Wednesday, October 31, 2012

What's Wrong With Diagnosing Yourself with Autism?

Self-diagnosis is the process of identifying a medical condition in oneself.  You look at signs and symptoms that you have and try to match them to a medical condition.  This process is prone to error under the best circumstances and potentially dangerous under worse ones.

In the autism community, there are some number of adults who have self-diagnosed themselves with a form autism.  They may refer to it using other phrasing, such as ASAN's "self-identif[ied] with the Autistic community", but it is really the same thing.  These people have looked at themselves and decided that, based on their behaviors, they have some form of autism.

The people will typically say that the self-diagnosis was a wonderful thing for them or how it changed their life.  And while, at first glance, it might seem like there is nothing wrong with this practice, it has been my experience that self-diagnosis is almost never a good thing for anyone involved.

In my opinion, if a person thinks that there is something wrong with them, they should not try and guess what it is themselves.  They should instead go talk with an unbiased professional who will be able be able to help them.  This is true for strictly physical problems and is doubly true for profound mental problems such as autism.

There are many reasons for this as a general statement, but here are some specific ones for autism.

1. Everybody has strengths and weaknesses.  Everybody has things that they are good at and other things that they struggle with - this is "normal" and expected.  So just because you have problems or struggle in some areas does not mean that you have a mental disorder.  Mental disorders are defined by their extreme behaviors - behaviors that are so far out of the realm of what is typically seen that they cause problems.

Autism is (currently) defined by profound impairments in three areas - communication, socialization, and repetitive/restricted interests and activities - that must appear in early childhood and that must act together to impair every day life.

For example, the ability to focus on a subject and become extremely knowledgeable is well within what is considered "normal".  You don't have autism (or a "trait" of autism) simply because you find a subject very interesting and can spend a lot of time learning about it.  It is only when the ability to focus turns into a constant fixation or obsession that you go from what is "normal" to something that isn't.

So, to be perfectly blunt, just because you are don't relate well to others and have some strong interests does not mean you have autism.  Along the same lines, just because a person is a "geek" or in some other technical profession doesn't mean that they are automatically on the spectrum somewhere.

It means that you have areas that you need to work on and improve in, just like everybody else.

2. It is hard enough for a "typical" person to objectively and accurately analyze and understand their own behaviors.  If you do actually have a mental disorder then that means that your ability to understand and objectively analyze your own behaviors will likely be impaired.  This is true not just in autism but most of the other major mental disorders such as ADD, schizophrenia, depression, and addiction, to name just a few.

To put that another way, if you are relying on your own opinions and observations about your behaviors and you do actually have a disorder then you will most likely be getting it wrong.

3. There are very few "objective" measures of autism and all of the reliable ones require a trained professional.  But there are some rather crappy ones that are promoted online by various that will likely give you the wrong idea.

Probably the most well know and most abused of these is the Autism Quotient.  The AQ is a meant to be used as a screening test in an appropriate setting with appropriate supports in place.  It is not meant as a test to see if you have autism.  Even if you get an extremely high score that will only raise your chances of having autism to like 1 in 10.  And the AQ cannot tell the difference between autism and other conditions such as schizophrenia.

I cannot count the number of times I have run across people who have decided that they have autism based on their own observations of their behaviors and their score on the AQ.  Some of these people might well have a form of autism but the numbers suggest that most would not.

4. Even if you do have some profound problems in the three core areas of autism, that does not mean that you have autism.  There are several other conditions, such as ADD,  schizophrenia and OCD, that overlap with autism and it can be difficult to tell them apart.  You have to consider the complete picture of all of the behaviors that a person has, when those behaviors appeared, as well as what behaviors are missing to be able to tell them apart.

This is why an objective, unbiased professional is critical to the process.  They should know not only what the different conditions look like and what the signs of each are but also how to tell them apart.  They will know the little things like an AQ isn't a diagnosis and that a high score could mean schizophrenia or autism.

Accurately determining what (if any) condition you have is absolutely critical for the next point.

5. You have to make sure that any treatments are appropriate for your condition.  If you taken it upon yourself to decide that you have a condition then you may use treatments that are completely inappropriate for your actual condition.  More importantly, if you have decided on the wrong condition, you could miss out on treatments that could really make a difference in your life.

If you have decided that you have a form of autism but also decided that you don't need any form of treatment, then I would ask why you think you have a disorder in the first place.  The point of a medical label is to identify a condition so that you know what you are dealing with and how to treat it.  A medical label is not an identity.

