Mother in Need

My son never saw a peadiatrician for his AS, nor has he ever been seen by SALT. The ed psych was eventually called in by the school, but only after his diagnoses (which was done by the psychiatrist). My son does see a peadiatrician because he is diabetic, but this pead has nothing to do with his AS. It is weird that there are so many different ways in which our children get diagnosed, and that none of them are flexible.

Nellie, none of those groups are within a 70 mile (or so) radius, unfortunately. HH, was your SS assessment in the county before you moved (ie mine?) Phasmid, I know I did take part in the carer's asessment, though I have had the feeling all along that they treat the two assessments as one and the same thing. Could someone clarify how the two are supposed to be different, and give examples of different types of help following such assessments please? I am glad to hear it is not just me that thinks that this 'report' is wrong, and yes Nellie, that idea of an advocate sounds brilliant, but who and from where I somehow need to find out.. I'll give NAS a ring on Monday (if I can get my son to school that is...) Does anyone know how the legal side of these assessment stands, i.e. once done do they have to do something to help? Do they have to follow their own suggestions? Can they just simply not ever get back to me (as they've been doing so far..)? As the thing is not dated nor signed nor named nor an office mentioned, is it actually a legal assessment? Etc etc??? Thanks for your help and advice everyone!!!!

Nellie, I was never asked to sign the forms, they were just given to me as 'this is the assessment'. The carer's assessment supposedly has been done, but it was never shown to me. In that link you gave me it clearly states that any help should be clearly quantified etc, but none of that has been done (those ifs and maybe's).

I have finally received the 'core assessment' from social services. Apart from many inaccuracies in it, I still also have not received the carers assessment. My requests for these have been made continually since May 2005. Now that I have finally got the first, I am terribly disappointed. The assessment is totally lacking of any professionalism, it is not written on letter headed paper, it does not have a date, it does not state who wrote it nor is it signed in the end, it does not state which office has been responsible for doing the assessment, nor who to contact. The 'recommended care plan' is just that, a few recommendations that have no basis of fact, i.e. "community care social worker has suggested a community care assistant provision to spend time with D up to 4 hours a week to ease some level of difficulties mentioned above.............the provision of the above if made available would need to involve the CCA building up a relationship with D" . Words are highlighted by myself. That's really as far as the care plan goes, with suggestions but no actions. It is now a month later by the way, and I have not heard anthing more from them. Is this all there is to this? They come around for a few times, then think they know it all (arrogant sods they are too) write an unprofessional non-traceable report, and then leave again, and that is it? Surely it can't be? Surely there should be more to this and some help should now be forthcoming?

Bothered, welcome to the forum and I hope you wil get as much out of it as I have. Your story is so sad, and as Nellie already said, I too recognise so many details in there that we have gone through as well. I don't have any advice really, just wanted to say hello and i hope you get the help you so desperately need. From what I have heard, IPSEA is a very good organisation to contact. You mention that your GP is not supportive either, I had this problem as well and changed GPs which made a huge difference.

Same for me, this forum has been invaluable to me and my sons, I have learned more from here in the last few months than anywhere else or from anyone else (and that focourse includes the so-called professionals) and I am more than happy to contribute!

My AS son of 12 is constantly asking for hugs and kisses, cuddles and 'fleeces with love sewn into it'. He will try to do the same to his brothers who absolutely hate this and can't get far enough away from him. He will also hold my hand most of the time, and needs constant reassurance that all is fine. I guess he feels incredibly insecure and by being reassured that we all still love him he feels a little better. He does not do this with anyone else, he won't let his (estranged)father anywhere near, and a general good friend of the family whom he has known for over a year now, still Cannot physically touch him.

