Today's session, atypical autism & other things.

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rebbieh
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27 Jun 2014, 5:47 am

I just got home from one of my assessment sessions. Our previous session was a month ago and during the month that we didn't see each other, the psychologist started to go through all the information she's gathered so far etc. Today she told me there's not that much left of the assessment (my assessment started in the end of March by the way). She has scheduled to talk to my parents in a couple of weeks and after that she needs to go through all the information again, finish scoring the WAIS-IV tests etc.

The psychologist told me that so far it seems like the information is pointing in one direction: Asperger's. She said it's not for sure yet and we still have to see what my parents say but yeah, the psychologist seems to think I'll end up with a diagnosis (though she didn't explicitly say that). I don't know how to process that. I don't know how I'll react if I actually get a diagnosis. Anyway, when I asked what the heck is wrong with me if it turns out my parents actually don't have any useful information about my childhood or if the information my parents do provide doesn't clearly point towards autism, the psychologist said it might be that my parents just didn't notice the signs when I was a child. She also said that people who clearly meet the criteria now (and have done for a long time), but where the childhood symptoms/traits are still a bit unclear, sometimes receive a diagnosis of atypical autism. So, is atypical autism on the autism spectrum? Is atypical autism actually autism? Yes, I've googled it, I just don't really get it.

Anyway, we scheduled another appointment but unfortunately we won't meet up again until the end of August since it's summer (which means the psychologist will be on vacation some of the time) plus the fact that the psychologist needs to go through loads of information, talk to another specialist and then come to some sort of conclusion. The end of August. That's two months. Perhaps I'm a weak person and I sometimes hate myself for being so dependent on mental health professionals nowadays, but I think that two months all by myself is awful. Seriously, I suffer from both depression and anxiety and that makes it very difficult to manage on my own sometimes. In July I'll be working in a neuroscience lab, which I'm really anxious about (mostly due to social issues and the fact that I'm terribly afraid of making mistakes) but at least it'll keep me busy. In August I pretty much have nothing to do and as soon as I have time to think I feel miserable. I can't relax. It sometimes gets so bad I just sit here in my room and stare into the wall. Sometimes I hit myself in the head and sometimes I just cry and don't know what to do with myself and my life.

I'm afraid of these two months. I'll be alone and without support. I'm also, for some reason, worried about getting a diagnosis. When the psychologist and I talked about what's going to happen after the assessment and when we booked an appointment for the end of August, I felt like crying. I didn't though. However, when I left and went to get my bike I just stood there by my bike and I didn't know what to do. I was fighting to keep myself from crying and I felt somewhat confused. And scared. Managed to cycle home but as soon as closed the door behind me I sort of broke down and started crying. I hardly ever cry but I cried today. Fear made me cry. I don't know how to deal with this. I love thinking and I love my brain but at the same time my brain is my nemesis.

Am I just a weak person or are these legitimate reasons for feeling anxious and afraid? Can anyone relate to this?

Sorry for all the pessimism, I just needed to vent and since I don't have anyone to talk to about this "in real life", I am once again reaching out to you. Hope that's ok. I hope someone understands and that I'm not completely alone.



Last edited by rebbieh on 27 Jun 2014, 6:11 am, edited 1 time in total.

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27 Jun 2014, 6:08 am

It sounds like the process is making you anxious and afraid, and the fact that the process is being prolonged is prolonging the anxiety.

I understand. Sometimes I get so afraid of failing that I just want someone to kill me first to just get it over with. And really, what I want to end is the feeling. It is not that I have some kind of death wish, just that the feelings get so intense that they seem unbearable.

I have not gone through the assessment process myself yet, but other situations have made me feel similar to what you describe.

I also try to keep busy in order to keep my mind away from the thoughts or feelings I don't want to be obsessing over. It doesn't always work, but sometimes it does.

Since you like biking, can you plan out some bike rides in new places for August? The planning might take your mind off things, seeing some new places might fill your mind with good thoughts, and at least the bike ride will provide some physical relief from the anxiety.



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27 Jun 2014, 6:09 am

atypical autism or PDDNOS as it was most commonly known,is autism that doesnt quite fit into any other label but is definitely on the spectrum,it can go from very mild [milder than aspergers can go] to low functioning [meaning intelectual disability included] and severe but the person will not fit criteria for classic autism.


