When you first suspected you were autistic as an adult

[Rectify]

How did you react? Was it a relief? Did you feel despair that it meant you would never be normal?
What did you do?
What's your experience?

Hi hatfullofrain. I suspected in my forties when another diagnosis I had didn't seem to cover 'everything'. I already had a child diagnosed as autistic so I contacted someone for myself. They were wonderfully supportive (not diagnosis wise - I just mean as a person - and I really really needed that). It was made easier by a move which opened up specialist options. Where we lived before was a bit of a desert of good medical care. Grim.
It's been great to understand myself more. At times I felt a bit for my younger self...going through a lot without knowing, without support. With people constantly defining me when they clearly didn't know who the hell I was, because I didn't know either. I have moments of feeling pissed off imagining how my life might have been with an earlier diagnosis. But I realise that is useless (after all, I'm older so back then things weren't as they are now. I think we're living in an improved time - not that there isn't more to do). So for the most part I focus on now, and the future. I wish you all the best.

 

[Aspychata]

Truthfully l am still reacting to it. I still am second guessing myself, and l can occasionally feel lost, but the big difference is l accept this part of me- the lost soul part of me.

 

[Shamar]

How did you react? Was it a relief? Did you feel despair that it meant you would never be normal?

What did you do?

I feel like I've adapted well to the world around me. I've been fortunate enough to study and get qualifications in a subject I enjoyed and have found employment amongst other spectrumy people who just get me.

What's your experience?

I had to think about this for a while. I never suspected I was autistic until I was diagnosed. I DID know I was different somehow, I just didn't know what it could be. In addition, spending much of my time thinking about ways to do myself in was not conducive to learning about these things.

I had trouble understanding other people's motivations and how to communicate with them.

I just didn't understand what people wanted me to say to them.

My experience exactly. Couldn't have put it better myself.

It was not and never has been Intuitive for me. I still hate small talk for example, but I can say the right things noe. 20 years on I have learned by watching others and through trial and error how to act and what to say and I can pass as normal. Experience has put me where I am rather than any social skills.

I was never really able to learn. I have always been thought of as a bit weird and cannot blend with the NTs, despite really trying (and usually making a fool of myself).

I'm still not interested in mainstream things and find it hard to meet people who enjoy the same kind of things I do, which makes me feel lonely. But if I don't talk about my interests I've found that I can make friends.

My interests are rather varied and would be considered eclectic. I can talk passionately about things that would have normal people desperate to escape the boredom. But I have no real interest in the usual things that most others do.

 

[garnetflower13]

I was in my late twenties when was diagnosed. I remember crying for a few days. Not because I was upset about the diagnosis, but because I was sad about my younger self never feeling accepted or good enough and not understanding how other people got their social life together while I tried really hard and failed. I was sad because I wished I had known sooner that there was an explanation for why I was different from my peers.

Other than that the diagnosis made sense to me and I didn’t have trouble accepting the diagnosis.

I was wondering what to write, but you described my reaction exactly, when I was diagnosed in my forties. A Social worker that I was seeing for counseling suspected ASD when I melted down due to sensory overload.

 

[Storm Hess]

I was taken advantage of on a regular basis. I became very cynical and had to develop a highly-tuned bs metre...which was "don't trust anyone." Was fired from a job because I called someone out for bullying me at work. I became more introverted and cut off from the world, expressing myself through music, art and writing. Was never a great communicator, but I could write. Writing helps slow my brain down and focus. Had to learn masking very early on in life...I'm at that time in my life where I mask as little as possible. Sometimes I cannot help but mask.

Small talk...forget it. It's irritating and draining.

 

[Alexej]

...Writing helps slow my brain down and focus. ...

Yes I also find that writing helps me slow down my thinking
If I am doing a kind of prayer called contemplative imagination then my mind races too fast for me, and slowing things down by writing it out means I can be more in the moment I am experiencing.

