I’ll try to keep this relatively short because I do have a tendency to waffle on about things that aren’t always relevant. I don’t really know what I want from this, maybe some hope from people who have some shared experiences. Anyway, I was diagnosed with autism last August and I honestly thought having an official diagnosis of my condition would improve my wellbeing/ make my life less difficult. Unfortunately, that hasn’t really been the case.
I’m almost 24 and I’ve been working since I was 18. I haven’t been able to hold down a job for an extended period of time and I’ve pretty much been constantly in and out of work either because of stress or being let go.
I’m currently too sick to work and I feel useless and embarrassed because of it.
My partner of 3 and a half years broke up with me quite recently which has been the most painful experience of my life so far. I still love her and the guilt I feel is crushing.
Now I’m back in my hometown now living with my family. My mental health is at an all time low and I recently had an appointment with a mental health nurse who told me multiple times that things like my self harm, not being able to hold down work, etc are simply because of my autism.
She’s written a letter saying that I don’t require any mental health support with the NHS. For context I have been self harming for over 10 years and recently had to go to A&E for the first time because of the severity of my wounds. Moreover, I’ve started having suicidal thoughts which I’ve never had to deal with before. Yet this isn’t enough to even be considered for treatment of any kind. I feel so defeated and I can’t help but ask myself,
‘If I wasn’t autistic, would I be taken more seriously?’
It feels like I’m not ‘autistic enough’ to get support from employers and the health service; yet too autistic to hold down a job, have a romantic relationship and just live a happy life.
I keep thinking about the day that both of my parents have passed away and my friends have families and responsibilities of their own; what will I do then? I’m scared that my quality of life will be so awful that there won’t be any point in carrying on.
At the moment everything feels so hopeless- I don’t want my disability to ruin everything. It’s very hard to be optimistic because I feel like I’m fighting a battle that I’m never going to win.
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littlegreenpigeon
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i feel you so deeply on this one i have autism too i find it hard to communicate and keep friendships even find it hard to speak to family even though i still live with my parents i have panic attacks nearly everyday especially if someone says they are coming round but because my mum and dad help me so much i rely on them for everything as i dont leave the house or work i think whats going to happen to me if one of them go because they wont be here forever its making my mental health honestly so bad i dont know how i will cope without them helping me i have never seen myself having a future all i see my life as living at home with my family i don't do my own shopping my old friends have their own life kinda like they've forgot about me i struggle and it makes me feel like everyone is judging me because i dont have my life together like they do i feel so alone im glad i have my mum and dad too support me but what will happen to me when i no longer have that support i dont sleep at night because thats what i worry about i need more support so ive been in touch with my doctors and getting some more help
I've found that the diagnosis itself can bring more questions than answers, because it suddenly means we're re-evaluating our behaviours through the lens of the word "Autism". I think for me it meant that I was still the same person, but perhaps with a word to explain why I do certain things and struggle with others.
But the diagnosis didn't take away the challenges I have to face every day. There will always be things that I find difficult, but as you grow and understand yourself more, you can also develop ways of responding to these challenges in a way that's healthy for you. It will be different for everyone of course, because everyone's version of autism is different the same way everyone on the planet has a slightly different brain! For me, I take time out to calm down if I've had an overwhelming day, to be on my own, and do something that helps me feel calmer and settled. I can find solace in some of my special interests, or hang out with my cats.
I can totally get you when you say "It feels like I’m not ‘autistic enough’ to get support from employers and the health service; yet too autistic to hold down a job, have a romantic relationship and just live a happy life." The way autism is often perceived in situations like the work place or the health service, versus who you are as an individual can be really frustrating. Plus, as women and girls, we're very good at masking so it can be less obvious how the Autism affects our day to day. I've often considered withholding saying I'm autistic, because I don't want people to see the label first and me second. On the flipside, it's useful information for people get a full scope of why we do things differently to others.
I would definitely recommend persisting with seeking support for how you're feeling and the self harm. It could be worth trying a different doctor/nurse for a second opinion. I did this when I was a teenager getting help for very bad OCD. You know yourself and when you're unwell and when the advice isn't working. It can be a bit of a slog but it's worth it when you get someone who gets you, if that makes sense.
