Are there distinct stages people go through after diagnosis?

[WereBear]

I am a Meyer Lemon. Because I am so sweet.

 

[CoffeeCat88]

I felt basically the same way that you described. It's great to have a reason, not an "excuse," for being weird and different. But I don't really want anyone to know, because I think they'll judge me for it, or that I will use it as an excuse for getting out of work. So, I keep quiet.

 

[Mia]

Maybe @Mia is there now.

Not a person who can be all that calm, the closest I've come to transcendence was dating a quite good pastry chef in my twenties. Imagine waking up in bed to behold an exquisitely perfect cream and strawberry pastry on the pillow beside youNow that was transcendent.

 

[Full Steam]

The trick is to be happy being a lemon.

There is no lemonade here. Im not making any.

Accept the lemon.

Be one with the lemon.

The ultimate truth is; there is only lemon.

Also, there is no lemon, and our lives are squeezed and twisted in the bitterness between citrus dimensions.


Or something.

 

[Full Steam]

I felt basically the same way that you described. It's great to have a reason, not an "excuse," for being weird and different. But I don't really want anyone to know, because I think they'll judge me for it, or that I will use it as an excuse for getting out of work. So, I keep quiet.

I was just thinking of this.

Eg. You cannot really know me without knowing I am autistic, and a little about what that means, but I'm not going to tell you as then you'll know too much about me.

I think I have to work out how to drop the shields more. The world should deal with me in the raw, exactly how I am.

 

[atrocityexhibition]

I don't think everyone follows the same stages, but I know that I thought I'd totally adjusted to my diagnosis years ago. Yet here I am years later, still learning things about myself. Still "progressing" in my ability to blend in with NT peeps. Embrace the phases.

 

[SpaceCadet]

When I was diagnosed I had a hard time. Although I'd long suspected I was autistic, the "official" label seemed a tremendously heavy burden. I started to look at literally every activity in terms of "oh I can't do THAT... autistic! "Well, I can't date... don't even bother... autistic." "I can't apply for a job... well, not successfully anyway... autistic." With the jobs however I need to keep trying, or at least go thru the motions, because I do need the money. (I'm on disability for an unrelated, purely physical problem, but I've fallen slowly into debt.) I don't seem to be following the usual "stages" on this: for instance I never at any point felt any elation about "not being alone" and so on. But I think eventually, I'll have a relatively minor success and begin to snap out of this fatalistic depression. (??? - I hope!)

 

[Sashi]

I found that at first I was quite elated. I wasn't a lone nutcase anymore, and I had a name for why I was always different. At first it was wholly positive.

Then I started feeling uncomfortable with a label, and applying one with such weight to myself felt really weird.

Then as I read more, and saw how society treats autistic people I got really pissed off. It's unfair and moronic for the world to label and marginalise people who could make amazing contributions to life.

Next, and since I am self diagnosed, and since there is a small chunk of my brain that's an absolute dick head, I then experienced a lot of thoughts like "well maybe you're not anyway", "how do you know for sure?"

I've just been going through a stage where I've been trying to drop a lot of the things I do to "pass". This is the "screw you guys, my people are on the internet" stage.

These have been distinct, in that the came up and faded, but they now all exist to a lesser degree.


What comes next I wonder?

 

[Sashi]

I hear ya loud and clear! I am self-diagnosed and am 58. It was seven months ago when I learned what "it" was. I don't have thoughts any more of being an alien from another planet that got left behind. That's a good thing.

I have been going through stages. I think I just entered the "not going to pass so much" stage. I started stimming by jogging in place. I stopped hiding it from those I live with. I don't care if they catch me out on the patio deck at 4 a.m.!!! HA!

Like you, I wonder what stage comes next.

 

[JoyChaos]

waiting to be formally diagnosed but the stages i have gone through was extreme interest, happiness because finally a word to describe what i felt since i first became self aware. anger because my parents or school failed me.

 

[Fridgemagnetman]

Be one with the lemon.

The ultimate truth is; there is only lemon.

