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autism, challenging behaviour and medication

Mami

My 8 year old boy has high functioning autism. The problem I am having is persistent foul language and rudeness to us at home and people who visit us whom he does not want to be there and general unpleasantness. It can be to adults or children. He can be physically aggressive too but this is less than the constant verbal abuse. He is also hyperactive though does not have an ADHD diagnosis. I am so worried as I am a single mum and he is getting bigger by the day. Does anyone have any experience of medication that my help but not have awful side effects? Very grateful for any assistance.

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Geoark

Hi Mami, any medicine which is designed to deal with behaviour is likely to have potential side effects. There are some things you can try if you haven't done so yet.

Autism is often linked with fussy eating, one small change we made was to put her on multivitamins for children. We didn't mention to anyone we were doing so but in a couple of weeks we were getting positive results back from school about improvement in her behaviour.

Something I am not 100% convinced about, though I am sure it genuinely does make a difference for some children is cutting out certain food types, for example gluten and dairy products. Personally I would recommend talking to your doctor first. Cutting down on sugar content would certainly help, if he has a high sugar diet.

Autistic children often have particular difficulties with changes in routine. They respond well to set routines and while this is not always practical in family life trying to establish some routines can help. Letting your son know in advance of changes, like when someone is coming round at least it is not an unexpected change to what they were expecting.

Sleep is also important and something that can be difficult to achieve, especially with hyperactivity. Lack of sleep can reduce coping capabilities and result in the sort of behaviour you are describing. This is because the child can become overstimulated. A good bedtime routine in helping your son to calm down and relax can help - though finding that routine can be difficult. A lot of parents have reported that specially weighted blankets help. With some autistic children certain scents can help to relax them.

Does your child have his own 'safe zone' - this is a place where he can go to be away from what is going on? Over stimulation can be a huge issue and will cause behavioural problems. My own way of looking at this is overstimulation is when the child/person is affected by their environment in such a way that they are unable to cope. A typical method of dealing with this is stimming, a repetitive behaviour that they can focus on temporarily blocking out what is causing the problem. Stimming behaviour can include rocking, rubbing hands, clapping. My daughter's stimming is subtle and can be difficult to miss completely if you are not aware of it, and most people aren't.

When my daughter was younger I would send her to her bedroom. This was her safe zone and had everything she wanted and need to calm down and regain her composure.

If these are all in place and his behaviour is still an issue - not uncommon at this age - I would suggest talking to your doctor, local chemist, regarding potential herbal remedies. Just because something is natural does not mean it is safe, or right for your son.

Not what you were asking for I know, but hopefully you will find something useful.

[Deleted User]

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Hushpuppy

Let him go upstairs away from the Visitors if he wants to

will22

Hi Mami,

Thanks for your query. Just before we discuss medication -

The situation you describe is very familiar. The use of ‘rude’ and foul language can be an issue and I’ve had experience of parents and staff teams trying to get on top of this as they would with any other young person – correction, punishment and trying to teach the young person that what they’re doing is wrong and the impact on others etc.

Verbal behaviour can be very difficult to manage. I’ve worked in the community with young people who would swear and scream and the stress it causes to the people supporting them is huge. It makes you feel like everyone is looking at you, that you’re doing something wrong and that their language is a reflection of your inability to support them – or in the case of families that you’re somehow failing to raise your child appropriately when there is no ‘obvious’ disability.

Nothing could be further than the truth. Like all behaviour it stems from the difficulties the person has meeting the world in which they live in. ‘Rudeness’ is not always the best way of thinking about the language and communication needs of someone with autism- but there is no denying it’s impact.

While I cannot say based on this information “he is doing it for this reason, therefore do this” what I will say is that understanding his behaviour (in all its forms) must start from an understanding of how his condition affects him, and what this means for the situations you find yourself in. This is important right now for your specific query but will become more and more important as you say he gets older and physical management becomes much more tricky. I’ve worked with families who have had difficulties with language or aggression which have been resolved through a family member being able to **** the young person away, but this is no longer an easy option when the young person becomes an 18 year old with much more determination.

