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ASD & psychosis

I have been diagnosed with various mental illnesses that fall within a 'psychosis spectrum' since 1975 . That resulted in a myopia that had mental health professionals relating everything concerning me to those mental illness diagnoses. Mentions of autism went unheeded. Like a lot of people later found to have an autism spectrum condition the response to me from mental health professionals was less than adequately supportive, and at times very negative.

There are others who on getting the ASD diagnosis are kicked off mental health services books, despite having mental health problems alongside the ASD.

For me the dx only came through moving to a new area and under a more open minded pdoc etc. It also helped that my stepdaughter, who has worked with people on the spectrum, was there to back up my mention of autism.

IMO there needs to be a greater recognition that ASD and severe mental illness can occur together . That a failure to do so significantly lessens the probability of that person making the optimum recovery possible.

Anyone else had experience of ASD and severe mental illness?

Comments

  • HylianHylian Citizen, Mentor

    When I was younger and had even worse issues with mental health I probably had some symptoms of psychosis (some hallucinations, paranoia, etc.).

    I don't think I have issues with that anymore, but I honestly try to not think about that at all because I know if I mentioned it to a mental health professional it would either overshadow my issues with autism, or my autism would overshadow my concerns with that.

    I don't even want to mention my gender dysphoria to mental health professionals anymore because I feel like they concentrate on that or think I am attention seeking when I also mention autism. The last person I saw seemed irritated by me being trans and coming to her to get assessed for ASD, like I was wasting her time.

  • Statest16Statest16 Citizen, Mentor
    edited January 2021

    I was hard into drugs when I was younger and they made me totally psychotic.

  • KaramazovKaramazov Citizen
    edited January 2021

    I’ve never gone through a formal diagnostic process (I’m on the waiting list), but I have had ongoing struggles with depressive episodes of varying extremity (environmental factors at play I suspect): at the worst points in my mid teens through to my late twenties this did come with fantastical notions which my wife has referred to as psychosis... some self-harm was also involved.

    I also get a para-visual effect where it seems like the whole world is glowing with an inner golden light when I’m very happy: which is enjoyable, blissful even, but I don’t think it’s a normal manifestation of joy.

  • verityverity Administrator, Citizen

    I think it is important to have this recognition. I have known people on the spectrum with schizophrenia, and also depression with psychosis or mania. If people are being kicked off essential mental health services simply becuase of ASD diagnosis this is unacceptable. It is something mental health charities could help campaign against, and perhaps with ASD charities help

    There is very little excuse to this reductive approach for providing services. It is not as if the shouldn't know better by now.

    My cousin is schizophrenic but I don't know if he is on spectrum. He is very creative and works as a translator.

    Deepthought is Schizotypal, I know that doesn't nessiarily come with psychosis and is not necessarily severe, but i can have both.

  • At one point I was dxed with schizophrenia and disorder of gender identity. The 1st pdoc I remember having later went on to become head of the gender identity unit at Charing cross. It was made very obvious that due to my mental illness SRS would not be an option. I also came to the realisation that I was ill equipped practically and socially to cope with transition.

  • HylianHylian Citizen, Mentor

    @firemonkey said:
    At one point I was dxed with schizophrenia and disorder of gender identity. The 1st pdoc I remember having later went on to become head of the gender identity unit at Charing cross. It was made very obvious that due to my mental illness SRS would not be an option. I also came to the realisation that I was ill equipped practically and socially to cope with transition.

    I hear all the time that people with just autism (even "high-functioning" autism) are refused physical transition. I constantly fear that if I were to be actually diagnosed or recognized as autistic while trying to transition that I would be denied hormone therapy or told to stop it. My current primary care physician knew about me getting assessed and still thinks I can transition, but he wants to refer me to someone in another town because he's not comfortable giving me HRT and I am worried if that doctor becomes my primary care doctor he will not understand me as well.

