If I’m Not Autistic What Could It Be?

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usagibryan
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05 Dec 2022, 8:03 am

My therapist does not think I'm autistic, just that I have anxiety. Her reasoning is that I "wouldn't have gotten this far in life" which I'm told is ableist and that I should probably seek another therapist, which I may consider doing as much as I find that task distressing, but in the meantime I also have to consider the possibility that I'm not on the spectrum. I was hoping for a diagnosis because it would have put my struggles into context. Here are some reasons why I thought I might be on the spectrum (I don't know how to get bullet points to work) and I could use some help coming up with leads for other theories:

- As a kid I had trouble paying attention in class and they diagnosed me as having ADD, then they said "no we were wrong he has OCD," then they wanted to test me for autism but my mom didn't go through with it because she didn't want me put on anymore meds. I had an IEP and was considered "emotionally handicapped."
- I'm positive I have OCD (I get the impulse to touch things then have to wash my hands after touching them, etc), but I also have an obsessive personality and like to deep dive into topics. I spent years teaching myself Japanese and have wasted hundreds of hours on Wikipedia. I had to learn how to stop obsessively talking about whatever subject I was interested at the time or risk boring people.
- As a kid I preferred to be alone and rejected play with other kids, I was practically a hikikomori in my 20s.
- I did not like to play outside or get dirty, I preferred indoor activities. I'm a Florida kid but I hate heat, the sun, sand, dirt, bugs, sweatting and getting wet. Other kids would get bored and want to do something else but I could just play Mario Kart by myself for hours. I still have nightmares about being pressured to "just get in the pool"
- I did not show any emotion when opening gifts and hated being observed when opening gifts. I rarely smiled even if I was happy.
- Other kids always seemed much more excitable, expressive and "aware" than me.
- I am very unobservant, this was a problem in social situations and I had to train myself to pay more attention to other people. I had to train myself to look at people and nod, etc. I still miss subtext that other people have to tell me about afterwards. I have to be told things directly.
- It's impossible for me to focus sometimes, I struggled in school and could not pay attention to lectures. I zone out and my mind wanders when people talk to me (I hate that I do that and I know it's rude but I can't help it)
- I like things the way I like them (this is my spot on the couch) and get upset if this gets disrupted, I had to learn how to cope with that because it's not socially acceptable to be that rigid, it's still distressing though
- I hate last minute changes to plans, or last minute social events ("hey we're all at the mall drop what you're doing and come join us RIGHT NOW") it messes up my whole day, sometimes my week, but sometimes I don't have a choice as these are social obligations and I have limited excuses.
- I hate lying, it's very uncomfortable for me. I cannot play games that involve bluffing.
- I'm clumsy, I don't always look at things I interact with, I am bad at estimating my strength and reach. I've always hated sports but even when I was forced to attempt my peers were baffled at how bad I was.
- I am strongly emotionally affected by the sensations in my own body, if I feel dirty, if skin is exposed and air is blowing on it, if I have the slightest stomachache. I can't handle sweat and I hate my body hair (not just the way it looks but how it feels too).
- I HATE that stores don't put prices on things or does stuff like "buy 3 for $10, other people think I'm nuts for caring so much. I hate it when people treat rules like guidelines or do things that don't make sense, then get upset at me for not making sense (you said 4PM not "around" 4PM, it's 4:10PM, you're 10 minutes late, etc).
- I like to organize information into spreadsheets (thank you Google Suite), including fun things like movies I've seen, but this is also how I approach my job and people at my job are "impressed" by this which tells me it's probably not normal even for techs.
- I can't multi-task to save my life
- My memory is garbage and I need to write everything down, I have tons of notes and lists.
- Fire drills are a nightmare

Lastly, and this is the biggest issue I have right now at this point at my life, all the other things either went away or I can cope with now... I need structure and can't focus if there is a lot happening in my environment. Strong smells make me sick, loud noises make me anxious, if someone is talking to me and I hear another voice whether it's a TV, music or people in the room talking, I hear NOTHING. I can't read anything if someone is talking to me. If my walkie goes off and there is chatter I have to stop what I'm doing and wait until the chatter stops before I can continue my task. I prefer to follow a rigid sequence of steps to solve problems and in a perfect world users would submit tickets and follow instructions, but they prefer to stop me in the hall, call me on the walkie (supposed to be only for emergencies), knock on my door, and they don't want to follow troubleshooting steps or procedure they're prefer I go to their noisy smelly classroom and try to solve their problem amidst the chaos, or try to keep talking to me while I'm trying to think. It feels like other people have this super power where sounds, voices and other sensations in their environment don't affect them and they can adapt easily and multitask. I can't, my brain is like a train and any distractions, interruptions to the routine or intrusive sounds and smells derails the train and it takes a while to get it back on track, and I can't do that if someone is talking. This is affecting me very negatively at my place of work, not that I can't do my job I just hate it so much and it's giving me anxiety.