Your son is diagnosed with Autism and so is likely to be experiencing a degree of anxiety when there are alterations to his expectations of situations. (I’m being very broad here).

The scenario you describe – people visiting you at home - represents a source of stress in that it is an ‘intrusion’ from his point of view into a safe space, it is enforced social interaction which he may find difficult and stressful and it may be a break to routine which can be very important.

Managing this depends greatly on his level of understanding and ability to take in and deal with information. But overall you should be looking at supporting his anxiety (or genuine desire simply not to have people there) through a number of means.

Firstly ensure that he understands as much as is possible about what is happening. If you have a planned visit then present this information to him – visually if at all possible – that XX is visiting at seven o’clock in order to speak to you and will be leaving at 9 o’clock. Try and eliminate the anxiety caused by the difficulty in understanding what is happening.

I this situation a strategy called social stories may be appropriate (http://www.autism.org.uk/about/strategies/social-stories-comic-strips/uses-benefits.aspx). By using these you can support your son to put new events into a framework that he can understand, and most of all give him some guidance as to what he can do if he is unhappy. For example if he does not wish for someone to be there then he can leave and do his own thing until they are gone. This can be the start of teaching him a socially appropriate means of letting you know he’s unhappy or that he needs to leave a situation without inappropriate language or aggression. This may benefit you now, but will be more and more important as he grows older and patterns of behaviour like this become much more of an issue.

So in a nutshell, try and understand why this is happening from his point of view. It’s hard to understate the role anxiety plays, but also that if you genuinely just don’t want someone around then swearing at them tends to make them go away pretty quickly. Support your son to understand what is happening and what he can or should be doing. Link appropriate behaviour to a reward if possible again using a social story or other framework.

Medication – the use of medication to support people with autism is quite common. Like any tool it is something that can be of great benefit but should always be used appropriately and under the guidance of the right healthcare professional.

Most medications come with some form of side effect. The families I work with are frequently terrified of their child becoming ‘doped up’ or ‘like a zombie’. This is a million miles away from the reality usually. As I have said, anxiety can be a huge issue in autism and a medication to support that anxiety can be greatly beneficial and should be used in conjunction with other support strategies.

I have worked with several young people for whom medication has been hugely beneficial. I would advise you to discuss this with your GP who will either prescribe for you, or refer you to a specialist team who will advise on the appropriate medication but also look at the situation as a whole. Medication alone is unlikely to be the answer.

Just to mention, there is some good info in the comments about bedtime routines, the need for order etc. When discussing things like dietary supplements, restricting foods I would advise great caution. As a parent you should always seek out and explore options that can help your son. But there is also a great deal (an overwhelming amount really) of information out there, not always based on evidence and sound practice. Some of it actively harmful and preying on parents fears. Don’t pin your hopes on miracle interventions through dietary changes for example. Autism is a lifelong neurological condition and anyone promising a dramatic change based on a quick intervention should be approached with caution and some scepticism. Explore by all means, but do so with your eyes wide open.

I hope that is of some help.

Will

Mami

Dear all,

Thanks you so very much for all your input. The interesting thing I notice from all your comments is that none of you wholeheartedly recommend medication, not least because of possible side effects. With my son it is so hard to decipher if he is anxious and not coping or if he is acting out on purpose to get out of doing things he does not want to do - he is very oppositional. Certainly he misbehaved when he did not want a particular visitor to come and I completely take the point that I should have prepared him more in advance, visually if possible.

I like the idea of a safe place though I wonder if his bedroom is the right one, as I want to associate that only with sleeping as at the moment his hyperactivity does make it very hard to get him to sleep despite having a fairly good pre-bedtime routine. I completely see now that he probably is overstimulated and therefore wants to take control: at the moment he is obsessed with his hair and wanting to control it with water, hair gel etc.

One of the concerns I have about medication for hyperactivity is that I have been told by CAMHs that it can exaggerate already existing autistic "symptoms".

