Why I Feel That Self-Diagnosis Is Valid With ASD

[Anarkitty]

So I was talking to my autistic son last night. He has not done any reading at all about autism; he's only listened to me talk about it. In addition to being unconvinced that he is autistic (see second sentence), he also mentioned that he feels like calling himself autistic would not be fair to those who have been formally diagnosed--that self-diagnosing might be seen as trivializing the condition. And to be honest, I felt the same way when I first began to suspect that I'm autistic. As I mentioned in another post, once I started reading, the evidence became overwhelming, but even so, at some point, something flipped in my brain about the validity of a self-diagnosis. I wanted to mention my reasons and see what y'all had to add. Maybe it will help someone. Maybe it will just satisfy my curiosity.

I don't think I'm treading new ground here. Rather, I suspect I'm verbalizing for myself what many of you have already figured out.

PLEASE NOTE: I am NOT trying to say that people should not get a formal diagnosis. For many people, this is necessary to get the supports they need; others simply want confirmation from a professional; still others may have reasons of which I'm unaware. I love that the autistic community seems to be quite open about diagnosis, accepting everyone and not making judgments regardless of the status of one's diagnosis.

Even though I'm fine with people self-diagnosing ASD (and ADHD as well), I certainly don't think anyone should diagnose themselves with schizophrenia or bipolar disorder! I would advise against anyone attempting to do any such thing. And that thinking led me to wonder if I'm being a hypocrite--why is it okay for me to examine my own mind and come to conclusions about the way it works while saying that others should not do so?

It was this thinking that finally helped me to understand what core idea changed in my own mind, and it is this:

I'm not mentally ill. Since I am not mentally ill, I have no need to be diagnosed by a medical professional. This is where the language of pathology is working overtime against us. If ASD is simply another way that the brain can be wired--if we are simply different, not less--then what need is there to be evaluated by a medical professional? It is only when ASD is seen as a "mental disorder" that "diagnosis" becomes something that one can't do on one's own.

I'm right-handed. I'm an introvert. And I have autism. All of these are statements about the way my brain works, and none of them require a professional diagnosis. My own behavior makes all three of them obvious to anyone who understands what the words mean.

I'm also depressed and considering an anti-depressant. My ADHD son may consider medication to help him focus. These are medical conditions. For these, we would need to talk to a doctor and establish a plan for treatment. There's a clear difference here.

There's also another point that has to be made--at what point of study do I actually know more about autism than a local medical professional? I'm not saying that reading a lot of books gives any one of us an education equivalent to medical school! But at the same time, I've read about too many people who originally did not get an ASD diagnosis (but later did) because a doctor decided that the person was too social, too physically affectionate, or made eye contact too easily. I mean no disrespect towards medical professionals; however, it is clear that at least some of them are not up to date on the current understanding of ASD as a spectrum or how it differs in women in particular.

Another point: Recently, I saw a post here where a member mentioned having to explain the results of one of tests taken to the professional who administered the test in order to avoid an incorrect diagnosis because some of the diagnostic tools available to the professionals can actually work against an ASD diagnosis--some of the symptoms of ASD can look like other disorders which are mental illnesses. In the end, even with a list of objective criteria, a diagnosis is always subjective, regardless of whether individuals diagnose themselves or a doctor diagnoses them, because a determination has to be made: Is there enough here to satisfy this criterion? Do these examples count as the "clinically significant impairment" necessary for formal diagnosis? Is it more likely to be ASD, or does another condition better explain the behaviors observed?

There's not a simple blood test or brain scan that can give a definitive answer every time. All anyone can do is gather objective data, as much as is possible, and make a subjective determination.

One final note: Early on in this exploration, I contacted all three of the local professionals who are qualified to give an autism diagnosis. None of them have bothered to return contact and tell me how I can get diagnosed. They claim to be the gatekeepers of my own neurology, but they feel no obligation to see me and help me to understand what's going on in my own mind. They have left me completely on my own, both now and when I was a teenager in the 80s trying to seek help. If they are not obligated to see and diagnose me, then why should I consider myself obligated to await their opinions before recognizing my own autism?