(And no, "the rest of the world needs to just accept who I am" is not a treatment.  Not that acceptance itself is bad or unneeded, but it will rarely be enough to give you back the ability to function in the world.  More on this in a bit.)

6. You have to ask yourself what a self-diagnosis of autism will actually do for you.  While at first glance it might seem like the label can help you make sense of your life, it really can't.  The autism label might provide a plausible sounding rationale for your behaviors but the label alone doesn't necessarily help you deal with or improve those behaviors.  For that you need an objective person who will be able to consider all aspects of the behaviors and help you arrive at an appropriate strategy.

And if you are just looking to use the label of autism as an ongoing justification for your actions and are refusing to change yourself in any way (i.e. you are in the "autism is just a difference camp"), then I have two little words for you - grow up.  You are supposed to change and adapt your behaviors in response to your environment, even when you would rather not and it is uncomfortable to do so.  Autism is not an excuse for behaving badly.

Just to be perfectly clear here, if you are disabled by a mental disorder then you are entitled to the same rights that everybody else is.  You are not less of a person simply because you have a disability.  You have the right to expect that others will still treat you as an equal and you have the right to expect that  accommodations will be made to help you function better.

But if you have the ability to change and improve yourself but choose not to because you think that you are defined by a medical label then you really do have a problem.  And the problem isn't that you have autism.

Which leads to the last and very unfortunate problem.

7. There are certainly many people in the world who do have autism, who struggle because of it, and who are able to speak about it publicly.  These people provide an invaluable service because they enable the rest of us to better understand what it is like to have autism.  I applaud their courage to speak out about their condition and am extremely grateful for the insight they provide.

But then there are a number of people who have self-diagnosed with autism and then rush to tell the word "what it is like" to have autism.  These people often spread inaccurate information about what autism is and what effects it can have on a person.  These people cause direct and lasting harm to people who actually do struggle with autism by giving a false impression of what autism is and by drawing attention away from people who are actually disabled by their autism and truly do need the help.

These people often encourage other people to self-diagnosis or "look into it" for themselves.  They are often the people who use autism as a justification for their actions and claim that it is the rest of the world who have a problem and not them.  These people certainly do have issues but, in my opinion, that problem is rarely autism.

So, for these reasons and quite a few others, if you think you have a serious mental disorder such as autism, please don't try and diagnose yourself.  Instead go get the help you need.  There is no shame is trying to get help when you need it and you have everything to lose and very little to gain from diagnosing yourself.

P.S. The practice of diagnosis shopping, i.e. going to multiple professionals until you find one that agrees with your self-diagnosis, is almost as bad as diagnosing yourself in the first place.  There is certainly a time when a second (or third or fourth) opinion is certainly a good idea but there is a clear difference between trying to find a professional who can help and going to multiple professional until you find one that agrees with you.


  1. Can I just say "what he said". I get very frustrated when people self dx.

    When my eldest was officially dx'd with HFA (had other dx's like mild PDD first) the Dev Ped told me I probably had Asperger's.

    Probably do... BUT, I am not disabled and do not require services to cope daily. Therefore, it's simply something to tuck in the back of my mind and look at my kids and think "well they come by it honestly"... but I don't claim to know all about autism nor be autistic.

    I really liked the comment about "behaving badly". IMO if a 2yr old can learn to behave, anyone can and I have a 13yr old that I have had to medicate to survive puberty and rebuild those "filters". No, I'm not rewiring his brain or making him "normal" (although he now passes for normal)... it's called "growing up" and learning to be a full member of society. In Ontario we now have legislation to protect workers from abuse in the workplace... that finally protects everyone else from those that think it's ok to abuse others at work. Social skills and behaviour can be taugh to everyone... it is not a right to abuse others just because you have a dx.

    1. "it's called "growing up" and learning to be a full member of society"

      Exactly. Just because you were "born" a certain way doesn't mean that you are forced to remain that way and being a responsible adult means that you are going to put other things ahead of how you would prefer to act.

      I really am beginning to think that a large part of the whole "I shouldn't have to change" attitude is simply resistance to change.

    2. It isn't "I shouldn't have to change", it is "I don't know how to change".

      I would like to be normal. I envy the regular folks what can strike up small-talk, or look folks in the eyes, or interact casually without wanting to run and hide in a corner for a week.

