does the diagnosis really explain anything at all?

[Fino]

I agree with OP, nearly everyone is not understanding what he's trying to say.

 

[Magna]

I agree with OP, nearly everyone is not understanding what he's trying to say.

In your words, what do you think the OP is trying to say?

 

[SDRSpark]

What did my diagnosis do for me? I'm one of those that felt it was the missing puzzle piece I couldn't identify in my life. When I was diagnosed, that last puzzle piece made sense of my life.

The best way for me to summarize what my diagnosis did for me:

For the first time in my life it shifted my perception of myself from that of an abject failure to someone who is autistic.

"Why do I continually have problems with social interaction? No matter what I've tried throughout my life, it just doesn't change at a core level. Why?"

"Why am I overly sensitive to sounds, smells, touch, repetitive noises? Other people aren't bothered by it. I need to change."

"Why have I felt like an outsider, an alien literally all of my life where no amount of behavioral modification, etc changes that feeling?"

"No matter how hard I try, I just can't multi-task like other people can. What is wrong with me? I'm just not trying hard enough. I know I can change because other people can do it. Sure, I can practice and get a little better, but the problems I have seem to be unchangeable at the core. Why?"

"Why do I always seem to fail at things that others can do easily? Why do I have to give so much thought to do those things when others don't have to think about them? I'm a failure...."

"I'm autistic. You mean there's more than one neurotype? You mean one neurotype isn't "better" than another, they're just different? You mean I don't have to constantly strive for, compare myself to, measure myself against, come up short and fail at being neurotypical because neurotypical isn't the only "good" neurotype? You mean when neurotypicals try to elevate their neurotype as being superior to mine I can brush them off with a glorious and complete lack of interest in wanting to be like them?"

"Hey...for the first time in my life I've accepted myself and like myself! There's a reason I am who I am. Cool!"

This is exactly how it was for me!!!!!!

My whole life I've been told I'm "just different" and that was OK...and sure, that's great, by and large people weren't trying to change me. BUT (huge but here) it also didn't give me any usable information.

Kind of like this...say I acquire a new car, and it's a stick shift. I don't know how to drive stick shift, and everyone around me has an automatic.

So I say "I don't know how to drive this car, can someone help me learn" and everyone responds: "There's nothing wrong with the car! Don't worry, it's a great car!" But...I didn't say there was anything wrong with the car, just that I don't know how to drive it! And they respond "that's an amazing car! You're lucky to have such a great car!" And I'm like yeah, but I don't know how to drive it, I need someone to teach me how to drive stick shift. And everyone says "wow, but that's a fantastic car! What are you worried about? There's nothing wrong with having a car like that!" And so on, and so forth.

Finding the "autistic" label was like having a driving instructor come along and say "hey, that's a manual transmission! I can teach you how to drive it!"

 

[WildCat]

No, it put a label on my forehead.

 

[clg114]

You are the person I am refering to.
What exactly did the diagnosis tell you that made you say that "it all made sense after being diagnosed"?

I have trouble socializing with others and did not know why. I have always felt uncomfortable in groups of people. I do not have any desire to be one of the group.

My interests are a lot different than others. I have special interests and can get focused on for long periods of time. I have a lot of knowledge on subjects that most people do not care about.

I have a lot of trouble with nonverbal communication. Things like body posture, eye contact, tone of voice go right over my head. Because of this, I take what is said to me literally.

I grew up and live in a low population area. I am very different everybody around me. I have never met anyone like me. I was diagnosed with the old DSM-4. The diagnosis was Asperger's Syndrome (DSM-IV 299.80). Now I know why I am so different from those around me. Most people are social animals, I am not and now I know why. Finding out this much about myself was very uplifting for me. Part of this is because I was not diagnosed until I was 62 years old. Unlike most Autistic people, I like being on the spectrum. It make me good at what I am good at and bad at what I am bad at. For me, the good outweighs the bad.