My As son of 12 is constantly taking his aggression out on his brothers, mostly his yougest brother of 8 has to bear the brunt, and thtis can get very aggressive and dangereous (he was being strangled this morning). Needless to say I cannot leave them alone at any given time, and have to constantly intervene and keep them apart. It is exhausting! He will have a go at his eldest brother of 15 as well, but being over 6 foot tall helps to defend him even though he has been held at knife point..... My only solution is to keep them all apart as much as possible but on my AS son's good days try to do things together so we're still a family and to 'bond'. And yes, I too am a single parent and it is hard work being run ragged all the time... I took the kids to the cinema today,w ith a game of bowling after. AS son was constantly and loudly proclaiming he was bored and the movie was horrible and then refused to join in with the bowling having turned into his '3 year old todler mode'. This ofcourse ruined it somewhat for everyone, and kept me running ragged as he 'needed' me constantly, I was trying to play and give my eldest some attention (and a challenge to beat me ofcourse) whereas it was the first game ever for my youngest inw hich he did not use the ballt hrowing device butpurely his good own hands. He did incredible but only saw himself behind in pints ans was so frustrated at the end that he threw a big tantrum all the way too and in the car. I had the lovely job of guiding my ASD youngster and stopping him from walking out in front of moving cars, while containing m y somewhat hyper and very upset youngest and getting him to the car safe too... Then my eldest decided to help and got led on a chase, which ended with him banging his head hard on a sharp surface. Does this kind of happenings ring bells?

Hi Tensing, my AS son of 12 is also diabetic, and though as yet he does not have to have injections during school time (with which he could not cope by himself), when he joined the school over a year ago he was given a special place where to check his blood sugars and for the staff to check up on him. This place has become a safe haven, as he can not cope being with all the other youngsters anyway. I am looking into buying him an insulin pump, though very expensive (DLA to the part-rescue only) this will make the whole cycle of injections, fingerpricks, food-intake, exercise levels ect so much easier to regulate. And ofcourse, this means that he can have an injection at school as all I need to do is pre-set the pump and it'll be done automatically! Your daughter sounds much more independent than my son, in that she seems to be able to manage her own diabetes quite well, which my son cannot do at all.

My 12 year old son with AS so far has not had any problems with asking for independence, but then, his emotional age is only between 3 and 7, and he can see on a dialy basis that his 8 year old brother is more capable than him. And yes, he is such a vulnarable member of society, and not capable of keeppig himself safe on the streets, dosn't know his own phone number and can get very aggressive and hence non-approachable.It'll be a long time till I dare leave him on his own.

Oh yes, I know how you feel, I wish Christmas didn't exist, it is driving my AS son mad from tension and stress and he is driving us all absolutely up the wall. As for going out, forget it, I haven't had a night to myself for years. It is amazing really, I am surrounded by my three sons whom I love to bits, and yet this is a very lonely time for me, and one that we could all do without.

Thanks Phasmid, don't have time to look now, but will as soon as I can!!!! I do have the feeling I ahve looked through most of that before, and that I actually ahve some in print (pretty insubstantial stuff) but now that I know what I am looking for, I'll give it a good whirl!!!

Oh Phasmid, you couldn't find me the same information from the Cornwall site, could you? I've spent hours on it and haven't found anything really useful yet... mind you, that was before I heard of these criteria, I didn't know they had them. I thought they were suposed to look at each child as an individual, and then meet their needs via thier assessements? (I know, I'm an innocent, I'll keep dreaming of a better world...)

Lucas, why do you say that, I've got 50 or so right here? They only cost a penny each (so heavily subsidised by the NAS) and they have others on different aspects of autism.

Oh yes, we've been ignored for over 6 months, despite letters from professionals like psychiatrist etc.

O gosh yes, they never seem to stop...taunting, teasing, doing what they (should) know upsets him, simply not giving in a teensy bit to make things sooo much easier. If you find a way to stop all that, please let me know! I think though, that they are all asking for attention in their own ways, as usually all my attention goes to the AS one they miss out so much and then bad feelings get around and they just can't see why he should be treated so differently.. UNDERSTANDING is undoubtedly the anwer, but they don't want to understand, they want their mum instead...

My AS son can get very violent, though so far hasn't seriously hurt anyone. But yes, I can see it is possible. I can almost imagine this young accused man playing with the younger girl and then go into meltdown and she just happened to be there maybe? I also know that my son rarely remembers afterwards what happened and he will strongly deny that he has done something, becuase to him he hasn't done it as he can't remember it. Aspie reasoning. The accused needs help in my opinion, and however horrible thing he has done, his AS IS a reason for it, and he needs help and understnading of his condition. which is not an illness but a neurological problem.

