ASD and psychosis

Hi all, 

I'm really happy to find so many people, especially women, on the spectrum as I'm struggling to find someone in person. I was diagnosed with Asperger's 2.5 weeks ago, aged 23... not too long ago! I've been finding it very difficult to cope over the last 10 months, and 2 weeks ago I was referred to an early psychosis intervention community mental health team by my psychiatrist after hearing voices and seeing things which aren't real. I'm really worried I cannot cope for much longer and will have to drop out of my PhD, which is the main area I obsess over!

Has anybody else suffered with this, is this normal for Aspies to go through? Does anybody have any advice about what helps, or any other useful ideas?

I'm looking forward to reading through people's experiences... Have a great day!

E x

  • Hi E, 

    Don't fret - I'l tell you my story and hopefully you'll gain some comfort.

    I'm diagnosed ASD1: I also have ADHD and I'm Bipolar 2.....They are the labels, and yes they're from consultant psychiartrists.

    However, having lived with my personality all my life, I have my own take on such things.

    A few years ago, I underwent major surgery, which led to employment issues, the involvment of solicitors and shortly after, two family bereavements.

    These are standard enough life events but, at the time, I felt as though I was losing my grip on reality.

    I had exactly the same symptoms as you and ended up being prescribed anti-psychotic edication and a diagnosis of Bipolar 2.

    What really happened was that I was experiencing, but not handling properly, very intense stress. 

    Have you ever seen a bucket of stress?.....I haven't.

    I can say this now retrospectively, but I know, due to my personality that carries the label ASD1 / Asperger's, I am invredibly prone to anxiety.

    Left unaddressed, I believe this cumulates in people like us, until you actually sense a feeling of complete and utter metdown.

    The most natural thing to do is to "catastrophize", hence why you're thinking of dropping out of your Phd.

    If you're smart enough to get to this level of education, you are just as able to manage yourself and get through such a time, even though you probably think even the slightest issue is insurmountable.

    Yes, people like us do suffer like you, so firstly know there are many, many people like you and just as many who can help you.

    Progress your mental health treatment with the professionals: They know what they're doing.

    Reach out to places like this for support, but above all, believe stressful times like this all eventually pass and that you will be fine in the end.

    Relax, and good luck.

  • Hi E,

    I'm autistic and take antipsychotics (aripiprazole).  I think I had psychotic episodes about ten years ago.  I say 'I think' because I now don't have such great memories of the time.  I know I thought odd things, which didn't seem odd at the time, and I think I heard voices, but I thought they were real.  I'm doing my PhD now, and I'm finding the obsession of the PhD very useful to get back into stride with everyone. But I work from home and am doing it part-time.  I'm at the end of my second year and have an Introduction written, a lit review done, a methodology chapter written and I'm gathering data at the moment for a chapter 4, and am getting ethics approval for a chapter 5 data gathering.  Things are moving along nicely.  I get DLA, now it would be PIP, which is useful financially, as I can't work and do the PhD.  I would be too tired.  The antipsychotics take energy from me, but I still need to take them, as I'm scared of what will happen if I don't.  I hope that you can continue with your PhD, if you need to talk again I come on the site most days.

    Margaret

  • I have ASD and suffer from psychosis too. The psychosis has been really frightening and severely knocked my confidence so I can sympathise.

    In regards to the money aspect of your course, as any extensions would be disability-related it may be possible for the university's disability services to either get these fees waived or to pay for them for you. If not, you may be able to apply for you universities hardship fund to pay for this.

    Do you receive Personal Independence Payment? I do and its a huge weight off my mind. I receive around £331 every four weeks and as I was awarded the enhanced rate I am also eligible for the disability premium of any benefits, so if I ever can't work I won't have to struggle as much. If you did receive PIP you may also be eligible for housing benefit whilst you're a student.  My main tip when sending off the application form is to hand in as much independence evidence as possible to back up the point you make. This could include a letter from your MH mentor or psychiatrist, a print out of your GP records with the relevant points highlighted etc

    https://www.gov.uk/pip

    https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/ 

  • Hi E, just been wondering how you are doing. Hope you are getting a bit more support by now.