  • IsabellaIsabella Citizen
    edited January 2021

    I've never been diagnosed with psychosis, but I do have mental health conditions which are considered mental illness and they're treated by psychiatry / neuropsychiatry. I have Complex Trauma, Combined ADHD, Major Depression (99th percentile), Anxiety with Panic Disorder (99th percentile), and quite severe Agoraphobia / Scopophobia. On top of all that I've now had two strokes. I've been selective mute since childhood.

    I know it might sound like a running tally ^. That's not my intent, although they are classified as mental illnesses. It's certainly hard to juggle all of it combined with autism. I can relate to what you've been through seeking appropriate diagnoses and care.

    All of my comorbids were diagnosed appropriately, but no one ever suggested Autism to me until I sought an assessment myself in 2018. My report cards from school and the anecdotal comments are glaring. Even my paediatrician's notes from childhood. It's very obvious now that I'm diagnosed and I'm baffled that no one connected the dots. You and I grew up in roughly the same generation and Autism wasn't considered for many students, especially girls. It's been difficult because I always knew there was more to it. I knew there was something more substantial, more developmental, which set me apart.

    My ASD diagnosis was clear cut and obvious. Moderate level. High risk / significant difficulties / needs significant support. All that banter. I'm incredulous that I wasn't diagnosed sooner, or that the psychiatrists who saw me in the past 20 years for trauma and depression didn't investigate my childhood. I wasn't born with trauma. I wasn't born with depression. These were the result of weak coping skills and extremely poor self-advocacy.

    I do have trouble having people remember that I have both ASD and mental illness. I have lots of doctors but each one seems to view me through the lens of their specialty. It's hard to be seen as a whole person. It's hard for doctors or therapists (or anyone) to appreciate the layers of distress and dysfunction evident when these conditions co-exist. Add in my strokes and permanent brain damage to my cerebellum (an autism-related part of the brain, incapable of neuroplasticity and responsible for nuance). I had a blunting of emotions which were blunt and vague to begin with, because of Alexithymia. It's a miracle I can string together coherent and self-reflexive thought because all of these conditions collide in my brain, and in my perception of the world.

  • HylianHylian Citizen, Mentor

    @Isabella said:
    All of my comorbids were diagnosed appropriately, but no one ever suggested Autism to me until I sought an assessment myself in 2018. My report cards from school and the anecdotal comments are glaring. Even my paediatrician's notes from childhood. It's very obvious now that I'm diagnosed and I'm baffled that no one connected the dots. You and I grew up in roughly the same generation and Autism wasn't considered for many students, especially girls. It's been difficult because I always knew there was more to it. I knew there was something more substantial, more developmental, which set me apart.

    My ASD diagnosis was clear cut and obvious. Moderate level. High risk / significant difficulties / needs significant support. All that banter. I'm incredulous that I wasn't diagnosed sooner, or that the psychiatrists who saw me in the past 20 years for trauma and depression didn't investigate my childhood. I wasn't born with trauma. I wasn't born with depression. These were the result of weak coping skills and extremely poor self-advocacy.

    Me and my mom are constantly baffled that no one mentioned autism or anything like that beyond me getting assessed in Kindergarten. I'm especially baffled because I was in special ED at one point, and had some of my nicer teachers give me autism-related accommodations.

    My school district was very shitty and underfunded though, so I'm unsure if they were just never allowed to bring it up to my parents or write anything in my files about it because I've heard school districts have to assist you in getting an assessment.

    Even though there's nothing directly suggesting autism, when I was looking over notes from elementary school I can see teachers hinting at issues. I think if there were more outright concerns in my records (that the psychologist who last assessed me looked at) there wouldn't have been as much of a doubt about diagnosing me and she would have gone through with it.

  • The 1st place to mention problems was my 1st school, in Bangkok, they persuaded my parents to have me tested for what we now call cerebral palsy. That was in the early 60s when the knowledge base was much slimmer than it is now. That meant alternatives weren't explored when the cp assessment was negative.