D needs his own Learning Support Assistant (LSA or TA):? D must receive 1:1 support in all lessons. ? Ideally this should be given by two different LSAs ; 2 so that if one is off sick or not available Dwill still feel safe and secure with the other, having built up a relationship with both there will be continuity of care and as little change as possible. ? D should not be attached to more than two LSAs, as this confuses him and takes away his feelings of security. Others also would not have understanding of D's complex needs that is needed to care for D. ? D also needs help during lunch and break times (while in the LSU he should have the support of his LSA) and while moving around the school from class to class. ? The LSAs working directly with D must have specific AS training. ? He needs an LSA who has a basic training in diabetes management and who can keep an eye out on him at all times and in whom he has total confidence and feels safe and secure. ? Daniel does not take well to change whether these are small changes or big ones. Some samples of changes he finds difficult are: changing clothes, clean bedding, changing from weekend to school routine, from holiday time to term time, change of the location of an item in his medical kit, a sudden change of teacher or LSA (hence he needs two, so if one is not available there is another he is familiar with and who is familiar with him), changing from a normal school day to going on a special outing, changing of the seating arrangement in a class room etc. As you can see, most of these changes are pretty unavoidable and D needs help to be prepared for these changes and he needs to be with someone with whom he feels safe and secure to be able to cope with these changes. ? As D's organizational abilities are very poor, he needs help in organizing himself, he needs help in the writing down of his homework, making sure he has everything with him that he needs for the day, and with anything else that is out of the normal routine. This should be his 1:1 LSA. He should not be punished or even threatened with punishment if any of those items are missing. ? D's sensory difficulties are not always apparent, but they become worse as his anxiety levels rise. He then become over sensitive to sound levels, light levels and temperature. He gets extremely upset if sprayed with water. He can become oversensitive to pain, and even a small brush can become a painful experience for him. On the other hand, he often does not have full control over his own physical actions. He may think that he is just brushing your eye, but in fact it ends up rather blue; he may think he is only just touching someone?s leg, but it ends up bruised. He thinks he is only giving you a gentle punch on the shoulder, when it really feels like a full blown attack. This obviously quickly leads to a misunderstanding on the part of the receiver of these ?touches?, and D then becomes vulnerable to retorts and being attacked. His LSA needs to quickly spot these moments and make everyone understand that what really happened was non-intentional. ? D can get confused very easily. Especially if he is given two instructions within a short space of time, or a more complex instruction. When D is confused, he often just shuts down and nothing one says or does can take him out if it. To avoid this, he needs his 1:1 LSA to check that he has understood the instruction, and if necessary break down the instructions into smaller steps, to be worked on one by one. ? One of the problems for children with Asperger?s Syndrome is that of communication. D appears to be a good-communicator, speaking loads and on a much higher level than other children of his age. HOWEVER, D's communication skills are actually really poor. He rarely reacts to what another person says, and even when they say 10x ?no, I don?t want you to tell me? he will still tell it to them, several times over. D does not understand non-literal use of language, like jokes, sarcasm, teasing or metaphors. D may talk about a lot of things on an extremely high level, but one of D's problems is that he cannot apply his knowledge. He also finds it very hard to transfer strategies that he has learned into another situation. D cannot understand subtle language nor non-direct language. I.e. when saying ?D you talk too much? he is more likely to reply ?yes I know? than to understand that you?ve just told him to be quiet. He also is not good at understanding non-verbal communication, and will not recognize it when someone is getting angry or upset or whatever. His LSA may need to translate subtle language and non-verbal signs to him. ? D should also be given speech and language therapy to help him with these issues. ? D can often not recognize his own feelings and has little awareness of the feelings of others. D lives in a world of his own, on which other people only touch but do not take much part in. His awareness of others is often very limited and he would usually prefer to be left alone so he can get on with whatever it is he is doing. His LSA needs to make him aware when his actions are affecting other people, and teach him appropriate methods of dealing with situations as they arise. ? D communicates much better with adults and feels safer with them. He is very gullible and could go with any stranger once they?ve had a little chat with him. His personal safety is therefore at risk and he cannot be left alone by himself. ? D does not feel he wants to be different from the other children and will not tell the teacher when he has a problem but will become anxious and stressed; therefore he needs his LSA to support him when he needs this. ? He needs individualized help in understanding the hidden rules and also that other children do not think the way he does. Smoking is bad and hence he won?t do it. But he cannot understand that others would. ? He can also not imagine how other people could feel, or what they might have done, or what they might be interested in, or how they might react to something that has happened to them. I.e. he will not ask if someone had a good holiday, a nice birthday etc. This makes it difficult for him to hold a conversation that is not one-sided. D needs guidance as to how to communicate with other people and how to have a conversation without people feeling trapped and wanting to run away?his LSA should give pointers as opportunities arise. ? D needs teachers that he can relate to and don?t frighten him; where this is not possible D must have access to someone he feels safe and secure with to help him develop social skills and an understanding and ability to express his emotions appropriately ? his LSA. ? D's LSAs and all those closely involved in his daily school life should get to know D well so that they pick up on the small signs that may lead to melt downs or shutdowns, and also to his bloodsugars becoming too low or too high. ? D's LSAs have to be able to do a blood test should D's sugar levels seem to become too low, and to be able to take the necessary actions when he becomes hypoglycaemic.

