Not really misunderstood but misdiagnosed as the symptoms are often quite different including the major symptom - acute chest pain which almost 2/3rd of women who have went through a cardiac event do not experience, that percentage is even higher in women that went through vaginal labor.
It seems that the best tool doctors have is where does it hurt > my chest > heart attack.
Women just do not seem to have the same pain sensation not in scale nor location as men when it comes to heart attacks which it makes it very hard to diagnose. Most female heart attack cases do not get reported simply because allot of them do not feel any significant pain and those that do often feel it in other parts of their body.
Add to that the fact that allot of heart attack likelihood increases with age which coincides with menopause which on it's own introduces lightheadedness, shortness of breath, sharp pains and other similar symptoms to cardiac distress and you get a diagnostic nightmare.
There are other conditions which are more rarely go under diagnosed in men such as bladder cancer, breast cancer (cancer on it's own is more prevalent in men and women often are diagnosed earlier, and have much higher survival rates some times upwards of 50% difference), eating disorders and many various other things.
The description of hers matches my experience pretty closely as a boy in the 1990s. The feeling that something is deeply wrong with you (logically based in being bullied in multiple different schools) and that you're terribly different, and seeing >10 psychiatric professionals and having 20 different diagnoses can become a life-defining struggle (and this is for the kids with resources). Its very hard to re-integrate into society, and the comorbidity of depression and anxiety from pretty logical reasoning can make it harder and harder to peel the onion to get at the core of the problem.
This girl had supportive parents all the way through, and made it into and eventually graduated Cambridge, and I'll bet the classes were the easy part. Too many aren't so lucky.
I'll also be willing to bet that the reseach they've made on women applies to men as well. This quote in general:
> Particularly interesting is the unpublished observation that in girls with autism, the social brain seems to communicate with the prefrontal cortex, a brain region that normally engages in reason and planning, and is known to burn through energy. It may be that women with autism keep their social brain engaged, but mediate it through the prefrontal cortex—in a sense, intellectualizing social interactions that would be intuitive for other women.
This is exactly it for me. It costs energy to be social, because it really is just like doing math all day. I know the rules, and have done very well in high communication jobs, but its draining in a way that isn't for others.
For me, doing math or programming actually takes far less energy than socializing with new people. I wonder what the mechanism is here. Btw, i'm not autistic.
Familliar tasks (including a familiar feeling of uncertainty in math/programming problems) take less energy than meeting unfamiliar people for many people, I would presume.
Familiarity is one thing. But I think (not certain though) you can also be really predisposed to certain activities. I wouldn't be surprised if they found out that there are certain babies who have subcortical reward structures only lighting up when they do analytical tasks.
We're relatively neurodiverse (as the discussion relating to autism reveals pretty handily) and its almost certainly true that the differences in our hardware make certain things easy and possibly some not as easy.
I was also thinking about introversion as another explanation, but introversion isn't about less energy while socializing. It's about less energy because there is too much going on (too much external stimuli).
I should also say that while socializing is draining, around some people it is definitely NOT - people I can be totally unfiltered around do not drain any energy, in fact can give it. It is having to filter my impulses that requires the energy (prefrontal cortex has to work overtime).
As a female with Asbergers, I would say this is true. It's also true not in how I socialize but how I respond to socialization. I don't immediately interpret what someone is saying and it's very difficult for me to understand if their body language/facial language nuances are being sarcastic or not.
Sometime's people are trying to be nice but I'm worried they are being sarcastic and I'm not interpreting correctly. The reason I've LEARNED to worry about that is because sometimes I thought people were being nice but they were being sarcastic to me and making fun of me to me or in front of their friends.
Sometimes, hours later, I'll have to reobserve the interaction in my head, view it from all possible angles, cross check it against how this person typically is/how much I genuinely think they like me or not, and then I can feel pretty confident in about the message I think they were really sending across. But if I don't have alot of previous experiences with this person to cross check, it's like having an incomplete algorithm to make a decision on.
Yes, this is an arduous process and it's why alot of people tend to say I keep them at a distance for a while before I get to know them, I need to stay safe and then gradually as I learn more about them open up to them because I can interpret how they are reacting to me correctly.
When it comes to having mutual crushes. It's turning out to be a nightmare trying to navigate weather a guy is genuinely into me and even if I'm willing to believe he is how to engage with that, when other girls are masterminds of cutsey mindgames and being flirtacious.
The guy I think is into me right now I think has become frustrated because I'm not flirting back with him, but he knows I like being around him, so it's confusing for him and I think hes getting frustrated thinking I'm playing mind games. I need to go talk to him before he goes away entirely but what to say? Gosh I don't know, been debating that for weeks now...
In summary, can not only be exhausting it can be emotionally painful and hurtful when the people on the other side facing you don't really understand what it's like in your head. They tend to jump to alot of conclusions that are not even close to the innocent confusion I experience and genuine effort I'm putting in to get to know them.
I tend to surround myself with people who are just open an honest for the most part and aren't prone to being super sarcastic, same reason. Some things I just plain don't mind being direct about - "I really like you" when said sincerely seems rare enough in the world that it can be a really good compliment, and its easy for me to say as well. A social group with layers upon layers of snark just isn't much for me.
The guy I'm dating now pretty much shares the same mindset and it works great for us - we call each other super dorky because we just tell each other sincere platitudes without a hint of sarcasm, or when we are sarcastic we're hugely over the top about it.
I get what you mean about having to go back over and over. The social anxiety it causes when people won't be relatively direct can really hurt. Best bet for me was to keep looking for people who are relatively like me (I found a group super early on in the furry fandom - there's a VERY high percentage of spectrum folks there and some of the smartest kindest best people I've ever met come from it (and its frankly one of the best professional networks to have in tech - they're everywhere)). I'd recommend checking out a subculture of some sort that you're interested in.
As a father of a girl (3 years old) who has been recently diagnosed with autism, I found this article interesting. She is currently receiving speech and occupational therapies. This article gives us a glimpse of future challenges she'll face. Hopefully we can get her prepared somehow.
"Here we describe an association between high levels of intestinal, mucoepithelial-associated Sutterella species and GI disturbances in children with autism. These findings elevate this little-recognized bacterium to the forefront by demonstrating that Sutterella is a major component of the microbiota in over half of children with autism and gastrointestinal dysfunction (AUT-GI) and is absent in children with only gastrointestinal dysfunction (Control-GI) evaluated in this study."
Have you looked into this? It may help your daughter.
Probably not going to be the most popular opinion but...
The article really didn't shown any proof or even suggested anything besides hinting at various SJ issues. The Autism spectrum at this point is so overblown that I'm not sure if it's even correct anymore at some point this looks like it's becoming the new ADHD everyone has it just in a different flavor.
At this point Autism is almost no longer classified as physical neurodevelopmental disorder but with a lovely brand new name pervasive developmental disorder not otherwise specified.
Now don't get me wrong I don't think that low functioning Autism is fake, nor that some actual physical neurodevelopmental syndromes are but the amount of cases that 2 decades ago when psychoanalysis was still in fashion that would be classified as neurosis that are now being classified as autism even tho they do not show any of the physical signs of autism is quite staggering.
I'm not saying that those people are not "sick" I just have very strong suspicion that at the end this whole autism spectrum will blow up. It seems like every week we get a new article about normally functioning adults with various eccentricities that come out and say that they now know why they aren't normal and that's because they are autistic.
Articles like this: http://www.telegraph.co.uk/women/health/why-i-love-knowing-i... just make me question this whole ordeal, 5 hours of diagnosis of a woman in her 40's with a career and a family is enough to deem some one being autistic without any actual developmental tests, brain imaging or even in depth psychoanalysis.
I just don't really understand all these cases when people claim that they don't feel the same way that other people do (there's almost no way to know what other person is feeling, at best empathy will let you know what state they are projecting) or what other people find easy or hard. Not everyone finds socializing easy, not everyone likes to talk about their feelings, not everyone is even capable of building complex emotional attachments and it seems like people go in and out of various states like that throughout their life.
Autism is a spectrum, not a single type disorder. Problem with this label is that it has 100+ different things lumped into one category. Not all autistic folks are the same, it really depends on where they land on the spectrum. Also, the word spectrum is not real good word to use, should be more like a cloud instead of a straight line since different autistic people exhibit different problems. Also, more kids are labeled as autistic so they can get the extra help they need as early as possible to improve their life in the future. Insurance companies won't cover costs of therapy unless there is a medical condition that requires it.
I'm perfectly aware that it's a spectrum but at the end there's a limit to how much you can throw at it before it becomes a jackson pollock painting.
Look at autism today vs even 10 years ago, look at how many perfectly adjusted individuals are diagnosed with it something just doesn't seem right to me.
When I've started school we have had 2 kids with ADHD during my entire primary school class, by the end of high school half the class had some sort of form of learning disability which many of them got to get extra time on tests or other type of exemptions (verbal testing for example).
