Early diagnosis is overrated

Post Reply New Topic

I was diagnosed at a young age. I've had a lot of trauma because of that. All of the adults treated me like I was half my age. They didn't let me do the things the other kids did. Sure I received "treatment". Too bad it wasn't effective.

The problem with a diagnoses is lot of people look at the label instead of the person and have it define them so they may hold the kid back and not let them do things just because the books and the internet say autistic children have a hard time with X. That is a con thing about labels.

All know is, by not being diagnosed until the age of 49, I was forced to endure a lifetime of abuse, intolerance and discrimination because of the things I could not do up to everyone else's standards. As a result, I have lived a life poisoned by chronic suicidal depression and self-loathing. In spite of a high IQ, I was never able to accomplish anything that I hoped, because I could never understand what it was that was holding me back.

OTOH, my niece, diagnosed PDD-NOS in Elementary school, has been treated with understanding and tolerance that I never got, aided and encouraged, and is a happy, upbeat goal-oriented college freshman now.

While I do see her family often treat her like a child, she doesn't seem to take offense to it (though I probably would have at that age). The trade off is, it's probably better to be given less responsibility than you're actually capable of handling, than to be given more than you can keep up with, and ending up humiliated and hating yourself for failing.

I was diagnosed this year and I am in my 50's. I have been treated differently by my brother in law in that my judgement is suspect. But the other members of my family have been fine in that they mostly get it or get it enough for people who are not living it.

What I would be interested how do people who were diagnosed early and not told about it for years feel about not being told.

If I had been diagnosed early, I bet some things would have been better, but others might have been worse -- there's no way for me to know for sure. But I don't think it's black and white, whether or not early diagnosis is always the best thing....

In an ideal world, where everybody understood all the different permutations of developmental disabilities and neurological differences and nobody got abused or mistreated or underestimated for those things, then I think early diagnosis would always be beneficial. In the real world, it's complicated.

Double post

Last edited by DevilKisses on 28 Dec 2013, 5:01 pm, edited 1 time in total.

I still have that problem because of being constantly babied during childhood. I often force myself to act as normal as possible to avoid being babied. It works at school, but I'm to exhausted to that stuff at home so I'm still babied at home.



How do you know she is happy and upbeat? I appear happy, upbeat and full of energy to outside observers. I often put on a happy face for my extended family.



When I was younger definitely did take offense to it. I didn't really know how to express those feelings. I just knew that the way they were treating me was off and I didn't like it. I was often given more responsibility than I could handle and I was babied at the same time.

Because I can see the difference between smiling, laughing and making confident, positive plans, and the typical stressed-out, 'don't touch me' expression that most autistic adults have as they stand against the wall and wait for the social occasion to be over. Just listening to someone talk about current events and things going on in their lives can tell you whether their world view is positive and hopeful or negative and fearful, by the adjectives they use to describe things.

I think that lack of early diagnosis was good for me, because parents and teachers pushed me forwards and didn't try to hold me back or let the autism label dominate over the abilities that I had and could use to improve in weak areas. And in my mind, I never had reason to think that I couldn't do something or that a disorder stopped me from doing something, even those things that I was uncomfortable doing, but I still had to do them for the most part, which is part of learning to do them. And I was also allowed to do my own things like pursuing special interests instead of having to get early intervention therapies and spend lots of childhood on that, which is questionable in terms of improving long-term outcome. And I don't think that I would have responded well to that behavioral therapy.

My mom wouldn't let anyone treat me by a label despite my early diagnoses. I am glad I never knew about it or knew I had a disability or I would have started using it as an excuse and thinking rules didn't apply to me or any responsibilities because I would have been so darn literal about it. I grew up around kids being exempt from rules because they were different so if I learned I truly was different than normal, I would have thought I should have the same treatment too as those other kids I knew.

