Published on 12, July, 2020
Hi. I guess I don't really know what I'm doing or why I'm writing this. I don't even know why I joined this forum exactly. I'm not from the UK (if that's even allowed), so any suggestions for local resources won't really help me.
I guess I feel like an alien. I kinda like the term alien, since I follow a comic creator whose comic is called "ADHD Alien." I found it after receiving an ADHD diagnosis last year. Since then, I've learned a lot about ADHD, as well as how much it has in common with ASD. In fact, some sources say that in brain scans of ADHD and autistic people, there's no difference except that they're both different from neurotypicals. Not to say they're the same, just that scientists haven't figured out what part of the brain is responsible for which. I'm really into medicine and anatomy so it fascinates me.
Some days, ADHD feels like it fits. My meds work, I've improved a lot with them, but other times, I still feel like I'm not who I tell people I am. I'm chronically ill, I'm bipolar, I'm ADHD, I'm an artist, I'm a writer, I'm... weird. I don't have friends. I can't make friends. When I do, they often turn out to be abusive, even years and years down the line. Last year I flew across an ocean to visit friends for my birthday. By Christmas, they had abused me so bad, I'm pretty sure I'm now having symptoms of PTSD too.
I don't get people. I don't really care about how they feel, any more than is socially necessary, assuming I understand how they feel at all. At the same time, everyone says I care a lot. I don't think I do, maybe only sometimes with people I really like? I'm more concerned with what they think of me or how they're going to treat me if I say this or do that. It seems like everyone around me gets along... like they're part of an inside joke I was never privy to. I'm told I talk too much, I'm told I'm weird, I'm told I'm obsessive and no one cares about my interests. I understand fictional characters more than people, so I like to roleplay. Like I can make another person who makes sense. I don't voice call or FaceTime to get through this pandemic... I just stuck a bunch of googly eyes on stuff until I laughed for ten minutes straight. I joked to everyone that they all told me to "make friends" so that's what I did. Not quite what they meant, I know.
I feel like everyone is just trying to fix me and make me more normal. Maybe that's why I don't spot abuse until it's too late. I think they're being nice because they say that they care.
I'm alone and I've always been alone. I think this pandemic has brought out more questions because I keep being asked... will I go back to school? Will I get a job? I'm on disability now. And I don't know. Going back to school has never been great for me. I don't do well. And I just go to class (assuming I feel well enough) and go home. Everyone says to get a study buddy to help me but I can't even make a friend. I'm in my mid-twenties and I just sometimes feel like it's easier to stop trying to include people in my life. That maybe if I finally try hard enough, I can do it all by myself.
I feel more myself alone anyway. I can flap or rub my hands together and touch myself and bite (gently) at my hands and no one looks at me weird or tells me to stop. I can have a meltdown and no one yells at me. No one tells me to "grow up." Sometimes I feel like I'm still a kid because I don't understand my emotions or people and even though I feed myself and stay clean and pay my rent and bills, I'm stagnant. I don't grow. At least, the kind of things I've survived aren't the kind of things you can put on a resume. I fight so hard for justice and accessibility and still don't feel like I belong in any space.
Everything lately makes me feel angry and hated and alone. I guess that's why I'm here. I'm hoping maybe I'm not any of those things. That maybe I'm just me and that's okay. I can't get a formal diagnosis (even though I'm pretty obsessed with formal diagnoses; doctors don't get it, they ask why it matters and I say it's because I want to know and understand but they just tell me it won't change anything) because of the pandemic. Everything is closed down or I'm a low priority and I'm high risk so I can't go see a doctor anyway. I don't have anyone to talk to and it's starting to feel exhausting, wondering if a part of me is missing, all by myself. I don't want to self-diagnose because I don't like it. Not when anyone else does, but for me. Official diagnoses are made by doctors and scientists and experts. It's more exact, it's made on the basis of criteria and differential diagnosis and comorbidities. Even though I understand all these things, if a doctor confirms it, it's almost like peer-review (even though I'm not a doctor myself; I wish I could be.)
I'm Josie, by the way. Maybe I should have started with that. It's not my real name but it's a name. It's about as meaningful as any other one I use. I'm also a non-binary femme (she/her) but you can call me a woman if you want. I don't really fit in anywhere else, either, as you can see.
I really needed to get this out somewhere.
EDIT: I don't mean to use the alien analogy to be offensive. I just feel like it describes me best. Like at some time, before I was born, I existed somewhere and I decided to be born as a human and I made a terrible mistake in doing so. I thought I'd learn to understand other humans, but I just don't. I exist in my own world and sometimes it's okay but sometimes it's terribly lonely.
Wow Josie! With friends like that, who needs enemies? You went to the trouble of flying across an ocean to spend time with them ... and they're willing you to hurt yourself?? Hope you find some worthwhile, caring people to spend time with in the future. I cannot understand how humans can be so cruel to one another.
I had online friends but turned out they were incredibly abusive. I flew across an ocean to visit them last summer and by Christmas they were calling me annoying and said if I continued to be a part of their group, other friends were threatening to cut off anyone who still kept me around. Before that, my last group of friends tried to get me to kill myself.
I don't do well on my own because every person I've never been friends with has told me how worthless I am.
Hi Josie and welcome :)! I’m alot like you, but probably less lonely by myself as I do well on my own. I have online friends, but don’t go out of my way to be social, as I feel happiest when I’m doing my own thing(art, sewing, solo sports, exploring etc). Like you, I avoid the phone and facetime as much as possible, to the point of not answering calls, preferring texting and email. It’s ok to be different, in fact, I find it liberating. I’m not from the UK either, though I moved here. I’ve lived in a number of different countries as I love travelling and exploring. I really loved living in the US, but am enjoying England now.
