Self-diagnosis

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What do you think about self-diagnosis? were you ever self-diagnosed? As an autie without access to a professional diagnosis (money, family in denial, etc.) id like to hear what you guys think!

(in this context, self diagnosed means someone who has thoroughly researched and decided that they are autistic without seeking a diagnosis from a professional.)

I think self diagnoses is a slipper slope. Sure there are people out there who are weird and different and always had to watch others to figure out the rules and have always gotten obsessive and had troubles fitting in and being accepted, then they come across Asperger's and thinks it fits them so they will self diagnose. I think only a professional can do it and being different doesn't always mean an impairment. I think there is such thing as environmental impairment where you live somewhere where people are just ignorant and don't accept you but yet your differences doesn't affect your daily living. I have never been self diagnosed. It's unlikely I would have self diagnosed if I didn't have the diagnoses and I would have just thought I had symptoms because there is so much more to Asperger's than what I have experienced.

But however I think if you spent many hours researching autism and still came to a conclusion you are on the spectrum, then you most likely are.

Well, I suppose this primarily applies to adults.

My opinion it's bogus until you get professional diagnosis. If you're going to make changes to your life, you might as well be sure that you have it right. Otherwise you're just misdirecting yourself based on wrong conclusion and assumption.

I was not 100% self diagnosed. I was first told by someone who knew what he was looking at. But for technical reasons, I was technically self diagnosed for a couple of years before I got my diagnosis. People who seriously self diagnose tend to be very thorough about it and many spend years researching everything they can. They also don't usually do it in isolation. They tend to get a lot of opinions and information from people who know them well. And often times people resort to self diagnosing because they simply cannot afford an official diagnosis.

Self diagnosis can be fine if someone is just looking for answers to questions in their lives. And I am totally fine with it as long as they are honest about it and say, when it is appropriate, that they are self diagnosed or that they suspect they are on the Spectrum. Like I always told people, "I don't have an official diagnosis but I believe 99% that I am Autistic," and I was prepared to give them the evidence as to why I believed that. And in my case I was right. And in most cases, people who have devoted the time and energy to do the adequate research usually end up right.

Now if you just took the one little quiz on the internet and that is all you did and then called yourself Autistic, I would not appreciate that nor would I take you seriously. But because I understand that in some cases, it can be impossible for people to afford or get a diagnosis as an adult, or if it is just too expensive to be worth it to them, I remember the struggle I had trying to determine if the cost was worth it because of the lack of help and services for adults, I will not judge them harshly if they choose not to get one and go the self diagnosis route. But I would want and expect them to be honest about saying that they are self diagnosed and to even be open to possibly being wrong.

And remember that even officially diagnosed people have been misdiagnosed sometimes. Just because you have an official diagnosis does not always mean it's an accurate one.

I was until 103 days 22 hours and 32 minutes.

At the same time I confirmed other things.

Some can be way off as has been written as other issues can have similar presenting behaviors.

My counselor asked me do I want to change anything behaviorally. He wanted to not change me.

I chose a few things that were getting in my way in a few life areas.

me
level one

I am a self-diagnosed Aspie. For a long time, I have known I was different than everyone else, even fellow scientists. That lead me to search for a reason why I am this way. A formal diagnosis would do nothing more for me.

Aspie exam score: 136, NT score: 86
AQ score: 40, EQ: 14
RAADS-R: 143
L:12
SR:67
SM:33
CI:31

I'm currently going through the diagnosis process.

So, yes, currently self-diagnosed. And, for some time, I was adamant that self-diagnosis was enough.

I definitely think that there's some value in it. Self-diagnosis helped me to understand myself, which is ultimately one of the most important things that you can get from it. Using that knowledge I was able to help myself by learning coping techniques and tips from other people, accessing support in online communities and giving myself permission to act 'a bit more autistic' around the house. For example, explaining to my husband why some things are beyond what I can manage rather than just saying 'I can't' - it gave me the words to say why, and it also made me aware that my level of light sensitivity is not typical so I now wear sunglasses very regularly without feeling stupid for doing so, particularly in a darkened room, and that's helped me tremendously.

All of those changes required no formal diagnosis but have made a big difference, so I'm definitely an advocate of self-diagnosis as long as you've done detailed research and you're not just picking out a label and running with it. I was confident that I was doing well in life, so why waste anyone else's time?

But, at some point it may not be enough. I went from "I don't need an official diagnosis, this is enough for me" to feeling quite desperate for one. And the reason was that the longer I went on, the better I understood myself, the more I realised that the only reason I'm coping so well at the moment is because I'm in certain circumstances. Because, though I wasn't aware of my (potential) autism at the time, I had made some accommodations for myself already. And because I have my husband, who has taken me through the last 10 years from a struggling wreck to a relatively 'normal' person. When I thought back over how far I'd come, I realised that things would have been very different if I hadn't met him.