I've seen this happen in front of me within a decade and it seems to happen now again with other so called disorder.
Don't get me wrong I have the utmost respect to children with developmental disorders I've volunteered with a special care group for 2 summers during high school and I've seen what the ends of both the disfunctioning and functioning spectrum looked like then and the very clear similarities you could tie between them in many activities.
But now? not really I've met some people that were diagnosed with Autism late in their life mostly with AAS (usually after a fairly short diagnosis session) all of them are to me perfectly functional adults yes each and everyone of them had their issues but I've seen in none of them the actual "signs" that I've seen in actual children that were professionally and clinically diagnosed with what back then was while quite polar but fairly narrow spectrum.
Well, part of it is that they increased the size of the "spectrum" by adding more conditions and that doctors now check early in case intervention may be required are why the numbers are not so high.
Take for example my daughter. She was able to walk by herself when she was 8 months old. She got very independent quickly. She was about to recite entire alphabet and count to 20 by 15 months. The concerning fact that doctors had was that she did not point at things of interest and had poor eye contact. By her 2nd birthday, she started receiving speech and occupational therapies from a local early intervention program. It definitely helped her along with putting her into daycare/early preschool environment. She is very good at memorizing songs and objects. We're a bilingual family and she understands both Polish and English languages. Recently, she started learning some bits of Spanish at preschool. She can draw pretty well and can write her own name.
Her biggest weakness that we're working on now is her speech / communication. She is currently at 27% for her age.
Various states, comprehension, engagement, expression, and quite a few other factors.
It's not the most accurate assessment but child development disorders including autism are very well measured and quantized compared to any adult syndrome.
I questioned that part but could not get a concrete answer how they established that. I just mentioned it because that's what the report states. However, the location and setup did not look very kid friendly and my little one didn't like it one bit so she refused to cooperate with the folks doing the evaluation.
I think part of the problem was the main entrance had a big swimming pool right past the main doors, and all my little one wanted to do was to go swimming.
Again I'm not talking about every case of autism, early development disorders are very well documented as well as backed by physiological evidence and can be measured quantized and worked through.
My issue with that lately allot of various neurotic behaviors especially in adults has been classified as autism.
Allot of studies shown that autism especially in teenagers and beyond has more to do with where you were diagnosed than your actual condition in the US there were multiple very specific spots in which there were very abnormal numbers of positive diagnosis which did not held through secondary evaluation.
The APA has officially started to clean up the autism spectrum for 2-3 (DSM5) years now throwing out very wide net and non-diagnosable conditions like Aspergers and mandated that existing cases should be reevaluated.
>Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
In some countries there was a huge resistance to this from purely non-medical associations, in the UK you can now get a referral for diagnosis from a nurse (previously it was only GP) and the diagnosis it self can be taken in one of the privately operated centers operating in the country like the ones which are operated by the national autism society (which while it does wonders for children) isn't part of the NHS and is responsible for over 50% of the cases diagnosed since 2011, a vast majority of which were adults.
The diagnosis it self isn't done by doctors but by "professionals" like "speech therapists" and "developmental therapists" which while are certified to some extent (although for the most part are self regulated as there is no government sponsored certification process for them) are not medical doctors.
This is why I looks to me like ADHD2.0 as in another case when non doctors and non clinical professionals got the power to diagnose a disorder which was almost tailored for pushing pills to children despite substantial resistance from actual medical professionals mainly from child and development psychiatrists and clinical psychologists.
> The APA has officially started to clean up the autism spectrum for 2-3 (DSM5) years now throwing out very wide net and non-diagnosable conditions like Aspergers and mandated that existing cases should be reevaluated.
"Reevaluated", okay, but the first sentence you've quoted here makes clear that the intent is not to discard previous Asperger diagnoses across the board:
> > Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.
The relevant section of the DSM can be read at [0]. One analysis of the changes is at [1]. It seems to me (IANAMentalHealthProfessional) that the changes were motivated at least as much by a desire to bring Asperger and autism under the same umbrella as by a desire to discourage borderline diagnoses of Asperger.
> This is why I looks to me like ADHD2.0 as in another case when non doctors and non clinical professionals got the power to diagnose a disorder which was almost tailored for pushing pills to children
Are pills being pushed to children who are diagnosed with Asperger or mild autism?
I think I understand your concern; diagnostic fads are always problematic, and if it's really true that untrained people are making these diagnoses, and pushing pills on children, then yes, I think you're right to object.
At the same time, this is personal for me -- my wife has been diagnosed with Asperger, and as in the articles we're discussing, she found it a relief and a great help in understanding herself. In some ways, she's like the women in these articles; it sounds like you would want to challenge her diagnosis. While I would agree that some care needs to be exercised in applying this label, I would defend its use in her case.
I understand that it's personal the problem with AAA is that it ignores quite a few of the childhood symptoms of what was Asperger assuming that we would grow out of, the test cast very wide net and even have some contradictory evaluation criteria within them (e.g. DSM-4 referenced that people with Asperger have an aversion for fiction and have difficulty relating to non fictional works, however it also says that the exact opposite might be true and that people with Asperger find science fiction and or fantasy very attractive and are fascinated by it. And that's hardly the only internal contradiction in them pretty much most criteria have either internal loopholes or catch anything that strafes to close to one of the poles).
And while this is utterly not a medical opinion Asperger in adult women i now quite commonly falsely diagnosed in place of borderline emotional personality disorder which predominantly affects women (80% of patients) and is has quite common late onset triggers. This is especially common on early cases of BPD or due to short observation period where mood swings and various other tenancies that are not only not indicative or Asperger but outright rule it out cannot be properly observed. Beyond that BPD and Asperger can have quite similar symptoms in terms of case book diagnosis (which often the only thing that most mental health professionals have to go by unless they have been treating the patient for chronically) as BPD often can exhibit similar emotional shortcomings (lack of empathy, being unable to recognize or reflect emotion) and irregular thinking as well as distractedness (which may also be interpreted as inability to properly communicate/hold conversation) and forgetfulness which often again can be attributed to several AAS criteria.
ASD/AAS while I'm sure are unpleasant (not trying to be patronizing just don't have a better word for it) are not life threatening BDP however can be so while it's quite unlikely you'll take an advice from some internet smartass I would definitely get a second and even a third opinion in your case.
Okay but have you considered that people who seem like fully functional adults can also have autism and that they are fully functional by finding coping mechanisms to work with their autism? That is a thing that happens. To assume you know better than someone about their own mental scape because they 'seem fully functional' to you seems like a position without actually believing or listening to other people's experiences.
Most of your comments seem geared towards general autism and some to clinical psychology as a field. I mostly agree with it, but it is not really about this article. Furthermore, while autism might just be a label and nothing else, we do need to help people who (or who's friends and family) claim to have mental problems. Your comment about people having "various eccentricities" (perhaps unknowingly) downplays this. Realistically, it's quite hard to tell when people are eccentric or when they are in deep psychological turmoil. At this moment, diagnosing someone with autism, for example, is the most popular method we have -- I wanted to say cutting edge, but that's probably wrong.
For me it was an interesting article. Since gender is partially a cultural and biological construct I can imagine how gender changes the outer appearance of autism. I wish there would be more research on it compared to what the writer claimed there is. Unfortunately, scientists mostly recruit participants that are easy to find.
The article it self is very problematic it's anecdotal at best and was laying it heavy in quite a few areas.
The opening paragraph it self is dubious 1 of her doctors lost his license for misconduct (sleeping with patients) the other only seen her for 7 min.
This isn't relevant really because if they are incompetent they would be quite well equally incompetent regardless of sex.
Then the next line was about her being on medication which negatively affected her (psychiatric medication doses are nutritiously bad I've seen weight gain and utter apathy in both men and women taking anti depressants).
And then the article continues with more and more anecdotal evidence.
Psychiatry is plagued with miss diagnosis, including many times where actual physical conditions from STD's to poisoning are diagnosed as physiological or psychiatric disorders.
This doesn't seem to be an extreme case, clinical psychiatry is probably the least accurate medical science we have and only in fairy recent decades that it started getting backup in terms of actual biology neuroscience especially neurogenetics, real time brain imaging and many other fields are still quite infant compared to many other medical fields like physiological clinical diagnosis and surgery.
I can go on and on, but overall i didn't get from the article a) that she isn't an outlier as autism in adults by definition is under diagnosed if it is actually a given born condition and not an accumulated psychological disposition due to her life experience so far (24 years of being probed and medicated could might as well caused at least some of it, it's a shame that early development and child psychology is almost a tabu currently, I have my own theory about that but it's almost conspiratorial in nature) b) that there is a clear case of misdiagnosis of clinical autism in women.
What are the SJ issues? Nothing really seemed agenda-driven to me other than the anecdote of Leigh and her family's insistence that she only have female caretakers.
In the given context of safety and a request for only female caretakers, is the conclusion that male caretakers are unsafe for female patients?
