mamabear

Our main contact at CAHMS is Naruto's clinical psychiatrist (paediatric) - she has taken the lead role and co-ordinated his assessments and diagnosis. Nothing is being 'done' about NAruto except that we have support and ideas and were recently using a medication to help him get control of his violent temper It sounds like you may be seeing the psychologist for family support / ideas / advice etc. Which can be really helpful - we've just started seeing one again (we had one preivous to Naruto's formal diagnosis - in our situation, that was the first initiative undertaken). As far as their contact with school goes.. I have been arranging multi-agency meetings at school (via the disabled children's social worker) which the psychiatrist is invited to and attends. Our most recent crisis at school was discussed at one of those meetings.. and the psychiatrist turned up. However, all she can really do though is feedback what is going on from her perspective, talk about Naruto's actual condition and relay information such as that he is doing well at home and his problems do not stem from there. Her job is not to advise school, she is a medical doctor working for us, to advise us, etc. There are other professionals who are supposed to do that side of things (ie advise school of strategies and how to communicate with your child, and so on) - you can call a meeting like this yourself, ask school to call one, or your social worker - or at a push talk to your CAHMS person. 1. Educational psychologist (independent from Local Education Authority (LEA)- their job is to advise school of ways to try to meet the needs of disabled kids, or kids who have ASDs or any other difficulties. 2. Representatives from specialist education units can come in and give them ideas from observing our kids. They are needed to prove the school is trying everything before they evict a kid. Eg from a challenging behaviour school, or an ASD school.

My son was prescribed risperidone recently to deal with a crisis situation where he appeared to be in an ongoing meltdown which was making him ill - involving hour long violent episodes with short pauses (i've got a new scar on my chin to prove it! ). These were not only putting him and everyone else at risk, but also beginning to make him ill (eg the pauses were due to headaches because of the prolonged tension) so I felt medication was a viable short term option to cease the crisis. We found risperidone worked really quickly and N became calmer within the week.. it just took the edge off what his psychiatrist calls his 'arousal' and made it easier for him to get control of his temper. It is only intended for short term crisis use, so after six weeks we've started to wean Naruto back off the meds, now doing his final week on a quarter of a tablet. He is out of the crisis cycle and doing really well, although the situation at school is very tentative right now and he is only managing one hour per day there. Naruto is 7 and he was taking the same 5mg dose - he's half the size of your son. We did find it helped for short term crisis management. Perhaps it would work with your son if they increase the dose. I know they said they could increase for Naruto if necessary, but the 5mg was enough. mamabear

Hiya. What a shame that he doesn;t know it's possible to autistic and OK :-( Seems really illogical doesn't it. I think it comes from desperation to help our kids. People trying to help their kids will even do things which defy clear logic and common sense if someone says it will help - or - if a 'professional' (real or not) tells them they are doing it wrong and they should do it like this, or they are deliberately making their kids life worse. I tend to blame the professionals who lead them to this rubbish, not parents, who usually are just trying to do what they have been told is best for their kid. Every parent wants thngs to be as good as possible for all our kids. Parents NOT doing what professinals suggest can lead to anything from the disapproval of people with power over our kids lives, all the way to being accused of abuse. For example when my eldest was two I was told teaching her some sign language to support her spoken communication was abuse (!) Of course I just replied that *I think* it's abusive to deny a child a method of communication which could work for them - but what happens to parents who fall for this ######? Desperation. More medicalisation. more normalisation. More snake oils. We live in a country where we think the 'best' thing for disabled fetuses is to kill them off before birth 'for their own good' - working from this basis, snake oil sellers are making a mint from the 'terrible' lives of disabled people, including autistic people (I mean disabled as in the social model sense, not as in that we are personally defective in some way ;-) ) . Mamabear

oh thank you so much I will take a look at these. I just want my son to be happy and feel like I spend my entire life trying to do this so he does not get upset.. but whatever I do is never enough. I am willing to try new things until we find better ways to help him thank you so much

