LizK Report post Posted June 29, 2005 I am mum to two boys. My eldest son is 3yrs 8mths. His main difficulties are speech delay, social anxiety and impulsivity plus a few obsessions and routines for good measure. We have been advised not to push for a formal diagnosis yet as things may alter as he gets older or if his speech catches up but it is likely he'll be on the autistic spectrum/have AS. This site looks a great source of information and support . I've lots of things I want to ask about though that will have to wait as am currently doing battle with his DLA form Liz x Quote Share this post Link to post Share on other sites
oracle Report post Posted June 29, 2005 (edited) Hello Liz Welcome - this is a great place. Do you mind if I ask why you are being advised not to push for a dx yet? I ask because you may be one of the few parents who can manage to obtain the support that your child will require from a school without a dx - but most parents have found that it's a battle with a dx and almost impossible without it. It is true that his speech may catch up, my sons did, but he's still on the sprectrum. Our consultant still to this day states on Matthew's assessments that' A dx of High Functioning Autism would best fit the specific needs of Matthew at the moment' She does that so that she can change her mind if she has to and that is OK with me because children do change. Matthew is now 8 and has had his dx since he was 3 years old. Of course there may be good reasons why they asking you to wait. But the autism exemplar does not mention anywhere that parents should be asked to wait. Carole Edited June 29, 2005 by carole Quote Share this post Link to post Share on other sites
LizK Report post Posted June 29, 2005 Hi Carole Because of his age really. We've been told by several health care professionals that he may possibly mature out of some of his difficulties with time and improved speech. Not sure how much of his social anxiety is due to ASD per se or secondary to having difficulties communicating for example. Also because he does some 'non-autistic' things. He loves playing with other children in familiar environments, can be socially engaging and a little charmer when comfortable, although he has a few routines and obsessions they don't seem to be as encompassing and affect his life as badly as they do with other children with autism. There's also part of me I guess that doesn't want him 'labelled' yet either. I've noticed people sometimes treat him differently when I saw he's autistic though half the time it's easier to describe him as that rather than go through the what' ifs ands or buts! Idealistically I want his problems rather than a 'diagnosis' addressed iyswim. My gut feeling is that he is on the spectrum, just has some traits more stronger than others. I agree absolutely about having a diagnosis would help access services. There's an Early Bird (??) service here for preschoolers but I think you need a formal ASD diagnosis to access it. Schools here are supposed to decide provision based upon a child's needs rather than diagnosis but I'm learning that unfortunately that is not the case. Adam will definitely need additional help at school but under the new LEA rules won't qualify for statementing and be on school action plus whatever that is! Still getting my head around all this, what a minefield. Liz x Quote Share this post Link to post Share on other sites
oracle Report post Posted June 29, 2005 (edited) If you are happy to wait then that is fine. You should not need a label, they are for jam jars anyway, but sadly they are sometimes needed as a sign post to services. Can I also say that the LEA may be feeding you a load os tosh. I wish I had a penny for every parent who had been told that their child could not have a Statement. If the needs are there then they can. But again they do not come easy and especially not without a dx. But they are given without a dx. The BIG difference between a Statement and School Action Plus is - A Statement is a legally binding document and any provision specified MUST be given. School Action Plus is not legally binding and there is also no assessment ofthe child's needs. So it beggers the question of how can they meet the needs of the child without an assessment? In our Authority you can only access Early Bird with a dx or while an assessment for a dx is being done. Again that is pretty silly because Early Bird is for early intervention and the older a child becomes the harder it is to intervene. You need to be in there from the start. My son is a very social little butterfly but some of his social interactions can be inappropriate. Some people do look at our children differently once they know they have a dx. It is sad but true, although many can be very supportive. And you can always come and sound off here and that makes you feel better. Carole Edited June 29, 2005 by carole Quote Share this post Link to post Share on other sites
