A question for the self diagnosed

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For whatever reason, whether not wanting or needing a professional diagnosis, or not having access to such services, you are self diagnosed.. and my question to you is this: How do you Know you’re on the spectrum if a trained & licenced Psychiatrist hasn’t told you so?

Last edited by goldfish21 on 29 Jul 2018, 12:21 pm, edited 1 time in total.

Because I have all the symptoms.

The benefits of seeking a diagnosis would be knowing for sure whether I'm on the spectrum, and the ability to seek accommodations. The costs of receiving a diagnosis (aside from $$$) would be having to check that little box on all kinds of forms for employment, education, housing, etc. that sets me apart neurologically. Sometimes those little boxes come with benefits, but in my experience those little boxes also come with restrictions, stigma, exploitation, exception, and disempowerment.

As a 90s kid, I got slapped with the diagnosis of ADD, ADHD, learning disabilities, etc. That (mis)diagnosis made my life a living hell. I was made to take medication that didn't agree with me. I was put in special classes, even though I have above average intelligence. To me, all that diagnosis offered to me was pain. ADHD comes with far less social stigma than autism and even those little check boxes were enough to make my life hard. Because I'm not seeking special accommodations, I will therefore never seek a formal autism diagnosis.

You're right, I don't know that I'm on the spectrum for sure. That's the trade-off. I don't really care about that though. By reading information aimed at helping people on the spectrum with executive functioning skills, I have figured out how to function well on my own, in ways I never previously thought possible. Thanks to identifying the similarity in my struggles with people on the spectrum I have found that information, and I've improved my quality of life. I feel solidarity with the autistic community, because they have given me a lot, and because it's clear that we have struggles in common. However, I have neither the money, nor the possible benefits to motivate me to seek a formal diagnosis.

I can't speak for others who are non-diagnosed, but this is my personal view on the matter.

I echo the above two respondents completely. Since I would neither seek nor gain any kind of medical or financial assistance, other than giving me an "I KNEW IT!" confirmation and perhaps only a tad more understanding from my already understanding wife, I don't see huge benefits for me.

Also, I match so very very many characteristics to a "T" of being Aspie and have my entire life, I'm not aware of other conditions that may so closely mirror ASD but be something completely different and be NT. "Oh, you don't have ASD, you've got an inner ear problem." Or some such thing.

I also share caution and therefore reticence in seeking confirmation that would "go in my chart". I honestly don't trust NTs in general nor a society run by NTs.......

I may change my mind on this at some point though.

As am sure others will say, I can't be sure. The key thing for me is I was at an age when it wasn't commonly diagnosed in schools. I believe it would have been very beneifical then as the support would have helped, but by the time I had any understanding about it I was around 30. Having by then managed too get through school, get a job and live on my own I can't see any benefit from having a diagnoses. Since figuring things out I have been able to improve my life but that is just through understanding the issues and working on my weakness which I just have to do myself.

This is very much my experience. I only learned about this stuff in my early thirties, and had already been working and living on my own (or with girlfriends) for about a decade. Like someone else said, I fit the symptoms. I'd like a diagnosis, but the therapist I saw before wasn't very good. I'm not sure I want or need to go therapist shopping and spend what money I'd have to on a diagnosis, plus I've always had to be a parent to my parents, so they're not exactly interested in helping with any background information or anything that might make my life easier/more fulfilling.

Considering how even well-meaning therapists can be misguided by preconceptions, I'm not sure their confirmation is as rock solid as many here want to believe. It is interesting that there was a thread here asking if God was an NT concept, but not one asking if therapy, psychology, or the DSM were NT concepts. My former therapist thought the fact that I read fiction meant I was confused and probably just had social anxiety, not Asperger's. He was less interested in my talk about masking, my dislike of eye contact, taking things literally, difficulty with physical touch, and decades of physical pains from the stress of sensory overstimulation. I'll trust my body, research, and experience over someone like that. A visit to a specialist is still a conversation between two (imperfect) people. I've also heard coworkers, who are former clinicians, say that a diagnosis focuses on how disordered you are and how disabled your symptoms make you. So some people will see someone who can support themselves and feel a diagnosis is inappropriate. That doesn't mean I, or others, don't struggle in other areas. I suppose a diagnosis might make me more comfortable telling other people, "I have this," but I don't need that when talking to myself.

To the OP--your question is valid and I think it's cool that you asked people. I would ask back, what makes the diagnosis so definitive for people when defining who they are? Before the word "autism" there were people with autism, many of whom found ways to cope and survive, and would no doubt do so without a label today.

