Hello! Desperately Seeking Advice...

[Wheelered]

Hi everyone! I'm going to try to be as thorough as I can (and as brief as I can). It would mean a whole lot to me to hear your feedback.

I'm going to just lay it all out here...

I have always felt different. Sometimes I have felt special and sometimes I have felt inferior. Sometimes I have felt extra intelligent and sometimes I have felt extra unintelligent.

I assumed all of my unique traits were due to my childhood (my parents split when I was 6; my father was repeatedly unfaithful, also verbally and physically abusive.... and my mother is unique in many ways).

From about the age of 12-13 I became obsessed with time and how time passes so quickly. It has caused a great fear of death, and makes it hard for me to enjoy the present because I'm so worried about the future and consumed with the past. Again, I thought the anxiety was just from my childhood.

In my mid to late teens I was constantly freaking out about my health. Every headache was a brain tumor. When I was 19 my mother sent me to the doctor had me put on Celexa.

I hated social things. I didn't want to play sports or go to pep rallies because I had to be around other people. Not because I don't desire relationships (I do) but because I felt inferior and always make a mess of things.

In the 2nd grade my "friends" told me they didn't like me because I didn't know how to joke or take a joke (I still struggle with this). I never know what to say socially, and I often say things that don't sound to others how I intended it.

I had girlfriends as a teenager but I always struggled with anger -- exploding if things weren't done exactly how I wanted them or if things weren't said exactly how I wanted them said (or if I even felt like you weren't sincere). Relationships were always rollercoasters of emotions.

My current best friend I've had since the 7th grade but before that I went through friends like t-shirts (and even later on in college I lost friends). My problem is in certain situations I KNOW I'm not supposed to say something but it feels true to me and even if I try to lie about it, my mannerisms give me away. Which, if I'm being honest, I usually feel an almost unbeatable compulsion to say what I feel.

All of this I have always chalked up to OCD, Depression, Anxiety (all things doctors and psychiatrists have officially diagnosed me with). The anger I blamed on being like my father.

As I've gotten older (I'm almost 31), I feel like I've gotten much better at making conversation and social interaction, although it is still a heavy burden, extremely exhausting, and I feel like I'm putting on a show. I've been married to my wonderful wife for 6.5 years now (together a total of 10) and she is amazing. To say that putting up with me has been hell for her is understatement though.

There are so many things I can say, so many things I'm probably forgetting. My brain is going in 10,000 different places and even here I'm finding it hard to put together a coherent thought (I usually feel much more comfortable writing).

So where all of this applies to ASD is the day before yesterday the YouTube algorithm recommend an autism video for me entitled something along the lines of "Why You Might Be Autistic and Not Know It."

I watched the video and it literally scared me. At the end of the video the woman said something like, "And the final sign of autism spectrum is relating to all of these things and not realizing that no one else thinks this way."

It was like I had been punched in the face. My sister-in-law joked one time that I might be "slightly autistic" and I told my best friend about it because it hurt my feelings and he said, "I can see that." That was NOT the response I was expecting.

Me, my wife, and my sister-in-law have a close relationship and they joke around with me all the time about my awkward conversations with people. They joke about the fact that at family gatherings there are extreme moments of tension and I'm completely oblivious. I begin remembering all of this.

I remember a time, in the first year of our marriage, when my mother-in-law was generously buying us a couch for our first home and I made some comment about how "I really wanted genuine leather" instead of cloth. Literally had my wife not told me how offensive and hurtful that was, I would have NEVER realized it.

Sometimes I feel so smart, and then sometimes I cannot grasp even the smallest things. I never even though about autism except in the vein of, "My mom was 39 when she had me, and given the stats, I'm surprised I wasn't born with autism."

So anyways, I took the AQ test and scored a 38 the first time. But I was afraid that I knew what they were looking for and took it again and really tried to be honest, and maybe even try to lighten some of my things and I got a 33 the second time. I took a test on Clinical Partners (in the UK) and Psychcentral.com and both said it was highly likely I was on the spectrum.