  • This may be of interest. http://bjp.rcpsych.org/content/210/4/269   It suggests psychosis in autism is more likely to be atypical. I have autistic traits whether enough to meet the level for an autism dx is debatable. I am listed as having had psychotic symptoms -NB delusions.

    My most chronic and enduring difficulty is with social interaction. I've had less than a handful of friends in 60 years. My lack of friends stretches back well  before any overt mental health signs. This contrasts with many just with psychosis who often have friends only to lose them when psychosis develops.

  • Glad that you find your group at Uni supportive, maybe try not to worry too much about the PhD stuff then for now. There may also be something to support you financially, at least when it comes to the tuition fees.

    I can imagine that this is incredibly difficult to tell others, but at the same time, the thought that a friend of mine is  suffering with something of that sort and I haven't got the slightest clue is very sad. I'm not blaming you for making others sad (just in case it sounded like that), I just mean, your friends would probably be more shocked if they knew that you don't dare to tell them than they would be if you told them. You don't need to tell lots of people but maybe try to decide for one you are going to tell if things get worse? Maybe write a text or something that you save, so you only need to send it if needed? You don't have to call it psychosis if it's the word that seems so shocking, maybe just explain what you feel like? Maybe someone from your group at Uni, if they already know anyway that you are not well? Try not to worry too much about what they are going to think or how shocked they will be or so, more than anything they'll want to support you. Guess just knowing that someone is there for you, when and for as long as you need it, not when you have an 1 h appointment, would perhaps reduce the stress and fear a little bit. It's important for getting better to have support!  

  • E, said:

    "I've been finding it very difficult to cope over the last 10 months, and 2 weeks ago I was referred to an early psychosis intervention community mental health team by my psychiatrist after hearing voices and seeing things which aren't real."

    Has anybody else suffered with this, is this normal for Aspies to go through? Does anybody have any advice about what helps, or any other useful ideas?"

    Hearing voices and seeing things which appear to be there only others do not see them ~ is normal for Aspies and others who experience these sort of things.

    I have been having such experiences my whole life ~ started pleasantly and informatively enough, got into the darker territories during secondary school with hearing voices telling me not only to kill but also how to kill as a result of being bullied, and after school the ear-lug nasties carried on until the age of 27 ~ when things became pleasant and informative enough again and my pacifism continued on unabated to this day for me at the age of very nearly 47.

    At the age though of 12 ~ I was diagnosed as being quote 'Schizotypal and/or Psychopathic'.

    As a young undiagnosed Aspergian (until 45) I had the psychological reading age proficiency of a post graduate, and read quite extensively on such experiences as mentioned, ranging from comparative metaphysics, philosophy and religion from 6 to 8, up to sociology a bit and psychology a whole lot from 19. I have met and worked with many people who have experiences much like mine and much like or the same as yours.

    There are many different ways to deal with or resolve the issues you are having, whether that be pharmacological, psychological or what-have-you. The question is ~ what variety of generally unheard and unseen states of affairs are you hearing and seeing, i.e. are the voices of a particularly different quality to hearing someone speaking loudly or quietly to you in the near or far vicinity or time frame, and are the things you see luminous, spectral, shadowy, opaque, geometric and/or even cartoon-like?

  • My comment disapeared... To be honest nobody understands what I'm going through and I can't bring myself to tell friends or family about the psychosis, the words won't come out! the only people i can get help from is my CBT therapist and hopefully the psychiatric nurse. In between sessions my psychiatrist has told me to just call NHS 24. Thank you, I usually exhaust myself in feeling sad then fall asleep and wake up a bit better!!

  • I will keep remembering that thanks.

  • Thank you for your comment, it means a lot. I am having my psychosis assessment on Thursday. I do get help from the mental health team at university. I actually see the psychiatrist through the university and I have a CBT therapist through them who was helping me with anxiety before my diagnosis. However I find through the NHS there is less support. The university are helping me make a formal complaint to my GP surgery, to cut a long story short I was denied mental health help and had a 3 hour breakdown (i believe would be a autistic meltdown) where nobody was able to help me or advice me on any further help... My GP didn't even know about crisis!!