 

[The Lorax]

The diagnosis usually is a relief for many people. Now they understand why their life has been different than other people. It lets you be aware of things you can do to improve your situation.

we can't put ourselves in the bodies of other people to get a gauge on what we should be feeling like. My happiness level might be different from this person's level. So we only have ourselves to gauge off of.

For me when my son and wife got diagnosed I immediately started researching autism. This way I can understand why my son wasn't loving like I see with so many of my other friends children. I always thought what am I doing wrong as a parent. Nothing was wrong, he was just different.

Research on the diagnosis. Perhaps get testing on what is what within you so you have a better understanding. Maybe your executive function is low and you don't realize it but can improve it. Maybe you never understood social intelligence and now you know why. You can learn. My son had little social intelligence but after the diagnosis we got him help and luckily he was an ASD that could be taught NT social intelligence. He now understands the dynamics of NTs and better interacts with them for his own advantage.

 

[BoltzmannBrain17]

For me it didn't explain anything. It just kind of happened. I was diagnosed when I was 10 because I was acting out in school and was difficult to deal with in general. At the time I didn't really care about the diagnosis but it really bothers me nowadays. Looking back at my psychological evaluations and reflecting on the past hits me pretty hard.

 

[Fino]

In your words, what do you think the OP is trying to say?

I explained back on page two. He's bothered by the fact that a diagnosis did not enlighten him in any way, misunderstanding the purpose of a diagnosis.

I understand what you're saying. This is a common criticism of psychiatry. Diagnoses don't explain anything and they don't teach anything, they describe. Diagnoses are descriptions. The purpose of the description is to know which resource to direct you to and medications to prescribe. It also allows researchers to study the description under the umbrella of a single term.

Things with names are less scary. People here are saying they were relieved that they weren't broken necessarily, they just have this thing called "Autism." It's seen as a cause of those related behaviors, and when something has a cause, it feels less shameful and confusing. Rather than deal with ten disparate struggles, you think of all ten struggles as a single struggle, called Autism.

Another benefit is that it connects you with people who have similar struggles, as it has done for you in the case of this forum.

 

[Alexej]

it put a label on my forehead.

Yes it might have put a new label on your forehead, but what was the label you had already? (Think of the adjectives often applied to autistic people )

This getting a different label was part of my story in coming to accept my diagnosis.

 

[LadyS]

I found it helpful especially in my physical health. Spent a whole life trying extra hard to fit in and having others understand me. With a diagnosis, my family finally understood and accepted and I realized the toll of masking took on my body in general. Knowing that there isn't anything wrong with me helped me stop trying so hard and just letting be. Inner peace counts for everything.

 

[BlueSky Aozora]

(Uh I just realized I wrote a long essay.. sorry bout that).

I think generation gap plays a role here. I've read somewhere in the forum, that older generation tends to feel validated by the diagnosis (although not all), while younger generation tend to not feel so favorable about it.

I think this is because, older generation lived in the time where autism and mental health awareness were kind of absent. So we tried doing like what others do but to no avail, and perhaps being labelled as "lazy", "not trying hard enough", etc, for decades. So after decades feeling incompetent and weird, finally feel validated to know the reason of this weirdness.

However, for younger generation, i see that they tend to be diagnosed when they were still children, merely living for a decade. To try to see from their point of view, they were just living trying their best to cope, but suddenly being labelled - "you're this kind of person", "you might tend to be like this and this", etc.

It's like (an analogy) when we see someone for the first time, and in just a few minutes, the person dictates that he/she knows the essence of our personality, and predict that we will do this and that. Some people might be uncomfortable about this.

I'm not sure if early diagnosis would limit the children, or would be beneficial. At least, they will know that many self-help books directed to normal people probably are not working, and they can find better guidance suitable for them.

