scared of having autism

[Judge]

I've taken a few online tests, and they usually have me lower on the spectrum, but still there. On the AQ test I got a 27/50, give or take a few answers I wasn't completely sure on.

I remember the first time I took Baron-Cohen's AQ test. I scored 28. At a time when I was still inclined to deny being on the spectrum, and answered those test questions based on what I thought they wanted to hear- not my actual answers.

Much later I let all my guards down and scored 41. Which simply reflects who and what I am. And I accept it.

 

[Burneraccountforventing]

@MildredHubble Yes, pushback from parents was one possibility I had wondered about. Other possibilities are being home-schooled, or having a high intelligence which allows better masking even at a young age. We can probably thank the Autism Speaks idea, from back then, that autism=tragedy for causing a lot of unfortunate parent pushback.

In my early school years up until grade 6 I did very well, other than a class I was in very briefly to help with speech, I was completely fine, even in a few classes where they selected the "most gifted" or something for more creative and higher level projects. There were only like 10 of us out of around 100 in my grade chosen. They'd encourage us to do stuff more outside the box and have us do some basic engineering.

But after grade 6 everything in school completely dropped. I went from being almost perfect in school to failing almost every class. And I never really got back to where I was. Never graduated highschool and only have my GED partially completed, without having made any progress on it in a while.

I talked to some school counselors around grade 7 and 8 about it but they were just more focused on getting my grades up, never really talked about home stuff or anything, just asking how they could help, and I always just said "I don't know"

I'm not sure how good they were either, a friend of mine started smoking weed around that time, and when he told a counselor there, she called cps on his parents, even without any other details about his parents possibly being involved with it.

After that I moved around to a couple different highschools before dropping out.

If I am on the spectrum at all, I suspect it's barely, with a lot of the teachers I had and how uninvolved I was after grade 6, I don't know if they would've even noticed

 

[MildredHubble]

I remember the first time I took Baron-Cohen's AQ test. I scored 28. At a time when I was still inclined to deny being on the spectrum, and answered those test questions based on what I thought they wanted to hear- not my actual answers.

Much later I let all my guards down and scored 41. Which simply reflects who and what I am. And I accept it.

I had a similar experience. Owing to the attitudes of a few medical professionals I had encountered I started to mask my fondness for solitude and answered the questions on the AQ test regarding socialisation in the way I thought I "should" not the way I really wanted to.

When I answered the questions "warts and all" I went from a mid 20s score to 38 or 39 (can't remember for sure but I think I have a screen grab on my phone).

I think this demonstrates the importance of answering accurately and bearing in mind just how ingrained masking can be.

 

[Judge]

I had a similar experience. Owing to the attitudes of a few medical professionals I had encountered I started to mask my fondness for solitude and answered the questions on the AQ test regarding socialisation in the way I thought I "should" not the way I really wanted to.

When I answered the questions "warts and all" I went from a mid 20s score to 38 or 39 (can't remember for sure but I think I have a screen grab on my phone).

I think this demonstrates the importance of answering accurately and bearing in mind just how ingrained masking can be.

Reminds me of the state of denial I was once in just questioning whether or not I was on the spectrum. As a quest of sorts, it was one bumpy road for me, strewn with potholes. But clearly I eventually came to terms with my own reality, and can be at peace in at least knowing who and what I really am.

 

[MildredHubble]

In my early school years up until grade 6 I did very well, other than a class I was in very briefly to help with speech, I was completely fine, even in a few classes where they selected the "most gifted" or something for more creative and higher level projects. There were only like 10 of us out of around 100 in my grade chosen. They'd encourage us to do stuff more outside the box and have us do some basic engineering.

But after grade 6 everything in school completely dropped. I went from being almost perfect in school to failing almost every class. And I never really got back to where I was. Never graduated highschool and only have my GED partially completed, without having made any progress on it in a while.

I talked to some school counselors around grade 7 and 8 about it but they were just more focused on getting my grades up, never really talked about home stuff or anything, just asking how they could help, and I always just said "I don't know"

I'm not sure how good they were either, a friend of mine started smoking weed around that time, and when he told a counselor there, she called cps on his parents, even without any other details about his parents possibly being involved with it.