There was a question on there about preferring non-fiction over fiction. I didn't even know that was a thing! I've always said fiction wasted time when I could actually be learning something.

I reached out to my wife and told her my suspicions. I'm worried she's not going to believe me because with my anxiety it's always something I'm thinking I have every other day and I'm scared she's going to get fatigued of it eventually. But this is what I told her my reasoning for my suspicion was:

1) Mom gave birth at 39
2) Poor/awkward social skills (she is a 1st hand witness)
3) Very hard to pick up on social cues (although I feel like I get better with age)
4) Jumping from obsession to obsession
5) I can maintain eye contact, but it takes all of my energy and I hate it and I think about how uncomfortable it is the whole time
6) Hypersensitivity to stimulus (this one isn't too strong and I may be wrong on this, but ever since I was a kid, if I went into a store like Walmart or a restaurant the combination of lights and people would kind of make me dizzy or alter my vision -- I've never really told anybody but my wife about it, it hasn't ever effected me except I've noticed it and it's annoying -- if anybody knows what this is and it's not the ASD sensory sensitivity, please let me know!)
7) My freak outs if plans get changed or something doesn't go right (she knows this best also)
8) Difficulty with empathy
9) Difficulty with emotions, intimacy, and sudden outburts

I've always jumped from obession to obsession. My wife describes me as "all or nothing." And once I'm out of an obession and on to a new one, I have a hard time ever returning to the old.

When I'm alone or with my wife, and I'm the least bit stressed I make a "motorboat" sound with my mouth. I never truly relax, and I'm always pretty uptight. Jokes are hard for me. I laugh at comedians and things that are funny but laughing in relationships and enjoying the moment with people is a struggle.

So, if you've read this far, thank you so much. I greatly appreciate it. Where I need your input is here: With my anxiety, I always think I've got something. There's always something that I'm positive I have, and the tests always turn out negative. I'm desperately looking for an answer to why I am the way I am. But I also want to be respectful of this community and I am terrified that I'm wrong and that I'm just anxious or mean or immature or something and just looking for answers and ASD is the current one that is sticking. Because I've read some people's stories and I don't identify with them; some I do. But I wonder how much of it is real and how much of it is me wanting an answer, a community to share with? Please help, any input is appreciated more than you know.

P.S. - I asked my mom if she ever suspected anything when I was a kid. She said no and that no teachers or doctors ever said anything either. But I do remember going to a psychiatrist as a child (presumably because of the divorce) and also having a hearing test (why I would've had that, I have no idea -- I don't have many memories, that's a struggle). My mom's brother has a grandson with "mild asperger's" my mom told me (I knew but had forgotten).

I'm sorry this was so long.

 

[Nitro]

 

[Gerald Wilgus]

Welcome. I went through a similar awakening before my diagnosis, though we all are individuals, and people point out that it is a spectrum for a reason. Two things prevented others, and I, from noticing for the longest time:

1. Even at my most isolated My intelligence gave people the impression that I was normal.
2. My relationship ability is virtually NT, so even with other difficulties I am able, after early mistakes, to nurture relationships I commit to. This seemed to hide other difficulties that are finally making themselves known.

Just remember that while ASD influences us, we are not our ASD, especially those of us diagnosed late in life.

 

[tree]

 

[Wheelered]

Gerald, thanks for the reply. I guess I'm still kind of in shock at the whole thing. I've though I had so many other things before that this doesn't feel real. I know no one can diagnose but I would like to hear from you or anyone else if that sounds like ASD or am I just crazy? I guess I feel like I have imposter syndrome...

 

[Neonatal RRT]

@Wheelered, you can take a few more on-line tests. The AQ score is one, as you mentioned. The RAADS score is another. There are other on-line tests on the Cambridge University Autism Research Center site.