    There have been problems with physical coordination from as far back as I can remember. Had to have writing lessons around the age of 11 because my handwriting was so bad. About a year later was wearing insoles due to foot problems, and the headmaster's wife at prep school having me do exercises for my feet.

    I wet the bed most days for the first three or so years at prep school. During that time I never wet the bed at home.

  • verityverity Administrator, Citizen

    Wetting the bed at school is definitely stress related.

    I remember a child who have bad photosensitive seizure disorder.and ticks. Children and young adults could be so cruel and would try to photosensitive trigger his seizures. He wet the bed, and I suspect that was stress related. I think he had lost his mother not long before.

    I remember how dismissive the school was be about my being bullied.

    CP is a physical thing, but is amazing how often it gets confused with mental or intellectual problems. The word spastic has to do with muscle tone, but it has been so misused it can be used correctly. except in medical circles. I have friend with CP and autism, it is a common co-morbid.

    Dyspraxia and ataxia can also be co-morbid.

  • @firemonkey said:
    At one point I was dxed with schizophrenia and disorder of gender identity. The 1st pdoc I remember having later went on to become head of the gender identity unit at Charing cross. It was made very obvious that due to my mental illness SRS would not be an option. I also came to the realisation that I was ill equipped practically and socially to cope with transition.

    Misdiagnosis seems to be very common, especially with older people. Parents and mental professionals seem to be aware that something is "off", but often not understand what. There's been a lot of progress made, but I think we still have a long way to go.

    It gets even more complicated with people who can't work or apply for benefits, not to mention how hard it is to get any actual services as an adult, even after getting a diagnosis.

  • verityverity Administrator, Citizen

    My experience with mental illness co-morbid ASD as observer has some differences to my experiences as an observer with others with mental illness.

    I have known some that have had severe "non-psychotic" mental illness as an a very severe version of common and not so common mental illness like eating disorders, debilitating anxiety, OCD, major depression, self harm, etc.

    If we are talking psychotic and on the spectrum I have known two with persistent (and a number of people when have had psychotic breaks or less frequent episodes), one of which I have been there when they were psychotic as well as word salad, disordered thinking, it was difficult to know what to do I'm not going to lie, but lookign back I was not in danger, I have felt more in danger from people I have met up with I suspect to have personality disorders.

    The actual episode itself the main characteristics were quite similar to my cousin who also has schizophrenia (I don't know if he is on the spectrum or not). Although my cousin had more talking under his breath and rapid change in expression and demeanour, but I suspect that is more variation in schizophrenia or what presentation happened to appeared while I was there.

    What may be different I think is their ASD nature might come out in that expression or influence what they may talk about or their fears or emotional response. Any sensory issues, obsessions, etc.

    How does it manifest in yourself and how would you describe you experience in general?

  • In my case auditory hallucinations are very rare. I'm prone to functional hallucinations. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361849/ . In my case the washing machine can sound like people talking, but the words are hard to make out .Occasionally I have olfactory ones .
    I'm prone to paranoia about people getting into my flat. That can be accompanied by sensing a presence.

  • verityverity Administrator, Citizen

    @firemonkey said:
    In my case auditory hallucinations are very rare. I'm prone to functional hallucinations. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361849/ . In my case the washing machine can sound like people talking, but the words are hard to make out .Occasionally I have olfactory ones .
    I'm prone to paranoia about people getting into my flat. That can be accompanied by sensing a presence.

    Interesting I'd have had paranoia about the heating pipes clicking in university, and I believe that this was being cause by the students. Even if I moved building it would follow me around. These pipes did make noise but I was also hallucinating the noise when it is was not there. It didn't trigger voices. It is not uncommon for a brain to continue a noise such an alarm that has stopped or a bee buzzing, However in this case this could occur any time and was very paranoid in nature and stress related.

    Having said the student were actually bulling me by thumping on walls and ceiling. One set my door spring so that is was tensed it ripped the unit off the door. He didn't just do it to me but I was one fist victims.

