that dealt with him had a few concerns - speech and language (who kept discharging him!), nursery school, the OT and us parents - the paed agreed that perhaps autism might be a possibly and thought it would be appropriate to send him to Guy's, mainly I think because they had really good OT connections and that was felt to be a big issue. Anyway, after a wait of several months, we went to Guy's and within 3 hours of assessment, observation and history taking, they 'got' him straight away and diagnosed ASD. BUT they did warn us that he has a very thin social veneer, which in my view he hides behind - if you like, his smile is his biggest defence against the world. He was diagnosed at 4 and he's 7 now and, to be frank, that social veneer is beginning to crack because, as a strategy, it doesn't work for him any more. We're on the verge of moving him out of mainstream and into a special school of some sort, but still most people who meet him are totally fooled by the social veneer and his ability to learn stock phrases that are socially appropriate but which mean nothing to him. Our experience of Guy's was great. DS2 sat with us and a group of professionals for a little while for discussion, then he went off with the speech and language therapist for testing and observation etc - I think the OT did some stuff, too - and we had a lengthy interview with the doctor. Then there was a break while they all got together to discuss the case, while we waited with DS2. They came back and explained the diagnosis, and 3 hours later we were on our way back home. I was most impressed by the way they understood DS2 and could see beyond the smiles and eye contact. They explained things really well. Another speech and language specialist later visited us at home to clarify some issues and give advice; I really wish we could have seen more of her, because that's when any input at home ceased! Hope that helps. Lizzie x Quote Share this post Link to post Share on other sites
sam5886 Report post Posted March 7, 2007 Lizzy, thanks so much for your reply - makes me feel slightly more confident about the whole scenario. I have an older DS who has a dx of Aspergers - even though he didn't tick all the boxes - so I don't know why it should be such a problem with DS2. DS2 is 10 times worse than DS1 and I am really beginning to lose my hold on the whole situation. Sam x Quote Share this post Link to post Share on other sites
zaman Report post Posted March 8, 2007 We had our second opinion there as well, and I couldn't fault it. The 'tests' were done in the way that BuzztLixxy has said, and the feedback and explainations given to me were understandable and thorough. PM me if you want to know any more. Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted March 8, 2007 I have an older DS who has a dx of Aspergers - even though he didn't tick all the boxes - so I don't know why it should be such a problem with DS2. DS2 is 10 times worse than DS1 and I am really beginning to lose my hold on the whole situation. Snap! In fact, we realised what was going on with DS1 because of what was going on with DS2, if you see what I mean. I really wanted DS1 to be referred to Guy's too, but instead he went to a more local clinic - who did a really bad job. They eventually confirmed Aspergers, but it took a while because he didn't tick all the boxes either. Is your older DS very bright? Mine is and he uses his cognitive skills (ie his high intellect) to work out things that come naturally to everyone else, so he's able to 'mask' a lot of his difficulties. When is your appt at Guy's? It's hard to have to wait, but they really know their stuff. You could ring and ask if you could be considered if there are any cancellations that'd bring your appt forward? Developing a relationship with the secretary/admin is always a good ploy, in my book! Hang on in there, Sam. You're doing the right thing. Lizzie <'> <'> Quote Share this post Link to post Share on other sites
sam5886 Report post Posted March 8, 2007 Lizzie DS1 is very intelligent - but his intelligence shows in his ability with the PC, numbers, letters etc. He is not very good socially, either being unsociable OR totally over the top. He never quite gets it right - but doesn't really appear to be bothered by it at the moment (but then he is only 6). He behaviour has always been quite good - ie. the passive one. He had speech albeit a little disordered but can get by - he also has dyspraxia which slightly affects his gross and fine motor abilities. DS2 on the other hand has minimal speech and language - he bites, spits, head butts, growls and screams at everything and anything. It appears that he is soooooo angry and frustrated at the whole world. He has some extreme behaviours like licking and sniffing everything (including my brother's dog's rear and the pavement) he watches the world from under a chair - tries to bite everyone that comes into my house and loves vibration. He even dislocated his elbow last week whilst throwing himself on the floor in a tantrum and trying to smash his head on the floor. He did say 'hurt' a couple of times - but apart from that, tried to carry on as normal and only got more and more frustrated that he couldn't get his arm to work He barely even noticed when the doctor at A&E put it back in. He has huge sensory issues with smell, touch and taste (his diet consists of chilli crisps, xtra strong mints etc). Has started poo smearing and removing his clothes whilst saying 'ouch' at every opportunity. On the other hand, he is very very loving to me - loves his baby sister and can sit with me for hours watching DVD's - can climb and run like the wind and is a wonderful little boy (WHEN HE ISN'T SCREAMING). The Pead said that for a 3 year old, his S&L is at 18mths, his concentration span is minimal BUT they say that his social development is normal FOR AN 18 MONTH OLD???!!!!!!!!!!!!!!! I said BUT he is 3 years old - how can his social development be right if it is at 18 months old - but they said that S&L directs the age at which they assess him :(......... surely that can't be right. I suppose it is just all getting too much at the moment. My Dr is trying to put in on drugs - my hubby is fed up with me coz I'm not happy and smiling all the time and my mum (who is my main support) is suffering from huge stress over it all and I am very worried that she is gonna say she can't deal with it any more. And to finish it all off I went into school today to speak to DS1's teacher about his IEP and promptly blubbed all over her LOL The perfect end to a couple of 'perfect' days. NOT Apologies that this turned into a rant but I really really need to get some of this off my chest. Sam x Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted March 8, 2007 It really does sound to me like you need a second opinion and it's great that your paed has suggested referral to Guy's to get that second opinion. Perhaps this is not your paed's speciality, perhaps she has little experience in ASD, or perhaps she's worried about diagnosing too many people because, after all, once the diagnoses are made then the next thing is to provide the services... I don't really know about the s&L angle - it seems frustrating that they're prepared to accept so little from a 3-yr-old. Just as well you're gettng that second opinion! sorry to hear about your mum and your DH; it seems tough that you have to bear the brunt. do you have access to support groups in your area? Talking to other parents who have similar experiences really helps - and of course, we're here to 'talk', too! Take care. Lizzie x Quote Share this post Link to post Share on other sites
sam5886 Report post Posted March 8, 2007 Thanks Lizzie He already has supposed S&L input!!! but she is about as much use as the proverbial chocolate teapot. BUT he does have a LEA Key Worker and Specialist Teacher. PLUS the Senco at his pre-school is absolutely fantastic. I help support other mums with their statements etc at our school (not specifically ASD) but you know how it is - easy to support other people but can't always get your head round your own pile of poo. LOL Sam x Quote Share this post Link to post Share on other sites