Without an autism diagnosis I feel like this is just a laundry list of issues. Is it possible have OCD, ADD, Executive Dysfunction, social anxiety, sensory processing disorder and bad propioception all at the same time? Can all of this be "just anxiety?" Can these things just be personality traits like introversion? Does it have to be debilitating to be a diagnosis?


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Last edited by usagibryan on 05 Dec 2022, 9:01 am, edited 3 times in total.

magz
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05 Dec 2022, 8:23 am

This "you wouldn't get this far in life if you were autistic" is all BS. Yes, while I'm sometimes not sure where is the boundary between realistic expectations and ableism, expecting all disabled to be just objects of care is clearly super ableist.

There is a different question I'd like you to ask: what did it cost you to get to this point in your life? What does it cost you to maintain it? Do you relate to the "spoon theory" with your daily activities?

It's not about this or that label, unless it would grant you some accommodations. It's about understanding your individual needs and how to meet them.
It seems you need some order and predictability around you to feel safe. You also seem to have some sensory issues with things like heat, wetness and probably touch, noises and smells. Deep focus (but not necessarily on things you are expected to focus on) is also an autistic trait.

Label or not, you seem to need some autistic-friendly space to lower your level of anxiety.


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usagibryan
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05 Dec 2022, 8:51 am

magz wrote:
This "you wouldn't get this far in life if you were autistic" is all BS. Yes, while I'm sometimes not sure where is the boundary between realistic expectations and ableism, expecting all disabled to be just objects of care is clearly super ableist.


An autistic friend of mine I know in real life was enraged when I told him this. It's unfortunate because I do like this therapist, she is covered by my insurance, she is close by, etc. I don't like the idea of having to find another therapist and re-explain my self all over again to another stranger.

magz wrote:
There is a different question I'd like you to ask: what did it cost you to get to this point in your life? What does it cost you to maintain it? Do you relate to the "spoon theory" with your daily activities?


I think it cost me time, mostly, and maybe my sanity a little. Also friendships. It took me longer to reach certain milestones in life (first job, career, learn to drive, dating and relationship, etc) than it did for other people. I've also always felt "crazy" that I couldn't deal with normal social and life things the way other people could. Maintaining it feels like an uphill battle, especially my job, and I have to deal with anxiety, chaos and uncertainty. But I'm doing it. I could feel prouder and less bad about how long it took if I knew a handicap was put on me from the start of the race.

I have never heard of the spoon theory but just reading about it I do relate. I have to plan everything and have contingency plans for everything like Batman to function.

magz wrote:
It's not about this or that label, unless it would grant you some accommodations. It's about understanding your individual needs and how to meet them.


I don't want accommodations, I don't want my diagnosis to be public or people at my job to know, I just want to KNOW. I want an explanation. I want to know myself. Then maybe if I better understand myself I can better take care of myself, adapt and be more successful, and even forgive myself for struggling so much.

magz wrote:
It seems you need some order and predictability around you to feel safe. You also seem to have some sensory issues with things like heat, wetness and probably touch, noises and smells. Deep focus (but not necessarily on things you are expected to focus on) is also an autistic trait.

Label or not, you seem to need some autistic-friendly space to lower your level of anxiety.


I have an extremely hard time focusing, paying attention or keeping up a conversation unless it's something I'm interested in at the time in which case it's obsessive. I'm afraid this is selfish but I haven't been successful mitigating this.

Even if i'm not autistic and never get a diagnosis for whatever reason I can relate and like these spaces, it's comforting to know I'm not the only one with these issues.


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06 Dec 2022, 2:36 am

Then maybe - stay with this therapist and seek a diagnosis separately?

Life can sometimes not be well-defined enough for our tastes... I take a pragmatic approach: if a therapist helps me, I stay with them. If an advice helps me, I follow it. Being helpful does not require being perfect.

My psychiatrist said things like "ADHD does not exist" - but he helped me from my misdiagnosis and mismedication and he found meds that keep me functional. So I stay with him anyway because it helps me.

One more thing: having a difficulty with staying focused on things that don't interest you is not selfish. It's having a difficulty. You try. There's nothing selfish in finding something hard.


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06 Dec 2022, 11:04 am

I can see that Magz is providing more wisdom than I could on this...

But I will strongly agree with "wouldn't have gotten this far in life" is clear nonsense.

I did not find out I was Autistic until I was 64. Yes, my life was affected by Autism before I knew I was Autistic. Yes, socializing and romance were especially difficult for me (though there were other issues as well...like being diplomatic, etc.) But, overall, I've done reasonably well for myself.

Though not as well as Elon Musk, Dan Akroyd, and Anthony Hopkins. I would love to be there when someone told them that they could never go far in life because they were Autistic!


