To be unsure about Risperidone for autistic DD6?

[SENadvice]

I have an autistic 6 year old. Over the last few months there has been a lot of changes which means that her behaviour has massively deteriorated - on bad days she continuously hits herself, hits others, is very impulsive and throws heavy things in the air without any warning which have injured people. I would say she has days like this at least 3 out of 7 days of the week.

Her consultant has prescribed her some short term risperidone to see if it settles down her behaviour, but knowing that it’s an antipsychotic is really making me feel conflicted, especially because she can have good days where the behaviour is more manageable and then it makes me feel guilty. I also feel like should I hang on for a couple more weeks until she’s back at school and see if her behaviour settles down at all.

Has anyone got any experiences with this please?

i would get a second opinion and get the doctors to answer all your questions. Is there a support group to exchange concerns and questions

I only have experience of psychotic friends having bad side effects from it.
I am autistic and on days when I am very overloaded I harm myself and throw things. What helps me is sensory intervention and preventative strategies like deep brimmed hats and sunglasses, noise cancelling headphones, avoiding going out on bad days etc

Is this in the UK?
I know through groups I'm on Dr's on the US prescribe Risperidone etc.

Yes in the UK

I don't have experience with risperidone for autism but my guess would be that your consultant has prescribed it for its sedating effect.

I'm sure you have all the background info but risperidone is a strong antipsychotic that can have serious side effects (ie significant weight gain) if prescribed long term.

Is he/she prescribing it so you can get a break before deciding on a care plan? Are they prescribing it to see how she responds with the aim being long term usage?

I wouldn't be happy with that as a long term plan, but maybe as a short term measure it might calm her down enough to start next steps/give you and her a break. I would definitely ask more questions.

They have prescribed it so she is calm enough to engage and benefit from other interventions… definitely not for the long term I don’t think

If this has started since school broke up I think it would be reasonable to wait a few weeks. My DC who is Autistic has definitely struggled with the school holidays and does every year.
If she needs the meds though, when you’ve given it a few weeks to see if she’s coping better when back at school, don’t feel guilty. It must be horrible for her as well as you when she’s struggling like that. I’m sure the Consultant has seen it help other children.

Do you have any specific concerns about using it? What in particular is it that’s worrying you?

Risperidone is a serious drug with serious side effects, but most of them come with long term us rather than a short course of a few days.

It works well for some ASD kids and less so for others.

The decision really depends on risk versus benefits. If you think you can handle this, and she’ll likely settle soon anyway, then it may be best not to give it. If she’s very distressed and you’re really struggling to keep her safe, maybe you should try it, just in the short term.

Do you have anyone you can talk it through with? A partner, a CAMHS case holder, social worker etc?

I’m mainly worrying about first of all side effects - like what if it causes permanent damage or something that doesn’t ease when stopped? I think I’m also feeling guilty because I feel like a bit of a failure and taking the easy way out rather than just handling her behaviour… like am I just making life easier for myself kind of thing… no I don’t have anyone that I can discuss it with in RL objectively rather than subjectively if that makes sense

I think you''re right to question this and feel uncomfortable about it given her age. Ds20 (autism) was like this at a similar age. Whilst going through the ASD (as it was called then) assessment process in order for a school to accept him, they insisted he was prescribed Ritalin as they felt he might have ADHD. Pretty shocking really but I was so desperate I initially agreed.

But very soon after I stopped giving it to him as I knew he didn't have ADHD and it was like drugging my kid with speed - I tried one and if you don't have ADHD it's like taking very bad speed.

The School/County were only going through the motions towards exclusion and just us pissing off out of their hair basically.

We did and I fought like a demon elsewhere to get him into a specialist independent school with an ASD unit. No drugs.

It worked. Hasn't thrown chairs or hit anyone for years. Better behaved than many young people and no drugs. We returned to the original County as I knew there was more provision, got given their usual crap for a few months but I was better equipped to deal with them.

So, stick with your gut instincts OP.

It’s understandable that you are concerned given her age. My guess is the dose will be very small.

You are correct that there can be a wide range of side effects, some very serious, and this needs to be monitored closely.

My brother takes Rispiridone daily to reduce certain behaviours linked to severe autism- it has reduced his anxiety and agitation. He does not become uncontrollably angry anymore or fly off the handle. When he first started taking it he was very tired and zombyish which was concerning. But he soon balanced out and was fine. I would say it has improved his quality of life and mental health. Before, it was as if he could not handle becoming overwhelmed at all and now you can reason with him and he will listen.