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rebbieh
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27 Jun 2014, 9:54 am

nerdygirl wrote:
Since you like biking, can you plan out some bike rides in new places for August? The planning might take your mind off things, seeing some new places might fill your mind with good thoughts, and at least the bike ride will provide some physical relief from the anxiety.


Perhaps. I could definitely plan a couple or something but it's not like that's going to help me through all of July and especially not all of August. But yeah, I'll give it a try.

I feel pretty awful right now.



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27 Jun 2014, 9:12 pm

rebbieh wrote:
I just got home from one of my assessment sessions. Our previous session was a month ago and during the month that we didn't see each other, the psychologist started to go through all the information she's gathered so far etc. Today she told me there's not that much left of the assessment (my assessment started in the end of March by the way). She has scheduled to talk to my parents in a couple of weeks and after that she needs to go through all the information again, finish scoring the WAIS-IV tests etc.

The psychologist told me that so far it seems like the information is pointing in one direction: Asperger's. She said it's not for sure yet and we still have to see what my parents say but yeah, the psychologist seems to think I'll end up with a diagnosis (though she didn't explicitly say that). I don't know how to process that. I don't know how I'll react if I actually get a diagnosis. Anyway, when I asked what the heck is wrong with me if it turns out my parents actually don't have any useful information about my childhood or if the information my parents do provide doesn't clearly point towards autism, the psychologist said it might be that my parents just didn't notice the signs when I was a child. She also said that people who clearly meet the criteria now (and have done for a long time), but where the childhood symptoms/traits are still a bit unclear, sometimes receive a diagnosis of atypical autism. So, is atypical autism on the autism spectrum? Is atypical autism actually autism? Yes, I've googled it, I just don't really get it.

Anyway, we scheduled another appointment but unfortunately we won't meet up again until the end of August since it's summer (which means the psychologist will be on vacation some of the time) plus the fact that the psychologist needs to go through loads of information, talk to another specialist and then come to some sort of conclusion. The end of August. That's two months. Perhaps I'm a weak person and I sometimes hate myself for being so dependent on mental health professionals nowadays, but I think that two months all by myself is awful. Seriously, I suffer from both depression and anxiety and that makes it very difficult to manage on my own sometimes. In July I'll be working in a neuroscience lab, which I'm really anxious about (mostly due to social issues and the fact that I'm terribly afraid of making mistakes) but at least it'll keep me busy. In August I pretty much have nothing to do and as soon as I have time to think I feel miserable. I can't relax. It sometimes gets so bad I just sit here in my room and stare into the wall. Sometimes I hit myself in the head and sometimes I just cry and don't know what to do with myself and my life.

I'm afraid of these two months. I'll be alone and without support. I'm also, for some reason, worried about getting a diagnosis. When the psychologist and I talked about what's going to happen after the assessment and when we booked an appointment for the end of August, I felt like crying. I didn't though. However, when I left and went to get my bike I just stood there by my bike and I didn't know what to do. I was fighting to keep myself from crying and I felt somewhat confused. And scared. Managed to cycle home but as soon as closed the door behind me I sort of broke down and started crying. I hardly ever cry but I cried today. Fear made me cry. I don't know how to deal with this. I love thinking and I love my brain but at the same time my brain is my nemesis.

Am I just a weak person or are these legitimate reasons for feeling anxious and afraid? Can anyone relate to this?

Sorry for all the pessimism, I just needed to vent and since I don't have anyone to talk to about this "in real life", I am once again reaching out to you. Hope that's ok. I hope someone understands and that I'm not completely alone.


My kids have PDD NOS and and did not meet full autism due to not meeting all the criteria but not Asperger's because of speech delay. It has been 8 years since the diagnosis and my husband realized he has it too. He has lived his life with no intervention and his parents were not good parents some of the time. He just goes about his life as usual. Diagnosis of no diagnosis, just live your life. As an adult, you have managed this far. Just continue as you have and try not to put so much importance on getting a diagnosis. My husband has no interest in getting a diagnosis because what would he do with it? He knows his limitations and is okay with it. It is who he is. Focus on the symptoms you are having already and treat those. When we were waiting for our daughter's diagnosis, one of her therapists said schools treat the symptoms anyway and the diagnosis is not really not that important. Just gets one services if needed.