Also, there is no lemon, and our lives are squeezed and twisted in the bitterness between citrus dimensions.


Or something.

For the dyslexic aspie- you're not left out.

There's nothing wrong with being a melon.

 

[Full Steam]

For the dyslexic aspie- you're not left out.

There's nothing wrong with being a melon.

I sometimes laugh at your posts while not completely getting them.

I like tinge of mystery.

 

[ilovetochat87]

When we talk about random social stuff, my husband's go-to phrase is "well, I've given up on the world. I only want to get along with you." That's when I know he's not up for a discussion.

When he's feeling happier, I try to bring whatever it is up again. Like one time, it was nearly mother's day and he didn't feel like greeting his mom. I just asked him again on the day itself and he was happy I reminded him so he can text both moms.

It can go from one way to the other with him (and me too, on other issues) so we just give each other space. Mood has a lot to do with it, I've found. Certain things remain the same, but when it comes to being patient with other people and "blending in", it depends on whether I have the energy for it.

Labels would be okay with me if it was there for the sake of efficiency. We call NTs like so after all. What's a bother is when there's an imaginary person fitting the autist image -- as in someone to disregard.

The part about this that caught my attention was the mood I think you're right . I definitely agree that sometimes it has to do with the You're in that causes some of the phases I mean when I was first diagnosed at 15 I'm 28 now but , when I was first diagnosed I finally felt fresh and free and I finally understood why I did all the things I didn't get and it was kind of hard to hear the diagnostician say well Daniel she's not gonna want to do this and she's not gonna want to do that and she's never gonna like this and he's never gonna like that and if she does it won't be until a lot later in life should probably live with you forever they don't usually move out until way late in life and sometimes they don't. I went for a long timeall of high schooltelling myself I can't and I won'tand I had my dad always saying you cannot you just don't know because you never tried and I'm likethe doctor said I won't like this and I won't like that and I won't be able to do this or thatand I know that numbers are hard for mesoI take it very seriously it's very difficultand so far no one's been able to help me with that no one knows how so maybe there's just not a way to help me with that maybe I just can't do thatand my dad said I was always making excusesfor my disability and using it as a crutch instead of sayingthis is hardyes, butI want to learn how to be able to do that so I'm gonna defy the oddsand do that. My dad wanted me to be like Temple Grandin we didn't know to Brandon at the time souse different analogies butexactly how Temple Grandin was shehadthings that shewas bad at doing and somethings shewas afraid to do etc. etc. and she learned other ways around themand I was not that kind of a person.I said well if I'm not able to do this then I'm not gonna bother because there's no pointandwhen I got to be an adultand I started to get disability servicesthat was difficult because they didn't want totalk to me on the subject I was too high functioning because as I got older I became more and more high functioning and less and less aspergers symptomsand thegovernment said I was too high functioning I didn't qualifyany longer on enough of a level qualify for disability services like Social Security income and housing assistance etc.

 

[ilovetochat87]