      Also, in comment to a lower thing about "gifts"...

      I have an above-average IQ!

      And that really is a gift, if this ( is any indicator.

      No, but seriously... autism sucks. Look out for the suicide-risk. I don't have an official source, but I have read that something like 15% of autistic teens will try to kill themselves. Only reason I never did is because I attached to my brother as a reason to live.

  2. Shouldn't you ask people who self-diagnosed whether and in what ways it helped them? This seems like a lot of speculation from afar.

    1. Ok, for the sake of argument, lets assume that a person derives some substantial benefit from self-diagnosis that cannot be had from a regular diagnosis or that a regular diagnosis isn't available for one reason or another. Which of my above reasons do you think that changes?

      And no, this is not speculation from afar. This is based on my understanding of what evidence based medicine has to say on the subject. This is also based on my own run-ins with the self-diagnosed and on my day to day experiences with the common misconceptions about autism.

      For example quite often when I tell people that my children have autism, they will ask something along the lines of "what's their gift". Because, you know, every person with autism has some special gift that makes up for their autism...

    2. I think you're confusing a lot of things and imagining monsters under the bed. If self-diagnosis makes people happy they should do it, end of story.

    3. What a well thought out response.

    4. in response to the "what's their gift?" issue, that has nothing to do with those who chose to self diagnose. there are 2 main types of Autistic person shown in the media, the "low functioning" autistic who will never speak and will live in a group home and the savant (or, if not a true savant, at least a really smart geek). savants are really rare, and most of us are verbal at least some of the time but the rest of us just don't push up the TV ratings.

      in my experience, most of the "common misconceptions" about autism can be more accurately blamed on the media (it would be interesting to find out if the misconceptions you see are the same as the ones I see).

      the biggest benefit of my diagnosis to date (my OFFICIAL diagnosis, before you ask) hasn't been access to special educational provision or therapies, it has been my feelings of acceptance within the online autistic community, on the oldest autistic forum which, incidentally, doesn't differentiate between official and self diagnosis. I have actually experienced quite a lot of prejudice from GPs and other professionals because of my diagnosis, as they don't believe a "special" person is fully capable of making decisions. for this reason, I recently advised an old friend NOT to seek formal diagnosis.

    5. Hi just_me,

      Regarding the "gift" issue, it has been my experience that groups of people who talk about the "gifts" are also the ones that push self-diagnosis.

      Maybe our experiences are quite different, but I often find that people who look at autism as some sort of gift are also ones who have self-diagnosed. I rarely find anyone who has a diagnosis from a very young age who talks about the "gifts" of autism (although there are some notable high profile people who do).

      It have also found the "gift" theme to be much more common in the extremely "high functioning" groups. It has been my experience that almost all of the self-diagnosed people fall into this group.

      Maybe these are just spurious correlations and the real relationship is between functioning level and "gifts", who knows.

      As for the larger issue of who spreads the misconceptions, I think the media definitely does a lot of the damage but I also think the extremely high functioning groups play a large role as well.

      There are several notable self-advocate organizations such as ASAN and GRASP putting out misleading propaganda about what it means to be disabled by autism. These groups (ASAN especially) are doing real harm to people who struggle with their autism. They put their own ideology ahead of the best interests of disabled people (example, ASAN's position on wandering and inclusion in schools).

      I think it is also worth noting that these types of groups actively promote self-diagnosis. Which leads to some rather interesting situations like when you have self-diagnosed ASAN members protesting an autism speaks walk.

  3. Very well said. Autism isn't a lifestyle choice, it's a brain disorder.

  4. I have to respectfully disagree. I am not so much "self diagnosed" as I believe that is that there is a high probability I am on the high functioning end of the spectrum based on convergent evidence from about 5 validated measures. I found this out because I enrolled in another doctoral student's autism study as a control and got put in the experimental group instead (not an official diagnosis but again, convergent evidence). Here is how this has informed my thinking:

    1. It provides a coherent framework for understanding many of my more odd behaviors. Stimming, my social anxiety triggers, many of my more OCD type traits, my odd verbal style, etc. - it is helpful to know other people cope with the same cluster of traits. It was especially helpful to know that an aversion to hugging/affectionate physical contact did not mean that I lacked affection or love for my mother, something that had bothered me for basically my whole life.

