I Think The Worst Part Of Being On The Spectrum Is...

[Captain Caveman]

Being and feeling excluded.

 

[marc_101]

Not doing what others do so having conflicting thoughts about replying to this chain

 

[Neonatal RRT]

Having varying degrees of depression that result in inward thinking, rumination, low self esteem, a lack of motivation, self abuse, envy, jealousy, and even anger. Others pick up on that and don't want to be around it, leading to further social isolation and marginalization.

You know, I can often deal with the communication issues simply by asking clarifying questions to gain a better context and perspective, as well as, intent. However, if I ever get "down in the dumps" or even have a "flat affect", I tend to avoid people and people tend to avoid me. If I am an a better mood, and I am actively engaging people, people reciprocate and are quite friendly and engaging with me. A life lesson.

 

[thejuice]

Is being aware of the majority of people playing out their roles unquestioningly.

 

[Aspychata]

My life has been horrible enough without having to consider another complication to deal with that has no answer. There is no medication, and accommodations come slowly, there is no reset button to go back and respond differently to situations l limped thru. I wish there was a little blood prick test, and the friendly white jacket would say "it's a match", "here is your certificate", "now go in peace."

 

[Ronald Zeeman]

The only real issue I had to deal with was lack of upward mobility when employed. Just thought it was bad luck so took many educational upgrades courses in leadership, life's good otherwise have to live in a NT world, their rules thier loss.

 

[jsilver256]

Knowing I'll never be able to participate in conversations, even assuming I'm capable of following.

 

[Misty Avich]

Hmm, let's see...where to begin?

1. The contradictions of the 'empathy' definition (for NTs empathy is complex but for Aspies empathy is the subject of a lecture we often receive for not being perfect)

2. Its cruel nature of autism for some of us, where we have the typical NT desire to fit in and socialise but the nasty horrible autism prevents this

3. All the physical diseases that apparently come with autism

4. The sensory issues

5. The focusing on sweating the small stuff (though that might be ADHD in my case)

6. The outbursts and the fact that I have to pay £9 a month to prevent me from having an outburst that are triggered by (see number 5)

7. Obsessions taking over my mind and life (this used to happen when I was in my teens and it nearly got me into trouble with the law) but maybe that's more due to ADHD too

8. Just being in a neurological minority

9. The way it means "self" like we're destined to be alone

 

[vergil96]

I'd also say it's the "being stuck at home because problems" part.

 

[Dagan]

For me: It's if everyone thinks you are very insecure...but you're actually just one who chess matches / second guesses things because you don't want to be mistaken and perhaps look stupid or come across rude, immature and/or unprofessional. Oops.

 

[marc_101]

Having varying degrees of depression that result in inward thinking, rumination, low self esteem, a lack of motivation, self abuse, envy, jealousy, and even anger. Others pick up on that and don't want to be around it, leading to further social isolation and marginalization.

Yes, the emotional toll that autism takes is very serious. It both gets worse and gets better with time. It can get better if one can develop tools to cope and adapt, but it gets worse because with time there are more rejections, more bad interactions, more disappointment. I have to work hard to remain hopeful.

 

[Misty Avich]

My autistic friend likes being autistic even though she gets frustrated with the world, she still has always liked herself and couldn't imagine herself any other way. She's very content. Wish I felt the same about my case. But I don't.

 

[NB79]

The worst part is feeling everyone can make friends and relationship, and you just can't.
In high school i coulnd't form any friendships, in the breaks, i would just go to a alone place and sit there feeling horrible because i didn't know what to do. The other teens were playing cards or chatting between them, i just couldn't do it.

In my 4 or 5 birthday, my mom invited lots of kids, they were playing between them, and i just sat there, because i couldn't do much, i felt so bad anguish started to build up i retired alone to my room with the excuse of checking the gifts and toys.

 

[Misty Avich]

Socialising was a piece of cake when I was a child up to about 11 or 12 years old. Then suddenly girls at school didn't want me with them any more. There were like 11 or 12 girls in my class and they all hung out together in a big group at recess, so I knew that if I were NT like them then I'd just be accepted as another member of their group. But because I was excluded just because I was me, it made me start to resent the fact that I'm lumbered with this horrible ASD, as that was the only reason why I wasn't included. I hated being on my own, and I liked most of them, so I stuck with them but I knew I wasn't really wanted. It was a horrible time of my life.
I knew most of them since we were like 4 years old, so I'd have thought they'd just be used to me and accept me as just Misty and include me being so I was just as much a member of the class as everyone else was.

