I got diagnosed with high functioning autism today

Hi

i usually don’t talk to people on forums but I felt the need to write down my feelings after today. I don’t know if people will read this but I think it will help putting it out there. 
I’m a female in my 20s and today I was diagnosed with high functioning autism. I didn’t really believe for a moment that it was possible that I had autism. It never occurred to me. I’ve known for most of my life that I was different to other people. People have always known me to be a loner who doesn’t make friends and just likes to stay in her own world. I like solitude and getting lost in my own head. I like to make worlds and live in them instead of living in reality. I always knew that wasn’t what ‘normal’ people do. I was told by my care coordinator who helps me with my mental health that she thought I had autism. It seemed a little ridiculous to me at first,  possibly because I knew very little about autism. I always put my differences with other girls to growing up without a mother. I love video games and books. I like my room to be dark and cold. I like the quiet. I don’t wear makeup and I hardly get my hair cut (mostly because I’d have to talk to the hairdresser Disappointed) and I love learning about new things all of the time. My dad usually calls me Spock because of how logical I can be versus emotional. It can be difficult to respond to other people’s feelings. 

Today was nerve racking and sometimes a little painful to face. The lady who diagnosed me was very nice. She had the lights off in the room. My care coordinator helped me while I was there to answer the difficult questions. When I got the diagnosis above everything else I was just angry. I’m angry that it has taken so long to get to this point. I’m angry teachers didn’t pick up on it. I’m angry doctors didn’t pick up on it. I’m angry my dad didn’t pick up on it. Today I got the answer to why I am the way I am and all I can think about is the bullying from school and the jobs I’ve had to quit. I feel let down almost. All of my experiences over the years created mental health issues that I think could have been easier on me if I knew what was really going on. I’m feeling a lot of things right now and I’m worried about the future. I’m going back for a follow up appointment in a few weeks to ask more questions if I have any. 

I guess I’ve been drawn to this forum because I want and need to know that I’m not alone in these feelings of confusion and anger. When I told my family I had high functioning autism today they didn’t seem surprised at all. My brother said it was only a matter of time. I asked why he didn’t tell me I might have autism and he said it didn’t really click until I told him someone else thought I might have it. 
Is autism really not that talked about? Do I need to hide it from people because they might not understand? Now that I’m home I have a lot of questions and I thought talking here might help.

Thank you for reading.

  • Thank you for your post, it means a lot I’m  older and just at the start of the journey. I haven’t been diagnosed yet, why does society see us as leper’s. This site is really helping me, we are all in the same boat and most importantly no one judges each other or nastiness.

    Good luck for your future, you will find your way in this world.

  • Welcome

    I'm 42 and I was diagnosed this year,

    up until 5 years ago I wouldn't even give it a second thought not to mention to consider it,

    In my country of origin Poland autism is still a stigma nobody wants to talk about, they think we are stupid and unable to live on our own without family support, best locked away in a mental asylum where nobody has to watch them, punishment sent by God on wicked family.

    you might find out that there is as many reasons to be angry as there is stars on a night sky, so don't let it burn you like Tassimo said.

  • Does it actually say 'high functioning'? I ask because I wasn't aware this was an official diagnostic term.

    They used that term in my debrief too. Not in the diagnostic letter. Not a diagnostic term, I think.

  • guess now I need to think about how to tell people and if I should tell people. I need to think about work and other things too. I need to figure some things out and honestly I’m scared of peoples reactions.

    Yes, this is a tough one. There are risks. The answer is individual. Much depends on the attitude of those around you and no one but you has the answer.

    I have a colleague who went through this too. We've both decided to be loud and proud. Be ourselves and advocate for others.  We've been lucky having positive people around us. No one can guarantee that. But do remember trying to conform where you don't comes at a cost too. It can lead to burnout x

  • I've only just seen your post.

    Most importantly let me say CONGRATULATIONS on your diagnosis. I'm 56, newly diagnosed too. I can identify with an awful lot of what you've said.

    Take it easy and unpick this slowly. It takes time to assimilate.

    As for all the people who didn't recognise it...well, my mum is 81 and upset she never helped me sooner. But how would she know? We are women or other more subtle presentations on the Spectrum. We aren't easy to spot. We don't fit the stereotype: the male straight model. My teachers didn't get it. The mental health services didn't get it.

    It's going to take time to process, grieve for the time you lost not knowing. But you know now. Your autism will have given you strengths too. In time you'll figure out what they are and how to use them and succeed with them.

    Welcome. Throw all your questions out here. Someone will always have an answer.

