ASD and severe behaviour and drugs

[Debs75]

I have a 10 year old who has an ASD and has severe behavioural difficulties.
He kick and hits at almost everything, even when he is happy.
He has nipped his sis so much over the years she is covered in scars.
Recently he has started self-harming and picks at his face and punches himself in the head.
We have been following a naughty step procedure to deal with the kicking for 2 years now and we aren't really getting anywhere. The kicking will stop for a bit and another action will take over, then something else.

A child from his nursery was almost identical and last year he started a course of drugs and he has improved. Our nurse doesn't know what drugs could be used and his consultant has discharged him for 2 years. Does anyone have any experience with using drugs to help the behaviour side. I don't want to 'zombie' my son but feel there must be something out there to help.

Hi Debs75, I am really tired tonight, but will answer your post sometime tomorrow. I have a 13yr old ds dx Aspergers Syndrome with severe behavioural problems and aggression,so know what you are going through.speak to you soon...

Debs75, are there any other professionals or autism teams involved with his behaviour at the moment apart from the nurse? It sounds very much as though he needs some specialist thoughts. I don't know of drugs that would help, but it's possible that a clinical pschiatrist dealing with autism might have a better understanding of this, or that a behavioural team can find a new way to divert his behaviours with you. No way should you be living in a situation where he's harming others or himself on a regular basis, so this is definitely an urgent situation especially as he gets older and will be able to do more damage through sheer strength.

Sounds like you could do with a very large cup of tea, at the very least.

Have you ever suspected a particular 'trigger' for any of this, or does it seem fairly random?

All behaviour is for a reason. But i know how difficult it is trying to fathom it out. And medication may mask what he is actually trying to tell you.
But in some situations they can help, so research it well.
Good luck.

Naughty step won't usually work as kids with ASD just don't care or don't get it. As our kids get older it is very much harder to work out functions of behaviour, they are more complex and often multi-functional. Also, our DS used to tantrum, do SIB etc when he was completely alone so not possible to observe, although maybe being alone was sometimes the trigger. He was able to come and find us and communicate but just didn't sometimes. As they get older I also put it down to moodiness without being able to express it. People always assumed it was because we were making him do/have something he didn't want to, or not letting him do/have something he did, it just aint that simple as they get older. We put our DS on Risperidone to help reduce his anxiety and it has been excellent. He did not become a veg or turn into a much different person but his outbursts and downright unhappiness was less and shorter. After going through all the usual parental resistance and managing/tolerating behaviour we decided to give it a go. I feel we did the best thing for HIM. It is regularly and carefully reviewed, he has been on the same dose for about 3 years although it started low and crept up. When the behaviours increased people were always willing to blame the medication, forgetting that was the reason he was taking it. Dose is dependent on weight (and need of course) so it does creep up as they grow but our DS has got to a comfortable level. We don't increase it the second he quacks so still deal with his behaviours regularly but soooo muchg less severe. He is generally so much happier and able to participate in the things he enjoys whereas he was getting to a point where he was going to have to stay at home in case he hit someone or started screaming etc. I feel we owed it to him to let him try something that could help him. Temple Grandin is a great advocate of appropriate and careful medication, saying she resisted for many years and now finds it immenseley helpful. There is some research with ASD ande Risperidone and lots of practice. Of course, there's no free lunch, it can cause increased hunger and weight gain and blood tests need to be done regularly to check liver function etc and that can be a challenge in itself.
Don't let anyone put you off for all the usual biased reasons BUT don't do it if you're not happy about it. It also means you see medical staff regularly, in our case Senior Dev Paed, and I found that very helpful too for lots of other reasons. HTH

Yup, 'time out' is a reward, not a punishment, for us. Quiet, reflective time away from the family is what we seek, so things that work as deterrents for other children often don't work for us.

hiya, my son is 3 and asd with very challenging behaviours too, as were not getting any professional help with this i have looked further at things and found www.challengingbehaviour.org.uk if you look there thats a good site and they can send you free dvds about these behaiours, i got mine th other day but not watchd them yet so cant say how good thy are etc but woth a look i think

its not a drug, but you could try redirecting that agression into something that cant actually do harm to him.

when younger my brother (now a saregent in the aiorce) was highly agressive towards me, to the point where i have fended off knife attacks from him.

eventually i started sparing with him (full contact, staff fighting, ) once he realisised he could fight me in an appropriate manner his generall agression tapered off and he sought out 'bouts' with me when he was then they tapered off as he grew up and he channeled it further into matial arts.

not sure if any of that reminicing helps but
chanelling ,ay be a better method get a punchbag a sandfilledone is best divert him to it when he starts andlet him have at it.