I have also worked in environments where autistic children take it, likely as a way of helping them focus, and be less irritable.

if your daughter is really struggling to regulate behaviour you then it may be worth trying, but as you say you need to be very vigilant of side effects. You also might want to see how she gets on for a little while without it and then try it if she becomes very unmanageable. It was very much a last resort for my brother and thankfully it has benefitted him.

Doctors don’t usually prescribe it lightly because of it being licensed as an anti psychotic and not a drug for autism. But much research shows it can reduce many behaviours associated with autism.

my brother has been on it for a few years. We saw a specialist mental health nurse who knows a lot about this drug and she said that it’s unlikely she would ever increase dosage because of the side effects that could then come into play. Therefore if it was to stop working they would probably try something else. It’s not a drug where you can just keep increasing dosage because of the health implications (obviously this may happen at the beginning, but dosage should be increased year on year, for example.

Should not be increased * that should be

You mention feeling guilty about 'making life easier for myself'. In fact, the medication could very well make life easier for DD. I can imagine that feeling calmer would be so beneficial to her, plus doc would not have prescribed this drug if they didn't think she needed it.

I dont have experience of that particular drug but all my children do take ritalin. For their benefit and mine - much happier, calmer kids who can benefit from a happier calmer mum who isnt firefighting impulsive, damaging and destructive behaviour

I dont know whether this is right for your child or not. What I do know from extensive experience is that Rispiredone is very very nasty to reduce or withdraw. If this does turn out to be a good medication for your child, be very firm if dosages are messed about with and ensure changes are made really slowly and gently. Professionals can become cavalier about medication changes, but I've seen some real suffering by abrupt changes to Rispiredone dosages in my years in Social Care.

My DD started taking it at age 13. She is autistic, and her behaviour had deteriorated to the point that she, and the rest of us, were in danger. There was daily violence, and she didn't go to school for a year (before COVID)

It probably saved her life. Things couldn't continue as they were. I can't say how awful life was. She had some slight side effects, but that's been managed and she has regular blood tests. She's just sat GCSEs and has done well.

There is nothing wrong in doing something that makes life easier for you. Why do you think you're unimportant? Does your health and happiness not matter? If you're a wreck how can you look after your daughter? Yourself? Other children?
I'd recommend giving risperodone a try to give you all a bit of respite. It will be carefully monitored.
Good luck 💐

I took risperidone for a year. Coming off it was awful. The withdrawal is terrible. I was on lots of mental health forums at the time and everyone who'd been on it agreed it was awful to come off. We couldn't believe they give it to children. I was ill for months coming off it. I'd do some research into that aspect before considering it.

I did not know that this drug had been tested to use safely with children. Check OP.

You’re always going to get mixed reviews so have to make the decision that you think is best for you and your family regardless what the people on mumsnet thinks.

I’m autistic and took risperidone for a bit, prescribed and when my friend offered me one of his pills when I couldn’t sleep (stupid thing to do I know, I wouldn’t do it again). Both times was awful, it certainly helped with sleep as I was passed out the whole time but when I was awake I felt awful, I could barely breath, the world was spinning, I felt seconds away from a death that never came. Coming off it was worse, even after I only took the one pill it took me a week to recover and even then I still didn’t feel great for a while longer.

Hiya, I'm also an asd mum, my sons behaviour can be difficult also to manage but my experience with respiridone isnt with him.
My jobs have included working with autistic adults for most my life and a huge majority of my previous service users (often one's with LD and other complexities) take the drug.
Also my BiL who is profoundly autistic has been taking respiridone since early childhood.
The drug does work to keep the patient calmer, it's wonderful in that respect, however long term it will affect the heart and come with risks.
Plus when it's lowered or taken away, problems arise again, because obviously that nice soothing effect has left the body.

I haven't personally considered giving it to my asd DS, for that reason. But that's not to say I wouldn't if his quality of life and anxiety was making his life unbearable.

You have to really think about this, because it's never been a short term option in my experience, quite the contrary if I'm honest.

Please do a bit of googling and make the decision based on your DC's life quality, ie would this give her a happier life that may when she's older shorten her expectancy?

A person's life quality should be the main focus in a decision to give respiridone imo.

Nobody can make this choice for you and I'm sorry this is so hard. Nobody wants to have to give their DC drugs.

PM if you need to mama 💗

My son was put on risperidone when he was 9 as his behaviour was so dangerous. He was on it for about six months, I don't recall any difficulties in phasing him off it. He did put on quite a bit of weight which subsequently came offs.

I don't think anyone wants a child on risperidone if it can be avoided but in his case it was a good option and had no lasting consequences.

My son21 takes this am and pm. Before this though we had tried behaviour intervention. Diazepam ( as required to calm didn't work at all).

He was already on melotonin. I has so many worries about putting him on medication as just felt wrong.