 

[Wolfgangus Faldestolius]

When I was 9 someone gave us a loose volume of an encyclopedia A-C only. I loved Aurobindo (a chic guru), Blue Streak (a snazzy missile), Brasilia (a spanking new town) and autism (because I thought the children in the picture looked nice). At school there was talk of assistance but it got dropped.

After many years of muddling and worrying, the next phase of my story is in my introductory thread. Basically I was delighted! It's taken over 20 years to really apply a sensible amount of remediation in practice though.

 

[AngelaS267]

I was 22. I always knew that I didn't communicate well, but couldn't understand why. I also didn't feel authentic when I was talking to people and I couldn't explain why. I feared I was a bad person because I felt like my "niceness" was fake. Come to find out a few years later it was me masking. I didn't think I was autistic because all the articles online had extremely generic criteria for being on the spectrum. I did not think for 1 second that I was autistic. Plus, I didn't notice I had some of these issues until I read what autism looks like in women. Even after reading about the signs in women and matching 90% of it, I didn't believe it. I was afraid to even look at that list again. I didn't think I had an issue with eye contact, getting sarcasm, reading some emotions etc. I remember watching a video of a girl my age talking about having aspergers and that's when I knew. The initial reaction was holy sh*t. After a week of saying to myself in awe, "... I'm autistic," I was so relieved in this strange way. It was unlike anything I'd ever felt. The ultimate clarity. I didn't feel like I had to continually look up all the things that were wrong about me in an effort to fix myself in an unhealthy way. I did grieve as well though, for the loss of all the opportunities I missed. The friends I didn't make in school, the parties I didn't get invited to, the HELP I didn't get in schooling, and how often I was misunderstood. But It's helped me to move forward much better than I'd been before. I still don't know how to get help past this point though to be honest.

 

[Wolfgangus Faldestolius]

... until I read what autism looks like in women. Even after reading about the signs in women and matching 90% of it, I didn't believe it. I was afraid to even look at that list again. I didn't think I had an issue with eye contact, getting sarcasm, reading some emotions etc. I remember watching a video of a girl my age talking about having aspergers and that's when I knew. The initial reaction was holy sh*t. After a week of saying to myself in awe, "... I'm autistic," I was so relieved in this strange way. It was unlike anything I'd ever felt. The ultimate clarity. I didn't feel like I had to continually look up all the things that were wrong about me in an effort to fix myself in an unhealthy way. I did grieve as well though, for the loss of all the opportunities I missed. The friends I didn't make in school, the parties I didn't get invited to, the HELP I didn't get in schooling, and how often I was misunderstood. But It's helped me to move forward much better than I'd been before. I still don't know how to get help past this point though to be honest.

Fabulous testimony! As a bloke at the non-stereotypical end of the Aspie "scale" in the hippy era, I recognised (at age 42) in Donna Williams' autobiography from her inner evidence where I am at.

 

[Aneka]

I started to really consider it a year ago. I've always had some problems socializing and with relationships but I blamed other people for it. I blamed it on my youth, on puberty, on lack of life experience. I thought social skills are something you learn with age. I never realised I'm somewhat different. I have no idea what being normal means, how other people's minds work.
I've been very naïve, the same people have used me over and over again. Now I've learnt to be a generally mistrusting person, it's easier, you don't get hurt.

Learning a profession, doing internships, trying to find a place in life has taught me how I'm different.

Indications for me were: (Sorry this is a long list )

• Inability to initiate and maintain relationships, burning bridges

• delayed responses, interrupting unintentionally other people again and again

• overthinking my actions and reactions in social settings for days, feeling guilty

• feeling exhausted after dealing with people

• problems handling conversations with more than one person

• being overwhelmed if I can't handle a situation (feeling detached from everything, feeling like watching TV, wobbly knees, unable to react or overreacting, sounds of the environment become static noise, intense emotions) and afterwards when no one is around I cry or rage

• trying to fit in, mimicking other people's behaviour and speech pattern, overthinking my reactions when communicating

• finding excuses if invited to parties

• hiding if someone comes unannounced (pretty silly I know)

• comorbidities: trouble with gross motor skills, hypermobility symdrome, diagnosed with irritable bowel syndrome

 

[Storm Hess]

Yes I also find that writing helps me slow down my thinking
If I am doing a kind of prayer called contemplative imagination then my mind races too fast for me, and slowing things down by writing it out means I can be more in the moment I am experiencing.