This was where it felt personal.

 

[Misty Avich]

I spent a lot of my early teenage years crying for a friend. At weekends if my cousins weren't about (because they were out with their friends) I'd literally cry my eyes out and wail "why ain't I got no friends? I wanna be normal like all my cousins and have friends! It's not fair!" And it was heartbreaking for my mum to have to hear. I mean, no parent wants to hear their teenage child crying because they're lonely and nobody likes them. It was very heartbreaking to say the least. And that was why my mum hated autism, because it denied me of having friends. All she wanted was for me to be loved by my peers and be accepted. One thing parents can't do for their teenage children is make friends for them. I relied on my cousins as my only friends but because they were NTs they soon found their own friends and spent weekends with them. And then I started resenting the fact that my cousins were all NTs, and I used to wish at least one of them was like me so that I could share my social isolation with someone and we'd always have each other. One or two of my cousins have ASD traits but they still seemed more successful than me with friendships as teenagers so I still feel like I'm the only one in my family with this curse.

 

[Neonatal RRT]

My autistic friend likes being autistic even though she gets frustrated with the world, she still has always liked herself and couldn't imagine herself any other way. She's very content. Wish I felt the same about my case. But I don't.

I am content, as well, at this point in my life. I have taken the time to understand about autism, down to the cellular level. I realize there are things I cannot change and I have made my peace with that. I've accepted that. On the other hand, from a more psychological, social, and communication perspective, I realize that regardless of whether one is autistic or neurotypical, no one wants to be around a person who projects negativity. I am of the mind, this is universal. So, call it masking, lying, or simply a coping mechanism, projecting positivity is a "life hack" that others respond to and reciprocate.

So many times I have come into work, horribly understaffed, knowing that there is no physical way to do what has been assigned, let alone knowing the 101 interruptions you're going to have that day, and all one can do is smile and laugh at it, quite literally. I have accepted my fate, as well as all my co-workers, so there is zero sense in venting all one's negativity. The people with the most personal character, in my opinion, the one's I most respect, are the people who are going to take a team approach and help each other, the people who are busy as Hell, and still manage to reach out to you with a "How can I help you?" and actually do. It can be contagious behavior.

So it is with my autism. I've also taken the approach that in order for people to appreciate and respect me, an important thing for me, is that I have to be a leader, mentor, educator, the "go to" resource person that will do what he has to do in his own life, and will still make time and use his energy to help others. Feeling overwhelmed, in many cases, is primarily a psychological state of mind coming from the emotional centers. Once I realized that psychological stressors are often coming from the emotional centers, it is also my cue to push aside negativity and consciously react in the opposite way when interacting with others. Is it a problem, or an opportunity? For me, it's an opportunity to fight back the negativity that ultimately contributes to a lack of dopamine, serotonin, and oxytocin that will push me into depression and isolation. When people respond to me with positivity, that's a dopamine hit, a "fix" that keeps the "demons" away.

 

[GrownupGirl]

Being bullied for having unusual or intense interests even, if they are harmless.
Being forced into living conditions that are not good for people with sensory issues or a need for privacy and peace and predictability.
Being scolded or even punished for not acting NT or "normal".
People not even knowing you have ASD because you're an adult woman, and still believing that an autistic person is a white male child that wears a helmet, screams constantly, and if they speak it's in monosyllables and third person language.
Two words: Autism $peaks.

 

[Seladon]

Socialising was a piece of cake when I was a child up to about 11 or 12 years old. Then suddenly girls at school didn't want me with them any more. There were like 11 or 12 girls in my class and they all hung out together in a big group at recess, so I knew that if I were NT like them then I'd just be accepted as another member of their group. But because I was excluded just because I was me, it made me start to resent the fact that I'm lumbered with this horrible ASD, as that was the only reason why I wasn't included. I hated being on my own, and I liked most of them, so I stuck with them but I knew I wasn't really wanted. It was a horrible time of my life.
I knew most of them since we were like 4 years old, so I'd have thought they'd just be used to me and accept me as just Misty and include me being so I was just as much a member of the class as everyone else was.

This was where it felt personal.

Misty, this really resonates. It’s like being there on that playground all over again. So sorry you experienced this too, it’s heartbreaking for the kids that we were.

 

[Aspychata]

@marc_101 , it feels like you have been at this forum forever with all our fantastic members. Thank you!

 

[Aspychata]

Thank you @Neonatal RRT , l have really grown with your beautifully put ideas clarified with actual words. Sometimes, it's so hard to write the script of what we wade thru.