I did have the autism label on my record but my mom wouldn't let them treat me as autistic. She wanted them to treat me as me. My school tried to set limits and my aid was over protective and it was something I fought and struggled with in high school. My mom claims the AS diagnoses got me what I needed but I also think it made things harder in ways.

As for me, I'm not sure if I could have avoided a diagnosis of some sort. In an earlier age (like 1950s and earlier), I'm sure I would have been locked up in an institution for life. When I entered Kindergarten, I could not function at all and so could not escape the eyes of the mental health professionals.

Overall, though, my life has turned out OK and I am independent, so perhaps the early diagnosis had something to do with it.

I also found the Asperger's label from 14/15 on to be very helpful and encouraging, I must add.

^THIS.

Growing up I was told over and over "oh you're so smart, you can do anything" because of my high IQ. It raised my expectations of myself to a totally unrealistic level. So now no matter what I do, I feel like a failure.

I think it's different for everyone. There are some people that simply can't progress without some form of early intervention.

I would have really benefited from an early diagnoses and appropriate treatment. I felt pretty stupid and useless for most of my life and over protected by my mother anyway. It was like she treated me like I was special needs without a diagnosis. Even people who are 'diagnosis deniers' treat me that way.

I would have done a lot better as a child had I been diagnosed as soon as my mother recognised something was wrong, which in my case was about age eight. I would have had help in school with my processing problems that otherwise went unnoticed, so I wouldn't have fallen behind so far, I would have had help making friends so I wasn't the weirdo wandering around the playground by herself or building insect houses out of rocks at the far edge of the field, I wouldn't have been yelled at for unknowingly saying the wrong thing all the time, and my sensory sensitivities would have been recognised and respected more. In short, I wish my mother could have afforded an assessment when she realised there was something odd about me, it would have prevented a lot of problems.

With regard to low functioning "classically" autistic individuals with limited or absent verbal skills and intellectual disability, early intervention is essential; humans have a very small window in which to learn language efficiently, and it's when they're two to five. Miss that window and that person will struggle unnecessarily for the rest of their lives. Same goes for social and self-help skills, the earlier you can help people, the more effective that help will be. The OP may have had bad experiences thanks to his diagnosis, and the treatment may have been ineffective, but that is a long way from saying that all early intervention is pointless.

I think we had the same childhood.



Completely agree with this. When I was five I developed selective mutism which put an extreme delay on building social skills or even learning to things on my own. I remember being quite proud of myself at 16 when I could go into a shop and tell an assistant what I wanted to buy.
Recently my brother was saying 'she's only six' about his daughter who despite being gifted has some reading processing issues. To me she could have ADHD if she is impatient to find out how a story ends, but I'm no expert to know for sure. I just couldn't believe that a few members of my family with kids have already ruled out learning disorders or even autism being a reason for their children being a bit behind. My four year old nephew just screams HFA to me. They are more socially engaging than I ever was though.

Over the last year or two of knowing, I've thought it would have been better to know younger so I could have learned all these things about myself in order to recognize symptoms and try to prevent them from rearing their ugly heads and ruining things. I have no idea if things would have worked out that way or if it's just some wishful thinking as symptoms would have just run their course and screwed with my life anyways. Further, I am a firm believer that everything happens for a reason and that maybe I wasn't meant to figure it out until I was 30 years old because I couldn't have done a damned thing about it earlier anyways. Meanwhile, at this stage in the game there are a couple of wonderful people in my life that I've learned so much from & because of that I was able to get to the physiological medical root cause of my problems and treat what was exacerbating my Autism and other symptoms to the nth degree.

Also, the OP's experience is along the lines of what I might have expected to happen had I known earlier. I never really quite thought of it in terms of overprotective parents and others in my life preventing me from doing things, though. I thought more that had I known my own diagnosis younger, I might have used it as an excuse/reason not to try things, not to do things, not to achieve or accomplish things etc whereas not knowing, sure I had a lot of frustrations lol, but I just.. went for things & did them.