What did diagnosis bring you?

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Hi community. I am new here. I am reaching out for help.

I am french, 30, female, and want to know what you think about your own story.

A very short version of my story : i was always the odd one. Very specific interests that lasted until today (became an ornithologist). Always adapted to what was expected from me. Seen many psycho as a youth but don’t remember why. (Mom wouldnt tell). 2 years ago, mom died in HORRIBLE cancer. I got a lot of anxiety since then. I see myself sick, i imagine myself dying, i imagine the all planet dying actually. (Am I imagining really?). I searched the answers and always knew aspie could be one. My brother is probably an aspie as well. (Got diagnosed with a Developpement disorder). Suddenly last week my dad tells me out of the blue that he always knew he was an autist and that me and my brother are as well. (Lets not judge the fact that he tells me that NOW when I get 30, he is heavily medicated for 20 years and out of his mind).

My problem : i need to deal with anxiety

My question to you, community : for you, was it NECESSARY to be diagnosed ? In france it is a long travel of many years. With a lot of bad doctors and costs involved. And i hate going to the doctor. What did your diagnosis bring you ? Did it help in any way with the problems you were copping with ? Did it help finding a better « path » in life ? Or having less anxiety about the one you’re already on ?
I mean : i have a boyfriend, a job, i can make decent money and i have hobbies, i am a happy person. I just struggle with death-and-sickness-related anxiety and modern society. But who doesn’t ? If you could go back in time, would you go through the all process of diagnosis again ? What would you say to a somewhat-happy un-diagnosed asperger ? (Or if I am not- to a somewhat happy anxious human being with a weird dad and brother) Is it worth oppening the « pandora box » ? Would you be able to live with yourself on the long term, not knowing « what » you are ? What did it bring you, the fact of knowing « what » you are ?

Thanks for your answers, they will be read with attention and gratefullness ! Thanks community. Sorry if I may not be an aspie.

Thanks
Vero

I can't answer myself as I am waiting and it is a little sceary. I don't know what happens next and it is a long wait. I probably am not on the spectrum and it has just been my way of dealing with stress, as nothing was picked up in my schooling years and it is only really the last few years others have suggested it and I finally put two and two together but I maybe making three or five if that makes sense.
However so much adds up that I wouldn't be too surprized if I was on the spectrum of having it. No idea. And I am not that patient but am having to be patient. So the question you asked I am also asking. Though for me if I am on the spectrum it is hampering me from earning an income, so I have no income at the moment, as if it is that, then it is causing energy loss.

It was necessary for me. It showed me that many of my issues were not caused by character flaws and being a weak person but I was born this way. That was a great help to my self esteem. It helped me understand myself both in knowing my strengths and weaknesses. They helped me avoid situations that are not good for me and seek situations that are good for me. One can not avoid every situation that is problematic for oneself but if I know these are coming I can now mentally prepare for them.

I learned about autism and began to gain understanding of why my life is how it is.

Some years later, I went through official diagnosis when a researcher told me he couldn’t use my story without it. Nothing helps the condition when you’re an adult. Nothing eases the exclusion from normal society. Speaking for the unknown millions who have lived without knowing what’s going on is a small compensation.

I was diagnosed 20 years ago and it seems to have made me feel angry, sad, victimised and ashamed of myself. I can't bring myself to accept it.

I was diagnosed last year at 35.

The thing it brought me was a better understanding of my own blind spots when it comes to other people and my interactions with them.

I have come to understand that I don't have the same expectations from my interactions with other people. I have also come to understand that while I generally only base my expectations around a much more simplistic model of relationships based on best guess rules translated into moment to moment 1:1 interactions, most people's expectations of my behaviour are socially derived and fluid in a way that mine aren't.

I have come to realize that above all, the things that most of the people I interact with place extreme importance and value on (without explicitly saying so), I do not value at all (likely because I don't process information in the same way) and this difference is at the heart of the vast majority of my conflicts with them. The fact that I don't look any different and I generally don't act very differently feeds that conflict.

Diagnosis is a tool, I think, and it's best used as such (to help you accomplish tasks that would be otherwise difficult or impossible to do) but you should still be mindful that you don't use it as a tool for every task (as they say - when all you have is a hammer, everything looks like a nail).

More concretely, it has given me access to medical and diagnostic reasources which have helped me understand how I work (including the fact that I have poor self awareness in many things which people close to me can find frustrating).

Part of my assessment included a battery of tests looking at strengths and deficits in cognition. Some of what I found out told me what I already know, other findings I found surprising (e.g. I know I struggle with math, but I didn't realize to what extent that was related to some of the other areas of difficulty - spatial orientation etc.)

Knowing these things means I can do a better job of not getting over my head and have generally gotten better at avoiding situations that will cause me problems while offering little advantage.

Similarly, it has opened up a path for testing some of my sensory difficulties and the recommendations that have come from that have given me a way to understand some things about myself that I found difficult to deal with and always tried to work hard against (obviously not succeeding, else I wouldn't be going through this at 35). Examples include diagnosing sound processing difficulties (sound overload can trigger intense reactions in me - anger and such), visual processing issues (extreme sensitivity due in part to better than 20/20 vision but poor processing and being easily overwhelmed and distracted) and so on.