Danny: I wanted to ask you have you ever been on medication? Has the verbal/physical aggression declined as you have got older? If so did it happen naturally or did you need the medication to help you as a child?

Will: thanks for the tip about giving him socially appropriate strategies to let me know if he is not coping with the social situation we are in (e.g perhaps a code word?) and for the NAS link

Thank you all so much again.

Any other thoughts/comments very welcome

Mami

[Deleted User]

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will22

Danny makes some really good points. The difficulties that he has had have decreased as he has learned more and understood himself and then learned ways to manage and control his anger.
In the short term medication can be really useful when things are in crisis or someone just can't cope (If i suffered from an anxiety disorder I would access medication for it as part of a package of care), but lifelong change comes form learning new skills.

This isn't possible for everyone.not everyone has the level of insight and ability to change that Danny does, but that does't mean that someone can't learn a skill or a plan for dealing with things that upset them.

Your son in this example could work out a plan with you - using the social stories - for what to do when he's in situations that he doesn't like such as having people around. Retreating to a safe space is a great idea and this can be part of the understood plan between you both. Bedroom or not bedroom - I'd argue bedrooms are for sleeping but if you don't have anywhere else to go then that may be your best option.

As you say deciphering what is going on can be very very difficult. We assume it's about anxiety or about control, but we don;t really know. Hopefully you son can give you some insight into what he's feeling (although this can be very difficult). i'd recommend keeping an open mind - it's easy to get stuck on an idea that something is definitely anxiety or control or frustration.

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Mami

Really helpful, thank you both.

[Deleted User]

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Mami

Dear all, I have now seen CAMHS with my son and they recommended that he be put on a Risperidone trial to manage his behaviour. I have the medication but don't want to start him on it until I have more info. Does anyone have experience of it or put their children on it? Much appreciated! Mami

Sam_Alumni

Another member @Dot was talking about Risperidone, can you help at all Dot?

I found this information in the form on an NHS leaflet, you may have already seen this. Did CAMHS give you much info?

Dot

Hi! My daughter has been on Risperidone for almost 3 years and it seems to be working well.

I was extremely wary in the beginning, refusing more than once to start it, but my daughters behaviours ( severe self harming, smearing blood, throwing things and holding knives at us) i finally broke and agreed to try it. The only downside we found was a huge increase in her appetite, going from just over 6 stones to now being 12st 9lbs and 5ft 8ins. She still has meltdowns, but much less frequently. I would say, try it. We had tried other meds, but knew within days that they didnt suit her. With Risperidone, we had no problems. If, after starting, you see things that worry you just stop. There will be meds out there that will work.

Good luck!

Mami

Very useful leaflet, thank you Sam - I got nothing from CAMHS.

Dot - thank you you so much for sharing your experience. Might I ask, how old is your daughter and what dose is she on?

Thank you so much all

Mami

Dot

She will be 18 years old in April, and she takes 0.5mg twice a day. She also takes 100mg of Sertraline and and 10 mg of methylphenidate 3 times daily.
I hope this helps. Its never easy giving your child meds like this, but you have to think its to help them cope.
Hope it goes well for you all.

Mami

Hi Dot, thank you so much, I have started with the Risperidone and am keeping my fingers crossed.

Thank you again.

Mami

Dot

I hope things go well. I will be thinking of you.

Dot

Hushpuppy

I would never take drugs...mainly I find ways to lessen triggers...I would have freaked had I been medicated without that choice.. There are always other ways to lessen meltdowns behaviours etc and they are all a communication cause...people didn't always know what caused the anxiety as when I got to that stage I couldn't talk and say...The problem wasn't for me having the overload but for people dealing with it... yes its not good but once we at least that pitch we not bothered anyway..just need to know safe when rebounding...and the lead up to it can be helped with changing things like socialising if it causes anxiety...We don't have to meet people etc in some circumstances. .. find out what raises our anxiety and if poss avoid it...reduced behaviours...We don't always have to join in family things or what is usual as the norm..Our world IS different.. let us live it with as less triggers as poss then we get stressed less and don't need medicating