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The use of medication on the Autistic Spectrum

aimosan

Hello all

I've come across many people discussing what medications they are on, or their friend/relative, is taking, in regards to helping them cope living on the Autistic spectrum.

I've not been officially diagnosed with being on the Autism Spectrum, because when I was told I probably had Asperger's Syndrome there was no where convenient for adults to be diagnosed and there was also no support for the North of Scotland (awareness of support is now slowly changing thankfully).  When I was younger I struggled with speech therapy, had countless sessions on physiotherapy for aching joints and my "funny walk", disruptive in class, had my hearing tested several times, and didn't cope well with social situations.  Because of the issues of feeling trapped in classrooms with people, the social situations of school, and being bored in school ended up with me seeing a councillor again.  I've seen councillors since a very young age but there was a few years where I didn't see one.  This is when all the medications began to appear.

I was started on Fluoxetine (Prozac), which I was not comfortable taking. No one could get me to take mediction for more than about 3 weeks.  There were other things tried but I never stuck at it.  I never knew I might be Autisitc until it was mentioned a couple of years ago, then everything made sense.  All this time they had been using CBT, psychiatrists, and medication, to tryand fix the affects of Autism, and not the underlying cause.  It was mentioned by a new psychiatrist I met who had another female patient who had very similar mannerisms to me who had been officially diagnosed.  By this point I had been on citalopram and omeprazole for sometime, and it made me think...

Where do you draw the line in regards to medication in Autism?  As being on the spectrum is a lifelong condition, can doctors expects us to forever take medication?  What has helped me the most has been doing things like CBT, helping my brain think of situations differently.  As it's been a few years since I've last had CBT I would like more again because the first course was for the agrophobia, where I still have problems with being out in public and fears of vomiting.  I need help to deal with this mentally, but I moved areas and my current doctor just increased my dosage of Citalopram.  I've told her what helps me but she always insists I take the Citalopram.  When I mentioned to her I was going on a 16 hour trip to America her response was to prescribe me Diazepam!  I've been on my holiday now, I tried my hardest to keep as calm as possible whilst travelling: earlplugs, comfortable clothing, picked suitable plane seats, which all helped.  I did not take the Diazepam.  I was travelling alone, since when is taking a new medication like that OK to take on your own travelling such distances?

I've been on the Citalopram longer than the recommended time now and I get heart palpitations and dizzy moments, which is a serious side affect.  I've decided to come off it so I've been very gradually reducing my dose myself (which is not recommended, I know), but now that I have found support with the National Autistic Society I feel much better about life now that I have somewhere where there are people who understand.  I also have a very understanding partner, which always helps.

But, after my essay, my point is where is the line drawn?  When is too much medication too much?  My Granny also had Asperger's and she was given a medication to help with one issue, then a medication to deal with the side affects of that medication, and then more medication to help with another problem.  Unfortunately, I lost her this year, which is why it's so important for me to have support for the Autism, because I spoke to her so much about it.  I wish she was given more psychiatric support, and I wish I questioned sooner all the medication she was taking, but that's how life has run.

If medication is not working for you, or you are not sure about the medication you are taking, there is nothing wrong with getting another appointment with your doctor just to discuss your medication queries.  I find unless your doctor has had first hand experience with Autism, or is autistic herself/himself, they won't fully understand your needs.  You know what works for you, but don't shun anything you think won't work.  At least try it first.

Am I wrong in thinking that giving diazepam to someone on the autistic spectrum though is a bit too far?

  • I'm taking 5mg diazipam atm for low,depressed & full of anxiety I've had self harm thoughts but kept myself busy & distractions to keep me active & positive but the diazipam feels as if I'm overshooting my goals of feeling happy instead of low 

  • There is no 'medication for autism' as I understand it. There is medication for mental health conditions autistic people are more likely to have. My general view of medication for conditions like depression, anxiety and PTSD, conditions acquired or driven by environmental factors, is that it can be useful but isn't a long term solution. Ultimately people need to overcome those issues with therapy and with changes to their environment.

    Now conditions like epilepsy etc, that are more developmental, often congenital, in nature; may need life long medication ... however there is no point in medicating people to keep them alive if the side effects are so sevear they make people want to die and some of these medications have such extreme side effects that that can sometimes be a concern. Doctors tend to think of preserving life above all else but I'm keen to point out that needs to be balanced against quality of life. It's a consideration that would be familiar to say an oncologist who might say "with this therapy 3 months becomes 6 but you'll spend them in pain," but psychiatrists aren't really used to thinking in this way, mainly because they generally don't think their patients are capable of making informed decisions about quality vs length of life. But informed or not a decision has to be made and they're the only ones who can really know what quality of life they find tolerable.

    But generally if autism is the only long term developmental condition you have you shouldn't be 'permentaly' on medication.

  • in reply to Shardovan

    Hope the meeting went well.

  • in reply to __Pathfinder__

    Good to hear. I think they’d trust me based on previous chats and also that I came off the other medication voluntarily and so am not a junkie!

  • in reply to Shardovan

    Yeah they will, especially if you are sensible and they know you.

    Thats what i use them for.  I might use 2-3 tablets in a 3 month timeframe, and I break them in half as 1mg is more than enough to calm me down when I need them.  I get them prescribed in a pack with 12 tablets maybe once or twice a year.  They aren't a good drug to take a lot with worse withdrawals than heroin if you do.

  • in reply to James

    Many thanks James, much appreciated. I’ll look into that one! 

  • in reply to Shardovan

    Dear ,my apologies for giving you a rather off-topic answer to your important questions.

    The doctor that diagnosed me recommended Escitalopram. (He said that is his typical recommendation for people on the spectrum.) I have found it quite useful and calming regarding anxiety.

    Good luck with your meeting with your GP on Monday.

  • in reply to aimosan

    On this subject, I’m having extreme sustained anxiety most days but I came off Venlaxafine as the side effects (for me)  were unbearable. Weight gain, metabolism wrecked, restless limbs, and just a gradual descent into too great a resistance to the benefits after some initial success with taking the edge off. But I’m wondering: does anyone know if a doctor will allow diazepam on repeat if, crucially, it’s on the basis of use for the very worst days only? In other words, they’d give you a pack of 28 but you’re not allowed more for 6 months. I really feel like I need a ‘lifeline’ for my sanity on the very worst days and something like that (even knowing it’s in the cupboard untouched most weeks) would help so much. Anyone ever asked for this and got a yes? I’m seeing my GP on Monday about nerve damage in my arm so could chance my… try my luck I suppose. 

  • I like your comment where it is more for society than for the ASD.  No wonder I always feel like there is something wrong with me, when there isn't.  I'm just different, which apparently is a bad thing and I need to take ample medication to blend in with the rest of the boring masses.

    There isn't very much autism awareness at my doctors surgery so I struggle with trying to get someone to listen to me.  I will look into alternatives for medication, because I really don't think I should be taking Citalopram any longer.

  • The medication is for co-morbid anxiety, not for the condition of autism itself.  In fact, NHS NICE Guidelines state not to medicate for autism.

    Like anything, I guess you would need to weigh up the pros and cons.

  • Presonally, I think that medication for anything non physical is just a means of supression of the symptoms by playing with chemicals in the brain and while there may be some short term benefit there is never any long term benefit and only long term problems and side effects. The drugs you mention can never ever have any long term benefit.

    It seems to me that the drugs are a solution for society rather than a solution for people with ASD.