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27 Jun 2014, 10:25 pm

It stinks you have to wait two more months but you can take comfort that the pain of this very thorough assessment will be rewarded with an explanation that leaves no reasonable room for any doubt.


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29 Jun 2014, 1:49 am

ASPartOfMe wrote:
It stinks you have to wait two more months but you can take comfort that the pain of this very thorough assessment will be rewarded with an explanation that leaves no reasonable room for any doubt.


Yeah, you're probably right. I mean, the assessment is very thorough, indeed, and the psychologist works with people with ASD and/or ADHD on a daily basis. The thing is there are these thoughts in my head (thoughts I've had on and off for two years now) that make it really difficult to trust the whole thing. Thoughts like: "what if I'm exaggerating or lying about everything (traits/symptoms etc)?", "what if my memories are false?", "what if the psychologist gets a completely different picture of me than the picture other people get?", "what if the fact that I researched and read a lot about Asperger's when I first found out about it has influenced the assessment process and I've somehow 'picked up' traits/symptoms that I don't actually have?", "what if all of this is my own fault?" etc. I still don't know how to get rid of those thoughts and if I do get diagnosed (which seems quite likely) I will probably still ask myself all those questions.



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29 Jun 2014, 2:43 am

rebbieh wrote:
ASPartOfMe wrote:
It stinks you have to wait two more months but you can take comfort that the pain of this very thorough assessment will be rewarded with an explanation that leaves no reasonable room for any doubt.


Yeah, you're probably right. I mean, the assessment is very thorough, indeed, and the psychologist works with people with ASD and/or ADHD on a daily basis. The thing is there are these thoughts in my head (thoughts I've had on and off for two years now) that make it really difficult to trust the whole thing. Thoughts like: "what if I'm exaggerating or lying about everything (traits/symptoms etc)?", "what if my memories are false?", "what if the psychologist gets a completely different picture of me than the picture other people get?", "what if the fact that I researched and read a lot about Asperger's when I first found out about it has influenced the assessment process and I've somehow 'picked up' traits/symptoms that I don't actually have?", "what if all of this is my own fault?" etc. I still don't know how to get rid of those thoughts and if I do get diagnosed (which seems quite likely) I will probably still ask myself all those questions.

If it is not ASD she will figure it out what it is and you will get treatment for that. I think the result will either be Aspergers or if she can not get enough information from you mom Atypical Autism. I know that me saying that is not comforting. My mind was in a very similar pessimistic state as yours is currently prior to my diagnosis. I was told by my brother that when he was describing me to the psych at times he did not get to complete his thoughts because she was completing it for him. That meant what he was describing about me was very obviously Aspergers traits. When he told me this I did understand that the evidence clearly showed the decision to diagnose me with Aspergers had been made. This did nothing to ease my doubts. I had to hear her say it. I would not join this site until I heard her say it. So I do have a good understanding of the horror of uncertainty you are going through now. I can't say all doubts went away after the diagnosis but these thoughts have eased so much they are not crippling or impeding me anymore.

Until August you are not alone, we are here :)


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29 Jun 2014, 9:30 am

If you are a data person like me, it will be great to have so much data on yourself. But the process seems unduly drawn out. I don't believe there is an evidence based justification for such a process.

There are financial and emotional considerations here. The emotional impacts are clear. It seems borderline unethical to do this when the tests could be done in a day or two.

In any case, congratulations on nearing the end of the process. I suspect you will still have all the same questions afterward, as you say, but it is really VERY useful to have the information you are getting, when going through those thoughts.

As ASPartOfMe says, there are many great people here. Do reach out if you need support.



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29 Jun 2014, 12:32 pm

ASPartOfMe wrote:
If it is not ASD she will figure it out what it is and you will get treatment for that. I think the result will either be Aspergers or if she can not get enough information from you mom Atypical Autism. I know that me saying that is not comforting. My mind was in a very similar pessimistic state as yours is currently prior to my diagnosis. I was told by my brother that when he was describing me to the psych at times he did not get to complete his thoughts because she was completing it for him. That meant what he was describing about me was very obviously Aspergers traits. When he told me this I did understand that the evidence clearly showed the decision to diagnose me with Aspergers had been made. This did nothing to ease my doubts. I had to hear her say it. I would not join this site until I heard her say it. So I do have a good understanding of the horror of uncertainty you are going through now. I can't say all doubts went away after the diagnosis but these thoughts have eased so much they are not crippling or impeding me anymore.

