Why I Feel That Self-Diagnosis Is Valid With ASD

[Jojo_LB]

I like that duck analogy. Never used it myself. But it's cute. And I think it actually applies for some of us in here.

At some point in my life I started to think I was going, as Kyou Nukui said above, "batpoop crazy".

I got a clean bill of health from every doctor I saw. My hormone levels have always been fine. I've had no head injuries. I've been seeing therapists, taking meds (SSRI's, benzos, mood stabilizers, over-the-counter remedies), and trying every single thing under the sun to improve my life since 2001. Wasn't always consistent with therapy, but I have been for more than two years now, which is fantastic and I feel so lucky that I actually have good health insurance now. I tried to change my environment. I tried to change jobs. I tried meditation. Before stims, I tried to change my sleeping habits (quite unsuccessful).

That's almost 19 years of actively trying and failing.

How did I suspect (a) neurological development condition(s)? Talking to my therapist, digging so deep into all my lifelong issues that ate away at me. A bunch of light bulbs went off during the course of therapy.

I strongly suspected ADHD and/or ASD, but I ultimately rejected ASD. I internalized all the negative crap everyone heard about autism. I believed all of it. Autism had crept into my mind years ago actually, but I kept pushing it away. I was determined to get diagnosed for what I knew I had, which was ADHD. But don't anyone dare tell me I am autistic!

I re-read all my journals. I kept journals since I was 7! I started getting obsessed with writing when I was 6. Those journals were very telling.

My ASD traits were more severe when I was younger. Panic attacks from being near very loud and large things. Speech issues (stutter and lisp for certain, don't know if I had any delays though), extreme dislike of being touched and looking at people. Visible echolalia. Outbursts that no one could understand. Extremely hyper. Loved to play by myself. Had difficulty playing with others because if I could not control the play, then it was very upsetting. Unusual attachment to lots of objects. I once had a MAJOR melt down when I lost my teddy bear at a store. I had to be physically restrained while strangers looked on in horror.

The scary neighbor a few suspected was a sex offender focused on me for a while. He was always trying to lure me over to his house with candy, and other "fun" stuff he claimed was inside his house. Why only me? The neighborhood was full of children. None of the other children, nor many of the adults had any problems with seemingly "harmless" yet somewhat strange Ernie (yes, that was his name. I still find it funny.). I suppose I was the most vulnerable of them all. My older sister, older cousins and parents noticed his gross, creepy attachment to me and were very protective and made sure I was never around him alone.

I'm a scientist by nature and therefore am very objective by nature. I am also a trained scientist. I am still training, because lifelong learning is a serious thing for me and I will never not be consumed by learning stuff.

Does being a scientist mean I can't ever make the mistake of being subjective in my self-assessment? Nope. And I admit I've made those kinds of mistakes before, but they are very few and far between.

I trust my excellent reasoning and evidence collecting and analytical skills enough to declare that I sure as hell am a duck.

But if for some reason, an official diagnosis by a trained professional who would not know even half of the things I know about myself and my history (what I just posted - tip of the ice burg) is required of me, then sure, I'll get one.

A lot of people here who are self-diagnosed, I trust they know themselves and they've dug deep for a long time, trying to find some answers too. Now, a lot of them may not be scientists who, by nature and/or training, automatically see things objectively. but I don't think that necessarily discounts their self-assessments. Besides, I don't see anyone here who claims to be autistic after doing just one or two online assessments, reading a couple of articles, and 30 minutes of introspection. That just doesn't happen, especially with those who strongly suspect they have ADHD/ASD etc.

 

[Tom]

Even after getting a nod on my own assessment, I still question it to this day.

I still fly my self-assessed flag, because it was me that brought it to the attention of the braniacs that were working on another issue.

After doing some research (when learning about diagnosed family members) I came to the conclusion, after comparing the data, it was the most likely explanation as well for me. Twenty five some years later, and after much more analysis and exposure to others on the spectrum (and off-the-record discussions with some professionals), it still seems the most likely. That's the most I can realistically say: I think it most the likely explanation for the differences I have from most people.

 

[AuBurney Tuckerson]

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?