After that I moved around to a couple different highschools before dropping out.

If I am on the spectrum at all, I suspect it's barely, with a lot of the teachers I had and how uninvolved I was after grade 6, I don't know if they would've even noticed

I really hate it when counselors say things like "how can I help". I'm sure they believe it encourages kids/people to talk about what they want to. But it always just shut me down. I always wanted them to take the initiative and help me to share what was going on. I always felt like I'd be in trouble for telling the truth about what things were like at home.

Also I kinda wonder how successful this strategy is with kids on the spectrum really is. It's always seemed like more of a rhetorical question to me and I've walked head first into those and been heavily mocked or chastised because I believed that they were soliciting an actual answer.

But if you are even just a little on the spectrum, it's good to know for sure. The more you can learn about yourself the better ultimately. This can lead to more successes in the future.

 

[mysterionz]

Hey, welcome.

Took the AQ test myself despite having a diagnosis since grade school, got a 36.

Also, thank you for going about the self diagnosis process in a sensible and realistic way and not like how the TikTokkers have started to claim they’re autistic without thinking about the actual process of questioning.

 

[Slime_Punk]

I did the same and got 41. What's the max score, 50?

 

[Owliet]

Firstly welcome. I really understand and can relate to some of the things you said. i was diagnosed as a teenager (16-17) and as a girl, wanting to fit in and finding out that the reasons why all these things were challenging for me was because of me being ASD was really hard. It also didn’t help that I had a parent who treated me like I was r******* and would often insult, mimic and treat me differently from my normal sibling. It does get easier. You are not doomed if you are on the spectrum. If you feel like you have ASD and it fits you perfectly, then what difference would it make having it confirmed when you’re 21 and all your life so far has been like this? It may help that you will have access to some form of support, a better understanding of yourself and you can find strategies to help you navigate the world. But you’ve made it this far without support and with a not very supportive family. I think you’re being too hard on yourSelf. When I was diagnosed, I thought my life was over. I didnt really know what ASD was and I dont think I knew much about it. It was all new to me. I felt that the obstacles that came up would never go away. And whilst New obstacles come up, I have always gone over obstacles despite of having ASD. It’s just a part of me but doesn’t make me 100% me — does that make sense?

(I am undiagnosed, but fit many symptoms perfectly)

I'm EXTREMELY new to this, like didn't even consider having any form of autism until 24 hours ago. But a family member came to me and pointed out a lot of symptoms that I exhibit, and after thinking it over, I keep seeing more and more evidence in myself that it's true.

I'm 21 years old, a few months into a new job that I feel I'm actually going to keep for a bit. And I hope I'm on the verge of really starting my life. and I'm now terrified that I might be doomed to not live the life I want.

I've always had social issues, always talked a little differently, and never really have been able to keep a relationship with a significant other for long. Things I've always strived and hoped I could get better with and improve on. But now I feel like any hopes of improving in life is just gonna be halted.

My home is not accommodating for what's going on with me, outside of that one family member that mentioned something to me, I find my family to be fairly toxic and I'm terrified to mention anything to them.

I feel like the life I want and have been hopeful to achieve was just shown to be impossible for me and I don't know what to do now, I always thought it was just depression or social anxiety that would mostly go away once I really got out into the world, but now that I'm so close to actually doing that, I'm afraid nothing will ever change.

I really don't know what I'm expecting from posting this here, but I'm just so scared and I don't know who in my life to talk to about this.

Nothing really is impossible unless we make it. I really thought I would never graduate, but I have 3 degrees. I never thought I would have friends, but I did have some friends. I should get more now. I didn’t think I would have a job, but I did have a job and anything else that I have as a job I always do well in and that’s not something that is easy in the field for me Because I have to mask. it could be depression or anxiety that makes you feel like this, I have both. And the voices that tell me that I can’t do this and stuff really makes me feel like I can’t achieve anything when that’s not entirely true. Things will change. Things do get better. Finding out that you have ASD will not change anything but help you make sense of yourself.

I'm more just extremely disheartened at the thought of my problems I've struggled with for my whole life being harder, if not impossible to fix. I always have kept going, and telling myself that when I really get out there, all my social anxieties and problems would start to fade. I've had this obsession with appearing normal to others my whole life.