and we spent seven or so years fighting as I was a late teenager like 18, 19 and I think by the time I was 24 they finally approved me but I just barely just barely made it and they tried telling me that I was an IQ of 69 which was I believe one up from being mentally retarded so I was like borderline MR according to what my records say but on the other hand there was a lot of areas where I was way high functioning and that MR did not fit I was kind of like teetering on the line of borderline MR and really high functioning to the point of that not even qualifying for me and he didn't know what to do with me so I have both high functioning aspergers and borderline MR in the same hand even though that doesn't really make any sense you can't really be high functioning and the brilliantly smart and at the same time to be considered any level of them are even closely borderline I just doesn't make any sense so I was very confused with myself and it took a lot of time back-and-forth back-and-forth with tests to kind of make sure that that was the right diagnosis and I would cry sometimes this is not fair why do they have to tell me that I can't do stuff for that I'm not gonna want to do stuff why can't I be normal like an NT ?! And it's not fair that mom has to take off time to be with me when she supposed to be at work and she took off vacation time that she hasn't even earned for the following year that hasn't even come up yet so she'll not have vacation for like 30 years because she's taking every vacation time that she's got and future ones that haven't even happened yet and all that just so that she can come out and take me to my testings because my dad wouldn't do it he's got stuff to do and he didn't want to except it he would always tell me I'm smarter than I give myself credit for and I just let the government take my money etc. etc. and he's like I know you have a mild something but it's not as bad as everybody tells you and you let them fool you so that they can take your money and keep you incapable etc. etc. and so he didn't want to deal with it he wasn't a bad guy he just didn't do with it he thought I was smarter than I was so my mom had to deal with it and I didn't understand why couldn't I just be normal why do I have to be the way that I am and because all this trouble for my mom having to take off work that she hasn't even learned to take me to this and why do I have to have mom and dad fights about me I can't I just be normal and there wouldn't be any fights over me and it's not fair and I'm sorry that I'm such a bother for people and my mom says you're not a bother for me and I said well you have to take time off your life to do this for me and that's not fair you have a life too you shouldn't have to do everything around me I'm not a child anymore I'm not your sole responsibility anymore and it's not fair that I have to do that to you and she says I want to because I'm your mother and I said yes but at the same time there are days when you have other things going on and you're the only thing that can help me and so if you don't help me I'm SOL and it's not fair for me if you don't help me because I don't have any other way but at the same time it's not fair to you to take off time from what you're doing when you're having fun in your doing something important that you loveto come and help meit's okay it's a lose lose it's a Catch-22 and it's not fair. and I questioned all the time why God made me this way and put me in this predicament. And then there are days when I have to remind myself be thankful that I am not low functioning and that I don't have to live in a group home with other low functioning people that I get to live on my own and that I can pretty much take care of myself with only minor help such as paying my bills because I get my money kind of messed up for not paying attention and I got denied driving by a driving expert who teaches people with disabilities how to drive and she did it aspergers diagnosis test on me and a vision test on me and your typical driving type test on me to make sure that I'm able to see and pay attention and focus and catch things fast and know what's going on around me etc. etc. on top of that aspergers diagnosis and she deemed that I had trouble with focusing and paying attention in trouble with my depth perception and that because of the fact I have scoliosis I can't turn all the way around behind me to see in my rearview mirror and I would have to have something modified to better see behind me and when we got on the road and actually tried to drive all of that stuff was very very confirmed and heightened more than she thought it would be and she was already concerned about that stuff and we spent six weeks driving and none of those things got any better even though she try different techniques and therefore I just was told sorry driving isn't for you and I got tonight but if I want to try again in the next couple years go for it well reevaluate but she doesn't think it's gonna be any different so I have to rely on people taking me places and that's not fair to people that they have to take time out of their life because I can't drive and it's not fair to me if they decide they don't want to help me because they're doing something else right now but at the same time they have the right to say that. but at the same time I just remind myself I could be worse off if that's the only problem that and paying my bills because I superimpose my number sometimes and causes me to overspend my amount or I understand and I almost got audited one time because I messed up the amount that it look like I had but we got it figured out in time so that's why I have help making sure that I write down all my receipts correctly but otherwise I'm pretty dependent on myself alone .

 

[ilovetochat87]