Those tests are NOT diagnostic in and of themselves. However, there's a saying,..."If it walks like a duck, has feathers like a duck, quacks like a duck,...it might be a duck." Doing an adult autism interview and testing is the proper way to diagnose and the only way in which you can obtain help through the ADA. However, there are others, that for various reasons, are content to self-diagnose.

A diagnosis of autism doesn't change who you are. If you do your research on autism,...which I highly recommend,...it makes you more self-aware. Any deficits you have may be real,...but it requires a positive attitude with regards to adapting and overcoming. Never focus upon what you can't do,...focus on what you can do. One of the hallmarks of autism is asymmetrical intelligences,...some things may be below normal, some things normal,...and others, you may find that you are above normal. Many of us have special interests and talents.

As far as wanting to be "normal" or "neurotypical",...you're probably not,...so you've got to let that idea go. Be yourself. Find your talents. Be happy with who you are,...because neurotypicals have their own issues. Personally, I have ZERO desire to be "normal",...for reasons of which I am not going to elaborate on at this time.

Welcome to the forums.

 

[Wheelered]

@Wheelered, you can take a few more on-line tests. The AQ score is one, as you mentioned. The RAADS score is another. There are other on-line tests on the Cambridge University Autism Research Center site.

Those tests are NOT diagnostic in and of themselves. However, there's a saying,..."If it walks like a duck, has feathers like a duck, quacks like a duck,...it might be a duck." Doing an adult autism interview and testing is the proper way to diagnose and the only way in which you can obtain help through the ADA. However, there are others, that for various reasons, are content to self-diagnose.

A diagnosis of autism doesn't change who you are. If you do your research on autism,...which I highly recommend,...it makes you more self-aware. Any deficits you have may be real,...but it requires a positive attitude with regards to adapting and overcoming. Never focus upon what you can't do,...focus on what you can do. One of the hallmarks of autism is asymmetrical intelligences,...some things may be below normal, some things normal,...and others, you may find that you are above normal. Many of us have special interests and talents.

As far as wanting to be "normal" or "neurotypical",...you're probably not,...so you've got to let that idea go. Be yourself. Find your talents. Be happy with who you are,...because neurotypicals have their own issues. Personally, I have ZERO desire to be "normal",...for reasons of which I am not going to elaborate on at this time.

Welcome to the forums.

Thank you so much for your insight! I am going to look into those tests you mentioned. Also, I noticed in your signature a few other tests, do you recommend any of them? As far as research goes, do you recommend any sources? I'm currently reading Look Me In The Eye by John Elder Robison.

 

[Neonatal RRT]

Thank you so much for your insight! I am going to look into those tests you mentioned. Also, I noticed in your signature a few other tests, do you recommend any of them? As far as research goes, do you recommend any sources? I'm currently reading Look Me In The Eye by John Elder Robison.

A handful of the studies in my signature were performed as part of my professional testing and diagnosis,...so you're not going to find these on-line.

I am a medical professional, so my biases lie with the medical model of autism. I started out on YouTube and watching scientific lectures on autism. Then, I started on Google Scholar and PubMed reading scientific journal articles. To get you started, autism basically starts as a combination of altered neuronal formation and migrational patterns. There are several variants of autism. Causes appear to be multi-factorial,...with over 100 different autism markers on the human genome, but appears to require some other prenatal "trigger" for autism to occur in the fetus. Twin studies have been quite intriguing, as one may have autism, and another not. My studies have primarily been of functional neuroanatomy. The more recent functional MRI studies are quite interesting. The neurotransmitter imbalances, the oxidative-to-antioxidant imbalances, the immune function in autism are intriguing. Then,...others really get into the psychology and psychiatry of autism,...not my thing,...but to each their own. To me, behaviors inherent to autism are signs and symptoms of the underlying issue,...the brain anatomy and physiology,...and everyone has a different brain, so it can be a bit nebulous if you were to describe a "stereotypical" autistic. You have to be careful with your language, context, and perspective. Oh, it can be a lot of fun (sarcasm). As much as we know about autism, we still don't know "squat",...part of the frustration and curious excitement in research.