Unfortunately it's never explained so can't understand why it's even in the article.
It's a label that helps people. I'm one of those people. I spent so much of my youth wondering what was so innately wrong with me that my peers would take every opportunity to mock my speech, my hobbies, my mannerisms, my preferences in food, clothes, etc. I became severely depressed during high school and nearly killed myself. I felt incredibly broken, confused, and separated from my peers in every way.
My parents weren't the type to believe in stuff like ADHD or Autism spectrum stuff, so the fact that I was getting great grades/test scores/had a few close nerd friends seemed to indicate I was just bookish and shy. Teachers were the same way, nothing wrong with the quiet kid.
When I finally had a psychologist tell me about Asperger's, and I went to some of the online communities and read about all of the other people with such similar experiences, it really helped. I wasn't so broken anymore, I was just different, and a lot of other people are different in the same way. By that time, I was too old to get much help out of an official diagnosis, but just being able to put a label on it gave me some peace. Even though I am well-adjusted, employed, and otherwise able to blend in and function to a point that it's mostly irrelevant, knowing about it and having a community helped me get there. I don't see why it's so terrible to have autism be a more inclusive label if it helps people.
Yes, that's very likely true. But some will argue that it's more than a label, that it has an independent reality, whether or not people find it helpful. Such people are trying to class autism with biological conditions, and they may turn out to be right. We won't know until someone uses science to link an actual objective cause to the symptoms -- a pathogen or an unambiguous organic source that can be objectively diagnosed without expert opinion playing any part at all.
We're nowhere near that goal.
> When I finally had a psychologist tell me about Asperger's, and I went to some of the online communities and read about all of the other people with such similar experiences, it really helped.
How did you feel when Asperger's was abandoned, after an epidemic of phony diagnoses? Did it matter that many of the diagnoses were just opinion with no objective basis? This is not to claim that those with the Asperger's diagnosis were faking, but that their true subjective mental state wasn't being accurately assessed, and many smart people were being grouped with people who actually had one or another mental condition.
I point this out only to show that we have no idea what Asperger's is, or Autism is, and the necessary science is not being done.
Asperger is no longer considered an actual condition by the APA.
Sadly in the UK it's running out of control, it's also now part of the new benefit package new PIP (DLA replacement) for working adults.
The UK now has the 2nd highest autism rate in the world with over 1% of the population being diagnosed (not by doctors, nor by NHS but by "speech and developmental professionals" working for private institutions) with autism the vast majority in the recent 5 years Adult Asperger Syndrome.
Japan also has very skewed numbers with nearly 2% of the population diagnosed with some form of autism, in late allot of the Japanese specific psychiatric/psychological conditions like Hikikomori are also being associated with autism.
> Asperger is not longer considered an actual condition by the APA.
All that's happened is that the terminology has been changed:
In 2013, the DSM-5 replaced Autistic Disorder, Asperger’s Disorder and other pervasive developmental disorders with the umbrella diagnosis of autism spectrum disorder. [0]
This simply codifies the conclusion that Asperger syndrome differs in degree, but not in kind, from more severe forms of autism. It doesn't mean that people who were formerly diagnosed with Asperger are now considered normal.
That's not correct it pretty much excluded all Asperger related symptoms that are predominantly expressed in Autism cases and mandated that all previous Asperger diagnosis should be reevaluated:
"Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder."
SPCD itself is not considered part of the Autism spectrum and has quite stringent requirements to ensure that only really edge cases that are neither autism nor a classic referral to a therapist get caught by it.
> Sadly in the UK it's running out of control, it's also now part of the new benefit package new PIP (DLA replacement) for working adults.
This is bollocks.
1) PIP is not an "in work" benefit. Being in work doesn't exclude a claimant from getting PIP, but it's not a requirement.
2) PIP requires a long term illness or disability - You must have had it for 3 months, and expect it to last for at least 9 months.
3) PIP doesn't use just diagnoses, it also uses an assessment of your ability. Two people could have the same diagnosis and one person could get PIP while the other could be excluded from PIP.
Aspergers was abandoned because the autism spectrum isn't cut-and-dry, and the difference between "high-functioning" autism and Aspergers was mostly arbitrary. If you have evidence citing that it was because of phony diagnoses, I'd be interested in seeing it. Anyhow, that change doesn't bother me in the slightest.
As far as the scientific need for strict classification goes, I can see how high-functioning people could potentially throw a wrench in things, because milder cases can be confused with other conditions. Nevertheless, that type of confusion is hardly unique to autism, and the diagnosis many mental illnesses and neurological disorders can be problematic due to comorbidity.
Anyhow, saying the science is not being done is just absurd. Just because the science is difficult and results are not easy to generalize, does not mean that it's not happening. The priority on severe autism (which is usually harder to misdiagnose) is understandable, and there's a possibility that findings related to severe autism may end up applying to milder cases as well.
Either way, the label is helping many people, and I think you are over-estimating the negative impact of having a broader diagnosis spectrum.
Frances is very outspoken about this issue, and interestingly, he was one of the primary advocates for the inclusion of Asperger's in DSM-IV. His outlook has, needless to day, changed completely, and the expression "phony epidemic" originates with him.
> Anyhow, saying the science is not being done is just absurd.
Not at all. Many people and organizations are still treating Autism as though it's a mental condition. Evidence strongly suggests that it's a physical condition with mental symptoms. Once we accept that it's an organic ailment, real scientific progress will begin, and people will be less likely to unfairly stigmatize those suffering from it as though they're "mental".
As I said above, this process has scarcely begun. And "diagnosing" many bright people with Asperger's (including Isaac Newton, Albert Einstein, Thomas Jefferson and Bill Gates) perversely turned the condition into a status symbol among impressionable young people.
> I think you are over-estimating the negative impact of having a broader diagnosis spectrum.
The issue is whether we're focusing on evidence instead of anecdotes. At the moment, opinion rules. Remember that the content of DSM-5 was established with votes, not scientific study outcomes. This is one of the reasons the DSM is being abandoned by the N.I.M.H.:
> deem some one being autistic without any actual developmental tests, brain imaging or even in depth psychoanalysis.
The latter two have nothing to do with psychiatric or psychological diagnoses. A diagnoses is made on the basis of symptoms, it doesn't get more exact than that. There are symptoms which frequently go together, and this is how disorders get a name. Although science attempts to find biological markers for mental illness, this has not been very successful. Psychoanalysis is just pseudoscience.
As a father of a 15 year old girl with autism on the lower ability end of the spectrum I agree with some of what your saying. I feel that the 'spectrum' is getting so wide that anyone that has any social issues, or has any odd habits is labeled as autistic now. It's frustrating when I hear people that are fully functional in society and maybe just have a hard time socializing with people (probably because they grew up on facebook, etc... and never really interacted with real people) that say they are autistic. It is like the new ADHD. I spent the first 11 years of my daughters life changing diapers, usually with her fighting me the entire time. Wasn't until she was 7 that she ever even called me dad. 15 now and can barely read Dr. Suess books or answer basic yes or no questions.
I worry that as more and more fully functioning people are added to the spectrum that it will result in less help out there for people like my daughter that really need it.
I would certainly hope not - they may call it a continuum but that does only really muddy the water. While there are a lot of similarities in what can help high functioning and low functioning people cope the amount of day-to-day help can be black and white. I much preferred when high functioning people had "aspergers", because even within the high functioning moniker there's a huge range. HF folks don't like to be treated as if they have a fundamental disability (which is disempowering) just as caretakers of LF people need a lot more of the recognition and assistance that a serious disability requires.
> I worry that as more and more fully functioning people are added to the spectrum that it will result in less help out there for people like my daughter that really need it.
Do you actually see this happening?
It seems to me just as likely that greater awareness of the entire spectrum will bring more acceptance and more resources.
Anyway, for my wife, learning that she has Asperger syndrome has been a great relief. It's hard for me to see that as a bad thing. Your story is heart-wrenching, and I hope your daughter gets the help she needs. I just don't see why my wife's experience and yours need to be in conflict.
I've noticed a huge shift in peoples opinions towards autism since I've had my daughter and I do think it will affect the overall help available to people with autism. The more you add higher functioning people to the spectrum, the more people don't see it as a debilitating mental illness.
Whenever I mention to someone these days that my daughter has autism, they don't really get what that means. They say things like "oh, is she really good at math" or "my coworker has autism too". And I'm thinking no she doesn't really understand even the most basic math, she'll likely not ever be able to have a real job, and who's going to take care of her when I'm gone because she needs help all day every day just to get through the day.
I strongly believe there needs to be a clear distinction between higher functioning people on the spectrum and the people that are really struggling with the most basic aspects of life.
Anyway, I get that people have different opinions, that's just mine. :)
your attitude is common... and I don't really understand it. I mean, yes, psychology, as a science, and psychiatry as a medical discipline, is young and not nearly as systematized and objective as many other sciences. Psychiatry is less so than the rest of medicine, really, and medicine is less so than, say, civil engineering.