 

[Isadoorian]

There's absolutely nothing wrong with self diagnosing. Many here are self diagnosed, as am I. Many are content with their self diagnosis, others may get an official one as a second opinion.

Also, people who try to gatekeep things (especially when it comes to diagnosis's and people being fans of things) are people who should be ignored, as they have nothing else better to do with their time and very likely lead colourless, boring, and pathetic personal lives at that.

 

[Mia]

I'm self-diagnosed. And my husband by way of his work, was eventually diagnosed. Neither of us receive benefits of any kind. Nor do we want to, we both worked our entire lives and have no need for any additional aids.

In the province I live in, autism is described by the medical community as a 'mental illness', still. When my husband was ill and in hospital, there was a man in the next room with a 24 hour guard, when I asked about the guard the nurse told me the patient was autistic. I wonder if they had known about my husband's diagnosis would he have had a twenty-four hour a day guard as well? The classification of mental illness in my province requires such provisions in hospitals and other care facilities for the protection of the staff.

I don't require any one else to validate my research or condition. In fact, I'd be extremely surprised if they could, as in public it's so well hidden.

 

[Anarkitty]

In the province I live in, autism is described by the medical community as a 'mental illness', still. When my husband was ill and in hospital, there was a man in the next room with a 24 hour guard, when I asked about the guard the nurse told me the patient was autistic. I wonder if they had known about my husband's diagnosis would he have had a twenty-four hour a day guard as well? The classification of mental illness in my province requires such provisions in hospitals and other care facilities for the protection of the staff.

I'm sure it's still considered a mental illness here, too, what with the DSM being all about mental disorders. I guess that is actually part of my issue--that the medical professionals are all about considering the pathology of autism while autistic people are arguing that we just think differently. I mean, we have the absurdity of doctors explaining that truthfulness is one of our deficits! It's considered a virtue in major world religions as well as a number of secular philosophies, but as soon as people are born doing it naturally, they say, "Oh, those poor people!"

Re: the nurse's explanation of the guard being there, I certainly hope that she simply misunderstood the situation--that he was autistic AND dangerous to himself or others in some way. That would still be a misunderstanding with scary implications, though.

I hope that we'll see improvements in years to come in how autism is understood, and I think (hope) that recognizing Asperger's, PDD-NOS, and autism all as mental conditions on the same spectrum will pave the way for more nuanced conversations so that people can begin to mentally separate the autism from any other conditions that we might have.

 

[bbc-bananasplit]

I agree with you on that point that a careful self diagnosis on a basis of profound knowledge and self observation is fine. In any case it is always helpful to consider any alternatives.

As for "mental" illnesses: I think, on the contrary, that it is perfectly in order to diagnose yourself with schizophrenia, since when you having hallucinations the case is quite clear. Also, any personality disorder can be self diagnosed, if there is enough background knowledge. Self diagnosing is always difficult, because we tend to distort our own self in front of ourselves. As there is a positive view of ASD and ADHD as your individual style of being, your natural configuration, so there exist similar positive "non-disorder" approaches to conditions like schizophrenia, bipolar disorder or personality disorders.

A mental illness is a condition of a damaged brain, either physically or in its chemistry, which - in the end - is more or less the same. Schizophrenia is also a physical damage of the brain or a abnomaly in brain development usually from birth onwards, which may be (often is) genetically caused - therefore it is by its type no different from ASD or ADHD. Borderline PD is also associated with deficiancies in certrain brain areas, like amygdala and prefrontal cortex (which are also impaired in ASD and ADHD). Both ASD and ADHD are psychiatric diagnoses - psychiatry is the combination of psychology and neurology, since both cannot be clearly distinguished from one another. Any other mental disorder is always a matter of neurology and psychology. In any condition of the mind, the brain, the psyche or the personality, it is then a disorder when it causes problems for the person itsself or other people, and / or if it causes impairments in otherwise normal functioning. Clearly, ASD and ADHD are disorders in many cases, as they inhibit and impair the quality of life severely. This does not mean that these conditions must be seen as illnesses. Many people diagnosed with schizophrenia or a PD handle this in similar ways as many with ASD do: They see it as their natural state of being. Therefore, mental illness or not mental illness is a question of the specific case. ASD can in severe cases diminish intelligence in such a way, that the individual is considered disabled - then, clearly, it is either a mental illness or a natural variation of the human being, accompanied by severe disabilties. It depends on your point of view, but I would not state that ASD is not mental illness, while other conditions of the mind are - many would disagree. Schizophrenics do not fancy being called mentally ill or crazy, for example. They rather would express, that their minds are special in are special way.

