Being diagnosed isn't that great

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A lot of people in the autism community seem to think that life would be so much better if they were diagnosed in childhood. I think they are wrong. When you get diagnosed people stop seeing you as a human being. You do get some "support", but 99% of it is useless.

The world seems to hate everyone regardless of any factor, might as well be hated as you were made instead of pretending.

Speaking as one of the people you're referring to, I guess this is just one of those things where each of the two groups, (those diagnosed early, and those born too early for that era), will simply never really know what it's like for the other group of people.

Those old enough to have been born before proper awareness was out there, will never know if they would have instead had a life branded and hampered by the diagnosis.

Those young enough to have been born in the era of ASD being noticed early enough for diagnosis and "help" of any kind, will never really know if not being diagnosed would instead have given them a life hampered in a different way, that of being completely in the dark and confused and ashamed of things neither they nor their family or friends understood.

Both situations have their disadvantages, and you can't just say to the opposite group "You are wrong." How do you know if you didn't have the experience they had?

There's an old saying "Walk a mile in someone's shoes" before you think you know what it's like for them. I can concede that early diagnosis can leave a person feeling like everyone has written them off in some way. I can see how that might be, and that is terrible.

Can you see the opposite side, too though? That lack of diagnosis also doomed the other people to the experience of nobody around being fair to them about their challenges? There are a lot of breakdowns, depressions, shaming and self shaming that come along with that situation too.

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Last edited by BirdInFlight on 18 Jul 2014, 4:37 am, edited 1 time in total.

The SSI checks I get as a result of my diagnosis certainly aren't useless.

I'm still depressed and have no self-esteem. I don't think getting labelled with autism made me less depressed or have a better self-esteem. The only way my diagnosis helped was the funding I got. My family was lower middle class when I got diagnosed.

I think you and I both have wound up with the same problems yet arrived at because of opposite situations -- you're depressed and have low self esteem as an outcome of having been labelled early on. I'm also depressed and have low self esteem as an outcome of my family mistreating me for challenges I had that there was actually a reason for, but which they were so confused by they could only figure I was Rosemary's Baby! That wasn't fun to grow up with either.

Oddly we've both had the same outcome of depression and feeling terrible about ourselves, one of us because of the early labelling and the way everyone reacted to that, and the other because no explanation was investigated, and the way everyone reacted to the unexplained and unexamined behaviors.

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The "benefit" of a diagnosis varies from person to person, but still, I'd rather have known at a teen that there was something "wrong" with me before I screwed up my life trying to fit into the NT world without any understanding of what I had to do to fit in.

This, for me, is very well-put, and describes me exactly. I've muddled through but I would definitely describe it as "screwed up my life" and also my own mental health by striving to fit the NT world because I didn't know that there was another way to accept myself.

I was diagnosed just yesterday. I wish I had be diagnosed when I was young. Instead of getting the help I needed in school, my teachers pretty much gave up on me and I got yelled at for doing poorly in school. I can't help but think that my life would have been better if I'd had support in school.

There was ONE teacher (in 2nd grade) who thought something was wrong with me. She told my mom she thought I had ADD, but my mom completely rejected that idea. I still kinda resent that she refused to have me tested for anything.

Imagine if you had to be depressed and with no self esteem, I have that too as a result of growing up w/o ever knowing like BirdinFlight talked about, and then on top of that being told once you found out, "Sorry, you can't be eligible for any help or funding because you found out when you were older." At least you were lucky enough to get some funding. We had to deal with all the traits and symptoms growing up and we still deal with them but we get slapped in the face and told "That's just too bad, you can't get help because you were over 18 when you found out."

I wouldn't know about what it is like to be diagnosed. I can fake it really well, and probably lie my way through a diagnosis, and pass as not being me. People treat you differently than most others regardless. You still just know that you are different than the majority of the population. Your behavior remains the same. Knowing is half the battle. To not need to ask yourself why you are soo different, or what is soo wrong with me that I am like this when others are not, and have an answer is super important. 25 years of wonder or more can take its toll. Be thankful you are you, because it is all you have. We all know how far down you can feel. And how far up too.

I wonder if I would have had fewer suicidal thoughts as a child if I had known and if I would not have spend half my life locked in my room trying to avoid everybody and not understanding why I was so depressed and troubled and odd, just always a little off and a little different from the other girls at school. I wonder if I would have been able to graduate from college and have my degree if could have had some kind of help or IEP or something. I wonder if I could have been able to actually hold a job. I wonder if some of the friends who left me because of my Autism/Misophonia would still be with me if they had known that the reason I am the way I am is not deliberate. Maybe they would have been more sensitive had they known.

Last edited by skibum on 18 Jul 2014, 9:37 am, edited 1 time in total.

You have to find a way to transcend your diagnosis.

You are a person, not an Asperger.

You've got potential. You could "fit in" with the NT would in a unique way, without being NT. Temple Grandin managed that really well. She didn't let her diagnosis rule her. She ruled with her diagnosis, instead.

That might an an advantage of never having had the opportunity to be diagnosed. We had to learn to cope and survive and make our life whatever we could make it. No one accepted any excuses from us. Not that Autism/Asperger's of Misophonia is ever just an excuse. But back then when everything we did was just considered a behavioral problem and that is all it was to our parents and teachers, we had to to buck up and find a way to make it work if we were to survive. So without a diagnosis or without the possibility of one, you had to learn your own coping mechanisms and do whatever you had to do. I had a lot of meltdowns and shutdowns in secret. I ended up spending a lot of time alone in my room. When I was not at sports or at school I was pretty much alone in my room or with my cat. But what that did was teach you that you could survive and you could get yourself by and make some kind of life for yourself.

i think its different for each person... having the dx may binefit the person more than if they didnt have it. of it could be the opposite. also, different locations can vary in if things are productive, or if the supports are there that you need.

I wonder what my life would be like if I had a roof over my head, no bills to pay, noodle salad every day, with chicken, or tuna, peas, and cheese, Dexters laboratory in my basement, and some fine wine. Preferably Moscato. No real friends. Just people that show up every day, and again, to ask questions, and talk about your special interests, maybe learn something in order to fill up your day with people.