And I have to remind myself every day and thank God everyday for that that that's all that I have wrong with me and that I have minor social issues but there are days when I get really pissed off because I'm having a clumsy moment or whatever and I'm just overwhelming myself because I can't freaking seem to have a left and right foot I keep seeming to have two Leffie and is driving me nuts what's wrong with me today why can't I be normal and then I start all over again and then I remind myself it could be worse balances the problem that a lot of people have even people without intellectual disabilities it's normal relaxed I could have a worse problem but I have looked up ways to overcome my problems and I can't overcome every problem I have some things are just gonna be a problem that I always have no matter what but I can mind over matter somethings like make my mind think about something else when I get shots or my blood drawn I can think about something else by listening to music or talking to the person that's giving me the shot or talking to my parent that's there with me and distracting myself and then I don't even realize that it's over already you know there's lots of things I can mind over matter with I've learned in there for I don't think about it being a bad thing and I don't question myself why am I stupid why do I have this problem why did God make me this way it's not fair it's not fair it's not fair I don't do that anymore I've learned to see the bright side the Silverlining and everything and I've learned to mind over matter so many things that those are not even problems for me anymore. but there are days when I'm having a bad day no matter what I do my hair she's not doing what I want and everybody has that date but for me it gets overwhelming because I'm kind of OCD about stuff sometimes and when it doesn't do what I want I freak out and I'm like I got 10 minutes before I leave here is not doing what I want I can't handle this and I threw a little mini 32nd hissy fit and then I have to get back on track but for that 30 seconds I'm questioning why do I have to be stupid why do I have to worry about this so much what we have to care what does this have to be such an OCD for me why can't I just be like everybody else and not care and run out the door end when I'm having a bad day a lot of times I revert whatever is going on causing me to do that I revert that back to aspergers even if it has nothing to do with aspergers I always tell myself I'm having a bad day because I'm not as smart as everybody else if I were smart as everybody else then I would've been able to do that and it wouldn't of been so hard and it's all because my aspergers having to Leffie is my aspergers having trouble being able to hammer something in the wall is gonna be my aspergers it's not fair I gotta always find a reason or a way to turn every bad thing that happens in my life into the fault of my aspergers and it's not fair because the stupid light switch is too high to reach and I have to be born short it's obviously going to have to be an aspergers problem and it's not fair if I didn't have aspergers I wouldn't be sure and I would be able to reach the stupid light and it wouldn't be complicated and they would've already done this 10 minutes ago etc. and I just get so upset but when I'm not upset I can have the best day ever if I'm on a roll and everything is looking up and up for me I might slightly trip and then go oh well and move on and NOT have a big cow about it. and I just remind myself I'm clumsy sometimes because I have aspergers that's okay that doesn't mean it's a bad thing that's just the way I am it's gonna be okay and I see this overlining and my mom tells me all the time that she wishes that she were brave like me and that she saw the silver lining like I didsometimes I remind myself how easilythis could be worse but it's not and I think God for that and Istrive to be positive and I even tell my mom you're gonna be okay it could be worse you've got this your depression is not the best of youyou are the best of your depression you're not gonna let it get you you are strong andI am a very good TEDTalker. I could go up and I could say you are the best to you you are not defined by your disability you are not defined by depression you are not defined by diabetes I could go up and just let him have it and I'm so good at that I always encourage people but sometimes it feels like when I'm having a bad day I'm not that person and I don't know how to get back to that and I feel like it's not fair why does my life have to suck why do I have to be born with a disability wish I could drive I wish I could do this or I wish I could do that and it's not fair and I have to say to myself even though I have those problems it could be worse and be thankful for what I can do don't really focus on what you can't do focus on what you can do and be grateful for those things that's what really counts in life and it does depend on the mood you're in . My mom says honey I love your enthusiasm I wish I was like that sometimes my depression gets the best of me and I don't know what to do and I just sit around and wallow and I wish that I was like you saw the silver lining reminded myself of how special I am and that it could be worse and I'm just not that kind of person and I love that you are and you always remind me of that and make me feel better and I say well I'm not always that way trust me and I have to constantly remind myself to be that person but 90% of the time I am I just have that 5% where I'm a little sad now and then and I find a way to turn that into it's always my aspergers and I wish I didn't have aspergers and life sucks.

 

[Soave]

Thank you for this thread. Reading posts that I could have written in exactly the same words to describe my own experience is very validating for me.

I went through all the stages people have mentioned, in the same order, over a four year period. Then the worst of all, I lapsed into a despair and sense of powerlessness that is almost unbearable. I hope there will be a further stage after this that restores some hope, though it feels like this is too much to hope for now.

 

[jamesaldrin]

I think I would've been better having not found out. I don't like having a label that I can't remove. If anyone can convince me to think differently then I would appreciate it.