Yes...exactly.

 

[Storm Hess]

I started to really consider it a year ago. I've always had some problems socializing and with relationships but I blamed other people for it. I blamed it on my youth, on puberty, on lack of life experience. I thought social skills are something you learn with age. I never realised I'm somewhat different. I have no idea what being normal means, how other people's minds work.
I've been very naïve, the same people have used me over and over again. Now I've learnt to be a generally mistrusting person, it's easier, you don't get hurt.

Learning a profession, doing internships, trying to find a place in life has taught me how I'm different.

Indications for me were: (Sorry this is a long list )

• Inability to initiate and maintain relationships, burning bridges

• delayed responses, interrupting unintentionally other people again and again

• overthinking my actions and reactions in social settings for days, feeling guilty

• feeling exhausted after dealing with people

• problems handling conversations with more than one person

• being overwhelmed if I can't handle a situation (feeling detached from everything, feeling like watching TV, wobbly knees, unable to react or overreacting, sounds of the environment become static noise, intense emotions) and afterwards when no one is around I cry or rage

• trying to fit in, mimicking other people's behaviour and speech pattern, overthinking my reactions when communicating

• finding excuses if invited to parties

• hiding if someone comes unannounced (pretty silly I know)

• comorbidities: trouble with gross motor skills, hypermobility symdrome, diagnosed with irritable bowel syndrome

Thank you for your typing this out. It inspired me to think about and outline my own behaviour.

* I find myself territorial and irritated if someone knocks on my door unannounced. "This is my home and I only want people over that I invite." type of monologue in my head. I try to be polite and replay the social norms that my parents drilled into my head. Inside my head...it's a different story. Even when someone is invited over (which is initiated by my wife), I tend to slip away to another room and not be involved.
* Relationships have been very difficult for me and still are. Never had a problem burning a bridge, because if I didn't like someone enough to not care about it in the first place, they weren't worth it to begin with.
* Clarifying statements is something I seem to find myself doing a lot. I was recently on a phone call (which I do not like), and the person I was speaking with was getting confused because I was taking what she was saying literally. I don't like answering or talking on phones. If it weren't for being a developer, I wouldn't have a phone.
* Yes, exhaustion. When my wife plans family outings, I get nervous from the night before to time we pull back into the driveway. When I get home, I breath a sigh of relief and want to go to bed...for about two days. Even when I take the kids to school and pick them up. Standing in the schoolyard waiting with other parents that somehow feel that they want to interact. I'm trying...but it's difficult.
* Being overwhelmed...mostly with the kids when they all start getting loud and won't stop. When things get loud and crowds is when I melt down.
* I stopped trying to fit in years ago...it's not going to work for me and I no longer feel obligated to do so. I still mask, but I try not to as much as possible and allow me to be me.
* I have no issue telling people that I do not want to attend an event or a meeting. It normally saves me from having to do it again in the future.
* I've never been the most graceful of individuals, but actually was very good at water skiing and martial arts. Matter of fact, I still train MMA, just not as fast as I used to. I guess I've been lucky in that regard.

Thanks again for your post...it made me remember a lot of things that I haven't thought about in years.

 

[Storm Hess]

I just remembered something...I was talking to my step father one day, I had to of been 17 years old and I was trying to explain something, I kept missing words and would sometimes stammer. He asked me, "What's wrong? Are you dumb?" Yes, he said that. He wasn't a very nice guy at that time. I replied, "No, my brain moves faster than my words." He didn't reply, which I don't understand why.

Wow...eye contact. I still have a problem with that. Sorry, a lot is coming back.