Electra is right about those strange and unusual phases. So you do have to sit it out and see if its a pattern of phases, general change in behaviour, regression etc. We lasted for years but had always suspected that medication was on the cards at some point. You will probably know when that point comes although you will still be filled with doubt, guilt, resistance. As usual, we have to try to forget about how somethng makes US feel and try to be as objective as possible about whether it will help our child. I know many cases where medication has been arrived at after much struggle and helped enormously, and many cases where it simply isn't the answer and many where it is but families and children continue to struggle. Like most issues we come across its not simple!

debs75,finally back and able to think straight.Our son is extremely aggressive and it is getting worse the older he gets.He is verbally and physically aggressive. He has hurt his siblings,wrecked his room,destroyed things in the house and has had to be restrained by us and at school.Like many ASD children much of his behaviour is anxiety driven, but also with our son,limit setting also produces extreme behaviour.He also has ADHD and takes medication for that. Like the above,our son is prescribed Risperidone for his aggression-he has been taking it for several years on various doses, with varying degrees of success.It can have an effect on anxiety-ie, lowering it, and that in itself can sometimes improve the situation, as less anxiety=less aggressive behaviour.It also targets the aggression itself.Our son is seen regularly by a Child and Adolescent Psychiatrist at our local CAMHS.He gets regular blood tests and his blood pressure monitored.He has never had any side effects-though we were aware it could increase hunger and weight gain,but this has not happened in our sons case. Risperidone is recommended for use in children with ASD,who are aggressive-SIGN Guidelines,(we are in Scotland), but the English equivalent is NICE Guidelines.You should ask your sons Nurse to refer him back to the Consultant, as I dont think she will be able to prescribe Risperidone, but also, if its 2yrs since the consultant has seen him, he is now bigger, and the behaviour has changed and the Consultant could check out if there is an underlying reason for the aggression. Whatever you decide, do something, as if he is like our son, things will not improve, and you have to think, what he will be like as a teenager and older with added hormones in his system.I do sympathise, as the situation and impact on the whole family is truly horrible.Good Luck.

Thankyou all for answering my post i will read them later when ds is in bed

To all thank you.

We have noticed with the 'naughty step' he often gets very upset and carries on the bad behaviour so he ends up more agitated. Personally i don't like using it but it does help in taking him away from the situation.

He has fight time with his dad where they chase each other around and practice 'wrestling' moves on each other. This is great for channeling his aggression but does get rough. I can see in the future some real pain coming from this play.

How does Risperidone affect sleep? At the moment he takes a long time to fall asleep and is very agitiated in his room, kicking walls and doors and then breaking down in tears. We have discussed Melatonin to help him sleep but they were changing the guidelines so that has ended up being pushed to one side.

I think we will see his nurse and ask about the drugs and at least look into it more depth.

Again thank you, it is nice to know there are others going through the same problems we are.

Risperidone definitely affects sleep positively in my experience and from what friends have said. DS sleeps so soundly now that he often wets the bed which is basically due to very deep sleep. He certainly gets to sleep easily. You can buy Melatonin over the counter in the USA and you can buy it on the internet here. Otherwise it has to be prescribed, the one that seems to be most common is called Kidnaps . Don't be put off, you might find that taking Melatonin (whcih is not a drug but a hormone) and being able to get him to sleep reliably without him getting over stimulated will work on some of the other behaviour. They should at least let you try that first if you think it makes sense.

Hi, I'm new on here. My son has ASD and apraxia. He's been on risperidone for a few years, and its definitely helped him control his urge to pinch, pull hair, destroy things etc, although hasn't stopped it altogether. One thing I've found really helpful is to phrase everything in the positive (hard to do!) eg instead of "don't throw that...", to say "put the rock down". etc. It really does make a difference. I've got better at handling him over the years, he's 12 now, and if your son has a sense of humour I'd use that as much as possible to distract him. Punishment/time outs/taking toys away, etc never has worked. Appealing to his better nature, even when its so not there, always works. Good luck!

My personal feeling is that behavioral type modification techniques such as the naughty step and even ABA to a point, do not really address key issues with kids on the ASD. Have you looked at diet and gut issues? Yeast, gluten/casein intolerance? Is he on any supplements? Have you looked at any sensory integration or vision therapy? How verbal is he?

I know I'm throwing a lot out there but am pressed for time

Children with ASD generally need to be taught everything. So you always need to pay attention to what you are teaching by your actions, reactions etc. That is why ABA does work because it analyses the function of the behaviour, then responds, then tracks the outcome and responds again. But that does explain why the naughty step, for instance, doesn't work because you are teaching that you get to do something you quite like for undesirable behaviour. Not to say that other approaches don't work or aren't useful but while you are doing those things you MUST have a way of teaching formally that works AND a way of reacting informally that works.
But if you have a child with such severe anxiety, SIB, aggression etc my experience is that medication is the most helpful route and this has been the case with children I've known who've had all the biomedical approaches going.

iw as told not to naughty step the behaviour as to him he doesnt actually know his being naughty its not intentional its a need to him its a coping mechanism

my ds luckily stopped but my friends son has taken her ds to see OT who assesses all sensory issues to find what and how and when to deal with the issues whats caused them and how to help him cope

i would seek out more help and see if you can find out what is causing your ds to need to react in that way my friend was shocked as FOUND OUT LOTS OF THINGS THAT WERE AFFECTING HER DS THAT SHE WOULDNT HAVE THOUGHT OF

also we use melatonin and now my ds sleeps his behaviour has improved tons

also do you have a trampoline its very good for autistic children to unwind we have small one in his bedroom its a different stimulant that works really well to help brain and thoughts process and to unwind

my friends ds is older and has one with a net round in the garden and he will go on there in one of his moments and he calms right down just left alone to jump about

x

Where do I start?