But, that doesn't mean that it's without value. Sure, there's a lot less value in psychiatry now than there will be once it becomes more like civil engineering, but that's not a reason to ignore what we've got.
>The Autism spectrum at this point is so overblown that I'm not sure if it's even correct anymore at some point this looks like it's becoming the new ADHD everyone has it just in a different flavor.
Why do you think ADHD is not a useful or "correct" diagnosis? Unlike Autism, there is a spectrum of drugs available which seem to help people who are diagnosed with ADHD quite a lot.
Personally, I think that treating these sorts of things is a "social good" to the extent that being productive and able to support oneself is a social good. if you take someone's ADHD and properly treat it, you can take a person who is not capable of contributing positively to the economy, and you can put them in a position where they can hold down an upper-middle class job.
I think that for Autism, the workplace is changing some in ways that allow some people who could not previously have held down jobs to do so, which is great, but attacking the problem from the other side; developing medical treatments that allow some percentage of the population to function in society is, in my mind, unalloyed good.
edit: more correct psychology/psychiatry usage, I believe.
ADHD can't be that new, in less than a decade it turned from less than 1% to 50% in the class room that points at it being a pill pushing campaign.
In the 60's you would get slapped and send to bed without dinner (I'm not condoning beating children just stating a fact).
There's probably a good reason why ADHD all of a sudden sprouted out with the last of the baby boomers / first millennials which decided to let their children roam free which coincided with us deciding the schools should not long discipline children but just feed them facts, and instead of having kids run around till they fall asleep from exhaustion we stuck them in front of the screen fed with nothing but sugar.
A sloth under those conditions would get ADHD.
When half your class is on Ritalin something went wrong, and this only makes things worse for people which actually have learning disabilities as it just gives untrained professionals that should not be diagnosing the color of the sky the ability to pump kids with pills because their parents can't give a frack to discipline them.
I had 2 childhood friends that were "diagnosed" with ADHD and gotten Ritalin since they were in 6th or 7th grade it turned out that both were dyslexic and got frustrated in class because they had hard time reading the bloody assignments and the actual conditions were discovered pretty much after they flunked high school because the only thing that Ritalin did is glue them to a chair.
And yes I see a similar thing with Adult Onset Autism these days.
The entire industry is screwed up I got "diagnosed" as a child with everything from being a genius to an autistic with ADHD only because I could care less about class, this got some what aggravated by the fact that my soviet schooled parents decided to tutor me so a 4th grade student that can solve 2nd order equations in 4th grade and is too bored to do homework or had a vocal argument with his 7th grade science teacher that in he that mass isn't a "fixed amount of matter" that never changes (I got expelled for shoving like 50 xerox copies of a very poor proof into every teachers locker) surely has some disorders bring on the pills.
Wile the truth was that it was just the outcome of 2 soviet parents with several PHD's between them, father was a surgeon, mother was a psychiatrists, sister a clinical psychologist, other kids weren't as lucky because by reading the diagnosis manual if you like taking the VCR apart you now have autism, right...
The quality of psychiatric care, in general, is abysmal. There's a ton of poorly-competent therapists.
SO when someone has autism or ADD or depression or these other disorders that make it really difficult to reach out to get help, and then that one person does reach out and gets shit for help, well, then how do you not give up?
The behavior health system is stacked against the most vulnerable.
And nobody cares enough. All those doctors that dismissed this woman again and again need to be publicly taken to task for their lack of professionalism and lack of giving a shit (which IMO goes right against the Hippocratic Oath).
This is so true. It isn't just access, it's that what you get is usually bad. My experience is if you're stuck using insurance usually you can give up hope of finding someone under 50 who actually gives a crap.
It is definitely a general problem, and from personal experience I've gone through so many therapists this year it's not even funny. I've even had a therapist put me down, and for awhile I was wondering whether to off myself because I couldn't get good help.
Whether I'm in the DC area and looking or in the Bay Area and looking, and I feel like giving up on a search most days because nobody knows how to properly treat those of us who are on the autism spectrum.
More in response to the comments so far than the article itself. In general, I think these comments too much reflect or defend against the idea that "autistic women have it worse than autistic men" and people are debating this when really the message is "The scientific community does not have an official lsit of symptoms for autistic women versus autistic men" This is important because noone knows what causes autism so diagnosis based on symptoms is the only way, and we are figuring out right now just how different these symptoms are, and how uneducated the medical community is at even thinking to get a girl diagnosed for autism.
40 years ago the medical community, even the guy who coined autism himself, didn't even beleive it was possible for women to have autism at all (even the most extreme obvious cases) we are in close to that same position for high functioning women with Asbergers. Just take the fact that the average age of diagnosis for women is about ten years later in life than males, mostly because the symptoms accumulated over the past 40 years were only accumulated based on men. So women, just to get diagnosed (forget crying a life of "oh we have it so much harder as being autistic) just to get a diagnosis you have to stumble into a series of misdiagnosis and oddities and lack of documentation about how these symptoms (again we don't know the source) present themselves in women. BY then, women are just as much as men, if not more by a delayed diagnosis frustrated by everything theve been through and all the things that are "wrong" with them that their families can't figure out.
The struggles autistic men and women face are not to be argued whether its worse for one gender or the other, but based on the whole point above, that they are DIFFERENT, and we are less educated about one set of symptoms than the other. It's not about giving one gender a "I've got it harder than you" sympathy card.
1. In 2013 Asbergers was classified as being on the Autism scale.
2. Alot of high functioning Asbergers are technically autistic now that were medically/officially not autistic 5 years ago, but these people are no different than they were 5 years ago, its that the medical community rearranged a big group of typically high functioning people and put them on the autism scale. I happen to be one of these, and was diagnosed (as Maya was in this article) with OCD at 8, and anxiety, and basically an accumulation of common symptoms of autism until I went to an Engineering school where so many people were on the scale a Professor made us all take the test and that is when I found out about all of this.
3. Speaking of that, You can be tested for this and registered on a scale. As we do not know what causes autism, we can only diagnosis based on symptoms, like a lot of things, so the conjecture about "not knowing for sure" on this thread is valid, but so is it for alot of other diseases and cancers that we don't know the cause of, so that does not invalidate the seriousness of the impact the non sourced symptoms have on the lives of people.
4. Being an Aspie and a book nerd (my mom first took me to get me tested to see what was "wrong" with me when I spent the entire summer of my 8th year and read all 138 Mandy (kids mystery novel) books in 7 weeks and didn't care to do anything else).
I have since being diagnosed, read 17 books on females with Asbgergers and about 15-20 books about Autism in general, and I think the comments about females with Autism on this Atlantic comment thread and the HN thread so far are way off. That being said...
5. I DO NOT like this article because it is almost entirely anecdotal and focuses on Maya's extreme cases while for me, and alot of other female aspies I know (sources of female aspies below) it went more like all the things that make you cute and "quiet" growing up, you do not grow out of.
I would pausit (and youll see some horribly negative and ignorant comme...
Depending on how young your daughter is, especially if she is still a child or preteen, I strongly recommend searching "female asbergers books" on Amazon and reviewing ratings for yourselves but there are alot of books for parents about aspie girls, what to expect, how to empower them, and most importantly, how to keep them safe.
Female aspies are empaths actually, which is counter intuitive to people not familiar with all of this, which makes them huge targets not just for casual bullying and being outcasted by girly girls, but for more sinister reasons as well. Even being older, empaths are the perfect codependent counter type for narcissists and other wise sociopaths and psychopaths. They have affective empathy (empty shallow charming ability to pretend to have emptathy) but crave raw empathy which is what aspie girls have an abundance of (google intense world theory, applies to both male and females for autism). This coupled with (I edited in my original comment in more detail) a females aspies or any autistic females tendency to be just incredibly naive about peoples emotions and their intentions, is a disaster waiting to happen.
Going to school in a male dominated environment with an unusual number of anti social personalities (introverts --> engineering...) I was the perfect target so sociopathic men and there were alot of them around me. It's not surprising in RETROSPECT that a year ago I got out of a long term relationship with a verifiable sociopath for all the reasons I just said.
After educating myself about all of this I wish I had read some of these aspie books for young females when I was younger and I could have protected myself from a lot of toxic situations.
Now, I volunteer in aspie programs teaching young girls how to code. Alot of aspie women can't keep good jobs because they are "rude and bossy" or not charming enough or "creepy and quiet". Luckily for me my skill set is in high need and objectively evaluated for the most part (can't argue with me if I produce your code on time) so I thought it would be incredibly empowering to build girls with this confidence and self esteem, and potentially the ability to arm themselves with solid careers/technical skillsets that overpower an HR departments ability for a 26 yr old girl wearing designer clothes and paid to be charming to evaluate a nerdy antisocial girl on her "overall performance" if actually she is an objectively solid and valued individual contributer and has code to show it.