There's also online support services which could be worth checking out...
IeSO is online counselling - iesohealth.com/ it's free, and available to many NHS patients across the UK.
If you're struggling with suicidal ideation (thoughts of suicide), then Papyrus are also a good organisation - papyrus-uk.org/ They're a charity for supporting people under 35 who are struggling with these things.
Also just having a chat with family or someone you trust to verbalise how you're feeling can be a release. It won't solve everything (that's a longer healing process), but it can be a gentle first step. And if at any time you feel worried that you might act on these thoughts, or you feel like you can't cope, then there is also Samaritans, 999, or tell someone you know and trust. I've been in those scary places, but i've also had to walk to get out of them.
These times when we're going through the aftermath of a breakup, struggling with mental health and all that jazz are always a bit of a journey. There's good days and really not good ones. Things keep moving and you won't realise how far you've come for a long while, but one day you might look back and go, wow. That was a really tough period, that was really hard, I don't know quite how it worked out but I'm know I'm somewhere else now.
When we're feeling at an all time low, the worries like the ones you described about your family passing away and you being left alone can rise up. They can get amplified in our minds by the pain we're feeling in the present moment. But that's the future, it's far away and not happening right now. And the future has just as much capacity to surprise us in a good way, in fact more ways than we can imagine, but our worries aren't designed to focus on those things. Right now, being 24, you're still wonderfully young, (20s is a strange and amazing, and also at times stressful and scary) period of life, but you grow so much in it too. I know who I was at 24 is different to who I was at 20, but also very different to who I am now at 28.
I hope this sort of helps in some way. I really feel for you, and send a big hug and hope you feel better in some small little way, even if just for a little while, each day.
Thankyou so much for taking the time to write out such a detailed and thoughtful reply.
It’s very difficult at the moment. There isn’t very much information about coping with heartbreak as an autistic person- I wish there was a guide or something aha. It still feels like a bad dream at the moment and it’s been almost two months.
I’ll have a look at those links that you suggested. I try to be open with my family members and friends but sometimes it is a challenge because I feel like I’m a burden on them.
I think we all sometimes wish these difficult times came with a kind of manual! I think all I can say is that with the heartbreak, it will be a healing process that will get better gently in it's own time. Two months is a pretty short time, you'll still be very close to what happened, so it's really understandable that it feels like a bad dream. I've seen it described as it can be like grieving.
There might be shock, numbness, anger, trying to act like it's fine, etc. Everyone processes these things differently, and everyone heals in different ways. There might be times when you feel okay-ish, and others where it feels the total opposite. There might be reminders that pop up that suddenly make you feel everything.
You might not notice over time how things are changing, but slowly but surely things will start to be different.
I've found a couple of internet bits about dealing with breakups here -
As for feeling like a burden to family or friends, definitely understand you there. It's so much easier to not ask for help, than to admit we need it.
On the one hand it means you care for them. When we're feeling bad of course we don't want our loves ones to have to take on the pain we're feeling. But, the flipside is that our family and friends also care for us. This can be hard for us to accept, especially when we're feeling at our worst. But love is a wonderful thing because it means carrying each other's burdens. Sometimes we have to allow ourselves to let others who are willing to take some of the weight we're carrying. For the people who are there offering to help, it's also a big sign of trust that we acknowledge our vulnerabilities to them, and we tend to bond deeper over these shared trials and struggles than we would in other ways. Our loved ones wouldn't want us to suffer alone. It's better to try and walk through this journey with someone with you
What do you enjoy doing what are your hobbies? Don't feel sorry for yourself its not helpful and not productive. The truth is everyone feels the same as you, its hopeful that you can impart some determination and I'm not keen on this word grit. Find one job you like pastry chef is a good one for autism and become passionate about it once you find your passion you wont wallow in your own malaise peace each day will be challenging but a challenge you want to take to task peace x
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I would love to know how I go about getting compensation for my sons ruined life. He is 23 and just got a diagnosis of Autism.
Is autism diagnosis worth having at age 72?
My story, my sons stories and trying to figure it all out.
Should I get formally diagnosed?