I wrote this, because I wanted to express and demonstrate, that any illness can be restyled as a natural condition, that just makes you who you are. I think it is question of respect to all who have some condition that affects the brain, the mind, the personality...

 

[Anarkitty]

As for "mental" illnesses: I think, on the contrary, that it is perfectly in order to diagnose yourself with schizophrenia, since when you having hallucinations the case is quite clear. Also, any personality disorder can be self diagnosed, if there is enough background knowledge. Self diagnosing is always difficult, because we tend to distort our own self in front of ourselves. As there is a positive view of ASD and ADHD as your individual style of being, your natural configuration, so there exist similar positive "non-disorder" approaches to conditions like schizophrenia, bipolar disorder or personality disorders.

I concede your point. Thank you for bringing that up. As someone who does not know much about schizophrenia, I recognize that my understanding of the condition, and how people with schizophrenia view their own minds, is flawed. I accept that it is the knowledge and understanding of the condition itself, and the ability of an individual mind to grok the information, that's important.

I do wonder, though, if it's fair to say that "ASD can... diminish intelligence." It can also seemingly enhance intelligence. I've read that people on the spectrum are more likely to be at the extreme ends of intelligence--either higher or lower than normal IQ. So does the autism cause the changes in the intellect, or does it just appear most often at the extreme ends of intelligence? I suppose that it may also be the case that people at the extreme ends of intelligence are simply most likely to be diagnosed with autism and that autism actually appears across the intellectual spectrum at rates similar to NTs.

 

[Anarkitty]

I do not comprehend self-diagnosis.

It's just deceitful really, isn't it.

How is it deceitful?

 

[Fridgemagnetman]

I'm sure a few are thankful for that.

I do not comprehend self-diagnosis.

It's just deceitful really, isn't it.

How is it deceitful?

 

[Hollow Horse]

Not even a question is it?

So you declare that you have something when there is no professional evidence.

How is that NOT deceitful?

 

[Jojo_LB]

I think it's a good thing to talk about this every now and again, because many of us struggle with diagnosis.

I was officially diagnosed with ADHD, and I knew for a long time I had ADHD even before all those evaluations and visits with the neuropsychologist. The reason I went was so that I could get the meds! I also was getting super frustrated with life because I was taking anti-depressants and anti-anxiety meds, but I hadn't been depressed for a long time. I was certain I did not fit the criteria for bipolar disorder type 2, even though a lot of my symptoms look like symptoms of BP2. I just wanted the madness in my life to stop, and I knew that there was something else going on that I hadn't yet explored.

I had been seeing therapists for years before seeing someone about getting diagnosed with ADHD but none of them felt comfortable about prescribing stimulants. One of them felt safe to prescribe me the lowest dose of methylphenidate (5 mg tablets). And then there were those whom I was sure would've readily and quickly prescribed me the stims, but I avoided them because I didn't want to risk going to shady overprescribers.

I am very relieved that I got the official diagnosis, because now I'm on medication that truly turned things around for me. I've never felt calmer and more balanced in my entire life. I even feel like time has gotten slower! Before the meds, I felt this sense of urgency for everything, kind of like the white rabbit in Alice in Wonderland. I'd always feel like there was too much to do but never enough time. My mind made this huge shift, and now I'm like, "Things will get done when I do them. No rush."

