Losing the Aspergers/Autism explination?

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Frankly, many doctors in all fields of medicine don't bother to listen to their patients; they believe their word is gold--that they have access to this esoteric knowledge that the "average Joe/Jane" could not begin to understand.

Maybe they do have access to this "knowledge"--but it doesn't mean they should not listen to what patients say about their own bodies.

They feel that they are some kind of "authority" because they believe they are responsible for peoples' lives--that, through their training, they have taken on some grave responsibility. This is reinforced by the high cost of malpractice insurance.

It doesn't matter though. You have to do what you have to do. I'm probably one of the poorest people on here (and I'm not even exaggerating, trust me), but in my case, we did what we had to do, which was keep going to doctors. If you can't afford to go often, you're definitely not alone. Just do what you can afford when you can afford it. If you've ever watched shows like Mystery Diagnosis, this is what the patients often reiterate: you know your body (or for parents, your child) better than the doctor does, so keep on researching whatever you're experiencing and trying to find someone who will listen to you and work with you to give you an answer, even if it's one you don't like or agree with. Just make sure that they listen to you.

It really should not be traumatic in the sense that someone stops trying to figure out the problem they're experiencing, but maybe I'm just a bit insensitive on topics like these because I've been through this as well as much much worse and I don't consider not being listened to a big deal when there are more important/serious things in life people go through. I wasn't listened to about AS either, but again, it's not a big deal to me, because I've put things in perspective. Of course everyone's different and deals with these types of situations differently, but throughout my many hardships, I've found that if you get stuck and focused on unimportant things (such as not being listened to), you'll lose focus of the ultimate goal, which is getting the help you need, whatever that may be. It can be depressing to not be listened to, no doubt, but it's not something you should get hung up on.

I suppose my plans are complicated? After graduation, I'm pursuing a graduate certificate in ASDs because I don't want to be one of those professionals who just says they know about autism; I want to actually know about it from a clinical perspective. And after that, I'm actually planning on going the MD/PhD route: PhD in Clinical Psychology (but I've also considered behavioral neuroscience, immunology, or genetics) and then a residency in child neurology (or developmental/behavioral pediatrics) so I can both work with (mainly assessing) and research neurodevelopmental disorders. I'm mainly planning on using the PhD, though I would see some patients. In my case, not being listened to is part of the reason I want to go into these fields. For example, with ASD assessments, I want to listen to young adults and adults who come to me saying they think they're autistic. (Of course you can't please everyone though. Some people walk into offices sure they have a disorder, but in reality they don't have it. I know some people get mad at doctors about this.)



Precisely. It's not right, but it's a common problem seen today. My point is that most people actually experience this. The difference is whether you move past it and brush it off as one of life's unfortunate events or if you end up sounding bitter about it. I've personally seen people who go both routes and I'm telling you that you'll be a much happier person overall if you just brush it off (especially if you ended up getting the help you needed).

I was lucky, so I am angry about what is happening to others on the spectrum. It is the identity thing nobody seems to understand. As has been said people make mistakes because they did not listen all the time. But it seems so much more with ASD. It seems like most posters that eventually got and ASD diagnosis had to go through multiple doctors that did not listen or are contemptuous. You are a very strong person to have gone through what you did and keep on going on with it. Not everybody is like that. I assume most people getting several professionals telling them they do not have ASD will believe them or at least start to wonder if they are making it all up. When you add people who have been denied and invalidated not only from professionals but by everybody they discussed this with I can't understand how they keep on fighting. This scenario is described often by posters.

A piece of advice, I would be careful about telling people to just get on with it. While I understand people could use that advice, and people have improved their life by following that advice, a lot of posters have described being bullied by people who use those words as a way of saying the other person is weak of character. Other times there is no bullying intended but the advice given with good intent backfires because it reminds the recipient of said advice that they can't seem to do what everybody else is seemingly are able to do.

I understand being angry at first, just not after a while. It kind of goes against what I was taught as a child. I also suppose I still don't understand the identity thing. But the solution I see then to people feeling invalidated is for people who share the same view as you to strive to instill more confidence in people seeking diagnoses. This would involve preparing them for the possibility of not being diagnosed at first among other things. It sounds like something that could be a very interesting project and it would solve - at least for some - that feeling of invalidation (as long as you explain how it's not intentional) that you're upset they're left with. You can put the anger to good use and simultaneously help other people.

I completely get what you're saying, and I thank you for trying to spare others' feelings, but that's nowhere near bullying; they can't really be compared. Bullying involves repeated (generally intentional) intimidation or harassing behaviors. If it were written in a harsher manner, such as "just get over it!" then sure, but it's different when you're talking about "getting over" something meaning moving past it for your emotional well being. It's about tone too, not just the words being used. I've found people (meaning just people in general, because I've done this in the past as well) tend to get too caught up in what's said, often missing the context, and when what often really matters is the tone of how it's being said. I'm sure most of us on here have been bullied, but telling someone to get over something for positive purposes is not an example of it. As for bringing up previous bullying memories, if someone says something that reminds another person of previous bullying (assuming what they said wasn't bullying, of course), then that really has more to do with the actual bully, not the person who said something that reminded the person who was bullied of it.