    2. It explains persistent social difficulties I had worried were actually related to some sort of personality or character defect. My hyper rational style of relating to the world makes it hard for me to, for example, listen to friends tell me they are sad because of something dumb they did, especially if it's the same dumb thing they always do that makes them sad (when they are otherwise a smart person). I have learned that the impulse to say "stop being dumb" doesn't make me an uncaring jerk (because I ultimately just want them to not be sad), it just reflects a more dominant logic wiring than emotion wiring (to grossly oversimplify).

    3. It helps me target traits that I need to improve. Acknowledging that I lack certain aspects of empathy, or certain social skills, helps me then work towards compensating for those deficits, instead of just wondering what the heck is wrong with me and why relationships don't work out. It gives me a sort of road map to my weirdness that I didn't have before.

    Now, maybe all of this is illusory correlations that I have falsely convinced myself of. However, it hasn't done me any harm - I realize I function at a level where it is mostly "side effects" that are a problem (anxiety mostly) so that is what I seek help/diagnoses for. If anything, for some reason I see things through a lens that looks a lot like aspergers, whether that is because I have it or another reason, does it matter? It helps organize my self reflection and make it more productive. That is what "self diagnosis" gives me. I don't go around waving a banner for autism/asperger's because I don't think my advocacy would hold much weight without official diagnosis, it's just been something I've find privately helpful.

    1. Hi NightOwl,

      First of all, thanks for taking the time to comment. I am always open to people disagreeing with me and I certainly appreciate people being respectful about it.

      There certainly is a grey area between people who simply declare that they have autism and someone with a clinical diagnosis. One one extreme you have people who take the AQ online and thinks that a high score means they have autism while on the other extreme you have people with some clinical workup that suggests autism but no formal diagnosis.

      In my opinion, the thing that differentiates people who take the label when they don't need it from those who actually have autism is how much difficulty they have in day to day life. The autism label is meant to describe the behaviors of a person who has substantial difficulties in day to day life; it is not meant to describe a personality type.

      And that's the problem, it is hard to make that determination. It is doubly hard to try and make that determination from online conversations.

      I am not judging you or making light of what you are experiencing because I simply can't know, but the problems you describe in your comment seem to fall into what I would consider the normal range of experiences. Also, the problems you describe are several orders of magnitude less severe than almost every other person with autism that I know.

      But, just to be clear, I am not trying to make light of any problems you are dealing with, playing the "not disabled enough" game, or saying that you don't have a form of autism. You could very well have a form of autism. As I said, I am not judging your claims in any way, shape, or form.

      That is the role of an objective clinician - they are supposed to be able to take a look at your behaviors and tell you whether they are outside the norm. I can't speak to whether the validated measures you have used without knowing what they are specifically but, as a general rule, there are only two validated measures that can be used to make an actual diagnosis - the ADI-R and the ADOS. Almost every other measure out there is meant to be a screening instrument and is not meant to be used to make an actual diagnosis.

      And to the matter of harm, it all depends. If you are simply using the framework of autism to help you understand some of your own behaviors better then that isn't necessarily a problem. Well, I should say that it isn't a problem until it is. There are a lot of potential problems that you have to watch out for.

      As I said in the main post it is very easy to confuse autism - especially high functioning autism - with other conditions.

      Another problem, one that I didn't go into in the main post, is that you could pathologicalizing what are "normal" behaviors. The range of what is "normal" for any behavior is absolutely huge - far larger than the fairly narrow range of behaviors seen in autism. Everybody thinks that there is something wrong with them at one point or another. Everybody has things about themselves that they don't like or want to change. There is a large difference these sorts of areas and autism.

      And example here would be people who say think that they have depression because they feel depressed when it reality they are experiencing a normal reaction to some situation. There is a large difference between what people experience in true clinical depression and what people experience when they are simply sad. Yet a person who is simply sad may think what they are experiencing rises to the level of actual depression.

      Another problem, the one I have the biggest problem with, is when self-diagnosed people do go the advocacy route. I have run across more people than I can count who decide they have autism and then go tell the world about it. And I see a very real harm when they speak for people, like my children, who are far more disabled by their autism.

  5. You raise interesting points to consider--Kathleen and I have a show on the newly created Autism Channel available on Roku, and I'm showcasing your post as part of the conversations in the online community regarding self-diagnosis. If any of your commenters would like to offer their thoughts, they are welcome to email us with a link to their blogpost.

    Thanks for being a part of the dialogue.