I felt the same way. That's why I got formally diagnosed. It also helped my depressions because I had doubt's. I figured that maybe I didn't have autism and that I was just a mental defect, but I was relieved to have gotten diagnosed. Some people are perfectly secure with self diagnosis; I was not. By the way, it wasn't a medical professional who diagnosed me; it was a psychiatrist. Since autism is a mental thing, that's where I got diagnosed.

 

[Fino]

My ex, psychiatrist, was a self diagnosed BPD, he never had it officially dx. He said meds aren't good and he refuses to take them. l read about BP, he fit one of the classifications, the 3rd classification of the DMS. But number 3 is a bit of a gray area l noticed, still l could see he fit a lot of the filters listed. Meds are hit and miss, and he treats these people all the time. He said l had something, so its official, haha. l have been diagnosed, with what who knows? Anyways, the people that do the diagnosing often have issues themselves, thats why they entered the field. l sum up this banter by saying if you self-diagnose, who cares, because your MD maynot make a correct diagnosis based on their limited experience. So what is wrong with self-diagnosis? His expertise is that he can usually find meds that help stabilize a client quickly, however BP is actually one of the challenging mental disorders to treat, because of the horrible side effects of their meds, basically lithium.

Self-diagnosis helps us really examine ourself, means that we are open to the fact that we respond differently, and creates a acceptance of who we are and any limitations we may feel we have.

Everything here is so different from my world-view, so it was quite an adventure to read.

I've read that people with BPD utilize medication more than any other diagnosis. How does someone with BPD live a healthy, normal life without medication? And as a psychiatrist? This sounds bonkers to me!

Lithium is known to have horrible side-effects? I thought it was known for having some of the least. It makes me sleepy for 2-3 days then there aren't any side-effects. I guess I'm lucky. Lithium is a god-send.

For me, the 'Duck Test' is good enough.

"The duck test – "If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck" – suggests that something can be identified by its habitual characteristics." (Wiki)

But there will always be ducks and non-ducks that will not accept it. With those I generally use the 'Ignor Function'.

Quack quack! (I agree!)

 

[Jojo_LB]

I didn't even know there was a type 3 for BD. So I looked it up, and I see that it is also called "cyclothymia", which I have heard about.

I guess that's the "mildest" form of BD.

I know that BD type 1 most definitely requires meds. One of my oldest friends has BD type 1, and she used to take lithium, although I'm not sure if she still does.

I don't personally know anyone with BD type 2, although I was evaluated for that because a lot of my symptoms look like it. I needed multiple sessions for them to rule it out, because they wanted to make sure that my wild mood fluctuations, racing thoughts and impulsivity weren't hypomania. I was told that if they decided to try to treat me as if I had BD 2, then they'd have started me on lamictal (lamotrigine). So if they did diagnose me with BD 2, then I'd have required mood stabilizers for sure.

I think that I probably would do alright on mood stabilizers, but actually my stimulant works just fine for now. Not saying there is any shame in needing multiple meds, but I personally would prefer not to take a lot. It's just easier.

 

[Fino]

Lamictal never did anything for me and I tried it on two separate occasions.

I take five medications.

 

[Jojo_LB]

I used to take five lol I am now down to two daily. Yay! There are a couple others I take though, as needed.

 

[Clueless in Canada]

So far I am self-diagnosed and I can echo the stories of years of questioning, introspection, much research and some vague unofficial comments from professionals all as part of my story. I have a definite diagnosis of severe anxiety and also of Chronic Fatigue syndrome. At first I wasn't going to seek an official diagnosis as I didn't think it could be of any use but as time went by I began to think differently. I am not fully independent and rely on assistance from my parents who are elderly and my partner who is much older than I am and has health troubles of his own. My son is also likely on the spectrum and also has severe anxiety so in my old age I am not likely to rely on him and wouldn't want to burden him but I worry about needing supports of some sort ten or twenty years down the road. I would also like a diagnosis for the purpose of putting my life into perspective, for self-esteem ( oh so I'm not defective ) and for closure after years of an emotionally abusive marriage. I have seen a psychiatrist recently who basically increased my anxiety meds, decided I did not have any other mental health issue and vaguely promised to try to find someone ( psychologist ) who could do an ASD assessment for me. I found someone on my own and am now on a waiting list, expecting about a year's wait.