DS2 used to take knives and threaten us with them, kick doors, mock punch his face, spray pledge around, lie on the ground under a parked car, be very edgy if you know what I mean, bite his fingers all the time (still an issue)...there's more. I haven't yet been able to clearly tell our whole story, haven't yet met anyone who is able to hear it.

For him I have found that a completely different approach has lightened him as a person. I have slowly been turning from a parent who is trying to control her child to a parent who is smiley and strong and on his side. I started to do what he asked, for example he wanted me to sleep the whole night in the same room as him. That goes against conventional parenting, but it meant I was chatting to him in the semi darkness as he fell asleep. I would be across the room from him when he woke in the morning.

There have been loads of other steps along the way. We are not 'there' yet and I am now home educating him. He says things like "I'm happy" so that says it all really.

The dx is HFA by the way.

I think it would be helpful to find out what triggers ds to kick off. We already know he doesn't like whining or winging. For a long time we thought it was girls as he lashes out at dd but at school he likes the girls in his class as they are calm and don't whinge.

When he goes on the 'naughty step' he signs sorry and naughty to us which at first we took to mean he was starting to get the idea he was being naughty. After a while we realised that he was doing it cos he knew it was expected and he would be able to come back to the room.

He did have a trampoline which he loved and would bounce on it for hours. We are waiting to get his new one put up and maybe that will take the edge off.

We are definitely going to enquire about melatonin. It was 2.30am before he went to sleep last night 1.30 before he stopped barging around his room.
He has taken to wanting his dad in with him to go to sleep. Dad tends to fall asleep as well.
Also he has no curtains in his room as he just pulls them down so he gets a lot of light from other houses streaming through which i feel is not helping.
At the moment he is kicking his door and has pushed his bed right up to the door so he can stand and see out into the hallway. He will do this for the next 2-3 hours at least. Sometimes the kicking means he wants the toilet, othertimes it is cos he is just angry

This is interesting

A radio 4 documentary about drugs and special needs - might be helpful, might not!

I hope you are able to make a helpful decision for him soon

My ds has melatonin which is marvellous - at first he used it every bedtime, now once a week.

Milou2 Has the decision to HE transformed your ds then? If you feel suitably inclined I would value your opinions on this thread

do you use picture cards either photos or pec cards to communicate

my ds can speak npw but when tired he loses all ability to think his behaviour is terrible he can get upset over anything i would think this is probably a huge factor for your ds

my ds is now on melatonin and sleeps wakes twice a night but settles easier now and his behaviour is amazing no more melt downs hos tolerence to noise and light and people has improved greatly

before the melatonin we had to use picture cards to help him communicate as he was easily frustrated and would just melt down

he would sit in his room all day with is games console curtains closed and dvds all day now he rarely goes into his room loves his curtains being open and hasnt melted down at all and communicating great we have not needed picture cards at all

its amazing the difference that a good sleep can make we had 3 mths of 4 hrs or less sleep and it was the hardest my ds was awful not nice thing to say but he was couldnt leave the house couldnt talk to him couldnt look at him

now fantastic huge difference so i would definitely chase up melatonin it has been a godsend

also would help to try and find out the triggers it has helped my friend loads

also tone of voice my ds responds really well to cheerful tone i find my dp tends to have a flat voice and sounds angry alot even when his not my ds doesnt respond well to him at all he is learning to change his tone wehn talking to him

also choices work great for my ds he gets 2 choices to make before i do things my way but he is really good at making the choices as he feels in control and is happy to do so his nearly 4 with HFA and behaviour wise is so much better and calmer now i do find half of his behavior is down to lack of sleep he cant comprehend the world and becomes so upset

maybe you could choose a blind for his room and before bed he can choose to have his blind up or down etc then he has some element of control and maybe wont destroy it

is there anything he can do when in his room its not conventional but we let ds play his games console as it helps his mind unwind and he can block out everything else thats around him that could frustrate him

and he can settle well playing this once melatonin was prescribed he hardly needs to play it now but found he needed this to calm down of a night and now he doesnt his asleep within half an hour of having melatonin

I agree that it helps to try to be lighthearted and fun, it definitely takes the edge of difficult situations and often resolves them if not too serious. I never wanted to be DS's "controller" but I was never prepared to let him be my controller, never mind the rest of the family. Trying to consciously manage your own behaviour and feelings really helps but can be hard! Once I decided to really try to do that it did make things easier to deal with, even if DS was behaving exactly the same. If anyone is interested in this technique more formally google Mindfulness.
I would not sleep with DS, I want a marriage, some R&R, to be able to go out sometimes and DS's sibling to feel that things are not completely all his way and not hers. In fact, she would want the same and then what?
I agree that determining the function of behaviour is vital but, as I said before, as our children get older and more complex that becomes really, really difficult. I really think that trying Melatonin first would be worth a go, regular and restful sleep might work wonders. But don't discount further medication if your DS really needs it.