    1. Hmm, I had not heard of the Autism Channel before but there it is on my Roku. Let me know, if you would please, when your episode (or whatever the proper term for it is) is available, I would be interested in watching it.


    2. It's brand new, just rolled out, but the film company has been working on the various shows for around a year. Our show is being rolled out this week, and it may take them awhile to edit our new footage and get it posted, but I'll let you know as soon as it is.


  6. Been thinking about this post for few days now, as someone who thinks I may be Aspergic, and I think what you don't consider is the difficulty some face, in UK at least, in actually getting the requisite referral to clinician for diagnosis. My GP infomed me (wrongly, it transpires), that there are no facilities for diagnosing adults locally, and that he doesn't see diagnoses as being useful because of 'self-stigmatising'.

    1. Hi Kalha,

      You raise some valid points, ones that are equally valid in the US as well as other parts of the world.

      Depending on where you live and what sort of access you have to health care, it might be difficult to find a clinician who would be able to make a diagnosis.

      Another problem which you touched on is that not all medical professionals have a good level of knowledge when it comes to autism. And this problem isn't limited to just GPs, even pediatricians who should be knowledgeable about autism often aren't.

      I can't tell you how many times I have personally run into medical professionals who should know about autism but don't or heard of other families having the same problems.

      But, in my opinion, the availability of and access to diagnostic services doesn't change any of my points in the post. You still would have a hard objectively analyzing your behaviors, you could still confuse your behaviors for autism when they are something else, and you still need to be sure that any treatments are appropriate. And if the point of the diagnosis isn't treatment then you are still wasting your time with a diagnosis.

      So while I understand what you are saying and actually agree with you about the potential problem, I don't really think it changes anything. In my opinion, if you have a choice between no diagnosis and diagnosing yourself, I think it would be better (and less potentially harmful) to go the no diagnosis route while trying to gain access to the appropriate diagnostic services.

  7. Autistic adult (diagnosed very early, went through speech therapy, etc.) here.

    I mostly agree with you on the issues surrounding self-diagnosing and will probably link this piece when this topic comes up, but I have a lot of problems with the way you characterize autism and organizations like ASAN. I apologize if this is incorrect, but you give the impression that you think neurodiversity advocates are trying to keep people from helping out autistics at all - this is a common belief.

    For the most part, from my experiences with this movement, that is a strawman. I am all for helping autistics navigate the world and alleviating elements of the condition that are clearly harmful to themselves and others around them. I know hardly anyone who would disagree with that.

    I just don't believe in trying to "fix" things merely because they're "weird" as opposed to actually harmful (which is often the case with stimming, for example). I don't think an organization with zero autistics on its board of directors has the right to speak for us, for the same reasons many feminists take issue with the very concept of "male feminist". I believe that autistic adults should have their wishes respected (with the above caveats in mind). I do not believe "autistic" should be such a shameful identity that I have to remain anonymous online and watch people I know use it as an insult. And I do not wish to be "cured", as I think this experience has made me a far better person than I would have been otherwise.

    I am far from alone on these points, and even many who would be considered "low-functioning" feel the same way. We certainly understand and sympathize with those in situations like yours; we just wish to have our words heard as well. I just find these kinds of mischaracterizations offputting on a site which presents itself as a "skeptic" blog, that's all.

    1. Hi Anonymous,

      I think we are coming from two very different perspectives here. I view "autism" as a medical label that describes a developmental disorder. I don't buy into the idea that "autism" is some sort of identity.

      And yes, I do think that neurodiversity advocates are trying to impede treatments for people who need them simply because of ideology. Take for example ASAN's position on wandering in autism -

      Wandering is a clear cut case of a behavior that is quite literally life threatening and yet ASAN is against trying to better understand the problem and wants to recast this issue as some sort of civil rights issue.

      And, in fact, this isn't an academic discussion for me as one of my daughter does wander. I would gladly slap another medical label on her if I thought it would keep her safe and alive.

      ASAN's recent rant on inclusion in schools is also another prime example of missing the point. I am not going to force full inclusion on my daughters simply because some advocate has declared that non-inclusion is bad. Instead I am going to consider what is in their best interest and have them included as much as is feasible while still allowing them to stay in an environment where they can learn.

      Other points of contention are the ideas that most "stims" are harmless and that parents are just concerned with "weird" behaviors when (most of the time) nothing could be farther from the truth.

