My son is 17 and has not been prescribed anything for his autisic symptoms other than dietary supplements.
We love him to bits. He is profoundly autistic, non-verbal with profound learning difficulties and very much in a world of his own.
He has bouts of anxiety, not every day but frequent enough for it to become a challenge outside the home. OCD has gone from 'quirky' to making our lives very limited. He has now started with teenage tantrums that are happening more and more when we are out and about (shop is closed, things in a store have moved, train is late, bus takes a wrong route etc). As well as tantrums he will also refuse to move and can literally stay in the same spot for hours. We are struggling to get him to school too as he refuses to come out of his room in a morning - his school is the best school for autism in the area and we all have a great relationship with the staff and they are fantastic with him.
Now - I think he would benefit from some mild medication to help him stay calm with life's disappointments my husband thinks differently. I know literally nothing about anti-anxiety drugs so please feel free to give your opinion.
Can anyone share experiences or offer advice?
Hello and welcome to the forums.
I'm not a parent. I hope you get answers from other parents and you might find similar questions in the Parents and Carers forum and in the 'related' bar to the right. By the way, you may also want to change your username (currently NAS3xxxx something) or profile so you can be recognised by other members of the forum - to do this, click on the round button up the top right of the page, and choose 'Profile', then 'Edit Profile', then click on the name.
I'm not a doctor and have no idea about your son. Roughly they may consider non-pharmacological interventions first, and then maybe think about anti-anxiety medication, antidepressants or antipsychotics. It's not surprising nothing is prescribed for autistic symptoms, since they aren't usefully treated by medication: see NICE guideline 170: https://www.nice.org.uk/guidance/cg170/chapter/1-Recommendations
Anti-anxiety medication if taken regularly of course leads to 'tolerance' and decreasing effects. It was often claimed that there wasn't tolerance for antidepressants, but many disagree, and antipsychotics have various long-term or permanent side-effects like tardive dyskinesia.
Here's a link I keep posting about PDA that some parents have found interesting: https://autisticmotherland.com/2018/05/23/pda/
What relationship to you have with your local CAMHS service? Surely they would be the best people to advise?
Thanks for your reply. I have no relationship with CAMHS, I had to google it! We have had various agencies attempt to help us in the past, and although well-meaning, mainly ineffective, they tend to give up on us before we give up on them.
Because of his level of learning difficulties and with only very basic communication talking therapy is pretty much ruled out. He has developed self-soothing skills which his school were really impressed with, but to be honest they have slowly developed into OCD symptoms that make it difficult to leave the house at time. Its like our world revolves around his moods.
I will make an appointment on Monday and talk to GP and will ask about side effects etc.
I’m going to start trying cbd oil. I have tried anti depressants in the past for the anxiety and while it worked to some degree, it also took away much of my imagination, my world. The most effective help I have found is smoking canabis. However, it is no longer a long term solution for me so I’m trying cbd oil. I have tried several herbal products with no good results. Switching to a raw vegan diet has helped tremendously and it has enabled me to see that I live with an underlying level of anxiety that I can see is preventing me from doing many things so I realise this has to be addressed. So for me, cbd is my current best option so I’m going to give it a try. It has to be said, however, that different things work for different people so I certainly wouldn’t rule out anything. These are simply what have been my experience and I honestly believe the cbd oil will do the trick for me. I was given something like beta blockers several years ago but I never gave them a proper chance as I didn’t realise at the time that I was experiencing anxiety so it didn’t feel right for me to take them, so I’m not ruling out trying them again, if the cbd oil didn’t work.
Hi. My sons psychiatrist tried him on Sertraline which is for anxiety or depression.
He started him off on a small dose but he didnt respond well to it so the doctor took him off it.
He was going to try Fluoxetine but he ended up prescribing methylphenidate for his ADHD instead.
If he hadnt done this I would have definitely tried Fluoxetine.
As a parent I would say you know your child best and if you think medication could help him then go for it. We have been trying my son on various meds for nearly 2 years and we still havent found one thats worked well for him. His school has implied that he shouldnt be on meds and they think strategies is best but they dont have to live with the strsses and meltdowns on a daily basis and strategies alone dont work in my opinion either.
Your GP wouldnt be able to prescribe anything but he could refer you to a consultant who could.
Also sertraline was a tablet that dissolved so I used to put it in a yoghurt until it dissolved then I could get my son to take it, as theres no way he would swallow a tablet.
Me and my husband disagreed about medication also but he was eventually willing to try as we were the same and really struggling to cope with daily life as I didnt want to take my son out because of the behaviours.
I hope you get sorted, let me know if you would like to ask anything else. X
CAMHS may be aware of more possible interventions/strategies than just standard talking therapy or medication, which your GP may be unaware of. I believe your local CAMHS should be accessible to young people with learning disabilities, and may have one or more specialists in autism. The fact you are considering medication is evidence that the anxiety is a mental health issue, apart from your mention of OCD.
Hi, your son sound very much like mine was at that age. My son is 28 now and has been taking a low dose of Risperidone for about 10 years. It has been brilliant for him. I didn't want him to take medication to begin with, I worried about side effects, long term health issues etc, but the impact that his anxieties were having on his behaviour and his quality of life meant that I was prepared to try medication.
We have tried reducing the dose or stopping the medication but each time it has led to a recurrence of the problems. The last time he became very anxious and distressed.
It may not be the right thing for your son. We see a very good psychiatrist who says she finds for some people it works really well but not for others. She sees no problems in him remainging on Risperidone at a low dose for years to come. It's not ideal, but if my son could talk I know he wouldn't want to go back to feeling the way he does without it.
I take 50mg of Sertraline everyday, and it does help with my anxiety a little. I don't want to stay on it forever though.
Hi - I have a 16 year old boy that has only recently been diagnosed with ASD. He was initially referred to CAMHS when he was about 10 with OCD - to cut a long story short, he was eventually diagnosed with anxiety disorder and depression a few years ago. He was started on Sertraline by the CAMHS Psychiatrist - this really helped his OCD tendencies, but not his anxiety/depression so much. It was changed to Fluoxetine a few months ago and it has been fantastic. He even admits himself that he is a different person now - so much happier and more confident. I was quite concerned for him to have medication, but am so glad that he did x