 

[Richelle-H]

Hello @Wheelered, welcome to the site.

You match many of my own quirks and foibles, and I was diagnosed in my 40s. At a very young age, I was convinced I was not from this planet. A thought that I never expressed to anyone. I have a terrible time with knowing when I am being teased. I do get humor, the more eccentric the better, but when it it directed specifically at me, I tend to take it the wrong way.

I will say this, with knowledge and application things do improve. However, I still do not feel as if I am part of the human race for more reasons than I care to write about here.

I don't have much to offer, but this is probably the safest place on the net for exploration. I have tried others and never connected in the way I needed.

Do not be so hard on yourself, and look to your strengths, passions and loves for comfort.

 

[Wheelered]

Hello @Wheelered, welcome to the site.

You match many of my own quirks and foibles, and I was diagnosed in my 40s. At a very young age, I was convinced I was not from this planet. A thought that I never expressed to anyone. I have a terrible time with knowing when I am being teased. I do get humor, the more eccentric the better, but when it it directed specifically at me, I tend to take it the wrong way.

I will say this, with knowledge and application things do improve. However, I still do not feel as if I am part of the human race for more reasons than I care to write about here.

I don't have much to offer, but this is probably the safest place on the net for exploration. I have tried others and never connected in the way I needed.

Do not be so hard on yourself, and look to your strengths, passions and loves for comfort.

Thank you for your kind reply. I've read many people's testimonials about not feeling like part of the human race. I find that fascinating -- I feel different, but still a human. It's hard to explain, like I said at the beginning somethings I feel exceptional and sometimes I feel subhuman... No idea why it fluctuates haha

 

[Wheelered]

A handful of the studies in my signature were performed as part of my professional testing and diagnosis,...so you're not going to find these on-line.

I am a medical professional, so my biases lie with the medical model of autism. I started out on YouTube and watching scientific lectures on autism. Then, I started on Google Scholar and PubMed reading scientific journal articles. To get you started, autism basically starts as a combination of altered neuronal formation and migrational patterns. There are several variants of autism. Causes appear to be multi-factorial,...with over 100 different autism markers on the human genome, but appears to require some other prenatal "trigger" for autism to occur in the fetus. Twin studies have been quite intriguing, as one may have autism, and another not. My studies have primarily been of functional neuroanatomy. The more recent functional MRI studies are quite interesting. The neurotransmitter imbalances, the oxidative-to-antioxidant imbalances, the immune function in autism are intriguing. Then,...others really get into the psychology and psychiatry of autism,...not my thing,...but to each their own. To me, behaviors inherent to autism are signs and symptoms of the underlying issue,...the brain anatomy and physiology,...and everyone has a different brain, so it can be a bit nebulous if you were to describe a "stereotypical" autistic. You have to be careful with your language, context, and perspective. Oh, it can be a lot of fun (sarcasm). As much as we know about autism, we still don't know "squat",...part of the frustration and curious excitement in research.

That is interesting! If I'm honest, I'm probably biased to the psychological end of it myself. However, pathologies do fascinate me as well! I would be interested in hearing when they discover what the prenatal trigger is!

 

[watersprite]

Welcome.

 

[Aspychata]

Yes, we feel outta of step with those around us. But this doesn't have to mean horrible. It's just us. I , early in life, thought as one who was always studying people. Observer is more accurate. Didn't mean l was bad or good, it was just a state of being.

So later, l crossed into masking or presenting a persona. I describe this as a public persona. As someone who presents a person who can float around almost any social setting.

Now l am just a mishmash of masking or standing my ground no matter what.

 

[MyLifeAsAnAspie]

Your scoring on the AQ mirrors my own experience. I took it long after I was convinced that I was ASD. I scored 34 by going with the NT answer for anything I was on the fence about. I'm sure I'd have no problem getting a 38 otherwise. Your mother probably didn't find your behavior as a kid unusual because that's where you got your ASD genes from. Your age puts your childhood early in the era of ASD awareness by doctors/teachers. The rising ASD numbers suggest few ASD kids were diagnosed back then.