However it was that or he would have ended up in a residential. Before the medication he broke his bed his window locked me in a room. Would randomly grab cups and smash them. Walk pass me and hit me. He would hyper up to agitation and spend hours having a argument with himself. ( no able to reason had ld).

I was exhausted. He was unsettled. He started on a low dose ( 0.5 once a day).
His dose is now higher but not as high as I have known people who use for Mh have.

I still get behaviours. But not as often and its more manageable because of that.

The first week he slept a lot as takes a while to get into the system. No side effects so far. Dosage has increased as he has been growing since been on it - tolerance level reduces.

As for weight gain - as the ld he is unable to make his food so I control his diet. As its the increased hunger that's a side effect this can lead to the person eating lots of sugar and getting diabetes.

Catatonia is another side effect. Like there bottom lip seems dribbled and hand is cramped.

My son was put on this as a teenager, after at least 2 years under camhs. As everything else had been looked at first.

At the same time as the meds we had a wet room put in and he got access to respite ( no longer as in adults).

The changes have been positive for him and I. He sleep better. Is able to get out of the house and do things ( assisted). He has picked up in his communication and interactions. Rather than him being angry me being exhausted and stressed.

Part of this is down to the medication. But also the combination of other things put in place. God knows what it would be like nowadays if had not changed things.

However 7 is very young for the gp to prescribe this. Has she had an assessment with the camhs team?

How about children's services?

They are normally very reluctant to put on this medication untill everything else has been looked at first.

If you do not want to use it then don't. In my case it was a had too as he was eventually going to really hurt himself or me. Xx

My brother takes Rispiridone daily to reduce certain behaviours linked to severe autism- it has reduced his anxiety and agitation. He does not become uncontrollably angry anymore or fly off the handle. When he first started taking it he was very tired and zombyish which was concerning. But he soon balanced out and was fine. I would say it has improved his quality of life and mental health. Before, it was as if he could not handle becoming overwhelmed at all and now you can reason with him and he will listen.

Yep, very similar story with my child. They started on it at 10yo and it was a godsend. Removed the extreme irritability aspect associated with their ASD which meant they were always on a knife edge ready to go off. Made them so much calmer and happier within themselves and improved their quality of life dramatically. They are also on ADHD meds.

They have now been on the risperidone for 15 years and the ADHD meds for 19 years. This has enabled them to:
attend school without being thrown out (where we were at prior to the risperidone)
make and keep friends (didn’t happen prior to risperidone)
do well at school, get into a good uni course
be employable and indeed successful in a prestigious meeting industry
play sport that they absolutely love to a high level before having to choose between that or a high level career otherwise and keep doing it now as a hobby (were constantly suspended and threatened with being banned for behavioural issues prior to starting on risperidone and not one issue since)

I honestly don’t believe my child would be the happy, successful person they are today if not for their meds started when they were a child. Being banned from school after school or in schools with special units would not have benefited them educationally. Being banned from a sport they loved, and still do, wouldn’t have been great or benefited them. Having zero friends due to behavioural issues would not have been to their benefit either.

After 15 years, they are still active and healthy on it. No weight issues, if anything still find it extremely difficultly to put any weight on. Blood tests now yearly and no issues to date. No ‘zombie like’ stuff at all. When first on they slept pretty solidly for 2 weeks and it seemed like they were in quite a fog but it was transitory and then they came through that alert and energetic. I did have them under someone I really respected and trusted and I believed they knew what they were doing with dose etc. You do get people able to prescribe they frankly I don’t believe are expert enough to do so with kids so a case of getting the right person.

For those saying it’s ‘taking the easy way out’, ‘who would do that to a child’, ‘lazy parenting’ etc - a huge Fuck You. Everyone is different, it’s not for everyone but it is the most valid option for some.

*no idea what a meeting industry is. Bizarre autocorrect, no idea what phone thought it was trying to say.

Late to the thread. DS2 is a teenager and we probably waited to long to put him on it, by the time we agreed his school had called the police and fire brigade on him more than once and temporarily expelled him, his respite had failed and there was no available residential schools appropriate within a three hour drive. I was at this point in danger. Puberty has been horrific for him. The reality was he was going to be needed to be sedated in some form wherever he was sent as we were close to failing. He’s back at school, he’s back at respite and family members are no longer at risk. He’s most importantly back enjoying things in the community, as it was catch 22 - he wanted to go out and he was too aggressive to take out which made him more aggressive. The hope is that the end of puberty will help and the break in violence will form new habits. It was an extremely hard decision and tbh paediatrician generally hold back as it goes against good practice with learning disabilities. DS2 had to go through functionality testing, which ended quickly as the CAMHs worker was too afraid of him.