      I could cite countless other examples but the core of our differences probably comes down to a matter of degree. It is one thing to want to be accepted as you are when you have the ability to participate in society, even if that participation is limited. It is quite another when the problems aren't societal but rather involve day to day functioning.

      And no, I am not talking about the difference between "low functioning" and "high functioning", I am talking about the difference between people whose disability is extremely mild and are able to live independent lives and those who don't have that ability.

      In my experience, neurodiversity advocates and groups like ASAN focus almost exclusively on the former and ignore the latter. Honestly, I don't really have a problem with neurodiversity groups having their say as long as they preface their discussions with the caveat that they don't speak for everyone with autism and as long as they don't try and shut out the voices of parents like me in the process.

      But since, in my experience, neither of these things happen and these groups seem to be hell bent on marginalizing my children's needs in their quest for acceptance, I do have quite a large problem with them.

  8. Real people with real autism spectrum disorders do not usually marginalize the problems. A major difficulty identified by Kanner and Hans Aspergers is difficulties with affective contact/empathy/social-emotional reciprocity in social communication, forming friendships, and non-verbal communication.

    Currently an individual can be diagnosed without 2 of 3 of these symptoms described by Kanner and Asperger's, but that changes with the DSM5 criteria. Basically, currently a person can score high on any of the online tests that do not measure for the actual requirement of a significant impairment in a major area of life functioning, and consider themselves autistic if they choose to.

    While this can be a personal choice, or an issue of not being able to afford a diagnosis, the real harm that I see as a person actually diagnosed on the spectrum with a documented verbal delay of language in childhood, is the people online that obviously would not likely meet a real diagnosis, given their level of functioning in life, attempting to tell other people that check all of Hans Asperger and Kanner's original check boxes of descriptions of "autistic" syndromes that will be better reflected in the DSM5 as mandatory requirements, that they don't understand their own symptoms on the spectrum.

    Some make uneducated claims that people with autism don't have difficulties with empathy or making friends, which is possible for some because it is not currently a mandatory requirement, but does not reflect the majority of individuals on the spectrum that struggle with these and other difficulties.

    I will not mention any names, but I have watched some of these people come in to autism communities in midlife, with a self diagnosis, or even a lie of a diagnosis, later outing themselves in another autism online community, starting a cult of personality of "Aspergers Pride".

    I think some of these people really believe they are on the spectrum, as it provides an identity for them in midlife, which is fine as long as they don't try to tell diagnosed people on the spectrum that they don't have the problems that they are diagnosed with by professionals, like difficulties with empathy in connecting with others and developing and maintaining peer appropriate friendships.

    There is probably less than 1 percent of the people actually diagnosed on the spectrum participating in online social communication, while some others are attempting to speak for everyone else on the spectrum, and silencing them if they attempt to suggest that the condition can be a harsh one to endure. I've even seen some go as far as suggesting that a person on the spectrum is an "Uncle Tom" if they support the efforts of organizations like autism speaks. It's disconcerting to me considering the depth of the struggles that some have on the spectrum.

  9. Part 2 of comment:

    The fact that a person could be recognized on the spectrum in midlife after being involved in international diplomacy, seems be an anecdotal justification for the revision of the diagnostic criteria, focusing on the fact that it is a neurodevelopmental disorder not a group of symptoms that could potentially be generated from midlife stress. It's become a lucrative area for some to sell stories of success on the spectrum.

    Some in midlife with generalized anxiety, depression, or other issues resulting from the stress that often occurs, could potentially tick enough boxes of the current required criteria of Asperger's syndrome to get misdiagnosed if there is no record from childhood of the symptoms.

    But, it seems that issue will at least be partially resolved in the future with the new DSM5 criteria. And, autism will once again become more limited to the serious childhood condition originally described by Leo Kanner and Hans Asperger's that warrants appropriate levels of concern and support in the future, rather than some of the elite stories of functioning and success greatly exceeding what one would see in the general population, projected on to the rest of the diagnosed spectrum, that seem at times to overshadow the greater difficulties that exist.

    My family is the reason I am currently alive on the spectrum; the disrespect shown families like mine that struggled to help me, as those families now have an area of online support to share their struggles, is very sad. At least 80 percent of people actually diagnosed on the spectrum depend on their families for support, and many do not see them as the enemy of what is so often expressed online.

