Trayo

Emma received her full diagnosis of Asperger's in July, and the paediatrician has sent her report in to school. Despite this they are doing nothing to help her. She only started in September and even the basic things, such as visual timetables, are still not in place. The big classroom timetable is on the wall and they say this is enough; however, they change the order in which things take place which is causing Em a lot of stress I have asked school services to get involved and they say they will do so over the next 6-8 weeks. Sometimes it feel like bangin your head against a brick wall (incidentally, despie the paed stating that homework would be detrimental to Emma, the school still set it. On the first occasion we tried to do it to see how we got on, but she got very stressed and overloaded and ended up banging her head repeatedly on the bannister until she couldn't see straight. So, as far as HW goes, we just ignore it! Our biggest issue is the echolalia, which has worsened dramatically since she strated school. I cope with it, but my H and other daughter do not, and they end up getting cross. Sometimes I can see E is doing it to wind L up. I know it is deliberate from the way she does it and the smirk on her face; when she does it without realising, she acts in such a different manner to the deliberate winding up. Is there anything I can do to help with this? kids at school are already telling her off for doing it to them in class and she's geting to the stage where she won't talk in class because she gets confused when she's told to shut up with the echolalia and can't see why she is allowed to talk in discussions. These inconsistencies are there all the time in her class and it is winding me up, let alone her. We don't see the paed again until February but I'd appreciate any advice in the meantime! On the plus side, DLA were vert fast in sorting our claim, the Trust has agreed to fund a Maclaren Major so we can go places without her getting stressed by the amount of people around her (she feels secure in the pushchair but is too big now) and we finally have her more or less dry at night (provided I help to resettle her once she's awake). I still feel like I am wading in treacle, but it isn't quite as bewildering as it was initially. It's odd, but having an actual diagnosis has made me more positive in learning to handle it all. Shame her dad is stil in major denial though.

Munti, This is why I was pleased that our paediatrician said she considered it to be a bigger picture rather than a solo diagnosis. The information she gave me was telling me how to help my daughter to cope with it, but at the same time she gave me the Asperger's leaflets saying that we needed to use them together. We don't have a firm Asperger's diagnosis yet but she says it is the most likely outcome when we next go for assessment. Her argument for treating PDA as a symptom as opposed to a condition in its own right was for exactly your reasons - that so many children with possible AS will be missed, with PDA being given as a diagnosis without further investigation. My friend has a severely ASD girl and she recognises most of the PDA traits in her daughter, except for the communication side. J has very little speech and avoids eye contact, but in other ways does her very damndest to avoid following demand. It's a rocky road, isn't it? In time they may miss so many people with AS simply because they looked no further than PDA. I'm only now beginning to understand how scary this all is as a parent; I can't begin to imagine how much strength is needed as an actual sufferer. Be proud of yourself for being strong and going to work. Even as a non-AS person I would be horrified at his comments, because in effect he is giving people the right to bully you simply because you don't fight back enough. There is no excuse for bullying of any kind, whatever life someone leads (and especially in those who don't have the choice in their lives) It makes me very sad. I see preschoolers even now picking on Em because she's easily provoked and they can weedle their way around adults who don't understand Em. Hold your head high. You know you're not weak. If being strong means picking on others less so, who wants to be strong anyway?

Well, after an initial diagnosis of HFA, we went to see anothe paediatrician at the Ed Psych's request and we have now been told that Em has PDA in conjunction with Asperger's. I have a few issues with the PDA and I struggle to see her massive meltdowns as anxiety attacks, and in fact trying to treat them as such is proving impossible as she will accept no calming or communication in any form when in this state. We had to make her rom a "safe place" anyway, so we still take her there when it happens. PDA does fit her perfectly, but our paed has a problem in diagnosing it as a condition in itself; in fact, she said she considers it poor practise because some peple then stop looking for other causes of behaviour and thus mniss a bigger picture. For this reason she diagnosed PDA as a complication rather than a separate condition. We only got this diagnosis 2 weeks ago so we are still very new to it, and having just about come to terms with HFA as a probable cause it feels twice as hard being told otherwise. However, I am thrilled that we saw this paediatrician as she was incredibly thorough, vey reassuring and has offered as much help and advice as we want. Preschool alreadty work on her social problems and she has had an IEP now for some time to help socialise her better. This should now just be transferred to school in September, with us applying for a statement currently. Reading the PDA contact group, of which I am now a meber, has proved very scary indeed. I think our saving grace is the early diagnosis, as most there didn't get a diagnosis until much later. By having this already we stand a chance of it being dealt with correctly from the start. Without a doubt, this will be vital in ensuring she has a smoother transition from preschool. I am still rather overwhelmed by all the advice and information, and right now I am rather frightened of my ability to cope (or not, as is more appropriate). I have a very good friend with a severely autistic daughter of 15, and as Em shares so many of these traits (the lack of ability to communicate thankfully not being one) it fills me with dread. I struggle to physically handle her now; what will she be like in 5 years' time? Anyway, the list of signs of PDA fits her perfectly, but there is so much about Asperger's that fits also, so I am pretty happy with the dual diagnosis. I alway sstruggle to see ADHD as a proper condition, but that';s not to say I don't believe it. I have limited knowledge of it and the 2 children I do know wth it have parents who use it as an excuse. One boy (6) was kicking the hell out of someone's car parked near school and his mum stood there watching him, saying "Oh, he has ADHD, I can't help him and it isn't his fault". As she said this she was trying to bribe him away with a can of Red Bull and the promise of a computer game. Go figure... I know she is a shocking example and probably the type who causes such doubts in the condition. IU say this not to rubbish those whose children have ADHD; it obviously is a condition because certain ways of handling it work better than with just simply "naughty" children. I use this just as an example to illustrate why so many people will doubt the existence of PDA. As a condition on its own, I have doubts but can clearly see why it is included in such dianoses as Asperger's. I've probably alienated all who have to live with the effects of ADHD now. I'm not good at this! But I imagine that's how parents of kids with PDA feel at the moment, while it is still quite new to the growing list of behavioural problems. In time it will be accepted but for now there is scepticism. I think it's really important to remember that all parents of children with behavioural or social dysfunctions feel bad about the diagnosis, especially if they are themselves sceptical

Hi, some of you may know me from another parenting forum. I have joined here on resommendation after my 3 year old daughter, Emma, has been diagnosed with HFA. It was no surprise to me, but that still doesn't make it easier. The biggest challenge we face is the regular occurrence of meltdowns, even in her sleep. She is down to have an EEG and possibly a MRI in the near future, to rule out some form of seizure or absence attack, as she seems very scared and confused when she calms down. Meltdowns can be spectacular, and in one episode she left me with a broken wrist after kicking out. I am still new to this world, and we are still in the early stage of sorting out a programme to suit her. Preschool have been excellent and had her on IEPs long before we got our diagnosis, and the SALT were pleased with that route. We still have a lot to learn about this, so I shall be reading a lot of posts with interest.