A few of my friends have asked why Naruto is not on any medication. He has been diagnosed with Autistic Spectrum Disorder last December and is six. He is of above average intelligence and has a high vocabulary but far lower levels of receptive understanding and interpretation and doesn;t understand the aocial context of things. When he is unhappy, which can be caused by many things, in particular not getting his own way, he is prone to violence and aggressive behaviour - such as smashing things and throwing everything he can get his hands on including furniture, using and creating weapons and attackng people in a very focussed way and so on - including teachers, nurses etc. obviously we've been working on his behavour for a very long time to try and avoid the outbursts in the first place by doing many things, including ptuting him first in our planning/strategies/activities and using distraction, etc.. His reaction/temper is, so far, more extreme than anyone else/anyone else's kid I've heard of personally. He was initially given a label of conduct Disorder and I suppose he still has that too.. though it sees to be caused by autism related self centred-ness, pickyness, preferences, communication difficulties and so on. He cannot manage in school without a full time support worker and sometimes two. If he were an adult with a severe anger problem which affects their life so badly, wouldnt they be on some kind of medication and therapy? Does anyone know of anything we ought to be doing with our son. i never thought i would ever consider medicating him, but his problems are so profound and I think it must be awful for him (as well as us) for him to be so upset so often... I would be prepared to at least consider it. Thanks for any info, thoughts or ideas anyone can share. Mamabear

Hi justine1 and thank you for replying to me with such a detailed list of strategies - wow! Yes I think there are some things here we need to work on. we gave up visual timetable for a bit as it wasn't helping because Naruto was trying to use it to control the universe ;-) I think we might not have been using it correctly anyway so need to learn more about this. I smiled when you mentioned timers - we're having trouble with the computer turn taking and the twins so timers are on today's shopping list! Briliant I am glad to hear it's helpful I wondered about it. Sadly I think we;re at the stage where we need to empty his bedroom of toys except soft toys again - we had another try after xmas and new toys arriving but it#s led to a room which looks like a bomb has hit it again. So once again there is no furniture except a bed in there :-( and I need to sort the toys so I will prioritise this in the next day or two- it's a big drain of energy to try and keep srting it. Bed smashing oh I am so sorry I laughed when I read that due to the relief on hearing another person's child has also smashed up beds!!! sorry!! I swear I've never seen anything like this in my life! Yes Naruto also had a period of no bed after breaking two beds and a third mattress in about a week and a half. I then aquired a hospital mattress from health visitor due to it being waterproof and strong and it's been a godsend. He has a bed again now although the mattress went flying again twice yesterday :-( so I am considering moving to sleeping bag from sheets and quilt etc to save me keep lifting mattress and straining putting sheet on it - if this is becoming another regular occurrence. We also need to replace his bedroom door )again) because it's so badly smashed up (also on today's to do list - is is always this never ending aghhhh!) due to us putting him there when he is uncontrollably violent or destructive to limit damage / harm. I have not really done punishment/ penalties but I think we might need to consider using the method you use as it might help. We do give him Pokemon collector's cards for going to school and 10p for following the house rules per day as best he can./ know what though I keep forgetting that one, which won;t be helping so I need to goto your point about consistency and that maybe I let some things slide.

Hi thank you so much for replying to me :-) My son was labelled with Conduct Disorder, when he was referred up for psychiatric assessment (for autism) about a year and a half ago. CD is a severe form of ODD, usually only labelled to teenagers at the stage where they start to use weapons and fire. Naruto doesn't burn things but we have had all our cutlery and knives etc locked away for a couple of years now. Nobody has ever mentioned mediation and I got the impression that it's not possible to medicate him because he has autism :/ I will ask his psychiatrist though. As long as he is happy things are fine, but Naruto seems to really struggle to not be OTT aggression wise when he is unhappy. And unhappiness happens a lot due to not understanding / communication difficulties / being very temperamental due to the autism. :-( mamabear