If she is young I would recommend fostering her hobbies as much as possible and encouraging "structured playtime" for whatever her interests are. With channeling and encouragement (for all the people who post successful autistic women as a reason to doubt they have it at all) aspies including aspie girls can become MASTERS at the things they are obsessed with.
Turns out, successful people are typically successfully because they love what they do, they have infectious passion and they are GOOD at it, and can spend hours uninterupted developing their product or building their empire, so actually aspie women are the perfect character trait combination then for successful people, if they can have emotional support through their difficulties with social interactions while being encouraged to do what other people call "active but odd obsessions" because that could be the talent that makes or inspires her career one day, or maybe even her company that she starts.
"I was the perfect target so sociopathic men and there were alot of them around me. It's not surprising in RETROSPECT that a year ago I got out of a long term relationship with a verifiable sociopath for all the reasons I just said."
Navarro details a forensic checklist to identify personalities like this. I've got this book and it gives you a numerical score to ID said personalities, along personality types you've listed, and a few more.
This is so funny, but I actually just finished that book 2 days ago. Along with about 10 other books over the past few months about antisocial personality disorders and Autism, Asbergers, Females with Asbergers. My way of grieving through it was to read and learn everything I could about myself and my ex.
Thank you!
I'm also reading/have finished reading in the past few months:
The Empathy Trap
Safe People
Without A Conscience
Trauma and Memory
Women Who Love Psychopaths
Social Engineering
Whos Pulling your strings
In Sheeps Clothing
From your recommendation which is the first one I heard of, I found these highly reviewed books on Amazon in the recommended section after you search that book.
"This is so funny, but I actually just finished that book 2 days ago."
Did you find out any diagnosis or observations you didn't recognise?
I suggest you also read WEBIS and work at reading body language.[0] WEBIS is an API of human body language.
I read an interview on the book, DP, before I purchased it a year ago and Mr.Navarro made a comment in the interview that it was hard to write. I actually asked him why? His answer wasn't that revealing. I was just curious. After reading the book, [1],[2] I now know why.
> It’s the long list of diagnoses Maya collected before she was 21, from borderline personality disorder to agoraphobia to obsessive-compulsive disorder, that begin to hint at how little we understand autism in women.
That doesn't follow. It could simply mean that she had really bad psychiatrists who just threw around diagnoses. Maybe it reflects that mental illness in general is poorly understood, because they didn't discover that the other diagnoses were false positives. I am afraid that unless a diagnosis is followed by a successful treatment, it's not worth much.
No I haven't. I just found it very odd that that was the conclusion drawn from this (even if it's only called a hint), while not saying anything about how bad those psychiatrists were.
Its because a person may fit all the clinical requirements of a given diagnosis at one point, but may not at another. Getting to the root of a problem can be very difficult - even getting a basic response out of someone who is in a state of major depression or panic-attack inducing anxiety is difficult. You have to find ways to peel the onion. However, when the root cause isn't found and addressed, the treatment for the comorbid conditions can actually mask and obfuscate the underlying ones.
For an article addressing the issue of autism in women being misunderstood, I would have hoped to find a clear description of the actual difference with male autism. Instead we get a few human interest case studies and scientists working on this. The article simply doesn't seem to go to the heart of the matter.
That was the point of the article. Wouldn't you only get a clear description and be able get to the heart of the matter if it wasn't misunderstood?
Were you expecting hard data in a magazine article?
I personally thought the 'human interest studies' were very informative, and gave me plenty of context when thinking about differences between male and female people I know (not getting any more specific than that).
No not necessarily. If the headline claims something is misunderstood, you set up the expectation that you'll set the record straight. Misunderstood implies that there is some correct point of view, otherwise you'd call it a mystery.
I didn't expect hard data, but a list of traits specific to female autism would have been useful.
The response by doctors and the general public is about the same for:
People who can't be diagnosed with Celliac without extreme measures
Women who can't be diagnosed with a heart attack without extreme measures
Women who can't be diagnosed with autism without extreme measures.
There can't be much if anything in common between my son's stomach lining, a young womans brain tissue, and an old woman's heart muscle. Oddly enough what they both have in common is the same medical-industrial complex. On a very small scale you can fix one person at a time, with a heart bypass or whatever else, I can't disagree with that. The insight is whatever fixes the "big system wide problem" given the commonality of symptoms it obviously can't be biologic in origin. The problem is inherent in the medical system itself, what it means to be a medical system at all, what it means to be healthy or normal. I think this is missed by people hyperfocusing on one narrow issue, well, all we need is "the official autism test" and it'll all be fixed. Or we need to sell Chinese made pink bracelets to "increase awareness of female heart disease", thats all a waste of time compared to looking at the greater issue (of which I currently have no answer, but I'm also uninterested in wasting my time on half efforts)
As the parent of an 11 year old daughter with autism, I've found in past autism-related posts that many are unaware of warning signs. Early detection is key to better outcomes.
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[ 5.1 ms ] story [ 48.8 ms ] threadIt seems that the best tool doctors have is where does it hurt > my chest > heart attack. Women just do not seem to have the same pain sensation not in scale nor location as men when it comes to heart attacks which it makes it very hard to diagnose. Most female heart attack cases do not get reported simply because allot of them do not feel any significant pain and those that do often feel it in other parts of their body. Add to that the fact that allot of heart attack likelihood increases with age which coincides with menopause which on it's own introduces lightheadedness, shortness of breath, sharp pains and other similar symptoms to cardiac distress and you get a diagnostic nightmare.
There are other conditions which are more rarely go under diagnosed in men such as bladder cancer, breast cancer (cancer on it's own is more prevalent in men and women often are diagnosed earlier, and have much higher survival rates some times upwards of 50% difference), eating disorders and many various other things.
This girl had supportive parents all the way through, and made it into and eventually graduated Cambridge, and I'll bet the classes were the easy part. Too many aren't so lucky.
I'll also be willing to bet that the reseach they've made on women applies to men as well. This quote in general:
> Particularly interesting is the unpublished observation that in girls with autism, the social brain seems to communicate with the prefrontal cortex, a brain region that normally engages in reason and planning, and is known to burn through energy. It may be that women with autism keep their social brain engaged, but mediate it through the prefrontal cortex—in a sense, intellectualizing social interactions that would be intuitive for other women.
This is exactly it for me. It costs energy to be social, because it really is just like doing math all day. I know the rules, and have done very well in high communication jobs, but its draining in a way that isn't for others.
Possibly introversion which is NOT a disorder. Perhaps you just enjoy personal time and feel at peace.
Psychology today: https://www.psychologytoday.com/blog/fulfillment-any-age/201...
Sometime's people are trying to be nice but I'm worried they are being sarcastic and I'm not interpreting correctly. The reason I've LEARNED to worry about that is because sometimes I thought people were being nice but they were being sarcastic to me and making fun of me to me or in front of their friends.
Sometimes, hours later, I'll have to reobserve the interaction in my head, view it from all possible angles, cross check it against how this person typically is/how much I genuinely think they like me or not, and then I can feel pretty confident in about the message I think they were really sending across. But if I don't have alot of previous experiences with this person to cross check, it's like having an incomplete algorithm to make a decision on.
Yes, this is an arduous process and it's why alot of people tend to say I keep them at a distance for a while before I get to know them, I need to stay safe and then gradually as I learn more about them open up to them because I can interpret how they are reacting to me correctly.
When it comes to having mutual crushes. It's turning out to be a nightmare trying to navigate weather a guy is genuinely into me and even if I'm willing to believe he is how to engage with that, when other girls are masterminds of cutsey mindgames and being flirtacious.
The guy I think is into me right now I think has become frustrated because I'm not flirting back with him, but he knows I like being around him, so it's confusing for him and I think hes getting frustrated thinking I'm playing mind games. I need to go talk to him before he goes away entirely but what to say? Gosh I don't know, been debating that for weeks now...
In summary, can not only be exhausting it can be emotionally painful and hurtful when the people on the other side facing you don't really understand what it's like in your head. They tend to jump to alot of conclusions that are not even close to the innocent confusion I experience and genuine effort I'm putting in to get to know them.
The guy I'm dating now pretty much shares the same mindset and it works great for us - we call each other super dorky because we just tell each other sincere platitudes without a hint of sarcasm, or when we are sarcastic we're hugely over the top about it.
I get what you mean about having to go back over and over. The social anxiety it causes when people won't be relatively direct can really hurt. Best bet for me was to keep looking for people who are relatively like me (I found a group super early on in the furry fandom - there's a VERY high percentage of spectrum folks there and some of the smartest kindest best people I've ever met come from it (and its frankly one of the best professional networks to have in tech - they're everywhere)). I'd recommend checking out a subculture of some sort that you're interested in.
http://articles.mercola.com/sites/articles/archive/2012/05/0...