In a way what I value the most so far is that diagnosis has given me a means to be open and explain some of the things that have traditionally caused me conflict with others. Understanding and being able to adjust my behaviour in order to cope better with the realities of everyday life (because the world doesn't change itself for me) has in turn made me more patient and better able to explain things to others. Being open about my diagnosis seems to have also made others more patient with what they might have previously interpreted as me being difficult and I haven't really noticed any downsides in my situation.

A final benefit is a hopeful rather than a concrete one - being aware and open about differences means that other people who encounter them have someone who can help them understand better. Awareness is a powerful thing in making the different become normal and there are many people who now know a lot more and understand a lot more just because I went and got diagnosed - I can't see that being a bad thing either.

A year in, if I had to do it again, I would.

Hope this helps and good luck!

It relieved me of all the guilt due to my social disabilities.

Being an Aspie in France can be very hard since most doctors don't "believe" in AS.
You can contact your local CRA (Centre Ressource Autisme) to find a specialist (Psychiatrist, not Psychologist) who will perform all the tests to confirm your condition. The CRA also provides social skills activities if needed.

I am 28 now and I had suicidal thoughts everyday since I was a teenager, it was normal to me until I told a friend (last month) who asked me to see a psychologist ASAP.
The psychologist asked me a lot of questions and told me that I was autistic and informed me about all my autistic traits, we found out that my suicidal thoughts were actually linked to the feeling of shame and guilt I have everytime I misbehave in society and because I don't have the social software that NTs are shipped with at birth.
Since I can't understand social norms and codes intuitively, I have to intellectualize every single interaction to find the meaning of every social cue I catch which is exhausting and energy consuming.
Knowing this relieved me from most of the guilt I had of not understanding or reacting in a way that was not acceptable in a social situation.

In France, only a psychiatrist or a family doctor can give a diagnosis. When I told my family doctor, she said AS is not a confirmed illness and prescribed antidepressants (that I am not taking). In the CRA of my region, we have a wait of 3,5 years before having a appointment to have a diagnosis.

Be careful, do not take any meds that can mess up your brain, if you feel normal and happy just keep looking for a psychiatrist who knows about the subject, it might be helpful in the future.

Wow Boncoin. Is quite a journey of discovery for you.
I am on a similar journey and I do not know if I am on the spectrum yet. I think I might be. I am also being patient waiting to be assessed. I don't have a date yet but I am on a list. When I am higher up the list they may then be able to give a date when the assessment is going to be.

I was 'outed' forcefully. I would've been fine never knowing for sure. The powers that be kept sending me to tests because I blew a gasket (had a meltdown). All the tests were getting expensive, so finally answered questions truthfully. Now, they think I'm in need of reform school. It brought me nothing except knowing and fear about all the therapy I am going to be forced to attend.

It brought me peace and self-acceptance.

It brought me the strength to keep going after I realised that I could not truly fit in a group no matter how hard I tried. It helped me realise that I needed to do things my way instead of crowd's way.

Diagnosis didn't bring me a whole lot, admittedly, as I was diagnosed in middle age and had successfully 'passed', more or less, up to that point (to the point where I, myself, had no idea).

I guess it's useful as a lens to view the world through. A lot about my early life makes a lot more sense if I see it from the perspective of having had ASD this whole time. It's given me a bit of certainty and solidity, knowing this about myself. It's even somewhat future-positive; while autism currently is going through a bit of teething troubles when it comes to social acceptance, the pattern points to it being far more accepted and more widely known about about ten years down the track, so there's that to look forward to.

It does mean that various programs and health assessments and government forms and whatever which 100% absolutely require a formal diagnosis in order to be accessed are now available to me (although admittedly those are fairly rare), but certainly some of them need a lot less paperwork if you have a pre-existing diagnosis than if you're self-diagnosed, and will often give precedence to the formally diagnosed.

When speaking about autism, it's less problematic with a formal diagnosis. For obvious reasons, people are less likely to believe you if you're self-diagnosed, or are more likely to challenge your lived experiences as being provably those of someone with autism. And, to be fair, there are a lot of conditions which have overlapping symptoms, and most of us aren't professional psychological diagnosticians. I know that I wasn't comfortable saying "I have autism" until I was official; I'd usually say something more like "I match up with enough classic symptoms of autism that the docs want me to be tested".

That said, I know perfectly well that it's not always easy to find somewhere which can do official diagnoses, not easy to get it done immediately, and even then not always financially viable in a lot of places. Self-diagnosis is as far as many genuinely autistic people are honestly going to be able to get, unless more options become available. Particularly adults; the vast majority of autism services seem to cut off at age 18.

Diagnosis , cost benefit analysis

Diagnosis about 500 bucks. San Diego 2003

Age 21

Regional center doesn't give services to clients diagnosed before 18

With few small exception, diagnosis had zero advantages, in my situation


If someone is under 18 and more symptoms, that's different

My diagnosis ended nearly 3 decades of abuse from my father. We actually have a good relationship now that he understands my limitations are caused by my autism and not an attitude/behavioural problems. The diagnosis also brought me inner peace, knowing why my life turned out the way it did, and allowed me to forgive myself. It also put an end to misunderstandings and misdiagnoses from my doctors.

It gave me a puzzle piece. Unfortunately I still don't have enough of them to tell what it's supposed to be.