  10. I just found this post because some self-diagnosed autistic people, who seem to actually just be jerks (and all identified as nonbianarily gendered for some reason), were attacking my Tumblr blog about my life with my adult autistic brother. I was shocked that anyone could or would diagnose themselves with such a complex disorder, so I started researching the self-diagnosis trend. If nothing else, you have articulated many things that I couldn't about self-diagnosis, and I know feel much better about myself. Thank you.

  11. This is an awesome straight forward blog. You expressed many of my concerns about self-diagnosis. I suppose I differ a bit. I don't mind self-diagnosis, all of us at some point self-diagnose something. Then we go to the medical professional for a formal diagnosis. I just did it last week with irritable bowel syndrome. Sure enough, I was right. Where I have issues with self-diagnosis is where it is self-serving. Those who speak for all need to be told in no uncertain terms to speak for themselves. A six year old who elopes has no civil-rights to defend. No six year old does. And that goes for the type of classroom a six year old or sixteen year old is in. Parents make decisions for kids all the time. Some of them they may not like, but they have the right. Teenagers go to church every week against their will. Those who use autism as an excuse to be jerks need to be told that and shut down as they do to others. Those who use it to be cute or trendy, same thing. But it isn't so much the self-diagnosis as what they see as the purpose of their diagnosis and how they use it.

  12. Thanks for a good read. I agree entirely. What makes matters worse is that some self diagnosed people within the autism community then take it upon themselves to tell others how to think about autism. I have seen self diagnosed activists laying into parents of autistic kids telling them they are terrible parents who just don't understand what it is like to be autistic.

    Now I am all for parents listening to autistic people and learning about autism. This was the single most important thing I did in trying to understand how my son thinks. But if the person dishing out the "advise" isn't even diagnosed properly how the hell do they know anything useful about whats going on in my sons head? I mean they might, if they have got their diagnosis correct but who knows? As such getting advice from self diagnosed people is a bit like getting advice from some bloke down the pub. He might know what he's talking about but then again he might not.

    I think there are several conditions which one could easily confuse with autism, hell even the professionals get confused and misdiagnose. you mention several but also various forms or narccissm could easily be misdiagnosed if one is self diagnosing. For example a narcissist may well buy into the whole Aspie superiority thing and hence the very condition they have gives a greater chance of misdiagnosis. I mean no one wants to be a narcissist least of all a narcissist!

  13. I would like to start with a comment based on your response to Night Owl of Nov 3, 2012.

    " In my opinion, the thing that differentiates people who take the label when they don't need it from those who actually have autism is how much difficulty they have in day to day life. The autism label is meant to describe the behaviors of a person who has substantial difficulties in day to day life; it is not meant to describe a personality type."

    This statement would imply that you do not recognize Asperger Syndrome as Autism. HFA/AS can give a person a day-to-day life without difficulty - or, at least, perceived difficulty. A day-to-day look at California might lead one to believe that it's just fine; there is no perception of the deep pressures that lies unseen and from time to time cause an earthquake. So, too, with AS/HFA the problems beneath may be unrecognized, but they are always present and always acting in small ways that from time to time show up in a serious disruption. Substantial difficulties in "day to day" life certainly shouldn't be taken only in the context of meaning one single day to the next, but also in terms of week to week and month to month. This is where the partial response cited above falls down; substantial difficulties can build up day to day unseen and only show themselves as the occasional earthquake.

    At the end of your response to Night Own you conclude, " I have run across more people than I can count who decide they have autism and then go tell the world about it. And I see a very real harm when they speak for people, like my children, who are far more disabled by their autism." Well, if these 'people' are speaking for others like your children who are more disabled - they shouldn't be. But if they are simply speaking out about their own experience with AS/HFA and, possibly others with the same condition, then it makes one wonder if you just want to discount anyone who has AS/HFA because their lives won't be as troubled as your daughters' lives will be and as yours is because of them.

    Your blog of 10/31/12 largely repeats, but not as well, your blog of 10/27/10 where you advise avoiding the AQ (Autism Quotient) Quiz. In it you flatly say that taking the quiz is bad advice. In my opinion that blog and this one are the bad advice. The 10/27/10 blog is, by the way, what led me to your blog in the first place as I encountered it through Google. Your blog of 11/11/10 also criticizes the AQ and again touches on self-diagnosis. Is this a favorite topic?