"Here we describe an association between high levels of intestinal, mucoepithelial-associated Sutterella species and GI disturbances in children with autism. These findings elevate this little-recognized bacterium to the forefront by demonstrating that Sutterella is a major component of the microbiota in over half of children with autism and gastrointestinal dysfunction (AUT-GI) and is absent in children with only gastrointestinal dysfunction (Control-GI) evaluated in this study."
Have you looked into this? It may help your daughter.
The article really didn't shown any proof or even suggested anything besides hinting at various SJ issues. The Autism spectrum at this point is so overblown that I'm not sure if it's even correct anymore at some point this looks like it's becoming the new ADHD everyone has it just in a different flavor.
At this point Autism is almost no longer classified as physical neurodevelopmental disorder but with a lovely brand new name pervasive developmental disorder not otherwise specified. Now don't get me wrong I don't think that low functioning Autism is fake, nor that some actual physical neurodevelopmental syndromes are but the amount of cases that 2 decades ago when psychoanalysis was still in fashion that would be classified as neurosis that are now being classified as autism even tho they do not show any of the physical signs of autism is quite staggering.
I'm not saying that those people are not "sick" I just have very strong suspicion that at the end this whole autism spectrum will blow up. It seems like every week we get a new article about normally functioning adults with various eccentricities that come out and say that they now know why they aren't normal and that's because they are autistic.
Articles like this: http://www.telegraph.co.uk/women/health/why-i-love-knowing-i... just make me question this whole ordeal, 5 hours of diagnosis of a woman in her 40's with a career and a family is enough to deem some one being autistic without any actual developmental tests, brain imaging or even in depth psychoanalysis.
I just don't really understand all these cases when people claim that they don't feel the same way that other people do (there's almost no way to know what other person is feeling, at best empathy will let you know what state they are projecting) or what other people find easy or hard. Not everyone finds socializing easy, not everyone likes to talk about their feelings, not everyone is even capable of building complex emotional attachments and it seems like people go in and out of various states like that throughout their life.
Look at autism today vs even 10 years ago, look at how many perfectly adjusted individuals are diagnosed with it something just doesn't seem right to me.
When I've started school we have had 2 kids with ADHD during my entire primary school class, by the end of high school half the class had some sort of form of learning disability which many of them got to get extra time on tests or other type of exemptions (verbal testing for example). I've seen this happen in front of me within a decade and it seems to happen now again with other so called disorder. Don't get me wrong I have the utmost respect to children with developmental disorders I've volunteered with a special care group for 2 summers during high school and I've seen what the ends of both the disfunctioning and functioning spectrum looked like then and the very clear similarities you could tie between them in many activities.
But now? not really I've met some people that were diagnosed with Autism late in their life mostly with AAS (usually after a fairly short diagnosis session) all of them are to me perfectly functional adults yes each and everyone of them had their issues but I've seen in none of them the actual "signs" that I've seen in actual children that were professionally and clinically diagnosed with what back then was while quite polar but fairly narrow spectrum.
Take for example my daughter. She was able to walk by herself when she was 8 months old. She got very independent quickly. She was about to recite entire alphabet and count to 20 by 15 months. The concerning fact that doctors had was that she did not point at things of interest and had poor eye contact. By her 2nd birthday, she started receiving speech and occupational therapies from a local early intervention program. It definitely helped her along with putting her into daycare/early preschool environment. She is very good at memorizing songs and objects. We're a bilingual family and she understands both Polish and English languages. Recently, she started learning some bits of Spanish at preschool. She can draw pretty well and can write her own name.
Her biggest weakness that we're working on now is her speech / communication. She is currently at 27% for her age.
That sounds precise... Is that based on the size of her vocabulary?
I think part of the problem was the main entrance had a big swimming pool right past the main doors, and all my little one wanted to do was to go swimming.
My issue with that lately allot of various neurotic behaviors especially in adults has been classified as autism.
Allot of studies shown that autism especially in teenagers and beyond has more to do with where you were diagnosed than your actual condition in the US there were multiple very specific spots in which there were very abnormal numbers of positive diagnosis which did not held through secondary evaluation.
The APA has officially started to clean up the autism spectrum for 2-3 (DSM5) years now throwing out very wide net and non-diagnosable conditions like Aspergers and mandated that existing cases should be reevaluated.
>Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
In some countries there was a huge resistance to this from purely non-medical associations, in the UK you can now get a referral for diagnosis from a nurse (previously it was only GP) and the diagnosis it self can be taken in one of the privately operated centers operating in the country like the ones which are operated by the national autism society (which while it does wonders for children) isn't part of the NHS and is responsible for over 50% of the cases diagnosed since 2011, a vast majority of which were adults.
The diagnosis it self isn't done by doctors but by "professionals" like "speech therapists" and "developmental therapists" which while are certified to some extent (although for the most part are self regulated as there is no government sponsored certification process for them) are not medical doctors.
This is why I looks to me like ADHD2.0 as in another case when non doctors and non clinical professionals got the power to diagnose a disorder which was almost tailored for pushing pills to children despite substantial resistance from actual medical professionals mainly from child and development psychiatrists and clinical psychologists.
"Reevaluated", okay, but the first sentence you've quoted here makes clear that the intent is not to discard previous Asperger diagnoses across the board:
> > Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.
The relevant section of the DSM can be read at [0]. One analysis of the changes is at [1]. It seems to me (IANAMentalHealthProfessional) that the changes were motivated at least as much by a desire to bring Asperger and autism under the same umbrella as by a desire to discourage borderline diagnoses of Asperger.
> This is why I looks to me like ADHD2.0 as in another case when non doctors and non clinical professionals got the power to diagnose a disorder which was almost tailored for pushing pills to children
Are pills being pushed to children who are diagnosed with Asperger or mild autism?
I think I understand your concern; diagnostic fads are always problematic, and if it's really true that untrained people are making these diagnoses, and pushing pills on children, then yes, I think you're right to object.
At the same time, this is personal for me -- my wife has been diagnosed with Asperger, and as in the articles we're discussing, she found it a relief and a great help in understanding herself. In some ways, she's like the women in these articles; it sounds like you would want to challenge her diagnosis. While I would agree that some care needs to be exercised in applying this label, I would defend its use in her case.
[0] https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-dia...
[1] https://vcuautismcenter.org/resources/factsheets/printView.c...
And while this is utterly not a medical opinion Asperger in adult women i now quite commonly falsely diagnosed in place of borderline emotional personality disorder which predominantly affects women (80% of patients) and is has quite common late onset triggers. This is especially common on early cases of BPD or due to short observation period where mood swings and various other tenancies that are not only not indicative or Asperger but outright rule it out cannot be properly observed. Beyond that BPD and Asperger can have quite similar symptoms in terms of case book diagnosis (which often the only thing that most mental health professionals have to go by unless they have been treating the patient for chronically) as BPD often can exhibit similar emotional shortcomings (lack of empathy, being unable to recognize or reflect emotion) and irregular thinking as well as distractedness (which may also be interpreted as inability to properly communicate/hold conversation) and forgetfulness which often again can be attributed to several AAS criteria.
ASD/AAS while I'm sure are unpleasant (not trying to be patronizing just don't have a better word for it) are not life threatening BDP however can be so while it's quite unlikely you'll take an advice from some internet smartass I would definitely get a second and even a third opinion in your case.
For me it was an interesting article. Since gender is partially a cultural and biological construct I can imagine how gender changes the outer appearance of autism. I wish there would be more research on it compared to what the writer claimed there is. Unfortunately, scientists mostly recruit participants that are easy to find.
The opening paragraph it self is dubious 1 of her doctors lost his license for misconduct (sleeping with patients) the other only seen her for 7 min.
This isn't relevant really because if they are incompetent they would be quite well equally incompetent regardless of sex.
Then the next line was about her being on medication which negatively affected her (psychiatric medication doses are nutritiously bad I've seen weight gain and utter apathy in both men and women taking anti depressants).
And then the article continues with more and more anecdotal evidence.
Psychiatry is plagued with miss diagnosis, including many times where actual physical conditions from STD's to poisoning are diagnosed as physiological or psychiatric disorders.
This doesn't seem to be an extreme case, clinical psychiatry is probably the least accurate medical science we have and only in fairy recent decades that it started getting backup in terms of actual biology neuroscience especially neurogenetics, real time brain imaging and many other fields are still quite infant compared to many other medical fields like physiological clinical diagnosis and surgery.
I can go on and on, but overall i didn't get from the article a) that she isn't an outlier as autism in adults by definition is under diagnosed if it is actually a given born condition and not an accumulated psychological disposition due to her life experience so far (24 years of being probed and medicated could might as well caused at least some of it, it's a shame that early development and child psychology is almost a tabu currently, I have my own theory about that but it's almost conspiratorial in nature) b) that there is a clear case of misdiagnosis of clinical autism in women.
In the given context of safety and a request for only female caretakers, is the conclusion that male caretakers are unsafe for female patients?
Unfortunately it's never explained so can't understand why it's even in the article.
A fun way to view the world: swap gender for race and see how it reads.