So you are a night person also here

I am not saying you're bullying, and I don't believe you are. just mentioning why those could be trigger words for a lot of posters. A lot have reported the type of "just get over it!" use of the words. Because of ToM a lot may be missing intent but the words still are triggers.

Also our population tends executive functioning "shift" issues (With the exception of changing the name of their diagnosis where only one person has this problem )


I try to warn people about misdiagnosis but it is difficult because I am afraid they will be so discoursed they will quit before they start.

Jezebel do you understand you are very fortunate? You wrote about how your parents were behind you, you clearly believe in yourself, have confidence in yourself, and I imagine that's because others have believed in you and listened to you. I respect that you want to go forward in your life to be someone who listens, so I am telling you it really IS a big deal when you say people shouldn't be bothered---by anything. It's wrong for you to judge my or anyone's emotional responses because they're different. I am glad for you that you've received enough validation to believe in yourself. Not everyone has, and we are suggesting you try to understand that your experience is yours, it is not everyone's. Try to understand what we are saying please, rather than dismissing it as silly, which is how you are coming across.

As far as this not listening and misdiagnosis happening more with autism, I don't think that's necessarily true. I think there are definitely some conditions that are definitely easier to diagnose, but also many that are not. I have a few friends whose kids have different issues and have diagnostic problems, one has a child with a severe medical problem which caused kidney and liver failure, and they went through several diagnoses.

I was actually pregnant another time other than the two children I have. That other baby they said he had an undiagnosed problem but he wasn't developing properly, was missing essential organs, and WOULD BE born still/dead. Well, he came out crying, and nobody was prepared for it, so there was nothing set up in intensive care for him. The staff pretty much just watched him die because they said there was nothing they could do. They diagnosed him wrong and he died because of it. I'm never going to get over it, obviously. For me, it's more anger towards those staff who sat around. He was born at 31 weeks, was not missing organs as predicted (they were underdeveloped but a normal amount for 31 weeks) and 90% of babies born at 31 weeks live if they go to the NICU so this was a huge failure. Anyway, to get off this tangent, I think misdiagnosis is just a (sometimes very sad) fact of the medical profession, and it's not limited to ASD. ASD just happens to be one of many conditions that are hard to diagnose.

Also, I think it's important to say that just because someone's problem is more minor than global problems doesn't mean it doesn't count as a problem. i tend to agree that being diagnosed with anxiety instead of autism is not a big deal, but for some who are already in a fragile state of mind, it could seriously impact their self worth, and that does count as a "real problem" in my books.

Most definitely. It's a pretty bad habit for me .

I didn't mean to imply that you were saying I was bullying, I was just going off on a tangent about people not taking context into account because it was related to what you said. I do believe certain phrases can come across as bullying though, but again, context is key. I'm not sure if it's TOM-related or something else altogether.

Executive functioning shift issues? I'm not sure if I understand what you're saying. Are you talking about having issues with change? If so, definitely. It just seems like a lot of people have gotten used to the ASD diagnosis, which I agree is pretty odd (but still interesting).

Overall, I think some people will probably be discouraged anyway, but if you want to help correct the issue, I don't think it's something to worry about too much. As long as some people are prepared, I don't think a few being discouraged would matter much overall. You could assist them with that too.



You're only seeing me now. You have no idea what I was like when I first asked for an assessment. I mentioned my mother being behind me with my physical issues, but I never mentioned her believing I'm autistic. She never has agreed with it; in fact, she's taken offense to it. You're assuming things. Not once did I say anyone shouldn't or couldn't be offended or feel hurt, rather I said I didn't understand it and that it was not a big deal to me because I feel like it's being made into a bigger issue than it really is (and I even acknowledged how it's possible I could be insensitive on such topics) and also that from my experience with these types of situations, that it's better to move past those types of situations and to turn negative experiences into positive ones.

I also said, and I quote, "Of course everyone's different and deals with these types of situations differently...", clearly acknowledging that everyone's experience would not be mine. What you're saying I said and what I actually said are completely different statements. I certainly never judged anyone, especially not intentionally. If anything, you're coming across as judging me right now. I hope you realize that. It's very easy to give off that vibe online, and I'd say it's even easier with those of us on the spectrum. Now that I've pointed out how you've come across judgmental and dismissing my statements, you should understand when other people come across the same way too. I'm sorry if I offended you or you felt I was dismissing anyone's feelings, but you should also know that I feel like you did the exact same thing you felt I did and that you've come across as offensive as well. And honestly, if I wasn't trying to understand ASPartOfMe's viewpoint, we wouldn't still be discussing this. So please don't tell me I'm not trying to understand something just because our views are different.

