Being diagnosed isn't that great

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We could wonder all day about what could have been had our circumstances had been different. But we each have the life we have been given and we each have to make the best of it however we can. Each person's challenges are his or her own and even though situations and consequences of challenges vary tremendously, each person's difficulties can be equally difficult to him as the next person's are to her. And I believe that is true for everyone, not just for those on the Spectrum. But whether we are old enough to have never had the opportunity to receive a diagnosis in our childhood or whether we live in a country where it is much more difficult to get one or support or awareness are not what they should be or whether we live in poverty, we each have been given the life we have been given and we have to do our best to make it work.

that depends on the individuals circumstances and level of autism-many people all over the spectrum have different forms and levels of support,am given high levels of support in all parts of life and get treated with respect by those who are a part of life.

some people dont 'need' a diagnosis or specialist autism support, and when going for assessment they dont realise the impact it will have on them.

That is very true. And only each individual can truly know what he or she needs. Many people have argued with me about what they think I need or don't need and it can be very frustrating because none of those people have any idea of what it is like for me to have to cope or go through daily life. Yet they seem to be experts in deciding what my needs are and are not. And some of them will argue to no end with me that they are right and that I am not really aware of what I need or that I don't really understand what I need. It's rather mind blowing how even though I am not far from 50 years old and people comment and are blown away at how intelligent and observant I can be in other areas and even in self analysis, for some reason when it comes to life needs they seem to think I don't know anything about myself at all, like I just hatched yesterday, and that they know better.

I lived most of my life being blamed and avoided for behaviors and opinions I thought were normal. I forced myself to adapt by masking if only for a sense of survivability. I wasn't screened as probably having Asperger's Syndrome until January 2014. For me, at least, knowing has been fun; by comparison to my physical disabilities, AS is great. If I had known earlier in my life, maybe it would have caused me to give up trying so hard. I can't say.

Is self esteem something other people can give you or take from you?

Maybe you could consider the idea that YOU can determine your self esteem. Sure, some people might do and say things that might (if you allow it) cripple your self esteem, but that's true of NTs too.

Can you find a way to not let them do that to you, and to respect yourself even if others seem not to?

I am very similar to you. I feel the same way too. Once I found out two and a half years ago, even though it was not a clinical or official diagnosis, it had a profound affect on my life. It really changed how I saw myself. I no longer felt the need to constantly work hard to mask and hide. I still do sometimes but not nearly as much. I was able to relax much more knowing that there is a physiological reason for my issues. It has really been great. So even if I never get a benefit other than the fun, honor, and privilege of being able to be a Special Olympics Athlete, I am so glad to know that I am on the Spectrum and I am able to really appreciate the beautiful things about being on the Spectrum so much more.

At least if I was diagnosed in childhood I would have known why some people weren't treating me as a human being....still got treated bad for being 'weird', 'different' or 'a little off mentally' without the diagnoses. But that certainly is not all people, there are plenty of humans that still see fellow humans with autism or any other disorders as human beings.

I am not so sure the typical 'support' I hear of for autistic kids would have done much to help me....but I am thinking having one of those school staff aid people having followed me around to tell me I am 'wrong' and how to do things like a normal person constantly might have been the case which just would have caused more meltdowns from being overwhelmed, If the help was something like access to a quiet room to go to when I got overwhelmed, being able to take tests in a private room with more time if needed and some actual help from teachers and school staff for the bullying I got rather than them being in on it or provoking it half the time I might have benefited.

As an adult though the diagnoses can be helpful, especially if you need to apply for SSI also perhaps it makes access to some services easier, though a lot of autism groups and things in my area don't require a peice of paper saying you have autism to take part, people who suspect they have it and family still participate in those I guess....have yet to really get involved in any autism support groups and such yet though.

There are pros and cons to labels but yours wasn't the right one you say so it gave you problems. Support you didn't even need. People should look at the person and look at their issues, not at the label.

For a while I thought all my excess struggling and difficulties and what not would just make me stronger so then I could handle anything, and make something of myself in life. Well what growing up simular to that(not knowing I had autism) has only helped screw up my mental health so I can't even function well enough to hold a part time job and even going to college part time after not doing so well full time was too much for me.

The coping mechanisms I learned half of them either didn't work, or later I find out where very unhealthy....like I got used to supressing things and trying to pretend I am ok when I am not, at the age of 15 I rationalized suicide might be a good way to 'cope' because I couldn't take feeling depressed, useless, worthless, excluded, disliked ect.....well can't say my mental health and functioning abilities have improved since than though I developed PTSD from another incident a few years later so I can't say my bad mental health is purely a result of growing up without knowing about the autism and having understanding but that did contribute as well. But it seems in your senerio you where able to handle growing up without it acknowledged maybe you had a disorder and having to just cope and somehow where able to figure out how to survive independently....so guess some people handle that and learn to adapt and some end up with not so great mental health.