If you have support in place which is a lot easier with a diagnosis, you can find strategies to help work the problems and help manage it. The fact that you always keep going and telling yourself that things will get better, is pretty admirable. Like i said, I really wanted to be normal to others, I dread people thinking I am not normal. But if people judge you for not being their “normal” then what does that say about them?

I really don't feel like a freak or a spaz now because of this. Just feel like the goalpost I thought was right in front of me has ended up being impossibly far away, and it hurts.

Got to admit, seeing those words is not too dissimilar to what my mom used to call me growing up, even before the diagnosis. I think it’s better to know what I am and make sense of things rather than living around in the dark and feeling upset and confused and forever wondering.

Goalposts are still there. You sound like you’ve achieved some things already. And you do seem to have some form of drive to get to those obstacles. You can do it.

 

[Progster]

I think it might be useful to go through the AQ test with a close family member or the person you talked to about it, to see what their answers would be about you. When I first mentioned to my mum that I thought I was on the spectrum, she told me a lot of traits that I didn't even know that I had, due to a lack of self awareness on my part. Others see things I don't. And then, she could recall things from my childhood that I had forgotten about or wasn't aware of or I didn't know the significance of them, because as far as I was concerned, they were just me being me, but to others they were strange.

When I took it for the first time about 15 years ago, I took it for fun and got 29, it said that I had autistic traits and autism is possible, but it was still below the cut-off point. I didn't believe at that point that I was autistic, and so I didn't pursue it any further and forgot about the test. But then I kept having problems, an endless cycle of getting a job, burning out and either quitting or getting fired. Someone even told me that I was intelligent, but had poor social skills. Then I watched a movie with an autistic character "Max and Mary" and heard the term Asperger's for the first time. I researched it and came across a site explaining how Asperger's presents in adults. I could identify with a lot of the traits on that list, in particular problems with noise sensitivity, which I always had. It was a light bulb moment for me. When I reached my 40s, I thought I was doing better socially. I had learned to mask and cope with that specific environment, which is why I scored lower on that test the first time I took it. But then, I moved into a new job in a new environment, and just couldn't cope. I later took it and got 41.

For me, it was a relief to know that I had it, because I now had an explanation as to why I was having all these difficulties and why my experience of the world didn't seem to match that of other people. Knowledge is power; with this better understanding of myself, I was better able to find ways to cope and not be too hard on myself. I don't regret my diagnosis at all, if anything, it empowered me.

 

[NB79]

hey, autism is known to make people suffer from 'social issues', but don't 'appropriate' all that bad stuff for yourself, for me being aware that autism existed was a relief because i could see other people were having the same problems.
But no way it should make you feel less capable than before.

 

[Kevin1968]

One of the characteristics of being autistic is having a "spiky skillset", i.e autistics tend to be naturally either a lot better or a lot worse in a variety of different skills. It may be helpful for you to list the various areas where you are better and the ones where you can try to improve (if you want).

Many autistics have learnt to fake the skills they don't have naturally so they learn how to do something resembling eye contact and also learn "scripts" to help with social/work situations. This is sometimes called "masking" and there are reports of it being very draining on autistics I have also read about some autistics becoming experts on body language.

Using the skills you are naturally strong at may be an easier option, but perhaps use some time to see if you can fake the social stuff.

There are many very successful autistics, I suspect because they found the niche that suited them and let them thrive.


Incidentally words like "spastic" or "spaz" shouldn't really be used. They are obsolete words referring to cerebral palsy, now often used as slurs

 

[Ken]

Hi and welcome to the forum!

I have wanted to reply to your post since you first posted it, but I have been busy with work. I have wanted to reply because you are exactly, well almost exactly, where I was when I was 21. I’m now looking back on that 70 years of my life with lots of reflection.

You say that you are now terrified that you might be doomed to not live the life that you want. I really want to express to you that NO – you absolutely are not doomed!