@WelcomeToHolland: I'm very sorry you went through that. You explained what I was saying - that misdiagnoses are common in general and that some misdiagnoses are much more serious than an ASD one. I also agree that misdiagnoses can impact someone's self-worth in rare situations, but like you said, being diagnosed with anxiety instead of autism generally is not a big deal. However, if the misdiagnosis does damage someone's self confidence, then perhaps that's because of another comorbid issue such as depression (or even the anxiety). The depression (or anxiety) is really to blame more than the mis/diagnosis in those cases. It may not necessarily be a misdiagnosis either. The autism just may not be picked up, and while it is unfortunate, the fact is, we should still consider ourselves lucky that we're not dealing with a more serious/important issue.

Jezebel I'm sorry you are offended by what I wrote, it was a description what I think and not meant to put you down.

I'll try again. You write that you want a career about helping people and research. There are too many professionals who think they're always right already, I'm not saying that's you but I'm concerned and while I may be way off in what I say, how you choose to respond to people you think, or know, to be wrong will I think matter a lot and I just think this is something you could think about. What you do with my ideas is up to you, they're just thoughts and ideas I am sharing with positive motives for you and all of us.

I know what you're saying; I've already agreed about how many professionals hold that false belief.
It just sounds like we have differing opinions - you felt I was implying people don't have a right to be upset about what some consider "less important concerns", but that wasn't what I was saying at all; rather I was giving ways to turn it into a more positive situation. Often times people will suggest the "This isn't the worst situation that could happen" thought as a way to reinforce the positiveness, though I suppose some may take that as offensive (or seen as dismissing concerns). It was a miscommunication on our part.

I am very sorry you had to have that awful experience.

There has be discussion about why we just can't let go of anger or even why we should be because everybody has problems Compared to the rest of the population, people with multiple medical conditions, people who are psychotic, or even children who are autistic, Adult Aspies are much more likely to be fragile.http://psychcentral.com/news/2014/10/13/suicidal-thoughts-10-times-more-likely-in-adults-with-aspergers/76016.html
. This study was for diagnosed Adults. It is frightening to think what the percentages are for the under and misdiagnosed.

It was great that this study came out. Combined with numerous people posting here with suicidal ideation this study has certainly affected my attitudes and how and what I post. As glad as I am this came out, it also demonstrates part of the problem. They are "puzzled", but yet they are throwing around theories. While I agree with a lot of the theories it does not look like Aspies were consulted.

In fairness they do note more studies are needed. With no Aspergers in the DSM-5 and Aspergers likely to be eliminated from the ICD=11 follow-up studies are unlikely to happen. Studies are also needed to for the Adult Austic population.

Shift is about the ability to change, specifically the ability shift focus when changing activities. It is a category in the BRIEF-A test for Executive Functioning.

I keep thinking about what you say here, and coming back to it.

You seem like an amazing person to keep trying, keep going, stay positive the way you do. Thank you for sharing that.

I definitely know that people on the spectrum are more sensitive (and sometimes, more immature) than NTs tend to be in certain situations. I've read of many realizing they were getting offended at what people said because they were being overly sensitive. I suppose that's something some people work with their psychologists/psychiatrists with? I used to be like that too but never discussed it with my psychologist or my psychiatrist though. As for the study and the article, I definitely agree with them both because it has to do with something I mentioned before - the depression/anxiety itself causes self-confidence issues (or suicidial ideation in this case), and not the fact that ASD might not be picked up.

"He said adults with Asperger’s syndrome or autism tend to only be seen by mental health professionals if they have severe mood changes or psychotic symptoms in addition to their Asperger’s syndrome or autism.

This means they may be given an incorrect diagnosis such as schizophrenia, and suicidal behavior in adults with Asperger’s syndrome or autism is often not linked to the unrecognized condition itself."

That's definitely the problem. Like when I saw my first psychologist, she was treating me for depression (but also a bit for anxiety). The depression and anxiety has to be taken care of first before an ASD diagnosis can even be considered.

I looked up the journal article and I have to admit that I'm surprised that they still used the term Aspergers! It does make me worry a bit about the results of the study though, knowing how inconsistently the diagnosis was given out. And as you mentioned, with AS also likely being taken out of the ICD-11, I wonder how trustworthy the results will be in the future. I agree that it would've been better if they had not only studied those diagnosed with AS, but rather adults diagnosed with any ASD.

Another thing is - and the article admits this - is that the study conclusions only relate to adults (the ones in the article had a mean age of around 31). The results can't be applied to younger people yet, so there's really no information about suicidal ideation in that age group, which would be pretty interesting (at least to me, since youth suicide rates are so high already). They also can't be applied to those that are undiagnosed, which the discussion also admits: "We also cannot say anything about those adults who do not seek a diagnosis of Asperger's syndrome but who might be struggling, undiagnosed, in the community." The last thing main thing I had a problem with was this admission: "Second, comparisons with other studies could not be closely matched for age, sex, or other risk factors."

I don't really understand what you mean about the studies and aspies not being consulted though?

Okay, I figured you were talking about change. Interestingly, I've never heard anyone use the word "shift" instead though.

ASPartOfMe how likely does it seem they might take AS out of ICD 11? Some things I read said it would stay but I'm not up to date, do you know more?

I think it's still being debated, but to be sure, I would say just keeping watching the proposed changes.