I'm 21 and I was recently diagnosed (2 weeks ago). I've been going through the diagnosis process for about 2 years but when the psychologist told me I was on the spectrum, I burst out crying. I had expected it but it just made it real. I can't really explain how I felt. My mum was with me when the psychologist was going through the report of my results from the tests and explaining about Autism etc.
I was the one who suggested getting assessed as I always felt like there was something different about me. My family always thought I was just shy and that I would grow out of it but I got to a point where I just knew that it was more than shyness, I couldn't change how I am.
During the few weeks of my tests, my family were constantly saying that they didn't think I had Autism. I would tell them reasons as to why I thought I was Autistic and they would say stuff like "Don't be stupid" or "When I was your age I was quiet too!". They were probably trying to make me feel better but it was really invalidating.
Even after my diagnosis, I feel like they are still the same. Nobody has asked me questions about my Autism and how it makes me feel or how they can help accommodate me and make things more comfortable. I just feel like they are in denial about it. I'm very quiet and reserved so I think a lot of my symptoms are hidden and for the most part I understand what is socially acceptable. This probably makes it hard for them to believe I have Autism?
I'm trying to figure myself out still and a lot of things are making sense. The fact I hate sharing my things, or people touching my stuff and I really dislike water in my face. I've tried discussing this stuff with my parents but they brush it off and I feel like they think I am putting it on and being over dramatic. I am just discovering why I experience these things and everything is clicking and it makes me feel better thst there is actually a reason but I don't feel like I can discuss this with anyone.
I just feel very alone and that my family aren't even trying to understand my diagnosis and in fact are acting in a way that really isn't "autism friendly" :-(
Has anyone else had issues with this?
Sorry for the rambly post!
Hi there - and welcome to the community!
Don't apologise for the post. It was an interesting read, and chimed a lot with me.
It's natural to get mixed feelings with a diagnosis. Some people might feel like it's a burden to carry around. I was finally diagnosed two years ago, aged 56, and of course I often wonder how much difference it might have made to my life if I'd been diagnosed earlier - in childhood, preferably, as the signs were all there for anyone who knew what to look for. But it wasn't really known about then in the same way as it is now.
Overwhelmingly, though, the diagnosis has been been a positive thing for me. It's enabled me to make sense of my life at last. It's improved my mental health because now I have a context which can help me to explain my depressions and anxieties as very natural reactions to certain circumstances. Also, it has enabled me to request reasonable adjustments in the workplace. The positives, in that sense, outweigh the negatives for me.
On the other side of it - like you, I've experienced, and continue to experience, an unhelpful reaction from my family. My mother is the only person who understood, and whom I could talk to about it. Sadly, she's no longer with me. With the rest of my family, bar my niece, it's either never discussed - or it's regarded with suspicion. My brother, for instance - as you've experienced - tends to 'normalise' everything. 'I do that, too. Everyone does that.' and so on. He seems completely oblivious of the fact that he has a settled life with a nice income and house and a huge social circle, with friends dating back to his schooldays fifty years ago - whereas I (the only one in my family with a degree) work a minimum wage job, live in a rented flat, have a string of failed relationships behind me, and have NO friends (apart from the people on this forum). I don't feel lonely, though, because it's how I've been for most of my life, since I started to isolate from others around the age of 10. I generally, at that time, found other people to be difficult at best, hostile at worst. So it made sense to me to leave them to their own devices and focus on me and what I liked. I don't feel lonely, no... but I feel 'alone' in that sense of lack of understanding with my family. I tend not to worry about it too much. They can think what they like about me, as they certainly seem to like what they think - and little I can do is going to change that thinking. I've accepted that it kind of goes with the territory when you're talking about 'head' conditions - whether autism, mental illness, or combinations thereof.
You learn to live with people thinking you're being fussy, over-dramatic, 'delicate and sensitive'. I often think it would be so much different if you had a visible, physical condition that everyone seems to know about and can identify with. If I told my family I have cancer, for instance, they'd probably be all over me with offers of help and sympathy. As it stands, they leave me to it. And that suits me, really, as I've said.
Sorry... this is going to sound a little patronising and paternalistic... but you're young yet. There is a lot to learn as you go along, and I can understand how difficult it must feel just now. At your age, I knew there was something 'different' about me. I just wasn't like anyone else. I didn't go out much. I didn't make friends. I didn't understand what made other people tick. I've only in recent years learned about things like flirting, and other body language. I simply didn't 'get' them at the time. And I had long periods of anguish because of all this, because I didn't know why.
You've come to the right place. You'll be listened to here and taken seriously. It's a friendly community of peers, and we all listen to and help one another. Take a look around at some of the threads. And keep talking! We're kindred spirits in this journey.
All the best,
NAS24164 said:Has anyone else had issues with this?
I could have said just that, really, instead of my usual waffle!
Tom has pretty much said it all, Reading how you feel makes me very sad as I hate the thought of anyone suffering on there own, I have recently started giving out "virtual hugs" so here's one for you. I may have to change my user name to soft old thing! After all I'm a bloke aged 54 hard as nails! Yeah right?
Years of showing no emotion and hiding my feelings but being on here I feel people will understand.I started hugging my work mates,only the ones who were ill or very sad but it took them by surprise, if they give me a wired look I tell them it's the new me,I still don't hug females as it may be inappropriate and could get me into trouble.
I have told most that I am autistic,some say "makes sense mate" others belittle it and say"yeah but everyone does stuff like that" or worst of all "you can't be autistic as I know someone who is and they can't talk or rock back and forth or have tantrums about all sorts of little things.
Some I try to educate others are never going to change.
As I explain some of the key points they start to see how it is me and always has been.
I went through a process shared by many,shock,disbelief,anger,joy and lots of tears as my whole life was there in front of me to read, I now have to say I am not formerly diagnosed as even now I know I am but due to others casting doubt through ignorance I feel a fraud. That last sentence has reduced me to tears as I feel I have found my people but don't have a passport to prove it.
Right deep breath,,,,,,,,,I cannot wait to see your chosen user name,make it cheerful if you like,as you can see your so called ramble is nothing compared to some of us ha ha, join in and be part of our colourful world, you are never alone here.
I don't have a passport either...
keep giving out those virtual hugs and hang in there
Thanks x have a hug,
Cheers...have one back...
and here's one for Mr T ...
Welcome. You exactly described my families response to my diagnoses. I am very alone sometimes that's a blessing. But I also get very lonely too which is a different thing altogether. I haven't yet worked out how to deal with the family thing as you describe. I have come to the conclusion that we can ask for accommodation at work/school/college but not so easy in the family unless you are lucky. It is quite fascinating in some ways to find out things about ourselves which seem totally unrelated but actually fit together. I hope as you are able to use your new knowledge to help you find ways to make a difference. At 21 I too had long since felt I didn't fit in and it doesn't feel good does it.. Some areas of the country have more support than others and for different age groups. It would be worth you checking up on the nas website to see if there is anything in your area..
hey I am three years older than you and was very recently diagnosed also! my parents had always suspected asperges but never aced upon that because like you I was shy and reserved and they didn't think I was suffering however I was. the best thing you can do is be patient read up on it get some outside support but more than anything accept yourself for who you are and don't see it as a negative.