    I has also had hallucination on waking up. Exploding head syndrome, if you haven't heard of it look it up. It is not some generic explosion sound it is incredibly specific and hyper-realistic load sounds, so for instance a tire bursting, a balloon popping a buzzer, an exploding pressure vessel, fireworks, gunshot, and topic high explosive explosion, ears popping an ringing, etc. Again not psychosis and not to meant to trivialise psychosis in anyway. It can be a little bit scary but not for long nowadays becuase I recognise it.

    I have had night terrors when stressed, and I am combative. I destroyed two clothes horses by getting up an attacking them in the middle of the night, while screaming. I punched a door frame and hurt my hand. Punched the air.I have sent the impression of a person or skull.

    Other time I have found myself waking up standing up, I had been sitting on the bottom of the bed so must have walked there.

    For me I think dreams come closest to disordered thinking that I have experienced in others. This is becuase your actions and thoughts makes sense in the dream, but often make little sense once you have woken up and thought about it, but there is contextual stuff which the brain is trying to make sense of. Again not meaning to generalise or trivialise, it just helps me relate to my cousin or others. I have heard they did do research on various sleep states and brain activity in schizophrenia and found some similarity between some activity, but not exactly the same.

    My most extreme hallucination was on drug call Aricept which for Alzimers, but was prescribed to see if it would help my executive dysfunction. That is a whole other deal i have talked about elsewhere. That was probably the most scarerest loss of reality I had.

    I have definitely had anxiety disorders. I know a lot about how anxiety disorders work from treating mine, and how to approach them, the thought patterns and behaviour, etc. I know that psychotic anxiety is a whole other thing. It is not simply just related to an irrational fear becuase an irrational fear is usually founded something would could experience or believe and there is typically a reason however irrational (not all anxiety is irrational). The psychotic fears I heard from people the reasons shifted and weren't necessarily consistent, and could be contradictory, within a short space of time with no rational explain as to why. Or the explanation didn't have much to do with the fear. It was like the whole of existence was morphing for them. However I do think their anxiety and fear they would have had anyway, fed into it. Stuff in their envirment or could experience was in there in some part.

  • HylianHylian Citizen, Mentor

    When I dealt with what seemed like aspects of psychosis I had a lot of auditory hallucinations, and some visual ones that I can't really remember what they were at the moment. A lot of my more memorable auditory hallucinations were like someone was yelling right in my ear, and one time I heard a woman's voice scream at me to "shut up" which freaked me out because no one was around me. I also heard people call my name a lot of the time, which I know happens to people sometimes as in they mistake a sound for that, but I used to hear that clear as day, multiple times a day sometimes, and would confuse my parents because I'd ask why they called for me.

    I was also paranoid and at one point thought that people were going to hurt me, which made going in public really stressful because I didn't trust strangers at all. I thought everyone that got near me was going to assault me or something, and thought my friends were talking about me behind my back and planning to mess with me in some horrible way.

    I don't think I really deal with this anymore unless I'm having a really bad depressive episode, which is a relief because living like that was stressful. I don't know if it was just puberty messing with me or something because anything like that is relatively benign and infrequent in comparison now.

  • @verity said:

    I have definitely had anxiety disorders. I know a lot about how anxiety disorders work from treating mine, and how to approach them, the thought patterns and behaviour, etc. I know that psychotic anxiety is a whole other thing. It is not simply just related to an irrational fear becuase an irrational fear is usually founded something would could experience or believe and there is typically a reason however irrational (not all anxiety is irrational). The psychotic fears I heard from people the reasons shifted and weren't necessarily consistent, and could be contradictory, within a short space of time with no rational explain as to why. Or the explanation didn't have much to do with the fear. It was like the whole of existence was morphing for them. However I do think their anxiety and fear they would have had anyway, fed into it. Stuff in their envirment or could experience was in there in some part.

    A bit off-topic, sorry (I have no experience with psychosis and nothing to contribute), but I've seen you mention before you made great progress in regards to anxiety. It would be great if you could share more on the subject in a different thread.

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