My parents were concerned about my speech delay (~1960) and my doctor was dismissive. I did see a pdoc when I was starting school but don't know what he concluded and I stayed in mainstream classes. I remember them checking my hearing too. I self-diagnosed in the late 1970s when I found a description of Asperger's in the psychology book. People have also make comments about my obvious ASD in recent years, but I had never opened up about it until learning about the ND concept 2 years ago. But after studying ASD, it explains much more about me than simply knowing that it was causing my biggest problems.

 

[_eri_bellehumeur]

Hello, and welcome!

I see many parallels between your experiences with my own- history of anxiety, knowing there was something different and never really knowing what (I thought ADHD, FASD, Depression, and a bunch of other things). It was ASD that really tied everything together and made so much sense. The thing with relating to some stories is that autism experiences are so incredibly varied- it's like people say, "if you meet a person with autism, you have met one person with autism"- no two experiences are alike. I have been in the process of researching autism seriously (almost everyday) for over a year and I still struggle with imposter syndrome even though there are so many experiences I relate to with people on the spectrum, and they're about the only people I feel an affinity with. I grew up in a dysfunctional home myself, and I know that my constant search for a community, as well as my refusal to allow myself to believe that I belong anywhere is a result of this upbringing. This may be a factor behind your own distrust of your suspicions that you are on the spectrum.
Funnily enough, I have heard some stories about children on the autism spectrum being mistaken for having hearing problems, and vice versa, where people with hearing loss are diagnosed with autism because of the issues with communication experienced by both demographics.
My advice is to not rule it out- if you don't feel comfortable taking the label that is fine, but continuing researching, talking to autistic individuals, and interacting with content created by autistics about autism is the best way to go IMO.

 

[Suzanne]

I felt as though I was reading about myself lol and I was formally diagnosed nearly 3 year's ago, and that was before, people would say: you don't look autistic. Oh, we all are a bit like that? Oh, if you, then I am too. And now, since diagnosis, I get completely the opposite. Probably, two factors. One, because I am confident now, since I know I am on the spectrum and two: neurotypicals ( nt) like a formal diagnosis to know how to deal with a situation.

It is well worth you pursuing a formal diagnosis.

How wonderful that you have a supportive wife.

ps: there is a lot of fact in fiction, since the author bases it around the era they life in or situations in life!

 

[Thinx]

Hi and welcome. Yes why not keep on researching to see how this fits for you. If you have a non typical neurology, it will affect how you experience the world. Seems communication and social interaction are often affected. Knowing it's a factor can help us find strategies for issues. Also we can look for ways around things instead of Trying to be Normal or do things in a neurotypical way that doesn't work for us.

Some have slow or different processing in real time, for example. Probably only speeding up time would improve that situation! But we can find ways to understand what happens and ways to limit problems of effects.

Havd some discussion here, read around the threads. We are all different, so you won't find anyone quite like you, but you may find plenty of ideas and information.

A lot of people understandably develop anxiety or other issues alongside Neurodivergence, this is not really a part of it, and is seen as a comorbid condition. Understanding you may have autism can help with that, and anxiety can be worked on, as can other issues such as insecurity from childhood family issues. If we work on all that, maybe in therapy or self help, some can be fairly free of difficulties.

 

[Suzette]

Hello,
I do relate to your post very much. I identified myself as on the spectrum just a few weeks ago. I am 54. For me, after a life time of struggles, finally figuring out where I fit in was an enormous relief!

There is absolutely nothing to be afraid of. Nothing, except the life you are already leading, happens after self identifying or even being formally diagnosed.

Now you have clarity. It's like you have been looking at a drawing that looks like one thing, but shift your focus just a little, and the drawing looks like something else.

 

[Raggamuffin]

12-13 I was obsessed with the end of the world, which also caused a great fear of death. My health anxiety began in my early 20's and lasted for years with constant aches and pains that still affect me to this day.