And at the point that you realise how easily things could change for you, I think you begin to consider your future. If anything happened to my husband, I do think I would have some very big issues to contend with. I've had him in my life since I first started living independently. If he leaves me or passes away before me, I'm potentially going to need a lot more support than I do. And I can't get that without being diagnosed and more open about it with others.

And that's another thing. Without a formal diagnosis I would not tell people that I was autistic. It's not my place to claim that. The diagnosis gives me 'permission', in my eyes, to be honest about it with friends and relatives, and to ask for accommodations when I need them.

Are your symptoms producing functional defecits?

If so, go see a doctor. Which you would anyway, as day-to-day life will be very difficult.

If you've found a list of symptoms you feel describe your personality yet you don't have the functional defecits, you're not autistic.

Autism isn't the symptoms, but problems created as a product of the symptoms.


What do I think of 'self-diagnosis'? I think it's the height of arrogance.

Many self-diagnosed loathe the medical community when it doesn't give them the diagnosis they desire.

Which could be seen as hypocritical, given they are seeking a label that only exists as a product of the medical community in the first instance.



'But I can safely self-diagnose a broken leg if my leg is broken'

The difference here is that your leg doesn't have a mind.

Therefore, you can view your leg objectively.

However - we as individuals still couldn't say what specific kind of break we have.

Ask anyone who has ever been involved in an SOS situation - misusing medical terms is very dangerous. Notwithstanding, it makes you look very stupid as an individual, in trying to use terms you don't fully understand.



A mind is, by definition, incapable of objectivity.



Autism has been hijacked by activists. Many autistics feel very strongly against what is currently happening in the world of autism. Many autistics are ashamed to be seen as part of the 'autism community'.

I include myself in this category. I'm more ashamed to tell people I'm autistic not due to autism, but due to self-diagnosed autistic activists. They are doing great damage. The sooner the autistic world sees this, the better things will likely be for us.

But such opinions are often crushed under the weight of those with an agenda aside from getting help from their doctor with the difficulties they are having.


Personally, I fear autism is the latest 'fashionable fad'. When the activists move on to the next platform they see as a way of gaining more rights for whatever their cause is, we'll be left behind with the mess they've created.



In my opinion, the 'self-diagnosed' should be dismissed as a joke and an insult to the community at large.


I care not if this entire site is against me in my dismissal of 'self-diagnosis'. I speak as an autistic person concerned with the representation of autism/those on the spectrum.

I'm also reluctant to discuss the fact that I might be autistic, or want to be part of a community, due to attitudes like yours.

We've had this discussion already LOL.

It's never that funny though.

Nope....my laughter was an ironical sort of laughter.

I don't believe somebody undiagnosed should claim, in court, that they are autistic.

But barriers (e.g. money and time-consuming bureaucracy) should be removed so official diagnoses could be more easily obtained.

I know Kraftie, about the LOL.

I'd still prefer to judge each person by their own words and actions, whether official, self-proclaimed or indifferent.
After all, if you have met one person, then you've met one person.

This is an invalid point.

Most discussions on this site have 'already been had'.

How many threads have you read on (for example) 'sensitivity to light'?

kraftie I note you don't write on those threads 'we've already had this discussion'.


Therefore what is your motive?



Someone asked for opinions on self-diagnosis. I gave my opinion. And I'm very entitled to do so - as is everyone.



If you don't like it, read another thread.

While I'd hate to put forward the intentions of others. I would say Kraftie was trying to highlight that this is a controversial subject that usually ends in heated arguments, whereas, discussions about sensory sensitivity can produce some more useful outcomes.

I like to describe "self diagnosed" better as "self identified." Free individuals may do as they please. So, as such, they may claim that they are autists even if they are mistaken or intentionally faking. The claim that self-identified autists shouldn't be self identified because it disturbs those who are professionally diagnosed is insulting and unfounded. I also believe that those who are genuinely aware of their autistic characteristics, but, haven't the desire or resources to accomplish a diagnostic assessment may do whatever they consider necessary to confirm their autism for themselves including completing self-reported screening tests, and researching the diagnostic criteria for autism and its behaviors, characteristics and comorbids ... or not. It is completely up to them whether they maintain a self-identification or pursue a professional diagnosis in the future. There is, of course, a self-governing phenomenon about self-identifying as autistic, which is, that those who aren't truly autistic, but, instead, mistaken or faking it, soon lose interest in keeping up the charade. So, there is no material harm done to those who are professionally diagnosed, and there never was.