medication

Hi everyone
I am having to look at medication for my 15 year old autistic son due to his violent and uncontrollable behaviour I would be interested to know if any of you have experience of medications and if you could give me any feedback about what medication you are using and how you are finding them.
thanks sue

We used to use respiridol(respiridone)..excuse poor spelling. I hatedusing it or any form of medication but had no choice but to do so for his health and saftey and ours. Be aware that it is primarily and anti psycotic. My sons use of it was not just confind to his form of autism but he is bipolar too.

Hi Linda
Thanks for that did your son suffer from any side effects from his medication and did it help with his behaviour?
sue

This is a very potent drug and the max you can give someone is 3 mil(or used to be then...it might have changed) The most I used was 1 and that was on a very very bad week which would make him slighly disorientated and tired but it was, out of those weeks only used at that strength top twice.He could still go to school on it and function quite well. On the regular amount 0.5 kept him stable. Finally we could reach him long enough to teach him. The NAS helped and we were given a befriender, without whom I would have gone insane a long time ago. Just to remind, my son does not have classical autism he is ASD aspergers very high end many complex difficulties. It took a crises for some one to do something practical other than critisize my parenting....but that's a whole nuther story.

Hi Linda
Thanks for sharing that with me it is a very hard decision to make to have to medicate your son and believe me it has taken me a long time before I would even consider it but his behaviour when he has a meltdown is so out of control and when he starts to recover from his meltdown he then tries to harm himself I can't stand by and not do anything as he is a danger to himself and my other children. I have looked into a befriender for him but unfortunately there are none in this area I think he would benefit from this especially in the holidays as he finds the different routine very stressful.
If there is any subject you would like to discuss feel free to post one
sue

Hi my son is also on respiridol, and agree that it is a very hard decission to take as to medicate or not. When my son went on this medication after a few weeks and adjustment of his dose it changed both his and our lifes.

There are many side effects of this medication and he will require regular check ups to ensure all is well. My son as been on this for over a year now and as suffered no side effects apart from an increase in appetite, but no weight gain.

Make sure you start your son on the lowest possible dose we started on 0.25mg and ended up om 0.50mg once a day.

Hope this helps

Chris

Hi Chris
Thanks for your posting it is reassuring to know that other people are using medication with success. At the moment it is like living with a time bomb not knowing when he is going to go off. My son has so many anxieties that overload him and its upsetting to see him not coping with life the amount of stress this is causing us is too much for anyone to have to deal with on a day to day basis and even making a fuss we are still having to wait weeks before we can get an appointment for anyone to do anything why do things have to be at crisis point before anyone will listen?
keep posting
sue

I'm fortunate in that my son used to be violent and have tantrums as a child, but thankfully now age 19 he is a gentle giant although he does get depressed and frustrated and suffers from panic attacks under stress, he doesn't take medication. I don't know whether his change came about thanks to his special school or that I always tried my utmost to avoid confrontation and keep things as routine and calm as possible, but I'm grateful that he is such a sweetie.

However, my friend's son who is a similar age to mine, has aspergers, attended mainstream school (from where he was often suspended for fighting), is violent and verbally abusive to his family and self-harms. My friend is frustrated by failed attempts to get her son help from adult mental health services. Therefore, if you are experiencing problems now, it might be worth getting a diagnosis and help set in place prior to adulthood, because once autistic children become adults, there is very little in the way of support from social services unless their IQ is 70 or less or you choose to go down the mental health route to support. My friend chose the latter and was told that there was a waiting list to get on the waiting list for mental health support. Sadly, I suspect that it would take something like her son breaking the law or attempting suicide to bring his treatment forward.

Gwen

Hi Gwen
I had problems getting my 17 year old son into the mental health service as apparently there is no service from the age of 16-18 luckily they decided to assess him using the child service but it amazed me that they said officially there is no-one looking after that age.

My 15 year old has a diagnosis of autism but still I have to battle for everything the mental health service in our area is rubbish even his schooling is in such a mess because no-one wants to take responsibility for the schooling he should be receiving it has been agreed that he needs a special school but the education are still refusing to find him one due to lack of funding and then I found out last week a child was put in a special school with a diagnosis of autism but the school are saying that he hasn't got autism. Its shocking and very frustrating.
Anyway keep posting
sue

Hi Sue

Originally in my son's Statement of Special Education Needs, the LEA only said that my son 'displayed autistic tendencies' and 'needed a higher level of support than usual', which was vague and like saying 'how long is a piece of string'. My hubby and I had to battle the LEA for months before finally resorting to an independent diagnosis via an NHS specialist of 'profoundly autistic', which we forced LEA to acknowledge and include this his Statement of SEN and this, along with our threatened legal action after he was injured in mainstream by other students whilst he was unsupervised, forced their hand to place him in a special school. We had to go through a similar heated and upsetting battle which culminated in our returning to the specialist for another report in order to prevent the LEA placing him in secondary main stream schooling. Similarly, we had a battle to obtain speech therapy that ran over several years, as the LEA said it was the Health Authority's duty to fund, but the Health Authority said that as our son's school was under the auspices of another Health Authority, it was up to the LEA. We never did get that one resolved, despite getting our MP involved (most likely because she wasn't interested in helping us).

It’s ridiculous that the IQ test autistic adults have to sit is a bog standard one that cannot possibly account for areas where they might excel and other areas where they fall so low they are at rock bottom or below. When my son sat his IQ, the psychologist stated in her report that my son’s score was ‘misleading’ but all the Social Services see is that he averaged out at 94, which is well above the magic 70 number and therefore doesn’t require support. Now the Govt. cut-backs will mean that Mental Health and Social Services will be even more hard stretched and it will most likely take a shockingly sad incident and a long and drawn out report before ‘something will be done’ to help autistic youngsters and adults.

Gwen

Hi Gwen
Thanks for the posting

Why do the LEA make everything so hard? I involved the local MP but she was no help I also complained about the LEA and was told that I could appeal with my statement which I hadn't even received then so that was a waste of time and now I am waiting for the LEA to send me another statement that has been amended before I can appeal again as I was advised by parent partnership to withdraw from the last appeal and now have been advised by a different parent partnership officer to appeal again to get a place in a special school for my son. I am so fed up of conflicting advice.

sue