Elanor Report post Posted June 29, 2005 Hello Liz, I'm glad you found the forum, it's a great help to all of us. I think that Carole has given you great advice, and I'm also a bit concerned at the idea of you being told to wait before getting a diagnosis. I hear about this kind of 'advice' from time to time on this forum - and it usually seems to be coupled with a discomfort with 'non-autistic' behaviours. I'm very suspicious of it - it is vague and unhelpful. Autistic Spectrum Disorders can be diagnosed in a 3 year old - even if he has some atypical behaviours - an expert in autism wouldn't have a problem with this. Sometimes speech therapists, educational psychologists, health visitors, GPs come out with these vague statements - but that can be because they lack the skills to diagnose ASDs. Have you been referred to a CAMHS (see Jargon Buster above)? You could ask for a referral to a child psychiatrist - ideally one specialising in autism. You might find yourself in a waiting list of many months, even years - so you might as well get the ball rolling, you could also cancel later if you wanted to. Elanor Quote Share this post Link to post Share on other sites
Tylers-mum Report post Posted June 29, 2005 Hi Liz. Just wanted to say Welcome to our little family. I have a 6yr old son and in the process of assessing him for HFA/AS. Carole said it all!! (she's the brains here!!) LOL Quote Share this post Link to post Share on other sites
LizK Report post Posted June 29, 2005 Can I also say that the LEA may be feeding you a load os tosh. I wish I had a penny for every parent who had been told that their child could not have a Statement. If the needs are there then they can. But again they do not come easy and especially not without a dx............... My son is a very social little butterfly but some of his social interactions can be inappropriate. Carole LOL! I can well believe it. I don't know much about the statementing procedure so may have got it wrong but the LEA here has made changes meaning you only can get a statement if your child needs more than 25+hours a of help a week and I don't think Adam will need that. Supposed to be in the child's best interests blah blah but can't believe it's anything other than a money saving exercise. They statement very few children locally now. From what you've said about School Action Plus and what I've picked up locally SEN provision at school is patchy and very dependent upon the school. Have heard worrying stories about SEN money not being ringfenced and spent on other areas Interesting about your son. Some people think I'm mad when I tell them Adam may have ASD as he can be very sociable at first glance . It's only knowing him better that you see he can be inappropriate or overfamiliar and doesn't seem to be able to moderate himself. Thanks for the info Carole. Wish I'd found this website 6 months ago ! Liz x Quote Share this post Link to post Share on other sites
LizK Report post Posted June 29, 2005 Thanks Elanor. We're under a paediatrician with a particular interest in ASD in young children. I think he has previously seen children like Adam who have turned out not to have ASD in the future so is reluctant to label him yet though has stated that Adam's symptoms currently fit in well with ASD. The other confusing issue is that Adam's speech delay is more 'autistic' and out of proportion to his other AS features and as yet we're not sure if he has a primary speech problem as well as milder AS traits. I'm happy with how things are currently and in all honesty not sure whether I'm still in some form of denial and hanging onto the hope he may mature out of some of his problem. Hope it's still ok for me to post here even if the diagnosis isn't yet formalised! However as we are dealing with the preschool and school issues as well as browsing some of the info here I am becoming increasingly aware of how having a diagnosis seems to hurry things along and makes a difficult job slightly easier Liz Quote Share this post Link to post Share on other sites
Zemanski Report post Posted June 29, 2005 The LEA you are under is probably acting illegally if it is restricting statements to children who need a specific amount of support all authorities are trying to restrict statements - ours is currently boasting that they have reduced from 400 to 100 this year! you have a legal right to request assessment for a statement of SEN regardless of any restrictions placed by the LEA you also have the right to go to tribunal if the LEA refuse and the tribunal will look at the child's needs and dismiss LEA restrictions if they are not in line with the code of practice which this particular one does not appear to be. it is your call not theirs! my son does not fit the criteria even for SA+ as he is too able academically and his presentation of AS behaviours is too erratic to qualify on other grounds The LEA backed down when we produced his doctor as a witness (they tried to disregard his diagnosis because it was late evidence even though they knew it was coming) Com now has full time support with lunch and break cover too. every child on the autistic spectrum has a different presentation. Pre-school Com was just an extremely bright, unusual little boy. He got on well with adults and older kids and would interact almost normally one to one with peers. Even in nursery the only obvious thing was that he