This topic has been answered in many previous threads. I don't think there are any new answers that will be any different at this stage. See links showing below this thread. These threads can become very inflammatory and sometimes vicious, causing a lot of work for moderators, and if this one also does, it will be locked speedily.

Many self-diagnosers have arrived at their conclusions through assiduous research.

I already knew my answer(s) to my question. I asked so that others would share theirs & enlighten the “professional diagnosis is the ONLY way to know,” crowd that it is entirely possible for anyone of reasonable intelligence to read text books, the DSM, aspie autobiographies, and take ASD assessment tests and Know for themselves that their lifetime’s experiences match the diagnostic criteria for Asperger’s Syndrome. And y’all have Not failed to deliver. Thank you & much bless.

As for your question to me, *shrug*, I dunno. You’d have to ask someone that applies to for their response. My best guess is that they are unsure of themselves, whereas for myself, throughout my life, approx ~95%+ of the time I’ve seen a doctor regarding any ailment I already know the diagnosis, treatment, and prognosis & am simply their for their official signature on a prescription pad much like a natural engineer designing something and then having it signed for on by someone with an iron ring to make it legal & official kind of thing. Some people must not be that self aware or be able to research medical information I guess.

No one can know without a diagnosis. They can only suspect or come to a forgone conclusion.

For many that's good enough. They know something was wrong with them, it was bothering them not knowing what, and then they came to the conclusion that ASD seemed a likely culprit and that put their mind at rest.

However, if they want or need to take things a step further than just personal conviction and reassurance, then they need to get an official diagnosis.

One thing I've noticed is that some who are positive they have it, seem afraid of failing an official diagnosis. They strongly resist they idea of getting one and become highly agitated when it's suggested.

I don't know for sure, I want to get a diagnosis but I can't for now (I'm probably going to be able next year. I'm really looking forward to that). Nonetheless, I'm sure I have something... I had difficult with things that seem normal to other people, and I remember getting many recommendations from school to see a psychologist – which my parents ignored because they never wanted to assume that could have something "wrong" with me.

I start my suspicion on autism after taking that online "aspie quiz". Someone shared it on a forum I used to take part, as some curiosity thing, I haven't never thought about autism or anything... and I got a huge score. I start researching and identifying myself in many stuff, it explained me some of my behaviors. I still didn't got very sure on then, but a few years ago I made a friend who is autistic and he brought up the possibility to me, then I researched again and got on this forum. Sometimes, I feel I shouldn't be here but I like the people and I feel comfortable and understood.

Except for all the people in this thread, and elsewhere, who Know despite not having official diagnoses - so, there’s us & them.

If you’re referring to me with that last bit, and I know you are, I call shenanigans on your bs. I offered to knock on the door of every ASD resource in town, get myself an official diagnosis, spend up to 2 years and $10,000.00 on lab tests and so on for all the evidence you could possibly want (and I invited you and your parents to my home for a meet & greet and a decent meal so you can assess me for yourselves) - but - you declined all of the above because you don’t want proof that what I share here is true, you simply want to argue with me that it is not.

^Somebody is bitter, same old goldfish21 as he ever was. Wonderful to see the same crap over and over. I ignored this place for nearly 3 years; dates change, people don't.

To answer the question from the beginning, I take the view that self diagnosis leads to actual diagnosis. Just the same as someone who has a prolonged sore throat goes to the doctor to see if it is strep, instead of bribing the pharmacist for medication because "they know for sure".

I personally was diagnosed at age 8, not that it made any difference in what kind of treatments/therapies/school intervention I got, it just meant that I got some, people around here are clueless about autism from my father who won't research, to my mother who paraded me to doctors w/o reading enough about it to find someone qualified, and school social workers who are paid to know about it but sadly don't.

How do I know if I am an Aspie without an official diagnosis? The short answer is "if it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck". The long answer is here. The Aspie Code

Not strictly on topic:
I was diagnosed by a clinician with over 30 years experience in autism including autistic adults. Based on her diagnosis, knowledge of myself and autism I am sure enough I am autistic to call myself that and constantly be on this forum. But I can not honestly say I KNOW I am autistic because the diagnosis was based on her knowledge and observations, my sister and my observations about my behaviors not on any type of physical test. Even if three is one day a great physical, imaging or genetic test you still cannot be 100 percent sure because tests can be misread.

There are truth and facts. There is NEVER 100 percent certainty you or anybody can know what it is. All one can do is try our best to get to that truth, and make decisions based on this knowing that sometimes we will be wrong because despite what we thought, we didn't know jack s**t.

I'm sure it would be very frustrating.

I know it frustrates me when I go to the doctor with an ailment, and they tell me they don't know what's wrong with me, or suggest that it might be something else...I'm sure they all think I'm a hypochondriac.