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Undiagnosed Lost, broken down, searching. asd/adhd/anxiety/depression/suicide. waiting list for therapy.

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nettlefield

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Hello all.

I'm a 20 year old female suffering from a range of mental/neurodevelopmental conditions. PTSD is not among them, so I'm afraid it might be inappropriate of me to post here, please do tell me or remove my post if it is. I truly don't wish to cause any harm or offense. What I am struggling with is trauma which has contributed to my being in a complete shut-down for the past several months. I'm struggling to function and struggling to find anywhere I can talk about these things. I've seen some posts by other undiagnosed members so I really hope it's okay.

The following got too long as I wrote it so I will fill in the least important parts with a different colour so you can skip past it as this will likely get too long to read.

<moderator edit to remove color & add quotes to differentiate content>

I grew up with undiagnosed autism spectrum disorder and ADHD. My parents were young when they had me. My mother had a series of miscarriages throughout the years after my birth. My father was very emotionally unstable and had problems controlling his anger. We lived in council housing and when I was a few years old we were moved to a different area of the country with less than a day's notice.

We were moved into an area populated by an ethnic and religious community who were not very accepting of 'outsiders.' I was singled out at the new school for having a different background to my classmates. Mothers would tell their kids not to play with me on the streets. Kids would continuously tell me that I didn't belong here, trick me into humiliating situations, and one even threw rocks at me. My first teacher hated me. She would continuously send me to the principal's office for no reason I could understand, but when my parents would ask what I had done, would refuse to answer. During extracurricular activities, she would tell me to stop participating and go and sit on the benches by the side alone (again no-one could get any answer as to why, but I was distraught.)

At the end of that year my mother and I travelled to stay with her parents. My father stayed at home. When we returned, there was another woman staying with him. They had trashed the house, every part of it, including my room, toys and dolls. We were so scared and confused. He had been having an affair and my parents' relationship broke down. Ultimately, at age 6, I was taken to live with my grandparents in a different country. My parents stayed living (separately) in my birth country, my mother with a new partner. I barely knew my grandparents or the language and struggled to understand what had happened.

The worst part came some years later when I moved back to my birth country to live with my mother and her new partner. Again I struggled with the change and developed severe social anxiety. My relationship with my mother and stepfather went quickly downhill. My parents saw what we now know to be ASD/ADHD/anxiety behaviours without any intent whatsoever to annoy or disrupt as my being intentionally difficult and misbehaving. They started physical 'discipline' whenever we had a disagreement or whenever I was audibly or visibly upset. They seemed to lose control while doing this and would hit me hard numerous times on the back of the head until I felt completely stunned. If I audibly cried it would anger them and they would start again.

I felt like they had been possessed and waited for them to completely lose control. I felt that they hated me and wished I had not come back to live with them. That they would be happier if I were dead. Sometimes my mother would try to hug me after hitting me and be angry if I resisted. She would come in and out of my room, one time calm, another furious. I never knew which it would be. After one such episode I confronted her about it and she denied doing it. She called me a liar and various other names. She said that I was crazy and making things up. They told me that I was lucky to have them because any other parent would not be so tolerant of me and would punish me a lot worse. For some months I remember this happening almost every day. This stopped when I got my first referral to mental health services but went on for years on a less frequent basis. When it came to a point where they rarely hit me, I started harming myself in situations where they would previously have done so.

I also had horrible trouble at school. I could not fit in socially and would dissociate from horrible anxiety a few times every week. At these times I felt utterly unreal and unalive, confused and detached and seemed to forget how to and be unable to voluntarily move my own body. Teachers did not understand what was going on and I couldn't communicate it. The first time it happened, they concluded that I was having a panic attack, but after that, they alternately acted like I was invisible and yelled at or told me off repeatedly for having gone mute. As in most schools we were literally locked inside and there was never any way for me to physically escape. It got to the point where it was unbearable to enter the gates in the morning knowing I would be locked inside and go through inescapable mental hell for the day. I dropped out of school with severe depression. For months I had nightmares about being trapped in school and people telling me that I had to die & planning my execution for being evil. Years later these dreams reoccur when similar stressful feelings are brought up.

I wouldn't have dreamed of calling any of this 'trauma' until I went to therapy and my therapist gently brought me to see it as such. In my mind, I was just bad, deserved to die, and had gone through nothing as compared to everything else -- what I had gone through was all my own fault. But the fact is I only managed to tell my therapist about a quarter of the above. I could never bring myself to tell him about much of it, particularly my parents hitting me. I felt so ashamed and like I would be betraying them.

Early this year I attempted suicide having started on an antidepressant which made me lose all inhibitions and spiral completely out of control. I was in hospital for a few days and in absolute terror of going home once physically stable in fear that I would be 'taken over' again. Since then I have barely been able to function. I went through periods of genuinely believing that everyone, including my psychiatrists, wanted me to die. Of breaking down and sobbing in terror and desperation outside doctor's offices.

Medication made me able to sleep and eat and think again. But I can still barely go outside, leave my bed, or open the curtains. I want desperately to go back to study or work but rarely even manage to shower or brush my teeth. I feel like I'm a small child all over again, dependent on adults (still living with family, who are transformed people now), unable to manage my day or organise my tasks. I feel I need complete guidance (which of course I can't get) in everything I do because the part of me which guides me through my day and tells me what to do and how is gone completely.