I know myself so damn well, that I feel confident diagnosing myself with autism. I've been on my meds for two months now, and I am pretty much the same as I always was, except for a few key things: My mind is quieter, I feel calmer, my anxiety levels have gone way down, my sleep habits improved a lot, I fidget less, my moods are a lot more stable. And I can do boring tasks now without giving up within minutes out of extreme boredom and being distracted by much more interesting things around me (My head goes "Squirrel!!" every 15 minutes lol)

The meds did not change the fact I still struggle socially as much as I always did. They didn't make me extroverted and emotionally connected with people all of a sudden. The meds did not change the fact I still get obsessed with things, my unusual rigidity for certain routines and habits, repetitive things I do (largely mental repetitive things, but I do outward repetitive things too, as discretely as I can), my sensitivity to stimuli. I still stim when out And even though my moods are more even now, under the right conditions I can still get melt downs and burn out.

I will only get officially diagnosed if I really have to, but honestly it'll just be someone telling me what I already know. Just like the neurologist and psychiatric NP told me I had ADHD and I already knew that.

 

[Anarkitty]

Not even a question is it?

So you declare that you have something when there is no professional evidence.

How is that NOT deceitful?

I covered that pretty well in my original post. And for the record, the professionals would only have the evidence that I gave them.

It's not deceitful because I'm not lying.

It's not deceitful because I've done my research and done everything I can to understand the condition and the criteria for diagnosis, and I've evaluated my own thinking and behavior, throughout my lifetime, according to this information.

It's not deceitful because I do not recognize the authority of professionals to claim that only they can possibly know enough to decide when someone is autistic.

It's not deceitful because I've never claimed to have a formal diagnosis from a professional; I've literally stated that I'm "self-diagnosed," which is an objectively true statement.

Regardless of whether or not you agree with either the ability of a person to be self-diagnosed, or with my own personal self-diagnosis, self-diagnosis is not deceitful.

 

[bbc-bananasplit]

Well, calling it deceitful may be a little harsh. Sure, there's always doubt without professional diagnosis, but even professionals often miss-diagnose conditions of the mind, since the share such an overlap of symptoms. Schizophrenia for example may appear without hallucinations, but with severe emotional instability, impaired cognition and autistic-like traits.

I guess, with Autism it depends on your personal view of it. Of course people wrongfully labeling themselves autistic somewhat inflate (or deflate) the value of the diagnosis, and this may be a point of disagreement for those, who are actually professionally diagnosed and who feel impaired by it. Therefore, it is called a pervasive developmental disorder, since it really affects the overall development and functioning in many challenging ways, from earliest childhood onwards. I guess it is to those, who are more challenged and impaired by it, subjectively insulting, if someone with little complications but an autistic personality uses the same label. After all, we all like to find ourselves a neat little box, and autism is certainly much more "positive" - lately that is - than a compulsive disorder or emotional instable disorder or anxiety disorder on its own. The reason for this is, that many other conditions are seen or felt as personal weaknesses - not being able to produce a "normal" and "healthy" personality, and this is accompanied by shame, guilt, and social anxiety. All this while autism is wonderfully "neurologic" and therefore clean of the stigmatized personality issues and other mental disorders and illnesses. Since it is a spectrum it apparently may include any kind of symptom, and that makes it fit for many other conditions, that may seem autistic, but have other causes. Autism is in quite a few cases a severe disability - children banging their heads agains walls and self mutilating. Really autistic people, who deserve the label, are - in my oppinion - usually impaired quite a bit in one or more areas.

The "light autism" with some social awkwardness, some hygiene problems or anxiety is less a disorder than a set of autstic personality traits. That's why nowadays we are at 1 in 60 or 1 in 100. It used to be 1 in 1000 or 1 in 10000.