    First and foremost, the AQ Test (at least, as I understand it) is really about Asperger Syndrome - it isn't about Autism in general. It is described in the Adult Asperger Assessment (AAA) paper (Simon Baron-Cohen, - Journal of Autism and Developmental Disorders, 2005). So your long explanation of why it won't spot Autism very well and why it isn't worth taking begins with a false premise. You do the math very nicely in the 10/27/10 blog - but you apply it the wrong way; it's not about Autism in general - it's about AS/HFA - at least in my relatively new and ,limited understanding of it. By the way, in the 11/11/10 blog you do admit that "the AQ is aimed squarely at high functioning adults with normal intelligence and that group is certainly a smaller subset of the general autism population".

    Your criticism of self-diagnosis implies that you do not recognize AS/HFA as being Autism at all (see Point 1 - paragraph 3). If this is so, you should begin with this stipulation where you digress from others who do recognize it as part of the Autism Spectrum. I do not wish to comment on your depreciation of self testing for Autism in general - I don't know enough about the full spectrum to make an intelligent comment on that. -continued-

  14. -continuation of previous post-
    However, I do STRONGLY disagree that people should not use the AQ Test as a beginning to self-diagnosis of AS/HFA. First, not everyone lives in an area where they have access to someone who might give an accurate diagnosis. Second, not everyone has the means to pursue a full diagnosis which necessarily has to be an expensive process. Third, not everyone (perhaps, even, very few) would benefit from a full diagnosis; I am 69 years old - at this point in time what help would a diagnosis be to me? Fourth, since there isn't a cure, there would be many for whom an official diagnosis would be of no benefit whatsoever. However, a self diagnosis paired with some research, an examination of how this fits a life pattern, and some related tests such as: EQ (Empathy Quotient) and CAST (Childhood Autism Spectrum Test) can also shed light and, if the light gets bright enough maybe one can see the picture as clearly as an official diagnosis would. At that point one can (as I have) make a lot more sense of how things went through childhood and into and through their adult years. At a reasonable age, they also then have an opportunity to drastically alter the rest of their lives.

    There are many people who are now adults who could not have been diagnosed when they were younger. As I was in grade school in the early and mid-1950s there really wasn't much of a thing called Autism and nothing at all called Asperger Syndrome. That doesn't mean I didn't have AS/HFA, though. And, I would guess, many of the kids in the 'Special Class' where I went to school may well have been Autistic - but no one knew about it. Would your children be Autistic in the 1950s? Or simply labeled as 'retarded' and then put on a shelf?

    You seem to believe that for it to count, any Autism had to have a dramatic effect every day. Well, I can tell you that AS/HFA has a small effect every day that usually goes by largely unnoticed but still has a cumulative drastic effect - albeit not so much so as your daughters probably experience. In looking back I can certainly see how life altering it would have been for me if I had known about AS/HFA in my teens, or 20s, or 30s, or even 40s and possibly even early 50s. Maybe I wouldn't be living as a hermit today - though that isn't so bad, either. Or maybe it would have made little difference - but I truly doubt that. There are a lot of maybes, but even a self diagnosis years ago and then acting on it could have profoundly changed my personal and social life and maybe that would have been better. So, from a personal perspective I see you as entirely wrong about both the AQ and about self-diagnosed AS/HFA. And from a wider perspective, I would say that you should encourage the people who believe they may fall in this particular spectrum to self test, investigate, research, and act according to what they honestly find - possibly for an official diagnosis or possibly to simply try to adjust their lives accordingly and make others close to them more aware of the situation. Frankly, I believe you owe an apology through your blog to those you discourage form self-testing and self-diagnosis (if done thoroughly) of AS/HFA.

    By the way, I have spent a LOT of time reading your blogs (binge reading, if you will) and your blogs are well written and almost always seem level headed and reasonable (with the exceptions mentioned above). However, I would like to suggest you have someone else proofread them - there really are quite a lot of minor mistakes such as repeated words or missed words that do detract a bit. The few spelling errors ('and' instead of 'an', for example) that a spell checker won't catch do take a little something away from you otherwise excellent writing. I would also like to suggest that when you use terms like 'Stimming' (8/18/13) you should, very near the beginning, define what the term means - not everyone is as familiar with the jargon as you are after your years of exposure.

  15. just to muddy the soup further?
    do you know psychopathy was originally described as "autistic psychopathy"
    the lack of clarity in the terms aspergers , autism , pda , scd and even adhd and ocpd and thier overlaps?