    My supervisor is very supportive and I have been in his group since my undergrad so I have help there. Unfortunately there is no sick pay during a PhD and if i run over my time I have to pay the university lab fees which i won't be able to do.

    I have been assigned a psychiatric nurse, and see people now about 2x a week on average now and i hope it will begin to help. It's hard with this diagnosis as I don't identify well with other ASD people that I have come across. There is no advice/help on any of these sites that I've found for Postgraduate/ PhD students or the difficulties i face with my ASD.

  • The PhD aside, do you feel reasonably looked after for the time being? Please get in touch with someone (friend, parents, that community mental health team or whoever they said you should call if it's urgent, GP), someone who would notice if you forget to drink, eat, sleep and so on or are at risk of doing something dangerous. Please take care (or let others do that for you if you aren't able to do so yourself at the moment).

  • Hi Emily,

    I haven't had that either, some doctor thought at some point it was at least worth checking if something psychotic was going on in my head but the person who assessed me figured out quite quickly that this wasn't the case. Think I read somewhere that autism does not increase the risk for psychosis, so that would not be any more or less normal than for anybody else. But then, stress can cause all sorts of weird sensations and anxiety levels are often high with Asperger's syndrome, so that could probably be a reason too, or both. If your psychiatrist  referred you there then I guess they assume that it may be more than stress. However, perhaps if so, chances that you will not drop out of your PhD are better than if it is purely AS that makes you unable to cope because while AS won't got away and all you can do is to try and manage it better psychotic episodes and whatever is causing them can possibly be treated much better (depending on what's causing them).

    If you get the feeling that you are unable to work (guess that may be the case now from what you are saying) you need to tell someone at the Uni about this. Don't wait until you get into trouble because your supervisor isn't happy and has no idea what's going on. Unis seem to be really quite supportive when students have serious mental health problems, after all, most of their students are in quite a vulnerable age group when it comes to that. As long as the nature of your project doesn't completely prevent this they would probably try and find ways for you and your supervisor to give you a chance of finishing (more time to make up for time off-sick, part-time option, support while you work there, postpone reviews for as long as needed...).

    Probably all unis have students mental health advisors now, they are usually very nice and understanding people and they may be the easiest to help you for the time being. They can give you advice what to do now and whom to go to, they can perhaps also help with telling your supervisor about it if they don't already know, or give them some advice how to best support you (they'll probably need that too). Perhaps it will be necessary to take some time off in order to get better (if so, it's probably better to do that than to keep struggling with life in general and a PhD on top until everything falls apart). It may be hard to predict for how long you would need to be off or working reduced times, but if they can give you some reassurance that this is not simply going to lead to you dropping out of your PhD then perhaps that should reduce the stress all this is causing somewhat and may increase the chances that you do get better and well enough to come back. In case you get signed off sick it is probably still worth to get in touch with them if you feel able to do so, because the less alone you feel with this the better and they can at least do that for you.

    Please don't suffer with that fear of what may happen on your own, it makes everything worse when there may well be several ways the Uni can support you now and in future.

    Do you know how to contact them (that Uni mental health advisor (team))? If not and if it's all too much at the moment perhaps ask someone to find out for you?   

  • The way to handle paranoia is to convince yourself. That most people only think about themselves and not you or other people.

  • I work with hydrogels, trying to understand them... it's quite fun... lots of numbers! I recently published work on 3D printing gels which was awesome to build! I work full time.

    I see, I also get very paranoid. Recently I've felt as though people we're coming to get me and I had a voice telling my to kill myself, which is not nice! Had to leave work this morning :/

  • Hi.  What's your PhD title and subject?

    Is it full or part time?  What institution?

    And no, I don't hear voices ( sometimes I hear bells or ringing), but I am obsessive and paranoid at times.