It's a label that helps people. I'm one of those people. I spent so much of my youth wondering what was so innately wrong with me that my peers would take every opportunity to mock my speech, my hobbies, my mannerisms, my preferences in food, clothes, etc. I became severely depressed during high school and nearly killed myself. I felt incredibly broken, confused, and separated from my peers in every way.
My parents weren't the type to believe in stuff like ADHD or Autism spectrum stuff, so the fact that I was getting great grades/test scores/had a few close nerd friends seemed to indicate I was just bookish and shy. Teachers were the same way, nothing wrong with the quiet kid.
When I finally had a psychologist tell me about Asperger's, and I went to some of the online communities and read about all of the other people with such similar experiences, it really helped. I wasn't so broken anymore, I was just different, and a lot of other people are different in the same way. By that time, I was too old to get much help out of an official diagnosis, but just being able to put a label on it gave me some peace. Even though I am well-adjusted, employed, and otherwise able to blend in and function to a point that it's mostly irrelevant, knowing about it and having a community helped me get there. I don't see why it's so terrible to have autism be a more inclusive label if it helps people.
Yes, that's very likely true. But some will argue that it's more than a label, that it has an independent reality, whether or not people find it helpful. Such people are trying to class autism with biological conditions, and they may turn out to be right. We won't know until someone uses science to link an actual objective cause to the symptoms -- a pathogen or an unambiguous organic source that can be objectively diagnosed without expert opinion playing any part at all.
We're nowhere near that goal.
> When I finally had a psychologist tell me about Asperger's, and I went to some of the online communities and read about all of the other people with such similar experiences, it really helped.
How did you feel when Asperger's was abandoned, after an epidemic of phony diagnoses? Did it matter that many of the diagnoses were just opinion with no objective basis? This is not to claim that those with the Asperger's diagnosis were faking, but that their true subjective mental state wasn't being accurately assessed, and many smart people were being grouped with people who actually had one or another mental condition.
I point this out only to show that we have no idea what Asperger's is, or Autism is, and the necessary science is not being done.
All that's happened is that the terminology has been changed:
In 2013, the DSM-5 replaced Autistic Disorder, Asperger’s Disorder and other pervasive developmental disorders with the umbrella diagnosis of autism spectrum disorder. [0]
This simply codifies the conclusion that Asperger syndrome differs in degree, but not in kind, from more severe forms of autism. It doesn't mean that people who were formerly diagnosed with Asperger are now considered normal.
[0] http://www.autism-society.org/what-is/aspergers-syndrome/
"Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder."
SPCD itself is not considered part of the Autism spectrum and has quite stringent requirements to ensure that only really edge cases that are neither autism nor a classic referral to a therapist get caught by it.
This is bollocks.
1) PIP is not an "in work" benefit. Being in work doesn't exclude a claimant from getting PIP, but it's not a requirement.
2) PIP requires a long term illness or disability - You must have had it for 3 months, and expect it to last for at least 9 months.
3) PIP doesn't use just diagnoses, it also uses an assessment of your ability. Two people could have the same diagnosis and one person could get PIP while the other could be excluded from PIP.
https://www.gov.uk/pip/eligibility
> Daily living difficulties
> You may get the daily living component of PIP if you need help with things like:
> preparing or eating food
> washing, bathing and using the toilet
> dressing and undressing
> reading and communicating
> managing your medicines or treatments
> making decisions about money
> engaging with other people
From that list it's pretty clear that most people with ASD aren't covered, or would get the minimum amount.
And you mention DLA - people with ASD would have been entitled to the care or mobility component of DLA.
As far as the scientific need for strict classification goes, I can see how high-functioning people could potentially throw a wrench in things, because milder cases can be confused with other conditions. Nevertheless, that type of confusion is hardly unique to autism, and the diagnosis many mental illnesses and neurological disorders can be problematic due to comorbidity.
Anyhow, saying the science is not being done is just absurd. Just because the science is difficult and results are not easy to generalize, does not mean that it's not happening. The priority on severe autism (which is usually harder to misdiagnose) is understandable, and there's a possibility that findings related to severe autism may end up applying to milder cases as well.
Either way, the label is helping many people, and I think you are over-estimating the negative impact of having a broader diagnosis spectrum.
Here's an article by Allen Frances, who you may recognize as the editor of DSM-IV:
http://nypost.com/2012/04/24/americas-false-autism-epidemic/
Frances is very outspoken about this issue, and interestingly, he was one of the primary advocates for the inclusion of Asperger's in DSM-IV. His outlook has, needless to day, changed completely, and the expression "phony epidemic" originates with him.
> Anyhow, saying the science is not being done is just absurd.
Not at all. Many people and organizations are still treating Autism as though it's a mental condition. Evidence strongly suggests that it's a physical condition with mental symptoms. Once we accept that it's an organic ailment, real scientific progress will begin, and people will be less likely to unfairly stigmatize those suffering from it as though they're "mental".
As I said above, this process has scarcely begun. And "diagnosing" many bright people with Asperger's (including Isaac Newton, Albert Einstein, Thomas Jefferson and Bill Gates) perversely turned the condition into a status symbol among impressionable young people.
> I think you are over-estimating the negative impact of having a broader diagnosis spectrum.
The issue is whether we're focusing on evidence instead of anecdotes. At the moment, opinion rules. Remember that the content of DSM-5 was established with votes, not scientific study outcomes. This is one of the reasons the DSM is being abandoned by the N.I.M.H.:
http://www.newyorker.com/tech/elements/the-rats-of-n-i-m-h
The latter two have nothing to do with psychiatric or psychological diagnoses. A diagnoses is made on the basis of symptoms, it doesn't get more exact than that. There are symptoms which frequently go together, and this is how disorders get a name. Although science attempts to find biological markers for mental illness, this has not been very successful. Psychoanalysis is just pseudoscience.
I worry that as more and more fully functioning people are added to the spectrum that it will result in less help out there for people like my daughter that really need it.
Do you actually see this happening?
It seems to me just as likely that greater awareness of the entire spectrum will bring more acceptance and more resources.
Anyway, for my wife, learning that she has Asperger syndrome has been a great relief. It's hard for me to see that as a bad thing. Your story is heart-wrenching, and I hope your daughter gets the help she needs. I just don't see why my wife's experience and yours need to be in conflict.
Whenever I mention to someone these days that my daughter has autism, they don't really get what that means. They say things like "oh, is she really good at math" or "my coworker has autism too". And I'm thinking no she doesn't really understand even the most basic math, she'll likely not ever be able to have a real job, and who's going to take care of her when I'm gone because she needs help all day every day just to get through the day.
I strongly believe there needs to be a clear distinction between higher functioning people on the spectrum and the people that are really struggling with the most basic aspects of life.
Anyway, I get that people have different opinions, that's just mine. :)
But, that doesn't mean that it's without value. Sure, there's a lot less value in psychiatry now than there will be once it becomes more like civil engineering, but that's not a reason to ignore what we've got.
>The Autism spectrum at this point is so overblown that I'm not sure if it's even correct anymore at some point this looks like it's becoming the new ADHD everyone has it just in a different flavor.
Why do you think ADHD is not a useful or "correct" diagnosis? Unlike Autism, there is a spectrum of drugs available which seem to help people who are diagnosed with ADHD quite a lot.
Personally, I think that treating these sorts of things is a "social good" to the extent that being productive and able to support oneself is a social good. if you take someone's ADHD and properly treat it, you can take a person who is not capable of contributing positively to the economy, and you can put them in a position where they can hold down an upper-middle class job.
I think that for Autism, the workplace is changing some in ways that allow some people who could not previously have held down jobs to do so, which is great, but attacking the problem from the other side; developing medical treatments that allow some percentage of the population to function in society is, in my mind, unalloyed good.
edit: more correct psychology/psychiatry usage, I believe.
When half your class is on Ritalin something went wrong, and this only makes things worse for people which actually have learning disabilities as it just gives untrained professionals that should not be diagnosing the color of the sky the ability to pump kids with pills because their parents can't give a frack to discipline them.
I had 2 childhood friends that were "diagnosed" with ADHD and gotten Ritalin since they were in 6th or 7th grade it turned out that both were dyslexic and got frustrated in class because they had hard time reading the bloody assignments and the actual conditions were discovered pretty much after they flunked high school because the only thing that Ritalin did is glue them to a chair.
And yes I see a similar thing with Adult Onset Autism these days.
The entire industry is screwed up I got "diagnosed" as a child with everything from being a genius to an autistic with ADHD only because I could care less about class, this got some what aggravated by the fact that my soviet schooled parents decided to tutor me so a 4th grade student that can solve 2nd order equations in 4th grade and is too bored to do homework or had a vocal argument with his 7th grade science teacher that in he that mass isn't a "fixed amount of matter" that never changes (I got expelled for shoving like 50 xerox copies of a very poor proof into every teachers locker) surely has some disorders bring on the pills. Wile the truth was that it was just the outcome of 2 soviet parents with several PHD's between them, father was a surgeon, mother was a psychiatrists, sister a clinical psychologist, other kids weren't as lucky because by reading the diagnosis manual if you like taking the VCR apart you now have autism, right...