Well done again, Hectorshouse!

Good letter, keep us updated!

I think many of the situations that our NT youngsters and AS youngsters encounter, are the same. BUT it is the way that they react to them that is often not the same. Give them a hot chocoloate; My NT eldest will gratefully drink it, my AS middle one will grumble and complain it is hot, to the point of meltdown, and my ADHD youngest will keep running all over the place till it has cooled down. Same cause, different reactions. Also, the strength of the reactions can be different, I find that my AS son will react at least 3x stronger to a situation than my NT kids do. Ouch, I banged my elbow, says the eldest. Mum, mum, I've hurt myself, says the youngest and bounces away again after a kiss and a cuddle. My middle one however throws a tantrum and is decidedly out of sink for a few hours more. And yes, my AS son still reacts llike a 3 year old - though he is 12.

I had mixed feelings as well, about lots of it. All the actors were very good, no doubt about that, but the actual drama seemed to focus more on special occasions and not daily life. The struggle in getting them all ready for school, the problems in school, shopping with all the kids (how come she could do that by herself, and how come she could go out alone, did she really leave the older girls in charge, and ws that safe?). You know, all the daily problems, meltdowns, fights between the kids, trying to cook with al of them needing attention all the time, how could the autistic ones cope with the madnesss and noise of the ADHD one, homework, health and doctors appointments, getting (of trying to get) them to do whatever has to be done, or going somewhere and all the tantrums and preparations there, and all that daily stuff. And gosh yes, I would have called the police very soon after discovering my son had disappeared from the shopping centre....just think what could have happened to him on the way back home...and he only found home by chance (getting on the right bus, that lady knowing his area and paying for him etc)... I also feel that this one guy seemed to solve a lot of problems...the extra help is great, but not enough for everything to become so much easier.. Many of you say Christopher was extreme, but though he is very different to my AS son, I'd say he was very mild. Mum's emotions were shown very well, crying on the stairs, and so obviously finding it hard, I could certainly identify with that one very much.

I know of a little girl (well, not so little anymore, she's 12 now) who has great difficulties with maths. She is NT and bright, but maths is a total nightmare for her, she just cannot do it. There is a name for it, I can't remember it, but it is like dyslexia, just not with reading etc but with anything to do with maths. She also has no idea of time, no idea whether it is morning or evening, hour of the day, season of the year etc. Sums, times tables, forget it all, however hard she tries, she just can't...

School says my son receives 16 hours of TA support a week. BUT to my son this means NONE as they are all differerent subject TAs, none of whom know my son (nor anything about AS/ASD) and my son doens't know them and doesn't feel safe with them. This is not working and he has become very difficult to manage and school phobic also. Another child (and his family!) for whom Y8 is a disaster... The psychiatric day unit he is currently attending is adamant he needs 1-2-1 and won't let him back in to school till this is in place. They say he needs it and hence he will get it (with their intervention ofcourse, I have asked for 1 1/2 years already...). So yes it is possible and no, subject TA's DO NOT work. As for the matter of becoming too dependent on a TA, that is NT thinking (and might be a valid point with some other disabilities) but has nothing to do with the real needs of our ASD children. Our kids need the help and safety of one or two TAs only!

Definitely a statement. He is NOT achieving his potential, he is under a LOT of stress, teacher can change from one day to the next (illness, accident) if not by next year, he needs special help for his handwriting (and changing into PE clothes and PE itself, and and and everything to do with his dyspraxia), he may seem to cope now but isn't (RED ALERT for 95% of the time); his brightness is covering up for a lot of his difficulties but this will not always work. My son was missed out, he has only just been diagnosed (is now 12) and has never had any help, he is extremely bright etc, and he is totally NOT coping anymore. Don't put your son through this, but get him help now!