Yes, some people/family already know that "they are this kind of person", so probably a diagnosis was not very helpful. More so, that nowadays the awareness of autism is much higher than before, so many people might already know that they're autistic before being diagnosed. Even so, diagnosis might provide better direction, as some people thought they were having major depression or other illness, when they are maybe just autistic. Or the opposite - some people might misunderstand thinking they're autistic, when they're not.

Indeed, diagnosis doesn't tell much in itself. It's just a green light pointing to a direction, "maybe you should research more on autism/asperger, because you are one". Maybe what comes after a diagnosis is much more useful. Like lessons on how to cope with society, lessons on how to cope with sensory issues, recommended clothing/exercises/ study plan, etc.

I'm a bit envious since I've spent lots of time and money buying books, taking courses, etc. for years, that were not working or not suitable for me and my relationship, just because we did not even aware about asperger/autism. That's why many people thought, "if i know about this earlier.."

But I'm not in the younger generation position, so maybe younger generation also feel a bit envious of older generation that older generation didn't get 'labelled' too early in life. As I've mentioned before, I hope early diagnosis would not be a limitation for the children and family involved. But I do think it will provide better guidance for them and the family too. The research on autism is still ongoing, so nobody know the perfect answer. There are so many things also that we can learn from the NTs living with autistic people, other than the professionals.

And some people, no matter the generation, might feel upset about the diagnosis, like feeling of being labelled. Indeed, each person is different so might having different feelings about diagnosis too.

 

[Crossbreed]

I think generation gap plays a role here. I've read somewhere in the forum, that older generation tends to feel validated by the diagnosis (although not all), while younger generation tend to not feel so favorable about it.

Autism before 1979 was mostly (unrecognized) ASD1s. ASD2 & 3 with its co-morbid brain damage was extremely rare (comparable to triplet births). Since 1979, the latter has become all-too-common.

Of course, autistics without brain damage are going to feel more positive than those who have brain damage as an additional burden.

 

[Beach]

I mean, it gave me a bit of self insight into how i work after i got the aspergers diagnosis, but its not like the diagnosis is gonna help with my anxiety or depression which is why im still continuing going through therapy.

 

[The Lorax]

Maybe I can rephrase diagnosis.

Imagine you are color blind. Everyone is pointing out the colors you just can't see. It is frustrating annoying, and sometimes dangerous as signs are in shades of blue and green which look like gray to you. For 20 years you live like this. You don't understand what this color thing is at all and no one is explaining it to you and only getting frustrated.

Then someone finally explains to you that you have color blindness in a way you get.

Ok fine your situation hasn't changed, how you feel hasn't changed, how other people treat you hasn't changed. But now you know and can find ways to fix it.

On the newer generation this is my opinion based on other fields I know.
Think back 100 years ago. Life was simpler. Times were simpler. Work might have been more physically difficult but it was simpler. Many jobs were only stressful in the sense that you worked long hours in simple conditions. Technology was slow, things moved slower. Lots of open spaces, fewer distractions.

Now work is becoming complex. Computers are changing all the time. I am in the technology field and I have to update myself constantly. So here you have someone with ASD or ADHD, which are the same genetic code sections, and life is overwhelming. While you physically don't work as much you mentally do. You interact in more complex ways with people.

So I think this is why we have more diagnosis today. The only reason the new generation is stressing is because the life is more complex than 100 years ago, way more complex.

You put an ASD or ADHD on a farm or out in nature they are calm. Technology overloads them and we are surrounded and pounded by it daily. It takes an incredibly strong willed person not to get involved in social media, the news, imgur, twitter, facebook, or whatnot. I stopped going to everything and got back time. I don't argue on FB, don't read chain posts on YT then retort. Forget it. I don't watch emotionally charged news. All this overloads a person. We all have our limits. So yea new people are coming out of the woodwork with diagnosis that perhaps 100 years ago would just be considered eccentric but acceptable behavior.

Or its environmental. Like I said just my thoughts here.