SO when someone has autism or ADD or depression or these other disorders that make it really difficult to reach out to get help, and then that one person does reach out and gets shit for help, well, then how do you not give up?
The behavior health system is stacked against the most vulnerable.
And nobody cares enough. All those doctors that dismissed this woman again and again need to be publicly taken to task for their lack of professionalism and lack of giving a shit (which IMO goes right against the Hippocratic Oath).
Whether I'm in the DC area and looking or in the Bay Area and looking, and I feel like giving up on a search most days because nobody knows how to properly treat those of us who are on the autism spectrum.
40 years ago the medical community, even the guy who coined autism himself, didn't even beleive it was possible for women to have autism at all (even the most extreme obvious cases) we are in close to that same position for high functioning women with Asbergers. Just take the fact that the average age of diagnosis for women is about ten years later in life than males, mostly because the symptoms accumulated over the past 40 years were only accumulated based on men. So women, just to get diagnosed (forget crying a life of "oh we have it so much harder as being autistic) just to get a diagnosis you have to stumble into a series of misdiagnosis and oddities and lack of documentation about how these symptoms (again we don't know the source) present themselves in women. BY then, women are just as much as men, if not more by a delayed diagnosis frustrated by everything theve been through and all the things that are "wrong" with them that their families can't figure out.
The struggles autistic men and women face are not to be argued whether its worse for one gender or the other, but based on the whole point above, that they are DIFFERENT, and we are less educated about one set of symptoms than the other. It's not about giving one gender a "I've got it harder than you" sympathy card.
1. In 2013 Asbergers was classified as being on the Autism scale.
2. Alot of high functioning Asbergers are technically autistic now that were medically/officially not autistic 5 years ago, but these people are no different than they were 5 years ago, its that the medical community rearranged a big group of typically high functioning people and put them on the autism scale. I happen to be one of these, and was diagnosed (as Maya was in this article) with OCD at 8, and anxiety, and basically an accumulation of common symptoms of autism until I went to an Engineering school where so many people were on the scale a Professor made us all take the test and that is when I found out about all of this.
3. Speaking of that, You can be tested for this and registered on a scale. As we do not know what causes autism, we can only diagnosis based on symptoms, like a lot of things, so the conjecture about "not knowing for sure" on this thread is valid, but so is it for alot of other diseases and cancers that we don't know the cause of, so that does not invalidate the seriousness of the impact the non sourced symptoms have on the lives of people.
4. Being an Aspie and a book nerd (my mom first took me to get me tested to see what was "wrong" with me when I spent the entire summer of my 8th year and read all 138 Mandy (kids mystery novel) books in 7 weeks and didn't care to do anything else).
I have since being diagnosed, read 17 books on females with Asbgergers and about 15-20 books about Autism in general, and I think the comments about females with Autism on this Atlantic comment thread and the HN thread so far are way off. That being said...
5. I DO NOT like this article because it is almost entirely anecdotal and focuses on Maya's extreme cases while for me, and alot of other female aspies I know (sources of female aspies below) it went more like all the things that make you cute and "quiet" growing up, you do not grow out of.
I would pausit (and youll see some horribly negative and ignorant comme...
Female aspies are empaths actually, which is counter intuitive to people not familiar with all of this, which makes them huge targets not just for casual bullying and being outcasted by girly girls, but for more sinister reasons as well. Even being older, empaths are the perfect codependent counter type for narcissists and other wise sociopaths and psychopaths. They have affective empathy (empty shallow charming ability to pretend to have emptathy) but crave raw empathy which is what aspie girls have an abundance of (google intense world theory, applies to both male and females for autism). This coupled with (I edited in my original comment in more detail) a females aspies or any autistic females tendency to be just incredibly naive about peoples emotions and their intentions, is a disaster waiting to happen.
Going to school in a male dominated environment with an unusual number of anti social personalities (introverts --> engineering...) I was the perfect target so sociopathic men and there were alot of them around me. It's not surprising in RETROSPECT that a year ago I got out of a long term relationship with a verifiable sociopath for all the reasons I just said.
After educating myself about all of this I wish I had read some of these aspie books for young females when I was younger and I could have protected myself from a lot of toxic situations.
Now, I volunteer in aspie programs teaching young girls how to code. Alot of aspie women can't keep good jobs because they are "rude and bossy" or not charming enough or "creepy and quiet". Luckily for me my skill set is in high need and objectively evaluated for the most part (can't argue with me if I produce your code on time) so I thought it would be incredibly empowering to build girls with this confidence and self esteem, and potentially the ability to arm themselves with solid careers/technical skillsets that overpower an HR departments ability for a 26 yr old girl wearing designer clothes and paid to be charming to evaluate a nerdy antisocial girl on her "overall performance" if actually she is an objectively solid and valued individual contributer and has code to show it.
If she is young I would recommend fostering her hobbies as much as possible and encouraging "structured playtime" for whatever her interests are. With channeling and encouragement (for all the people who post successful autistic women as a reason to doubt they have it at all) aspies including aspie girls can become MASTERS at the things they are obsessed with.
Turns out, successful people are typically successfully because they love what they do, they have infectious passion and they are GOOD at it, and can spend hours uninterupted developing their product or building their empire, so actually aspie women are the perfect character trait combination then for successful people, if they can have emotional support through their difficulties with social interactions while being encouraged to do what other people call "active but odd obsessions" because that could be the talent that makes or inspires her career one day, or maybe even her company that she starts.
I don't think I ever considered the interaction with 'bad insincere'-type personalities as being additionally worrisome, but I suppose it makes sense.
"I was the perfect target so sociopathic men and there were alot of them around me. It's not surprising in RETROSPECT that a year ago I got out of a long term relationship with a verifiable sociopath for all the reasons I just said."
Read "Dangerous Personalities", Navarro.J. [0],[1]
Navarro details a forensic checklist to identify personalities like this. I've got this book and it gives you a numerical score to ID said personalities, along personality types you've listed, and a few more.
Forewarned is forearmed.
[0] http://www.jnforensics.com/#!books/cnec
[1] http://www.amazon.com/Dangerous-Personalities-Profiler-Ident...
Thank you!
I'm also reading/have finished reading in the past few months: The Empathy Trap Safe People Without A Conscience Trauma and Memory Women Who Love Psychopaths Social Engineering Whos Pulling your strings In Sheeps Clothing
From your recommendation which is the first one I heard of, I found these highly reviewed books on Amazon in the recommended section after you search that book.
Did you find out any diagnosis or observations you didn't recognise?
I suggest you also read WEBIS and work at reading body language.[0] WEBIS is an API of human body language.
I read an interview on the book, DP, before I purchased it a year ago and Mr.Navarro made a comment in the interview that it was hard to write. I actually asked him why? His answer wasn't that revealing. I was just curious. After reading the book, [1],[2] I now know why.
If you have any specific questions, ask Mr.Navarro at http://twitter.com/navarrotells
[0] Read, "What EverBody Is Saying" WEBIS for specific examples of body language. Got this one as well.
[1] Cf: Time spent at Brigham Young University. (Read the book).
[2] http://money.cnn.com/2015/10/27/news/economy/joe-navarro-cub...
That doesn't follow. It could simply mean that she had really bad psychiatrists who just threw around diagnoses. Maybe it reflects that mental illness in general is poorly understood, because they didn't discover that the other diagnoses were false positives. I am afraid that unless a diagnosis is followed by a successful treatment, it's not worth much.
Were you expecting hard data in a magazine article?
I personally thought the 'human interest studies' were very informative, and gave me plenty of context when thinking about differences between male and female people I know (not getting any more specific than that).
I didn't expect hard data, but a list of traits specific to female autism would have been useful.
The response by doctors and the general public is about the same for:
People who can't be diagnosed with Celliac without extreme measures
Women who can't be diagnosed with a heart attack without extreme measures
Women who can't be diagnosed with autism without extreme measures.
There can't be much if anything in common between my son's stomach lining, a young womans brain tissue, and an old woman's heart muscle. Oddly enough what they both have in common is the same medical-industrial complex. On a very small scale you can fix one person at a time, with a heart bypass or whatever else, I can't disagree with that. The insight is whatever fixes the "big system wide problem" given the commonality of symptoms it obviously can't be biologic in origin. The problem is inherent in the medical system itself, what it means to be a medical system at all, what it means to be healthy or normal. I think this is missed by people hyperfocusing on one narrow issue, well, all we need is "the official autism test" and it'll all be fixed. Or we need to sell Chinese made pink bracelets to "increase awareness of female heart disease", thats all a waste of time compared to looking at the greater issue (of which I currently have no answer, but I'm also uninterested in wasting my time on half efforts)
https://www.autismspeaks.org/what-autism/learn-signs