Interestingly enough I can never say I said to myself 'wow I think I will allow this persons nasty behavior and words towards me effect my self esteem' I kind of doubt anyone else has either. Thing is years of being called 'ret*d' and other names like that and getting endlessly picked on and bullied effected my self esteem whether I wanted it to or not.....I could try to disallow it to bother me as much as I wanted and didn't work. Also that sort of wording almost puts the blame on the victim of that treatment for having their self esteem crippled, rather then the people actually responsible for the behavior resulting in the crippled self esteem.

That said if you know of a way to prevent things like that from having a negative effect on self esteem....do share, I am sure all of us here who have struggled with damaged self esteem would love to know your trick. Just my imput though....sorry to jump in lol but post caught my eye.

I can't say that I handled growing up, I survived it. There is a big difference. It's only now that I know that I am on the Spectrum that I am starting to handle things more rather than just surviving them. But not knowing I was on the Spectrum really forced me to develop a very strong survival instinct. I had regular suicidal thoughts since the age of ten but my survival instinct never let them become more than thoughts. Some even became plans but that was the extent of it. I still have that happen but not nearly as often as before. So in that sense not knowing did make me stronger. But I am still pretty screwy mentally and emotionally and I think like with you, developing non traditional coping mechanisms did mess me up a bit. Fortunately I have always loved sports and physical activity so that is at least one healthy coping mechanism I can use when I want to "get away". But I have later learned that some of my other mechanisms are not so good and maybe not so healthy. But when people tell me that and challenge me on how I cope, I just remind them that they were not there for me when I needed help developing my coping strategies so I am just doing the best I can do and unless they want to actually help me they can keep their opinions of what they think of my coping mechanisms to themselves. The fact that I survived this long means that even though they may not be the best ways, they kept me alive so that's what matters. And if my coping mechanisms make others uncomfortable I have come to a point in my life where I simply don't give a rat's petoodies.

Ah that makes sense, I sort of misunderstood the first post, thought you more meant you handled it and now you're doing well in life, without a bunch of mental turmoil. I unfortunatly actually did attempt suicide at 15, and since then I have come close to attempting again.......but I've gone to the hospital or was able to convince myself otherwise since the time I was 15 when that happens. I used to like reading a lot, and so I spent a lot of time doing that as kind of an escape from things....instead of worrying about when another kid was going to come and pick on me for something I could go into the world of whatever book I was reading. Of course that PTSD later on for some reason destroyed my intrest in reading for the most part and since that I've had trouble being able to really focus when trying to read. I was into music too though and so that became more of an obsession, I still feel like I can't live without listening to music fairly often, then of course I tried drinking/drugs, therapy, psych meds and some things help a bit, some things especially various psych meds and past excessive drinking have certainly not. At least I haven't had a bad reaction to the trazodone and diazapam I am currently prescribed.

But yeah I guess on one hand I have survived as long as I have....but sometimes I get sick of just 'surviving', but I am sure you've had that feeling as well.

a lot of me is unchangeable or adaptible... so trying all my life to be and do something that i have never been capible to do, has been torment, and has only added to the depression that i have so commonly now. and finding out what was fact about me, opened a door for communication, and understanding, and finding coping ways that actually worked! my whole life has been intensly in the "cant be good enough, and cant even be mildly okay enough" and never being able to reach those expectations from others, including from school kids, daycare kids, kids in the neighborhood, kids parents, my teachers, therapist, hospitals, doctors, and the list is quite an extensive one..

At some point, being diagnosed in childhood will generally be a good thing.

At least today there is growing awareness.

When I was diagnosed it was the greatest thing anyone could have done for me. To understand that I wasn't an 'escaped mental patient' (what the kids in my old primary school always called me). I was given help, I was put into a private school that only had children with autism/aspergers and could offer me the help I needed and knew how to deal with meltdowns and my needs. I was in a school that was small (the size of a large house) and had a maximum of 6 students per class and a minimum of 3 teachers/LSAs per class.

I was given therapy and (my favourite) music therapy. I was given plenty of one-to-one sessions. Teachers were now understanding and went at a pace I was comfortable with, I wasn't ostracised because of my strange habits and behaviours like stimming because the people who were in my class were people who were on the spectrum.

And more importantly, my parents were offered the help they needed. All those years of the teachers and doctors blaming my parents and calling me slow and misbehaved due to my behaviour (we used to live in a small town) had stopped and my parents finally knew it wasn't their fault.

I'm in college (I'm 17) and get help. I have a learning support assistant next to me at all times whilst in college. I think that if I was never diagnosed I would have never been able to get through secondary school and would have never gotten into college but because I was diagnosed, I was given help. Help and support.

In fact, I'm more than a little resentful that I was never diagnosed at a much younger age because the town I lived in was stupid and thought that not talking until 5, using diapers until I was 6, having meltdowns 24/7 etc etc was because I was a little slow and that it was mainly my parents fault! If I was diagnosed earlier, I reckon I would being doing a lot better than what I am doing now.

Now please, tell me again how being diagnosed isn't great.

I think Coda says it all. For people like me who may not have needed support, I still think it is great for someone to explain that you are the type of human being who does things like this...