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06 Dec 2022, 3:14 pm

Honestly, from your description, I can't really tell if I think you are Autistic or not. You could be but it's hard to tell just from that. But one thing I know for absolute sure, you need a different therapist. If a therapist had said to me what this one said to you about not being Autistic because you got this far in life, I would run from that person like the plague.

I think that actual formal diagnostic testing for Autism would be a good idea for you so that you can be sure one way or the other. But whatever you do, get rid of that therapist. I understand that you like this therapist and that she is convenient to your location and covered by your insurance. But you need to leave her. Even if you just use someone else in her same office. I know how hard it is to start over with a new one. I have had so many therapists that I have had to start over with that it has actually been damaging to me. But I eventually found the right fit and it makes all the difference. It was so worth all the times I had to start over until I found her.

If your therapist said what she said, she is not able to help you because she is too narrow minded and misinformed. If she is that misinformed about Autism, she is misinformed and narrow minded about other things as well, I can guarantee you that. You, through your insurance, are paying a lot of money for her service. She needs to earn it. Don't stick with a therapist who is that ignorant. It will hurt you more than it can help you.


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06 Dec 2022, 4:07 pm

Double Retired wrote:
I can see that Magz is providing more wisdom than I could on this...

But I will strongly agree with "wouldn't have gotten this far in life" is clear nonsense.

I did not find out I was Autistic until I was 64. Yes, my life was affected by Autism before I knew I was Autistic. Yes, socializing and romance were especially difficult for me (though there were other issues as well...like being diplomatic, etc.) But, overall, I've done reasonably well for myself.

Though not as well as Elon Musk, Dan Akroyd, and Anthony Hopkins. I would love to be there when someone told them that they could never go far in life because they were Autistic!
P.S. I am not saying all Autistics will accomplish great achievements and go far in life. Autism comes in a range of severities. Some people are very much disabled by it; some people win Oscars or make billions, in part, due to it. But it is wrong to assume that if someone has done reasonably well in life then that proves they are not Autistic.

It's sort of a shame, too. I'm not sure how I'd feel about having a couple of Oscars but I am certain I would feel great about having a few billion dollars!


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06 Dec 2022, 8:16 pm

There are several different types of Autism. Some people with autism have asperger's syndrome. They develop very high I.Q.s and live productive independent lives.

I will make the following suggestion. There are many on line tests to determine if you have autism. They may not be totally accurate but they are close. So take some of these tests and see how well you rate.

Here is one link but there are many others. Perhaps someone on the site can provide you with better links.

Take our quick autism test


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07 Dec 2022, 7:20 am

Every time I've taken an online autism test I score very high, but those aren't official tests. I heard people with anxiety score high on those tests too. One thing I know for sure is I have many of the characteristics and can relate hard to the people in this community, but that doesn't mean I'm on the spectrum. It could be a mix of OCD (diagnosed), ADD (misdiagnosed but feel like I still have it), sheltered upbringing, social anxiety, sensory processing disorder, obsessive geekiness... whatever. I was hoping for validation from a professional but at this point I'm going to drop the issue and continue with this therapist for now, I may pursue a diagnosis in the future and maybe this therapist can help me with that but honestly I don't think my brain is going to be satisfied without 100% certified certainty and this is turning into an obsession, I'm finding myself jealous of people with an official diagnosis, which is not healthy, so I think I need to let it go for now.

skibum wrote:
Honestly, from your description, I can't really tell if I think you are Autistic or not. You could be but it's hard to tell just from that. But one thing I know for absolute sure, you need a different therapist. If a therapist had said to me what this one said to you about not being Autistic because you got this far in life, I would run from that person like the plague.

I think that actual formal diagnostic testing for Autism would be a good idea for you so that you can be sure one way or the other. But whatever you do, get rid of that therapist. I understand that you like this therapist and that she is convenient to your location and covered by your insurance. But you need to leave her. Even if you just use someone else in her same office. I know how hard it is to start over with a new one. I have had so many therapists that I have had to start over with that it has actually been damaging to me. But I eventually found the right fit and it makes all the difference. It was so worth all the times I had to start over until I found her.

If your therapist said what she said, she is not able to help you because she is too narrow minded and misinformed. If she is that misinformed about Autism, she is misinformed and narrow minded about other things as well, I can guarantee you that. You, through your insurance, are paying a lot of money for her service. She needs to earn it. Don't stick with a therapist who is that ignorant. It will hurt you more than it can help you.


I just started seeing this therapist, she specializes in anxiety which is the original reason I sought out a therapist. I do want to give it more time, the idea of trying to find another one so soon is distressing. This one covers all the topics I need help with. I'd have to find one in network that fits my needs and re-explain myself all over again, etc. I know this is a bad reason too but she's like 5 minutes from my house and the co-pay is cheap. I have no limit on my insurance. We've only had our third session and that's the longest I've ever stuck with this therapist. I do like her too.