    I promise; you are NOT alone. X

    Ooh, just took a look at your profile...oh wow, you do know that there are companies in Silicon Valley for whom an ASD woman with a profile like yours is the ideal employee, right? Go, girl!

  • Welcome.

    Just another experience for comparison, it took me over 40 years before I sought diagnosis. Again I had some mistaken ideas about autism (for example, the empathy thing, the 'deficit' thing) that meant I hadn't taken the possibility seriously. Then I like to say it took me a year to work out what doctors thought autism was, and then another two to work out what it really was.  Mixed feelings and re-evaluation of my life, and some acceptance.

    Good luck.

  • That can be a blow when tested later in life mine came back autism +dd development disability which they tell me is also lower IQ.I think you may be lucky.

  • Welcome to hell is usually my go to on here for new comes but like the rest of us your probably already in it 

  • Hi Stormy, I also got diagnosed as highly functioning autistic person. I struggle alot with self awareness, habits of repeating the same things alot, even after saying that I will not do it. I struggle to self develop and I am not able make conversation and mind just feels blank. I didnot work on myself while growing up and uptil now just got comfortable with the same routine and work and never self reflected. I believe I had never paid importance to myself and just cared about other people and family.

    Is there a teams chat video service that people can speak to each other and discuss what they have gone through?. If anyone knows please can you share with me here.

    Thank you

  • It's a damaging label though and I don't believe professionals should be using them.

    Low support and high support needs is much better.

  • High-functioning autism generally refers to autistic people who have significantly developed language and independent living skills.

    UPSers

  • It's totally natural to feel scared. New can feel scary sometimes. But I think you've got this one.

    As for predicting the future, how people will act/react, anticipating what they will say—well that's where your fear comes from.  You can spend endless hours terrifying yourself with any one of those exhausting mental acrobatics.  As hard as it is to accept, it's impossible to predict, control or shape the future mentally. And even if it were possible, it would make no difference to our experience of life. Even if we got the future the way we wanted it, we'd always be trying to add a few extra changes. 

    Your only job is to square things with yourself. Check in with yourself and come to understand your reactions to the diagnosis. You're the one you live with. You're the one you wake up with, go to work with and go to sleep with. 24/7 for the rest of your days. You're the person in your life who you need to figure out.

    Other people will look to you for their lead. Most will react to us and treat us the way we accept and treat ourselves. Most will follow our example, but many will not. Some won't care either way. 

  • Hi Desmond and thank you for the welcome Slight smile

  • Welcome Home, Stormy!

    I'm sure you'll find like-minded people here.

  • Hi thank you for replying. The lady that diagnosed me used the term high functioning and autism spectrum disorder. I don’t really know what to use but on the way home my care coordinator used the word neurodivergent which I think I like better. She also mentioned Aspergers but my care coordinator asked about that and the lady said that they use autism spectrum disorder now instead. I have questions about that too which I think I will ask about next time I see her. 

    I think you’re correct about anger. It’s not very useful to feel it and I know people can’t be omniscient especially regarding other people, I guess I just wish things were different but I also realise I’m lucky to have got the diagnosis at all considering people go through life without knowing. 

    I guess now I need to think about how to tell people and if I should tell people. I need to think about work and other things too. I need to figure some things out and honestly I’m scared of peoples reactions. I came here to try and help me figure things out.

  • Congratulations on your diagnosis. Does it actually say 'high functioning'? I ask because I wasn't aware this was an official diagnostic term.

    You're starting a long journey of self-discovery. It's good to feel anger; it can heal you. It's an emotion and it has its right to life. But once you feel it, you must let it go. A very wise person once said that holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.

    You have to put your experiences into perspective if you want to remain sane and move forward. It might be helpful to think of the thousands and thousands of people in the past who have lived, died (and had difficulties) but who never knew they were autistic or that autism was even a thing.  All those people. No one can ever make it right for them. So, yes, you can feel angry for getting a diagnosis later in life. Or, you can count yourself as extremely lucky to be alive in this time and to receive a diagnosis at all. There are two ways to be diagnosed later in life—one is with anger and one is with gratitude.

    As for your brother, I often hear people say they are angry with their families or friends for not diagnosing them, or not spotting their autism. Well, contrary to what most of us think, for other people (our families included), we are not the centre of their universe. They, like us, live their lives focused on themselves, their own troubles, feelings and experiences and rarely pay much attention to anyone else.

    They are no different to us.

    How many people in your family have you diagnosed with autism lately?  

    Be gentle and kind with yourself and, by extension, with everyone else.