 

[Aneka]

Thank you for your typing this out. It inspired me to think about and outline my own behaviour.

* I find myself territorial and irritated if someone knocks on my door unannounced. "This is my home and I only want people over that I invite." type of monologue in my head. I try to be polite and replay the social norms that my parents drilled into my head. Inside my head...it's a different story. Even when someone is invited over (which is initiated by my wife), I tend to slip away to another room and not be involved.
* Relationships have been very difficult for me and still are. Never had a problem burning a bridge, because if I didn't like someone enough to not care about it in the first place, they weren't worth it to begin with.
* Clarifying statements is something I seem to find myself doing a lot. I was recently on a phone call (which I do not like), and the person I was speaking with was getting confused because I was taking what she was saying literally. I don't like answering or talking on phones. If it weren't for being a developer, I wouldn't have a phone.
* Yes, exhaustion. When my wife plans family outings, I get nervous from the night before to time we pull back into the driveway. When I get home, I breath a sigh of relief and want to go to bed...for about two days. Even when I take the kids to school and pick them up. Standing in the schoolyard waiting with other parents that somehow feel that they want to interact. I'm trying...but it's difficult.
* Being overwhelmed...mostly with the kids when they all start getting loud and won't stop. When things get loud and crowds is when I melt down.
* I stopped trying to fit in years ago...it's not going to work for me and I no longer feel obligated to do so. I still mask, but I try not to as much as possible and allow me to be me.
* I have no issue telling people that I do not want to attend an event or a meeting. It normally saves me from having to do it again in the future.
* I've never been the most graceful of individuals, but actually was very good at water skiing and martial arts. Matter of fact, I still train MMA, just not as fast as I used to. I guess I've been lucky in that regard.

Thanks again for your post...it made me remember a lot of things that I haven't thought about in years.

Seems like we have some things in common Regarding the gross motor skills, if I attempt to learn new motion sequences I need a lot of time. My mind knows what to do but my body disobeys. I need to drill my body to obey my mind. I need to do it over and over again until the process is somewhat automated. Okay, this sounds weird and crazy but this is how it is.

I'm participating in a sportsgroup and we do multiple things like weight training, yoga or even dancing (we're mostly women, the men don't have much of a choice ). Last time we did some dancing and the trainer gave up trying to tech me the steps. She said something like "keep on hopping around, at least you're moving".
The upside is my flexibility.

 

[Tony Ramirez]

My social skills were so poor when I was a teenager. I wanted friends so bad I just did not know how to make them. I use to think in my mind "To make friends" was a 10,000 page book divided into volumes, and to "Fall in love" was a 100,000 page book divided into volumes. To only realize until recently after that it really is not to hard to make friends you just have to talk to them and to be in a relationship even if it is just friends with girls you have to actually go up and talk to them. Rarely do they come up to you.

 

[homo_aspien]

He asked me, "What's wrong? Are you dumb?" Yes, he said that. He wasn't a very nice guy at that time. I replied, "No, my brain moves faster than my words." He didn't reply, which I don't understand why.

Wow...eye contact. I still have a problem with that. Sorry, a lot is coming back.

This.

My family was threatening me they would send me to 'retarded' school because I was talking to fast. I told them the exact same thing. Did't get a reply.

Also, a lot is coming back so I just realized I was always made to feel responsible for everything that happens if I'm around. Even if I was 5, and adults used me/or were being mean. My family made me feel responsible. I always knew I was different and could notice so much more than others, so it made sense to me, I still feel this responsibility, and it drains me.

To their defense, I didn't even know about all the aspects of autism, and in my small, bigoted country mental health is still taboo, so are conditions like autism.

 

[garnetflower13]

This.

My family was threatening me they would send me to 'retarded' school because I was talking to fast. I told them the exact same thing. Did't get a reply.

Also, a lot is coming back so I just realized I was always made to feel responsible for everything that happens if I'm around. Even if I was 5, and adults used me/or were being mean. My family made me feel responsible. I always knew I was different and could notice so much more than others, so it made sense to me, I still feel this responsibility, and it drains me.