Being autistic does indeed make life hard. It often – actually most often makes life miserable and excruciatingly difficult. But, difficult does not equal impossible. Just difficult. So, it’s just a matter of how much difficulty you are willing to endure. In my case, I don’t think I had a choice. I was driven by my autistic obsession. It was absolute hell, but I actually achieved my life’s goal. It also requires the understanding that conventional methods are not necessarily the only or even best way. There is always more than one way to achieve almost anything. Autism is being different. Another term for “different” is innovation. It was my difference – my innovation that made my career.

My home was also not accommodating to me. My family was not just fairly toxic – they were full on toxic. At a very early age, I knew something was very wrong with me. My father hated me.

I had absolute plans and goals for my life as early as my single digit years. I was obsessed with everything electronic. I wanted to know everything about it. I was obsessed with studying electronics theory. I had my heart set on being an electronics design engineer. As I progressed in school however, my plans and hopes of ever achieving that life dwindled and was quickly dashed – long before my 21’st year. My performance in school was horrible. I knew that I needed lots of math and physics to be an engineer. But, I couldn’t even pass related math and totally failed algebra. This was a devastating realization. I, nor anyone in my life, school or community knew anything about autism or had even heard the term. My school diagnosed me as retarded.

Even as all hope of any chance of being an electronics design engineer lost, I could not shake my electronics theory obsession. I was addicted to studying electronics theory and physics.

To shorten this long story, at the end of it all, I found that there is more than one way to achieve anything. The traditional way to become an electronics design engineer is a college education, but I could not do college. My social anxiety was totally crippling. I found that I am unable to be taught because teaching is a social event. However, that doesn’t mean I can’t learn. I just have to do it alone. So, I spent years worth of hours in university library’s studying college physics, math, and electronics. Studying on my own, I was never limited by a curriculum.

I never had any brilliant game plan to achieve my career. From the start to finish, I never knew what I was doing. I was just autistically obsessed, which ended up making my career a success. That happened because I was relentless in the pursuit of knowledge and jobs involving electronics technology. I got jobs as a repair technician. Without any formal education I had to request being tested; I asked to let me fix something to prove I could do it. That worked enough to get the jobs and then each job was a reference for the next. I gradually built a reputation. Finally, I got a job as a technician building prototypes for design engineers. I was enthralled to work there. I was finally working in an engineering business, even if I wasn’t an engineer. With my autistic social blindness I didn’t know when to keep my mouth shut, thus I would often point out design flaws to the engineers. They were initially highly offended, but then the prototypes proved I was right. Then the engineers started coming to me with questions about physics and electronics theory which kept reducing design flaws, making their output more efficient. The boss was one of those engineers and after a few years made a rule that all designs had to be reviewed by me before going to prototype stage. Then a few years after that I was promoted to Senior Design Engineer.

Even with that success I didn’t realize that I had actually achieved my original life’s dream and goal, until after I retired. Upon reflection of my life I realized that goals can be met that seem totally impossible. They don’t have to be by traditional means. I may have made it to my dream career in a non conventional way, but I still made it. Indeed, being normal is never being great. And now I realize that my greatest asset to achieving that goal was my autism. Autistic’s are different. We see things in a different way. We have a different perspective. For most of my life, that difference was very cruel and terrifying. Makes me feel like I am living in a horror movie, much like the “Twilight Zone” TV series. Indeed, autism is no piece of cake. It definitely makes life hard. But, hard does not equal impossible. It’s just hard. The thing to understand is that different is actually innovation and it was the innovation that made my career.

If you are indeed autistic, I want you to know that you are in very good company: Albert Einstein, Dan Aykroyd, Daryl Hannah, Anthony Hopkins, Tim Burton, Hans Christian Andersen, Bill Gates, Thomas Jefferson, Steve Jobs, Michelangelo, Amadeus Mozart, Ludwig Van Beethoven, Sir Isaac Newton, Jerry Seinfeld, Nikola Tesla, Andy Warhol, Elon Musk, Benjamin Franklin, Henry Ford, Abraham Lincoln and many, many more are all autistic. Yep, they all had hard lives, but they all achieved great things. And so can you.

 

[Jordy]

I get it, autism sucks

 

[Alexej]

Hi and welcome @Burneraccountforventing

I was diagnosed later in life 65 and am still learning about autism and also how autism manifests in me.