Until August you are not alone, we are here :)


I guess I'm just really afraid that I'll end up with a diagnosis if I'm not actually on the autism spectrum. Do you know what I mean? Anyway, thank you. I have a feeling you (all of you here at WrongPlanet) will hear from me a bit during these two months. It's hard to deal with that alone.

Adamantium wrote:
If you are a data person like me, it will be great to have so much data on yourself. But the process seems unduly drawn out. I don't believe there is an evidence based justification for such a process.

There are financial and emotional considerations here. The emotional impacts are clear. It seems borderline unethical to do this when the tests could be done in a day or two.

In any case, congratulations on nearing the end of the process. I suspect you will still have all the same questions afterward, as you say, but it is really VERY useful to have the information you are getting, when going through those thoughts.


The process is drawn out quite a bit now during the summer, yes. Since the end of March when my assessment started I've seen the psychologist for 1-2.5 hours a week (sometimes every other week), which I think is ok. It's a very thorough assessment, which I think is positive. Here in Sweden you don't have to pay for the assessment either so it's not difficult for me financially. It is, however, very difficult emotionally (like you said) when I have to wait this long.

Anyway, I'm a person who likes information so I'm really looking forward to go through the results with the psychologist (she said we'll have at least two or three sessions for that) and try to talk about how to process the whole thing etc. I'm afraid the thoughts will never go away though. What if I'll forever have these doubts?

Adamantium wrote:
As ASPartOfMe says, there are many great people here. Do reach out if you need support.


Thank you. I will (even though I feel like I'm stupid and annoying every time I do).



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29 Jun 2014, 12:47 pm

rebbieh wrote:
She also said that people who clearly meet the criteria now (and have done for a long time), but where the childhood symptoms/traits are still a bit unclear, sometimes receive a diagnosis of atypical autism. So, is atypical autism on the autism spectrum? Is atypical autism actually autism? Yes, I've googled it, I just don't really get it.
Yes, atypical autism is autism. It's just a type that doesn't fit neatly into any of the known categories. The known categories are Asperger's, classic autism, or one of the genetic autistic-like syndromes like CDD, Rett's, and the cases of Fragile X and Down syndrome that include autism. But not everybody fits into those; in fact, most autistic people don't (about 60%). That's part of why they changed the DSM to just merge the spectrum and call it all autism spectrum disorder, because most cases don't fit neatly into subcategories. Atypical autism is also known as PDD-NOS in the DSM-IV, and in the DSM-V it is called autism spectrum disorder and assigned a severity level based on how strong your symptoms are.

In your case, you might get an atypical autism diagnosis if your parents can't provide good information because the autism criteria presume that it is a disorder first diagnosed in childhood. Without that childhood history, they wouldn't be able to tell whether you had had a speech delay or delay in adaptive skills that you'd since caught up on, so they wouldn't be able to tell whether you were classic autism or Aspie. And so they'd just say, "Well, you're autistic, but we don't know which type, so we'll call it atypical." Ironically, atypical autism is the most typical kind.

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Perhaps I'm a weak person and I sometimes hate myself for being so dependent on mental health professionals nowadays, but I think that two months all by myself is awful. Seriously, I suffer from both depression and anxiety and that makes it very difficult to manage on my own sometimes.
Tell your counselor that. You might not have regular appointments, but make sure you get hooked up with a help line that you can call if you have some kind of a crisis. A mentor, spiritual leader, or relative can also help when you need to talk.

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In August I pretty much have nothing to do and as soon as I have time to think I feel miserable.
Find something. Volunteer work? Craft project? Hobby? Hanging out in the library and reading everything in sight? Don't just sit there; you know you tend to brood when you do, and you don't like that, so--find something, preferably something purposeful and meaningful.