For me it was incredibly frustrating I couldn't get my child to do anything he didn't want to do even when it was for his own benefit. Things that were no brainer situations. You start thinking what game is he playing? Is he ODD? He is a sociopath? Are we that bad? After the diagnosis now I had a starting point to work from and could work around him or help him. Like the other day my teenage genius son had a complete melt down temper tantrum, he is 6' tall (182cm), over 4 science things he had to do that were easy. They were so easy I could do them... because I knew this field. I knew he knew them. I offered to work with him, to let me read he say the answer and I type it in. Nothing. He just flew off the handle and I stayed calm. I left it alone he banged somethings then just said "FINE I'LL DO IT" after I offered help. He did it and calmed down in 30m. Totally illogical from my perception. But because I knew what he had I knew how to react and how to help. This scenario with NTs is called usually cognitive dissidence.

 

[Crossbreed]

Think back 100 years ago. Life was simpler. Times were simpler. Work might have been more physically difficult but it was simpler. Many jobs were only stressful in the sense that you worked long hours in simple conditions. Technology was slow, things moved slower. Lots of open spaces, fewer distractions.

1979 was only 42 years ago.
Even if ASD2 & 3 were highlighted by a change in work culture, their growth in recognition would have been gradual (a ramp) as time went on.

2014-CA DDS Autism Cases By Birth Year

These are ASD2s & 3s only; not including ASD1s.
This caseload did not previously exist under a different diagnosis.
Also known as Millennial Autism.
Image taken from California's Autism Crisis (earlier version)
2019-CA DDS Autism Cases By Birth Year

2019 Update​

 

[Alexej]

I don't argue on FB, don't read chain posts on YT

Agree - arguing on FB is such a drain of energy

 

[Au Naturel]

"You put an ASD or ADHD on a farm or out in nature they are calm."

Absolutely. ASD-1 and ADHD are not serious disabilities in quiet and low population density environments like that.

 

[Crossbreed]

ASD-1 and ADHD are not serious disabilities in quiet and low population density environments like that.

Try that with a perpetual 18mo-old. Even a perpetual 8yo is going to be less productive than full-grown ASD1. That is what the severity levels mean. But back in the day, they were extremely rare. And most of them did not reproduce.

 

[Crossbreed]

I’ve just been diagnosed Aspie at nearly 56 & am still getting to grips with understanding it.

Hello & welcome.

 

[Cactus]

Has the diagnosis of Asperger's (or a similar diagnosis) ever explained anything about you?
This diagnosis doesn't explain anything at all really if you think about it.
It really says things we knew anyway. Issues with meltdowns (or shutdowns) or issues with social situations. I think we already knew that before the diagnosis.
Diagnosis is really only something you need in order to get some services (or meet other people with this diagnosis).
I have tried to use the diagnosis to explain a lot but it did not work very well for me.
The diagnosis only really states what is obvious. It is too broad, less concrete. What we really need is to go to professionals who can meet us where we are and tell us what our concrete issues are. We need to know our very concrete issues. What we on a concrete level struggle with. Diagnoses don't tell much about our concrete situations.
does the diagnosis really explain anything at all? Does it really help you see your concrete issues/difficulties?

please don't read this and call me a person who complains. I just want to understand what diagnoses are all about. Feel free to think about ASD as you want.

I sometimes hear about people who say that after getting an ASD diagnosis a lot makes sense. I interpret this as: they have difficulties with social situatiions (this is the sypmtom). Professionals say that they have difficulties with social situations ( the exact symptom they were aldready aware of). They say that now this makes sense. How can being told something like that make sense? To me it is very unhelpful.

My diagnosis told me why I’ve had difficulties in my life. I’ve become somewhat bitter because I could have accomplished more with my life without my social difficulties. However, I can’t change the past. I have lost my motivation to try because I’m so very tired from trying and failing. I feel empty without my ambitions, but they seem to be gone forever. I do the best I can with the abilities I do have.