Personality always depends on how the brain is developed. All your abilities are based on your brains development and there is a variety of brains. There are many other influences - also purely emotional by experiences - that may greatly influence the overall personality. Simply because someone keeps to himself and has a special interest does not imply autism at all. What is more, very intelligent people tend to be socially less able, but not all - without autism. For some autism is a big problem in their lives, for others its simply an identity label. I for one have two friends with an IQ above 130, and some others with best grades, but none autistic. Many famous people were very intelligent and talented, but not autistic - in fact the greatest majority. As for all the scientists: I studied at a so called "technical" university (means engineering and sciences) and a lot of these students are male, geeky, nerdy, socially awkward, dress strangely and desperate for women (all the same not so very attractive) and also not autistic.

I think, it is the character of the label autism, that attracts many people - other conditions are less popular, indeed. Also its the "them" (the "NTs", which they don't like to be called) and "us". I don't really like this black/white sepparation, since there is incredible variation in so called NTs. Nobody would freely diagnose himself as Borderline just to feel better. It also helps because people need something - a cause - to explain their problems. They'd rather blame it on autism than on themselves. Saying your autistic somewhat - in some eyes - spares you from trying to improve.

On the other hand, why should I not be allowed to find a label for myself, if it deems me right and if it makes me more comfortable about myself. Its a difficult question, sure. I only offer a bit of this, a bit of that.

Other alternatives to mild autism are avoidant PD, compulsive PD, schizoid and schizotypal PD, pre-signs of schizophrenia, trauma-induced under-development, dissociated traumas, anxiety disorder, little warmth in upbringing, and and and.. Also, which is important, there has been found a large overlap between ASD and PDs. It is not uncommon to have ASD and a PD at the same time.

In old times there wasn't any autism. People where simply labelled differently, if at all. Then, certain diagnoses in psychiatry tend to be in fashion at certain times, like ADHD was in the 90s in Germany and is now in the US

 

[Anarkitty]

You call it what you want because you are only deceiving yourself. In the meantime, we're off to bed.

It's funny how you think an autism diagnosis requires a professional to evaluate a person, and yet you think you can tell me that I'm deceiving myself without knowing me at all. Many people start off self-diagnosed only to get formally diagnosed later on--they weren't deceiving themselves. But perhaps they didn't actually become autistic until a professional recognized them as such.

In the title of this thread, I made it as clear as I could possibly make it what the thread was about. I do not understand why anyone would feel the need to simply pop in to tell me that I'm deceiving myself. There's literally no point in it--you're not even attempting to make a cogent argument, just a quick personal attack before bedtime.

 

[Hollow Horse]

Yes, firstly I deleted my last post and had thought about it more because it disturbed me a little and you really can't sleep feeling uncomfortable or not putting something right.

As @bbc-bananasplit just highlighted, my saying deceitful was harsh. Dishonest might have been a finer term but that isn't what I returned to discuss.

I had thought about my diagnosis and how it might be for someone who for whatever reason cannot get a professional decision but they know that all the signs are there, their family know, so that is truthful.

So I wanted to come back and apologize to @Anarkitty as I don't wish to show disrespect or disregard to them or to anyone else here in the similar situation.

People will also understand that in our conditions we are quite insular a lot of the time. It takes time to look outside ourselves and understand and to metaphorically anyway put ourselves in another's shoes.

I hope that by coming back and extending an apology will help and the discussion can resume in peace.

Goodnight all.

 

[Hollow Horse]

IThere's literally no point in it--you're not even attempting to make a cogent argument, just a quick personal attack before bedtime.

Your tone is quite aggressive. But I'm not attacking anyone - see my new entry. I even deleted my previous post.

 

[Anarkitty]

I guess it is to those, who are more challenged and impaired by it, subjectively insulting, if someone with little complications but an autistic personality uses the same label.

There's an underlying assumption here that someone who has not been professionally diagnosed has not been challenged or impaired by it, and that is incorrect. I was born in 1971. I sought help as a teen. The psychiatrist that I saw at that time recognized signs of autism in me in our short interview--I have always remembered the comments that he made about my "unusual way of phrasing" my thoughts as well as my bluntness. But autism was not on his radar for a 17 year old girl with no intellectual disability.