Quote:
I can't relax. It sometimes gets so bad I just sit here in my room and stare into the wall. Sometimes I hit myself in the head and sometimes I just cry and don't know what to do with myself and my life.
Have you been assessed for depression or anxiety disorders? I don't know if those symptoms are severe enough to need treatment, but it sounds like something you might like to bring up. Sometimes depression gets better once a person with a missed diagnosis starts to get an explanation for all these deficits--they feel less alone, and more like they have a handle on the problem. Mine did. But I still have those tendencies and they're still a problem when I don't watch it.

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Am I just a weak person or are these legitimate reasons for feeling anxious and afraid? Can anyone relate to this?
Totally legit. You're feeling socially isolated and afraid you can't get help when you need it; you're waiting for results on something that might or might not tell you a lot about yourself; you know you tend to get depressed and you dread having it happen again. Your anxiety and fear sound like pretty normal reactions to me.

And, no, you are not alone. I honestly see a lot of universal human emotion in your post--who am I? will I be able to do something meaningful? what will people think of me? what does it mean to be different? will I be able to cope with difficult times in my life? Totally. People all over the world are afraid of those things, autism or no autism.


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29 Jun 2014, 1:39 pm

Callista wrote:
Yes, atypical autism is autism. It's just a type that doesn't fit neatly into any of the known categories. The known categories are Asperger's, classic autism, or one of the genetic autistic-like syndromes like CDD, Rett's, and the cases of Fragile X and Down syndrome that include autism. But not everybody fits into those; in fact, most autistic people don't (about 60%). That's part of why they changed the DSM to just merge the spectrum and call it all autism spectrum disorder, because most cases don't fit neatly into subcategories. Atypical autism is also known as PDD-NOS in the DSM-IV, and in the DSM-V it is called autism spectrum disorder and assigned a severity level based on how strong your symptoms are.

In your case, you might get an atypical autism diagnosis if your parents can't provide good information because the autism criteria presume that it is a disorder first diagnosed in childhood. Without that childhood history, they wouldn't be able to tell whether you had had a speech delay or delay in adaptive skills that you'd since caught up on, so they wouldn't be able to tell whether you were classic autism or Aspie. And so they'd just say, "Well, you're autistic, but we don't know which type, so we'll call it atypical." Ironically, atypical autism is the most typical kind.


Thanks for explaining all of that. I've got a follow-up question though: let's say my parents can't provide enough information about my childhood and I end up with a PDD-NOS diagnosis, how will they know I'm autistic? If they can't prove it was there during my childhood, how can they know I'm autistic? The psychologist already knows I had no speech delay (spoke and read very early) and I know my parents have some useful information but what if it's not enough and I get a diagnosis even though I shouldn't (or don't get a diagnosis even though I should)?

Quote:
Tell your counselor that. You might not have regular appointments, but make sure you get hooked up with a help line that you can call if you have some kind of a crisis. A mentor, spiritual leader, or relative can also help when you need to talk.


She knows about it. I told the psychologist about how worried I am about the summer. Even though she seemed like she cared there's not really anything she can do. She said I can always turn to the people who deal with psychiatric emergencies if I really need it but even though I have sometimes felt so bad I've been thinking about contacting them, I never have and I probably never will.

Quote:
Find something. Volunteer work? Craft project? Hobby? Hanging out in the library and reading everything in sight? Don't just sit there; you know you tend to brood when you do, and you don't like that, so--find something, preferably something purposeful and meaningful.


I'll do my best. I think I might go home to my parents for a week in the beginning of August (they live in another city) and I'll also read as much as I can. I average 5 books a month so perhaps I'll set a goal of reading 10 books this summer and then see where in August we're at when I've reached that goal.

Quote:
Have you been assessed for depression or anxiety disorders? I don't know if those symptoms are severe enough to need treatment, but it sounds like something you might like to bring up. Sometimes depression gets better once a person with a missed diagnosis starts to get an explanation for all these deficits--they feel less alone, and more like they have a handle on the problem. Mine did. But I still have those tendencies and they're still a problem when I don't watch it.


Yes, I've been assessed. It's been said that I fit the criteria for social anxiety disorder, depression, generalised anxiety disorder and OCD but I'm not sure I've actually got the diagnoses and I doubt the OCD diagnosis (though I certainly have a lot of compulsions).