To their defense, I didn't even know about all the aspects of autism, and in my small, bigoted country mental health is still taboo, so are conditions like autism.

I can relate, because I was the "scapegoat" in my family. I was easily made to feel guilty, even when the things that were happening were not my fault.

 

[Storm Hess]

This.

My family was threatening me they would send me to 'retarded' school because I was talking to fast. I told them the exact same thing. Did't get a reply.

Also, a lot is coming back so I just realized I was always made to feel responsible for everything that happens if I'm around. Even if I was 5, and adults used me/or were being mean. My family made me feel responsible. I always knew I was different and could notice so much more than others, so it made sense to me, I still feel this responsibility, and it drains me.

To their defense, I didn't even know about all the aspects of autism, and in my small, bigoted country mental health is still taboo, so are conditions like autism.

Scapegoating is typical within the generational divide, even more so when neither the family or Autistic member has any clue on what to look for or 'why'. I've been called stupid, lazy, incapable and useless. I look back at it with indifference because I know I am none of those and have proven that many times to those family members whom see what I can do. I can't change those moments, but I can use them as ammunition to further my life goals and as a road map for raising my kids. All of my children show signs of being on the spectrum...it's been a rollercoaster thus far.

it's difficult dealing with the 'whys' of a family trying to deal with Autistic family member, specially when no material, support or even a knowledgable person to recognise the traits aren't anywhere to be found. Ignorance breeds hatred and contempt. Stamping out that hatred and dispelling the ignorance is difficult to manage when it's been ingrained in society. Education does wonders for those willing to learn. Your post helped me understand that I am not the only one that has experienced this. Thank you.

 

[homo_aspien]

Your post helped me understand that I am not the only one that has experienced this. Thank you.

Thank you. It also made me realize I was not alone, for the first time in my life I feel I am not an alien, but there are people like me.

Thank you all in this community, I have been here for a week or so, but never felt this welcome or understood! <3 <3 <3

 

[Taira]

That thing about brain moving faster than my mouth or fingers... I've always had problems with written assignments because I've finished thinking it long before I get around to writing it, and by then it's become irrelevant in my mind and i just forget it. Talking is easier, because I'm rather eloquent, an I can speak more in sync with my thoughts than I can write.

But as to the original question. My mom told me a few years ago that she thought I had autism when I was a kid, because of my lack of facial expressions. I keep wondering why she didn't get me tested, and if that would even have helped me.

I've long suspected, but I'm not going to get diagnosed any time soon, as it would be detrimental to me except in situations where people ask me why I'm so weird. Yes, suspected, but not really believing. Until a few minths ago when I reconnected with an old online friend who told me she recently found out she's on the spectrum. Then I went ahead and looked up criteria and questionnaires, and found that it's rather more likely than not that I'm high-functioning autistic. So I went back and told her about it and her reaction was just "well, that explains a lot". Who needs to be diagnosed if the friends who know you best think it's that sense-making.

I was pretty lost as a kid, but had a few friends I could play with despite being socially clueless. It got worse when I was around 9 or 10 and the girls started really developing their group identity and all the weird social norms that came with it. That's when I would have needed help, but didn't get any. And because I didn't get help with being myself, I got seriously good at masking instead. Meaning that I'm still really weird, but people think it's a personality trait rather than having to do with autism. Me not knowing the correct empathic response isn't a personality trait, though, even if people read it as me being a jerk (to use a nicer word for it). I step on toes, but not because I don't care, I'm just unable to predict where those toes are going to be in a dance I haven't learned.

I could probably go on forever about the signs, but I'l limit them to the poor social skills and one more. When i was 7, I got a children's encyclopedia, and read the entire thing, every word and definition, with great interest. I knew what the centrifugal force was five years before it was mentioned in any school textbook. No wonder I thought school was boring. Maths was fun though. Back then I actually had to work in class, since there was no Google where to find the answer to anything and everything.