 

[BrokenBoy]

If ASD is simply another way that the brain can be wired--if we are simply different, not less--then what need is there to be evaluated by a medical professional?

Because an outsider's point of view, especially that from an professional can rationalize your speculative thoughts. In this case, speculating that you have autism.

https://www.psychologytoday.com/us/blog/debunking-myths-the-mind/201005/the-dangers-self-diagnosis

Then there is the fact that we can know and see ourselves, but sometimes, we need a mirror to see ourselves more clearly. The doctor is that mirror. By self-diagnosing, you may be missing something that you cannot see. For example, you may be overwhelmed by anxiety and think that you have an anxiety disorder. The anxiety disorder may be covering up a major depressive disorder. Approximately 2/3 of people who present to outpatient clinics with anxiety have depression as well. In general, when two or more syndromes occur in the same person, we call this comorbidity. When people self-diagnose, they often miss the comorbidity that exists.

Autism happens to share alot of symptoms with other mental illness, such as child onset schizophrenia, social communication disorder, and schizoid/schizotypal personality disorder.

Personally, I think that people who self diagnose themselves with mental illnesses do have one. But not the one they think it is. I have also noticed that autism often a very common target for self diagnosers so what they think is autism is actually just a different mental health issue than what they think it is. For example I once knew a guy who thought he had Aspergers syndrome(This was literally just 8 days before the DSM-5 came out.) and he ended getting diagnosed with schizotypal instead.

That's the one major problem I have with your arguments. Otherwise I think you still had some valid points though I still ultimately believe that autism shouldn't be self diagnosed.

 

[Jojo_LB]

Wow, thank goodness for that apology just in time, because I was about to hit "post reply" and, well..... My meds have been wearing off now for the past two hours, so there definitely would have been an obvious "sharpness" to my response (anyone who's read my posts about how much Vyvanse aka "miracle drug" has helped me be a much kinder person would probably not want to see that ). It wasn't going to be anything terrible though, I promise.

But anyway, good on you for realizing the error of your ways and trying to see things in others' perspectives, Hollow Horse.

 

[Hollow Horse]

Personally, I think that people who self diagnose themselves with mental illnesses do have one. But not the they think it is. I have also noticed that autism often a very common target for self diagnosers so what they think is autism is actually just a different mental health issue than what they think it is.

That's the one major problem I have with your arguments. Otherwise I think you still had some valid points though I still ultimately believe that autism shouldn't be self diagnosed.

Very well put. Better than my approach.

Some people may know the Wrong Planet forum. I found on there many Aspie aspirants. Some were even saying they wished they had autism. I was like, really? I live with this and you want to wear some kind of a badge?

That's more of the dishonesty issue with me or deceit as I originally termed it though I now see that neither fit really and in no way was I intending to attack anyone and I have redressed that.

Autism does seem to be a common target for self-diagnosers. I just don't understand why someone would want the badge personally.

Wasn't it Hans Asperger who said that there is likely a piece of autism in everyone?

So while I believe a formal diagnosis is important and helpful, I concede that many people are undiagnosed for whatever reason and that we live our lives day in day out... does it matter that much if someone is undiagnosed? Notice I'm not including self-diagnosed - I'm not so sure still why people want to put online test results in their signatures like it's their O level results or something!

 

[Hollow Horse]

Wow, thank goodness for that apology just in time, because I was about to hit "post reply" and, well..... My meds have been wearing off now for the past two hours, so there definitely would have been an obvious "sharpness" to my response (anyone who's read my posts about how much Vyvanse aka "miracle drug" has helped me be a much kinder person would probably not want to see that ). It wasn't going to be anything terrible though, I promise.

But anyway, good on you for realizing the error of your ways and trying to see things in others' perspectives, Hollow Horse.

Well the error was certainly using the terms 'deceit' and 'dishonest' and I would be dishonest if I deleted my original post - I haven't.

It was important to assure one person that I wasn't attacking them - the discussion regarding self-diagnosis can and will go on - some are comfortable with it and some are not.