Quote:
Totally legit. You're feeling socially isolated and afraid you can't get help when you need it; you're waiting for results on something that might or might not tell you a lot about yourself; you know you tend to get depressed and you dread having it happen again. Your anxiety and fear sound like pretty normal reactions to me.

And, no, you are not alone. I honestly see a lot of universal human emotion in your post--who am I? will I be able to do something meaningful? what will people think of me? what does it mean to be different? will I be able to cope with difficult times in my life? Totally. People all over the world are afraid of those things, autism or no autism.


Thank you. I feel very lonely a lot of the time, even around people. It's tough but yeah, thank you for writing all of that. Feels good to know I'm not weird.



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29 Jun 2014, 3:53 pm

rebbieh wrote:
(mostly due to social issues and the fact that I'm terribly afraid of making mistakes)


i can relate to that, i think being afraid of making mistakes or being perceived as "overly sensitive" prevented me from "acting out" in a manner that would've gotten me noticed and help earlier in life. i didn't want to do the "wrong" thing, but didn't really have the means to do the "right" thing, so it was more i just disconnected. i think it's probably actually pretty common.

rebbieh wrote:
Am I just a weak person or are these legitimate reasons for feeling anxious and afraid? Can anyone relate to this?
what really helped me was understanding that a concept like a "weak person" is largely external influences.

if someone is calling you weak, what does that say about them? is it showing a lack of compassion and empathy towards you on their part? is it serving their particular biases toward reality? is it being controlling? why would any one care if someone else is "weak"?

if someone is criticizing you, i think you can safely assume that they haven't felt what you're feeling because it seems obvious that you don't feel well about feeling this way and it's not something that you can just choose not to experience. it's easier said than done, but for me, accepting that if i'm feeling it it's legitimate was helpful.

if you look at it from a rational perspective, what does feeling shame or guilt over how you are feeling help you move beyond that? it's proven that the most effective method of learning is through positive feedback and re-enforment. if you aren't being empathic and kind to yourself it actually makes it harder to learn new skills.

you can say, yes, i want to make changes and learn skills that help me deal with things in a different manner, but you have to start where you are, not where you are someone else thinks you should be. for instance, if you try some different stress management and anxiety reducing techniques you're more likely to stick with it if you feel good about yourself for practicing them. if you feel "weak" for needing to use them, you're making it likely so that you won't use them! if you need someone else to help teach you these skills, you can feel good that you are choosing to work on positive changes, if you feel "weak" in learning them you likely won't continue to learn them and then you're back to where you started!

i mean, as long as you aren't physically or emotionally harming another person, there isn't a need to feel bad. :)

this may not be true for you, but i found that "weak" or anxious is the flip side to sensitive and observant. i could think of many times that these skills have served me well and are positive aspects of my character that i appreciate a great deal.



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01 Jul 2014, 5:17 pm

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Thanks for explaining all of that. I've got a follow-up question though: let's say my parents can't provide enough information about my childhood and I end up with a PDD-NOS diagnosis, how will they know I'm autistic? If they can't prove it was there during my childhood, how can they know I'm autistic? The psychologist already knows I had no speech delay (spoke and read very early) and I know my parents have some useful information but what if it's not enough and I get a diagnosis even though I shouldn't (or don't get a diagnosis even though I should)?
In many cases, a psychologist can't be absolutely sure of their diagnosis, so they basically take their best guess. If they can't get childhood history from someone other than the patient themselves, they get what they can from the patient and put that together with everything else, and pick the most likely explanation. If it's more than just social anxiety, more than just an unusual thinking style, more than just being eccentric--if autism is the best explanation, then that's the diagnosis they'll put on it. Psychology is a science (believe it or not) and in science, you never know things absolutely for sure. Like--we're very nearly 100% certain that gravity exists... but not absolutely certain, because something could still come along and disprove even such a well-established idea. In research we go on the principle that if we're 95% sure, or 99% sure, then we can "pretend" we think it's a fact for sure and go from there.

When a patient needs a diagnosis and it's more certain than not that a particular diagnosis fits, the best policy for many psychologists is to go with that diagnosis and see whether it helps. If it doesn't, they re-evaluate.


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Reports from a Resident Alien:
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Autism Memorial:
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