I'd been put on Celexa (Citalopram in UK) but it didn't help much. Tried SSRI's and they made me feel wired.

I don't take jokes well. Because there's something too literal in my mindset. I actually turned that into a joke with close friends - taking things literal for comic effect. But playing the fool is just another form of masking - and it's exhausting.

Socialising improved for me as I got older too, but it is exhausting. I'm not sure how people can socialise frequently. I need a lot of "me time" to recharge my batteries. Being around others saps me as I find I really pick up on emotions and energies and it utterly drains me. Yesterday I went to a spiritualist evening with my mum and the noise of 30-40 people before the medium reading began was so loud that I wanted to cover my ears or walk out. Instead, I opened a book on my phone and just tried my best to ground myself.

I was initially labelled autistic as a joke, but when I read about it - it was humbling how hard it hit home.

Saying hurtful things without realising it is difficult. I find when I've slipped up, I'm suddenly smashed with the atmosphere - like a tidal wave. Right now I feel a storm brewing at work and I'm deeply unsettled by it.

It's tricky with online tests, heck even my official ADHD assessment used almost word for word questions from all the online ones I had taken. But these scales for answers doesn't fit right with me. It's never that black and white. I'm highly situational.

Anxiety and depression seem to go hand in hand with ASD. Difficulties which provoke further difficulties.

Problem with testing negative with a Dr is how long that calm lasts - before you convince yourself they "Must have missed something" and you're back to anxious rumination. Stressed mind leads to a stressed body. That vicious circle is hard to break. Right now I've had a persistent pain which I know deep down "I'm ok" but every day, and every time it flares up - the "what if's" begin anew.

My anxiety got to the point of agoraphobia and panic attacks leaving the house etc. My "punch in the face" moment was after my second -2 hour long panic attack. After that day in 2012 my body began aching every day. For those first few years with Dr Google - I felt like I was living on borrowed time. I had so many Dr, GP and hospital visits. I was told "It's just anxiety" and had to tell my story with anxiety so often that I became frustrated with the whole routine.

I think as I got older I could chalk more up to experience. I bothered Doctors so much that I know red flags symptoms - and I've never had them. I've gone to bed in so much pain before that I convinced myself I wouldn't wake up - but I did. Then again, depression sometimes makes me wake up wishing I hadn't.

Ed

 

[UncertainAdult]

Hello,
I'm here for alot of the same reasons. I was diagnosed with ADHD as a child and every struggle I've had has been blamed on ADHD. I was researching ADHD and the algorithm put me on autism and I related so much. I did the same thing and took a test. I scored moderate to high for symptoms on every one and now I'm questioning... Are some of my struggles that I haven't been able to figure out because of undiagnosed autism?
They eye contact thing really got me. I know people make eye contact when they talk, but the whole time? I talk and look at someone to start talking but after that it is so uncomfortable to continue looking at someone's eyes.
I also relate to having to be told when I'm being weird or rude. My husband tells me often that a way I did something was odd or rude.
I talk people to death about my interests. I recognize it often now, usually way to late, and it makes me really anxious now to talk about my interests because I know it's so hard to tell when a person's lost interest in what I'm saying.
I've created scripts in my head for different things. How to small talk, what kinds of things to say when talking to a coworker in line for lunch, what to say to family at my in-laws, lots of things. I thought everyone did that.
Sensitivity to sounds and physic touch. I hate the seam in socks, I rip out tags, won't buy clothes that have annoying features like metal buttons that touch your skin. I can not sort out sounds when there is a lot. When I have to go out into production area at work I can't figure out what anyone is saying and I just nod.
I get enraged at inanimate objects when they don't do what I want. And I always feel rediculous and embarrassed afterwards.
I'm here to find out what other experiences I might share and see what other adults experience is with professional assessment so I can decide if I want to get assessed.
So your not alone in wondering, and hello![/QUOTE]