didn't join group or physical activities and as they never tried to make him do so he was perfectly happy and we had no problems. The problems started in Y1 and it became clear that they were not going to go away by Y2. It took till the end of Y4 to get diagnosis and support because he didn't meet criteria and he masked his problems right up till Y3 in school - he still does but they have now realised that he can not function at all without the support he has in school because as soon as they reduce it they get major problems! The older he gets the more obvious his AS becomes - his ability to keep up with social development only lasted till about the age of 5 and socially and emotionally he is still pretty much around Y1/2 level. If he didn't have a statement he would definitely not be able to be in school. The thing about the 'triad of impairments' model that psychologists usually use in diagnosing ASDs is that because they all present so differently a person with an ASD can be 'almost normal' in one or even two areas and still be autistic - don't be fooled into thinking any one of these bits might go away, they will change over time and the placement on the triangle might change but if a person has an ASD then he or she is normally there for good. I don't mean to sound like I'm wishing AS or autism on your son but you do need to know that it is pretty unlikely that if he has autistic features now he will grow out of them and that even if he does he will stand a much better chance of catching up and achieving his potential if he gets support now rather than waiting till his needs are more obvious. A friend of mine was told her son had an ASD at 3 and was told he might change or grow out of it so she should wait before asking for a statement but I advised her to get help anyway. She managed to get a statement pre-school and he had excellent support through KS1. He is now 13 and no longer has a statement, he is in top sets in school and taking some exams early. He is sporty and social, no longer has all consuming passions to the exclusion of all else. It's pretty clear to me that he wasn't really on the spectrum in the first place but had some elements to his behaviour that appeared to be ASD related (quite a lot of them actually) but his mum assures me that getting help early is the reason he managed to overcome the problems he had in his early years. I suppose what I'm saying is even if it does turn out your son doesn't have an ASD it's worth acting and getting support for him if you can. good luck Zemanski Quote Share this post Link to post Share on other sites
Hectorshouse Report post Posted June 30, 2005 Can't add anymore Carole and Z know their stuff, except to add that a dx can be a protection for your child, without it they can become inappropriately dealt with or considered EBD children, or worse still it can be deflected back to you as poor parenting. It doesn't change the child you love, but it give those who work with them a clear picture of their needs (ideally that is, and hopefully if the pre-school/school have a working knowledge of ASD). Good luck anyway, and welcome aboard, you are in very good company. HHxx Quote Share this post Link to post Share on other sites
LizK Report post Posted June 30, 2005 The LEA you are under is probably acting illegally if it is restricting statements to children who need a specific amount of support Hadn't thought of the legalities of restrciting statementing, good point. Interesting hearing about your son too. Depends on the circumstance but Adam doesn't fit always fit the typical social stereoptype for ASD though he's not 'right' socially but it's hard to get people to listen sometimes-tlaking about lay people here more than anything else. The number of times it's been implied I'm a neurotic mum worrying about ASD because at first glance he doesn't fit into people's preconceived ideas about autism Anyway I digress! Adam definitely has special needs but we were hoping he'd get additional help based upon his needs until his diagnosis becomes more apparent whether it be ASD, a primary speech problem or DAMP. I know a couple of parents of children with speech problems (via the www) who were misdiagnosed as ASD when in fact the autistic traits were seondary to their communication delay which improved as the child got older and speech imprioved. This is another reason why we've not pushed for a diagnosis. My feeling though is that Adam does have ASD as he still exhibits social difficulties, imagination not improved despite improvements in his language. My H and I are happy with how things are though from reading this thread and others do wonder if we are being naive thinking he will get help based on his needs rather than diagnosis especially once we are in the school system. Been thought provoking and something to discuss when we see the paediatrician next month Thanks for your reply, was really useful Liz x Quote Share this post Link to post Share on other sites
LizK Report post Posted June 30, 2005 Thanks for the welcome Tylers mum and HH Know I'm going to be asking a lot of questions here! Liz x Quote Share this post Link to post Share on other sites