I will heed your warning though and consider finding another therapist in the near future.

I don't know how I would begin to find actual formal diagnostic testing for Autism


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Last edited by usagibryan on 07 Dec 2022, 7:51 am, edited 2 times in total.

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07 Dec 2022, 7:30 am

its a lot to sort, and the older we are when we first discover our autism the more sorting of the past it takes to put everything into perspective. You are wise to question, take your time and learn all you can about autism, you will begin having "aha" moments and "so thats why" moments as thing click and begin to make sense.

Lots of us are diagnosed with "other things" long before we begin to suspect autism. that is partially down to the fact that autism as it is known today is so little understood by those who have been in practice for a while and who rarely see autistic individuals.
So we get "close as I can come" diagnoses... usually they will have some sort of caveat or explainer like "unusual presentation of anxiety" "bipolar with unusual features" "non typical schizophrenia" or other things.

I got diagnosis of anxiety and depression long before I found out about my autism.

Cheering you on. Learn all you can, Only you can decide for yourself if you are autistic, many "professionals" may miss it due to misunderstanding. Take your time to sort it out and do the emotional homework, soon things will be clearer as you gain understanding.

Do your best self care, diagnosis and issues surrounding it can shake everything you ever believed about your past, your self, and put things in such a completely new perspective it is like culture shock.


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08 Dec 2022, 3:13 am

skibum wrote:
Honestly, from your description, I can't really tell if I think you are Autistic or not. You could be but it's hard to tell just from that. But one thing I know for absolute sure, you need a different therapist. If a therapist had said to me what this one said to you about not being Autistic because you got this far in life, I would run from that person like the plague.

I think that actual formal diagnostic testing for Autism would be a good idea for you so that you can be sure one way or the other. But whatever you do, get rid of that therapist. I understand that you like this therapist and that she is convenient to your location and covered by your insurance. But you need to leave her. Even if you just use someone else in her same office. I know how hard it is to start over with a new one. I have had so many therapists that I have had to start over with that it has actually been damaging to me. But I eventually found the right fit and it makes all the difference. It was so worth all the times I had to start over until I found her.

If your therapist said what she said, she is not able to help you because she is too narrow minded and misinformed. If she is that misinformed about Autism, she is misinformed and narrow minded about other things as well, I can guarantee you that. You, through your insurance, are paying a lot of money for her service. She needs to earn it. Don't stick with a therapist who is that ignorant. It will hurt you more than it can help you.


Agree with the above.


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08 Dec 2022, 8:15 am

I decided I'm going to confront my therapist on this topic. I'm taking notes. I'm going to ask for further clarification about her statement and bring up the subject of successful autistic people. I've been obsessing over it for the past 3 weeks and it seems insane not to bring it up if it's been at the forefront of my mind. If I can't discuss what is on my mind then what is the point of therapy? Depending on how this and further sessions go I may or may not seek out an alternative therapist.


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08 Dec 2022, 8:31 am

go you, self advocacy is healthy. Keep us posted. Cheering you on.


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08 Dec 2022, 12:08 pm

usagibryan wrote:
I decided I'm going to confront my therapist on this topic. I'm taking notes. I'm going to ask for further clarification about her statement and bring up the subject of successful autistic people. I've been obsessing over it for the past 3 weeks and it seems insane not to bring it up if it's been at the forefront of my mind. If I can't discuss what is on my mind then what is the point of therapy? Depending on how this and further sessions go I may or may not seek out an alternative therapist.

You are paying her, you have a right to disagree.
I hope this works out for you.


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08 Dec 2022, 12:19 pm

ASPartOfMe wrote:
usagibryan wrote:
I decided I'm going to confront my therapist on this topic. I'm taking notes. I'm going to ask for further clarification about her statement and bring up the subject of successful autistic people. I've been obsessing over it for the past 3 weeks and it seems insane not to bring it up if it's been at the forefront of my mind. If I can't discuss what is on my mind then what is the point of therapy? Depending on how this and further sessions go I may or may not seek out an alternative therapist.

You are paying her, you have a right to disagree.
I hope this works out for you.


It doesn't feel like that, it feels like a doctor saying "you don't have this thing you think you have" and if I disagree I sound like a hypochondriac. I don't want to come across as a hypochondriac but for mental disorders. She has the DSM on her shelf and I said it would be fun to own that book, and she said "I don't think it would be healthy for you, let me worry about that."


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08 Dec 2022, 6:56 pm

It is quite fair for you to expect to receive correct information from a professional.

That statement by your therapist casts doubt on their knowledge about Autism, and therefore casts doubt on their ability to give you correct information and opinions related to Autism.


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