 

[Fino]

I used to take five lol I am now down to two daily. Yay! There are a couple others I take though, as needed.

Was there anything in your life that changed which prompted the reduction or did it just happen over time?

 

[Sab]

Yeah, I feel like your last paragraphs sums it up for me. We’re best at knowing and understanding how our bodies and minds work. We have our best interests at heart. And if a diagnosis sticks with us and helps us find tools to cope with our struggles, explore our skills and superpowers and live our best lives, that is really what matters and not other people’s (professional or not) opinion.

Often, other people’s opinions tend to make me feel less centered and less in touch with myself, my skills and my needs. I think that it’s important to learn to trust ourselves before trusting other people. Trusting other people is nice! But they can’t tell what our needs are.

I think self-diagnosis is valid in any case, for autism diagnosis as well as mental health diagnosis. If the experiences of other people with a specific diagnosis resonate with how you experience life, and if reading up about them helps with validation, feeling less isolated and motivates you to seek community and support (like on these forums), that for me is what counts.

 

[Aspychata]

Everything here is so different from my world-view, so it was quite an adventure to read.

I've read that people with BPD utilize medication more than any other diagnosis. How does someone with BPD live a healthy, normal life without medication? And as a psychiatrist? This sounds bonkers to me!

Lithium is known to have horrible side-effects? I thought it was known for having some of the least. It makes me sleepy for 2-3 days then there aren't any side-effects. I guess I'm lucky. Lithium is a god-send.



Quack quack! (I agree!)

The ex calls himself a high functioning BPD, l call us divorced, and that's the end of a man who had too much anger for me to deal with. He also had hoarding issues which is quite common for this dx. We couldn't have people over because the hoarding was out of hand.

 

[Nitro]

Like I have always said, with a label or not, the traits you have will always be there

 

[Jojo_LB]

Was there anything in your life that changed which prompted the reduction or did it just happen over time?

The NP that I am now seeing and I just felt like it was all overkill... especially since we realized just Vyvanse and one SSRI would be enough for most of my problems for now. Not that there were problems when I was taking more meds, but they weren't really adding anything either.

 

[Fino]

The NP that I am now seeing and I just felt like it was all overkill... especially since we realized just Vyvanse and one SSRI would be enough for most of my problems for now. Not that there were problems when I was taking more meds, but they weren't really adding anything either.

Ah, that might end up being similar to what I suspect will happen with me. We keep adding on a new one to deal with some problem from the old one or problem the old one didn't handle well enough and then by time you get to 5 some of the ones prescribed in the first place become redundant. I suspect one or two out of the five are doing little to nothing but don't want to remove while still dealing with the effects of a relatively new other one.

Thanks for the information and for having a lot in common with me!

Sorry for discussing something not relevant to the topic. I just realized it.

 

[Aspychata]

That's why my ex is held in high esteem, prescription technique, it is a skill, and only someone who sees thousands of patients, become very good at it. Despite not being board certified, he does quite well salary-wise. He sees the types of patients, where suicide is quite a common topic of discussion, our heroes that fought corporate wars.

 

[100skerls]

The reason why I want to get a diagnosis is because my family has a very hard time understanding me. But they also doubt there is anything actually “wrong” with me - that instead I have the option to just behave differently and choose not to.

They have finally accepted after six years since I was diagnosed for the second time that I truly have ADHD and that it has significant impacts on every aspect of my life. My mom used to be very hard on me growing up because I didn’t behave like my siblings and it was so hard and confusing. And it’s still really hard and confusing to not get the support my siblings get because they think I just don’t try hard enough in school.

So sadly a big reason I want the diagnosis is so my family can see that I am doing my best and I was always doing my best and I can make some changes with time but I’m not able to do it over night and I need help and support.

I also felt guilty for joining this forum (that I’m brand new to) since I am self-diagnosed. I also felt I didn’t want to trivialize people with a diagnosis. However it is true that I’ve been through a lot due to expectations I couldn’t meet.

It’s an odd place to be in - and a difficult conundrum with no clear or easy answer maybe. But I appreciate how people here are so understanding and willing to share the forum regardless of formal diagnosis’s.