I've been on waiting lists for more therapy for months and don't know how much longer it will take to come through. It could be a year; they suggested it would be some more months at least.

Am I alone? I'm searching desperately for answers. I know this probably isn't the right forum but I've searched so long and still not managed to find any place where I can be open and people will understand. I'm sorry if this is the wrong thing to do. I'm sending love to you all and hoping that it's okay for me to be here for a little while.
 
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Welcome. I have a daughter who has asd and in early twenties. She suffered a lot at school. She is getting better as she grows through being away from those situations and developing the skills that are strong in her and make her happy. She is a great artist and writer so she does a lot of that. There is not a lot of support for autism spectrum disorders and mental health. As her mom I've come to understand the things that get skewed by the asd misunderstanding in her communication or comprehension and try to keep that in mind. I'm sure here for general conversation purpose of support people will rally around you. For therapy find one who has a background in working with asd and trauma, not just trauma. I know that my daughter does not like mindfulness and can tolerate learning some cbt skills as long as her councillor makes sure she understands and doesn't jump all over from one appointment to the next. Take your time in accomplishing a goal. When my daughter is struggling I encourage her to use her iPad apps that help her get organized independent of me. Hope something helps in what I'm saying and welcome.
 

Thank you so much Links. I really appreciate you taking the time to read and reply with so much kindness.

I'm glad that your daughter is getting better as time goes on and it gives me hope to hear that. I've also found that there is very little support for autism spectrum disorders particularly. I received no real help after diagnosis besides the diagnosis itself as a pathway to reading about it and better understanding the problems I faced. But there was no kind of therapy offered at that time, or guidance as to what to do next. The only thing they could offer at the time was to direct my parents towards a support group but they only went for one session as they didn't find it at all helpful. The main therapy waiting list I'm on is with a specialist ASD service, but it took over eight years from diagnosis, frequently having to seek help, and a hospital admission to even be told that this service existed.

Over many years my mum has also come to understand at least some of the things that get skewed in communication or comprehension by the ASD. In the past few months she herself has apologised admitting that she completely misunderstood and mishandled things at that time when I was younger. She told me that as a young parent she didn't know what to do and was told by parents around her that if I caused conflict or trouble (even though I never had the aim to do this but upset people by shutting down, melting down, misunderstanding, trying to run away or escape from situations e.g. family dinners where it was innappropriate but I felt completely overwhelmed sitting in place) that she needed to physically discipline me.

She said she realises now that she took it too far and that it made things so much worse. She explains that she just wanted all the problems to stop and didn't know how else to make them stop other than physically & verbally lashing out at me. I accepted this but deep inside I think I will always feel personally responsible. I always had to apologise after these conflicts, and had to sound sincere enough, even though I often didn't know what for exactly or had in the distress completely forgotten, besides 'being bad' 'being horrible.' In my head I was apologising for existing, doing 'everything' wrong and being the cause of everything bad in our lives.

They responded in a harmful way that convinced me that they hated me and wanted me gone, but if I had been a better child and had not made their life so hard then they may not have been put in a position where they felt compelled to do that, or at least not so very often. In fact on the deepest level I feel responsible for everything harmful that happened and still feel like I am wrong for continuing to be here and often feel a cold pressure like the thoughts of other humans around me that it is my obligation to make myself disappear. I have a compulsion to apologise constantly to anyone I'm around for any small thing that goes wrong or often just for being there (though I don't say so) particularly to my mum and I do numerous times every day but it does not free me of that pressure.

Apps that help with getting organised sound like a good idea. I don't have an iPad but will look into if there's anything like that which I could use on my laptop. And thank you for reminding me to take time in trying to accomplish goals. That is something I struggle with too.

Thank you again for your welcoming response. I very much hope that things continue to move in a better direction for you and your daughter alike.
 
Just remember one thing . . . No one with a mental illness chooses it!!! So stop blaming yourself. It's not your fault. Mental illness is not a choice but recovery is. There are a lot of people here that will listen if you need to just get things off your chest or will give advice if you ask for it. You hang in there and believe in yourself. I pray you find the right counselor and begin the journey of finding out just how great you are!
 
A concerned spouse, thank you so much for your kind words. Rationally I know that you are right -- I did not choose this -- but internally it's hard to stop blaming myself. I will keep your words in mind and hope that one day I can change this. I hope that today is peaceful for you and that things soon start to look up for you also! x
 
Nettlefield,
Recovery is a choice that takes much courage! You have made the first step. I hope you will find someone to help you with this soon, and I agree with AConcernedSpouse, "I pray you find the right counselor and begin the journey of finding out just how great you are!" There are many good people in this world... K
 
Nettlefield,
Recovery is a choice that takes much courage! You have made the first step. I hope you will find someone to help you with this soon, and I agree with AConcernedSpouse, "I pray you find the right counselor and begin the journey of finding out just how great you are!" There are many good people in this world... K

Thank you so much Kaleidoscope for your kind and encouraging words! You and all the others who have replied have already shown me that there are many kind & good people on this forum. :) I really hope that your own journey too soon leads to the better and more peaceful places which you deserve to experience. xx
 
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