I did get a call from my GP but she cannot assess me. I'm not in the UK so I don't have access to the NHS. Here, autism assessments can only be done by someone qualified and either it costs ~$2000 privately or is a 1-2 year waiting list to be covered (I've already gone through this with ADHD). I'm already on disability, I can't afford the test privately and the waiting lists are just ridiculous. We don't have many specialists here because the government doesn't bother to fund them.
I've learnt that the only way to find out if you're autistic is to get assessed by professionals. I was very resistant to my GP's referral to an autism assessment at first because I believed the stereotypes about autism and didn't think they fit me but now it has made sense of most of my life. You mention that you can't see a doctor because of lock-down restrictions on high-risk people, of which you are one. I wonder if you could call your GP instead? Most GP practices have converted to telephone appointments so unless your practice is overbooked you could book an appointment and express your suspicions? Then they may be able to refer you to an assessment. And since the waiting list on the NHS is a few months (at least for me), the lifting of Covid restrictions would be just the right time for you to attend the assessment. I don't think there would be much of a backlog as those who aren't high-risk, as you are, would probably be allowed to proceed with their assessment during this time as it's a health concern.
Thanks. I tend to get things out all in one go. I really dislike that autism was so stigmatized (well, still is) when I was a kid that I just thought it was the non-verbal toddler or the kid in "special ed" classes. I find that I don't really go... non-verbal? At least, it doesn't seem like it, because I don't always talk much anyway. But sometimes I go... non-typing. Like people offer to talk and I want to but I just can't make myself say anything, even though it's just typing. Like I go blank and I don't have the words for it anymore.
That's kinda where I've been at a lot lately. I don't have the words for what I'm feeling.
I did tell my GP and she's going to reach out to colleagues to try and find someone who can properly assess me. But... with COVID, healthcare is hard to come by and I'm high-risk so I haven't been out in months now. And I mentioned I'm not from the UK so our healthcare is a bit different than the NHS. Not US level of different, but just still really hard to find specialists and our GPs aren't really allowed to do much other than standard tests and physicals. So it's tougher to find the resources. Even chats and forums aren't really well-supported, I find.
I also just sometimes think people won't want to hear from me because I get told I'm "too negative." And... it's not like I mean to be, there's just not a lot to be positive about lately. I'm stressed, alone, confused, and the world just gets darker everyday.
Thanks for the recommendations but I'm not actually from the UK (or Europe) so that would be a very expensive phone call. I might try the message version though.
Hello Josielynn,
Welcome to the Community.
You may like to contact our Autism Helpline team who can provide you with information and advice. You can contact the team via telephone on 0808 800 4104 (10am – 3pm, Monday to Friday). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser. Alternatively, should you prefer to send a message, you can do so via their webform:
https://www.autism.org.uk/services/helplines/main/form.aspx
Best wishes,
Elena Mod
Hi Josie!
Welcome to this forum! I'm new here as well!
josielynn said:I still feel like I'm not who I tell people I am.
That is actually completely normal. In the field of psychology this is known as a "persona". It's the version of you that others see. It doesn't only affect people with psychological disorders. It affects everyone!
But yeah,it's probably worse for people like us with Autism...no one understands what I'm really like either. Not even my parents!
josielynn said:I'm... weird.
No you are not. I hate that word. A lot. I prefer the term "unique". And that is really what you are. ASD is really rare. People always think of ASD as a bad thing because it is classified as a disorder but those people just look at the bad parts of it. If you learn to manage and to deal with the negative aspects of it then it can actually be a superpower. Being able to have a stable routine every single day and some very special interests is amazing! Not many people have that luxury. At least that's how I like to think about it
josielynn said:I feel like everyone is just trying to fix me and make me more normal. Maybe that's why I don't spot abuse until it's too late. I think they're being nice because they say that they care.
That's not good. If you really have ASD then there is no way that can be changed. At it's core ASD is a neurological condition. Your genes determine how your body and brain develops and if you have ASD genes then your brain is just wired that way. That's just the way that it is. Your "friends" can't just change your brain anatomy. Again though,that's not a bad thing. You can learn to work with it. I'm in therapy because of that right now and it's going really well!!
josielynn said:I'm alone and I've always been alone.
I can totally relate to that. It is really difficult for us to make friends because very few people can relate to how we are. But that's why forums like this exist! It's so that like minded people can get to know each other,right? It's a lot easier to form friendships when you have something as fundamental as ASD with somebody else in common!
josielynn said:That maybe if I finally try hard enough, I can do it all by myself.
See,that's what I thought as well for a long time. And it's actually true. I was able to get to where I am today just by myself. And I'm proud of that but I've come to the realization that that sort of thing just sucks. We are social creatures. We are nor meant to go through life alone and having psychological conditions like the ones you have absolutely doesn't prevent you from making real friends who are actually supportive and not abusive. The way I see it is that you have just not been around the right people.
josielynn said:That maybe I'm just me and that's okay.
There you go. You said it yourself.
josielynn said:I don't have anyone to talk to and it's starting to feel exhausting
Josie,I can tell you that you have come to the right place! I am ALWAYS up for a nice conversation about pretty much anything! I'm sure the other people on this forum feel the same way!
josielynn said:Official diagnoses are made by doctors and scientists and experts. It's more exact, it's made on the basis of criteria and differential diagnosis and comorbidities. Even though I understand all these things, if a doctor confirms it, it's almost like peer-review (even though I'm not a doctor myself; I wish I could be.)
I couldn't agree more. It's very good that you want to get an official diagnosis and I think that's really important. I hope that you will be able to do that soon enough. ASD is a very unique condition like I said and you might not even have it. Maybe you just have depression or social anxiety or something like that. I think it's important that you let a professional figure that stuff out.
That was an amazing introduction Josie!! Really well done!!!!