I think being a human is hard and sometimes we get confused and probably a few people who weren’t autistic have come through here looking for some level of understanding about what they were going through. At the end of the day, maybe that’s not the worst thing anyway.

But maybe that’s not my place to say since I’m brand new and don’t have an official diagnosis. I hope I haven’t offended anyone.

 

[techteach]

@100skerls There are so many cool people here, this is a safe place. The moderators are awesome about keeping it civil and the people are so understanding.

And I agree so much with you. If a person is posting on this forum and learning about themselves then what does it matter?

What better way for a self-dxed (who cannot get dxed for one reason of the other) to realize they are not on the spectrum and continued their search for understanding of themselves?

People are being helped. A lot.

 

[Pats]

@Anarkitty I don't think there's a thing wrong with being self diagnosed with autism. I think one of the common traits we tend to share is our constantly trying to figure ourselves out, our introspection. Everyone here that's been diagnosed later in life has one thing in common - we realized that what we've read about autism explains all the questions we've had about ourselves our entire life. You know better than anyone what's going on inside you. You can go to a specialist for tests, but those tests don't cover much of what goes on inside. How can anyone or any test examine decide if you feel like you've lived inside a box and become frozen or paralyzed with stress? Funny thing - as I was sitting in the doctors office answering questions non related to autism, I'm getting hotter and hotter but unable to lift my arms enough to remove my jacket and become more and more miserable and it's interfering with my ability to concentrate. THAT tells me I'm autistic, but that's not what the specialists are looking for. He has me make up a story - what's that got to do with autism? I've spent 44 years being a mom and grandmother so I've gotten pretty good at making up stories which has absolutely nothing to do with anything except personal experience. But what's going on in my head has everything to do with autism and they're not asking me that. I was 100% convinced of being on the spectrum before my diagnosis - not a doubt in my mind. It was like all my life no one has ever been able to understand things I try to explain that I feel like and all of a sudden I'm reading about people who, not only understand it, but experience the same thing. Alas!!! Finally there was an explanation that made sense about who I was. The official diagnosis was merely to have evidence to back me up so my kids will take the possibility of themselves or possibly a child of theirs having autism more serious. So if they had those same issues I've always had, they can know up front the reason and that they are not alone in this world. Guess I'm trying to say that for me - my self diagnosis was more valuable than the official diagnosis. And how can it be deceiving if it's who you are?

 

[100skerls]

Techteach - yes, I think so too. I think I saw some other people talking on this post about how people might get a diagnosis to use as an excuse for their behavior so they don’t have to improve. I’ve heard stories about people that do that so I don’t doubt it.

But I’m sure there are also tons of others who want to understand where their struggles are stemming from. And once they know what they are dealing with they can then learn more about themselves through others and do reading and start to devise how they can better themselves with tools other people have used successfully.

I know that I have struggles that keep me from being able to really move forward in life and I get stuck. Maybe I don’t get stuck as easily as others but I get stuck more easily than most people. I’d love to work on myself and better understand my needs and how to communicate them effectively.

And yeah, if you can’t get a diagnosis the best alternative is to get as much data as you can comparing yourself to others with ASD and learning in as many ways you otherwise can.

I also understand though that some people just don’t want a diagnosis but they gain something from self-diagnosing. I think that’s fine. Honestly I really don’t like being evaluated by doctors not because I care what they think of me but because you have to be very vulnerable to a complete stranger and they have the option to validate you or invalidate you. Sometimes they are right and sometimes they are wrong. Either way it is terrifying.

I had a really negative experience with the doctor who tested me for adhd in high school. After the natural medication (that he openly admitted only worked 50% of the time) didn’t work and he was going to suggest another medication that wasn’t a stimulant, I asked if I could try adderall because it was what I read helped for a lot of people. He immediately accused me of having intentions to sell. I was 16 and my mom was sitting next to me the whole time. I got a different doctor who prescribed me what I needed. But it was still a terrible experience. There unfortunately are lots of doctors who have biases that prevent patients from getting the care they deserve.

 

[Jojo_LB]

@Pats your post reminded me of my neuropsych evaluation for ADHD. It was torture. Three hours of sitting in an office, doing various tests, answering a ton of questions. By the end of it, I was slumped so low in my seat I was about to fall on the floor.

I don't want to go through that again.