It is a long journey to recognise and accept difference,

 

[Judge]

Personally I believe it's still better to know who and what you are, rather than to continue to stumble through life without having any real idea why so many of our social interactions go bad.

Something that eluded me up until around the age of 55. Growing up in a world at a time when autism wasn't well understood within the medical and scientific communities. Despite having two parents who somehow knew there was something "different" about me.

 

[Ken]

I get it, autism sucks

Yep, autism sucks. We all know that.
But, there has never been a person ever existing on this planet that has never had a totally sucks part of their life.
Everyone has their own difficulties. Yes, my autism has made my life suck, but I know lots of NT's that has had a far more sucks life than me. It's all just different sucks. It's not a competition. Everyone has their own sucky life.
It's easy to say that life is not fair. And it is easy to feel that others have a "better" life and you are stuck with a more sucks life, but even famous movie stars have a very sucks life. You just don't know it because you are not living in their shoes and their life is all about masking (acting). Some movie stars try to hide with drugs and even suicide.

As much as my life has sucked because of my autism, I realize I would not be who I am, nor would I have ever reached my current state in life if I were not autistic. The good and the bad, this is who I am. (Reminds me of the song, "This is Me.")

I usually suffer a lot of self-loathing, I know plenty of NT's that hated themselves enough to commit suicide. Don't worry, there are plenty of sucks to go around and none of us has an exclusive on it.

You have to realize, there is also plenty of totally rocks parts of our lives and try to capitalize on that. As an autistic, you have some unique, special talents that totally rocks. (I generally struggle to keep that in mind myself.)

By the way - loved the video.

 

[Jordy]

Yep, autism sucks. We all know that.
But, there has never been a person ever existing on this planet that has never had a totally sucks part of their life.
Everyone has their own difficulties. Yes, my autism has made my life suck, but I know lots of NT's that has had a far more sucks life than me. It's all just different sucks. It's not a competition. Everyone has their own sucky life.
It's easy to say that life is not fair. And it is easy to feel that others have a "better" life and you are stuck with a more sucks life, but even famous movie stars have a very sucks life. You just don't know it because you are not living in their shoes and their life is all about masking (acting). Some movie stars try to hide with drugs and even suicide.

As much as my life has sucked because of my autism, I realize I would not be who I am, nor would I have ever reached my current state in life if I were not autistic. The good and the bad, this is who I am. (Reminds me of the song, "This is Me.")

I usually suffer a lot of self-loathing, I know plenty of NT's that hated themselves enough to commit suicide. Don't worry, there are plenty of sucks to go around and none of us has an exclusive on it.

You have to realize, there is also plenty of totally rocks parts of our lives and try to capitalize on that. As an autistic, you have some unique, special talents that totally rocks. (I generally struggle to keep that in mind myself.)

By the way - loved the video.

So you agree, autism sucks.

 

[NB79]

So you agree, autism sucks.

It can suck big time, i envy other people when they connect with each other so easily and can express their feelings and other people understand them, that a super power i exchange for some of the other whatever superpower autism can give you.

 

[Ken]

So you agree, autism sucks.

Obviously, I failed to make myself clear. Just one more try:

It's all relative. Autism is a very broad subject. There are elements of it that absolutely "suck" and there are elements that are absolutely elevating.

Which would you rather have Autism or Cerebral Palsy?
Autism or Cystic Fibrosis
Autism or Multiple Sclerosis
Autism or Parkinson's Disease
Autism or Amyotrophic Lateral Sclerosis (ALS)
Autism or Alzheimer's Disease
Autism or Schizophrenia
Autism or Prometheus Syndrome
Autism or Morquio Syndrome
Autism or Lupus Disease
Autism or Cancer
Autism or Crohn's Disease
This list is far longer than I care to continue with.

To clarify my point, regarding life in general, No, I don't agree autism "sucks". Looking back over my life, I am glad I am autistic. It has me me who I am and I don't want to be anybody else. There has been lots of difficulties along the way, but EVERYBODY suffers difficulties; autistic or not.

I do not believe in the "Woe is me" mentality or stifled in self pity. That is never helpful.

 

[Ronald Zeeman]

IT is not a bogyman.