It has been a fight for us also since my son was 2-3 and his behavioural problems began to emerge. We finally got a diagnosis of ASD in December but people like his schoolteachers are still having trouble understanding he has acces needs not that he is nasty. they have been blaming his behaviour on me for ages and can;t seem to snap out of it. this is despite Naruto being a twin and his twin sister in same class is exemplary, they seem to think I must have by miracle managed to parent them differently! I feel like things should get easier now he has a diagnosis but things are a long way from settled yet while we work out how to meet his access nmeeds and how to stop his violence and destruction. my son is in manstream with an IEP and a full time support assistant, but he continues to remain at risk of being parmanently excluded. it is very important to me that he stays in mainstream though :-( mamabear

Hi - I use direct payments myself to employ a personal assistant (due to physical health problems) and for me it's definitely been the best use of care hours. For my autistic son, I have finally got 3 hours per week through social services but they pay a service provider. Previously they have told me you can;t get direct payments for kids but I believe this is not true. I am going to ask again soon as the problem may have been that my son didn;t have any regular supoprt hours like he does now. I would buy the service I am using in anyway, but I'd rather have more control over it and the option to change that if I wish. mamabear

I think ours took a few months as it wasn't just the ADOS test which was needed for diagnosis of Naruto's ASD, but also a speech and language assessment which took two visits. Naruto has previously has an ADOS test with a private psychologist and she said he was not autistic (!) thank goodness for the NHS keeping it's eye on expertise, as my son's autism is obvious from a mile away and has been since he was one. Mamabear

Greetings one and all. Another new member here just introducing myself and saying yikes! Parent of autistic kid, Naruto, age six, who was diagnosed just a couple of months ago (long suspected) with ASD and above average intelligence. He also is anxious. Naruto was previously labelled with Conduct Disorder due to severe behavioural problems and high levels of violence and destructiveness. I am 37 and have 4 kids. I am probably on the spectrum myself too - I also have physical health problems which is causing some level of impairment clashes between us as I am weaker and have less stamina than a more typical parent my age. I am finding it really hard living in a locked up smashed up home. I'm here in particular to read up on and ask questions about your joint wealth of experience in raising autistic kids and get tips on parent survival skills :-). Probably have some tips to share too. So as well as saying hello I also wanted to say thanks in advance for the info - the stuff you have already shared here from which I am sure I will benefit and also in advance for future info. :-) I am looking in particular for information and ideas around managing violence and destruction which for us has been the main problem living with our wonderful child with autism. he is a very clever and loving little boy but when he is unhappy in any way, the world has to watch out! He has already had a school exclusion for punching and kicking teachers, for example. I just haven't got the fitness I need to clear up after him. I also can;t restrain him easily and that's one of the topics I want to ask people about. One of my autistic friends recommended this forum as a good place to come to chat and share support and so on, because I'm struggling with managing the levels of violence and destruction we live with. I am sick of living in a smashed up home and trying to protect my children and myself from my son :-( I am back at that stage of saying 'I can't cope with this any more' although of course, I do continue to cope day to day ;-) as I have to! I am sick of surviving.. I want to be a great parent and feel like I am failing. We have had support from CAHMs since Naruto was 3 and a psychologist helping us work out strategies but it's not enough. Sometimes I feel like proffessionals are great at telling us how not to deal with melt downs, but have no advice about what to do when the meltdown happens. I know we need to avoid the melt downs before they occur, but it seems impossible to get any info to support me to deal with this if that hasn;t happened, or didn't work. If anyone can point me to any particularly useful existing threads that would be a big help and perhaps mean I am less repetitive as surely this is a topic which has arisen before. Thanks mamabear PS I ned to stay anon due to domestic violence issues, so for the purposes of this membership, Naruto is not my son's real name ;-) my name is not mamabear either ;-) :-D