 

[Thursday]

My mom says honey I love your enthusiasm I wish I was like that sometimes my depression gets the best of me and I don't know what to do and I just sit around and wallow and I wish that I was like you saw the silver lining reminded myself of how special I am and that it could be worse and I'm just not that kind of person and I love that you are and you always remind me of that and make me feel better and I say well I'm not always that way trust me and I have to constantly remind myself to be that person but 90% of the time I am I just have that 5% where I'm a little sad now and then and I find a way to turn that into it's always my aspergers and I wish I didn't have aspergers and life sucks.

Thank you for sharing your experiences. Your mom sounds like a wonderful person and you are as well. You mentioned that there are days when life really sucks and that it feels like you're such a burden...even though my experiences are so far from yours and my relationship with my mom is vastly different, I do also feel the guilt of having to rely on my parents for even basic things. However, I recently realized that this guilt is also what's influencing me to live up to my (actual and percieved) shortcomings.

I've slowly been trying to appreciate the help in a different way. Rather than beating myself up and carrying that burden of wanting to help back, give back, or achieving the same things my parents did (they are both prominent in their fields, but are also very social), I try to be happy with the smaller things I do properly. It may be that I'm just calm today, or that I was able to progress on my personal projects, I do my best to be at peace with that.

Once you've begun to appreciate even the small steps you've taken without weighing them against the guilt, in your case, that your mom is doing her best to help you, you might actually end up doing something for them too. Your mom seems happy to see your enthusiasm after all, and depression may only worsen with the need to be more than your best self.

Lastly, doctors are there to guide us, but even then, they are human and also flawed, like us. You're neither worse nor better than what he said. You can set the bar higher or take it slow if it helps you a little with your depression, one step at a time.

 

[Katleya]

I would say I had 2 different sets of stages, one for the self-diagnosis, and one for the official diagnosis.

So, the initial context, about 8 or 9 years ago, was me feeling extremely frustrated at not being able to fit in, conform, etc. no matter how hard I tried. Then, I found something at random on Asperger's, and there it was, stage 1: I can relate to that, all of that. Call it the epiphany. It was followed by some kind of excitement, but then it was virtually impossible, at that particular time, to get a diagnosis. There was only one structure in the area that dealt with autism, and the psychiatrist there was notorious for her harsh treatment of patients. Plus, the cost was a factor, not going to lie. So it all stopped there. I brought it up years later to a psychiatrist (the one with the antipsychotic medication), but he couldn't be bothered with that. I brought it up again with another one, last year, and it was like I had said nothing, and I felt very, very alone with this, convinced that I had the answer, but no one would listen to it and help me get anywhere from there. I discussed it with my mother, and she somehow found a doctor that seemed like one with a human approach, but I couldn't make the time for assessments because of work, and I was also so freaking scared.

That's another stage: fear that I may be wrong after all, not so much because I prefer to be right, but because if that was not the underlying cause, then I had to accept I was probably an unsufferable stuck-up b..., crippled by some kind of bipolar disorder or schizosomething, and that's not exactly the type of portrait you'd want to paint of yourself.

Post-diagnosis, but I'm only 6 months in, I've been on one heck of a rollercoaster.
There was relief: relief that I was right, that I was neither deeply flawed nor broken, that there were ways to help me with that.

There was validation, and I could finally justify why I struggled so much with so many basic behaviors and things --not because I didn't try hard enough, or in the right way, or because I didn't care, but because I simply had another way of being, feeling and doing, and that was that. Nothing more to it.

There was hope, considering all of the resources that existed. Cognitive behavior therapy! Companies that hire Aspies as consultants! Disability status! Wait, what? I'm... disabled? Says who?

There was despair, and that came out of nowhere, but I suspect it had to do with the fact that I got this diagnosis along with that for EDS, and while both syndromes have a comorbidity, they don't exactly mix well: the Aspie in me would be happier working on my own, but the EDS-sufferer needs a set structure with a salary, as I'm prone to being unable to work often, randomly, and for unpredictable durations. That felt like a life sentence, honestly, because sure, I was aware of new solutions to get by, yet I was disqualified before even trying.

Then came the relief of finding it here, I don't mean to add any mushiness since we've covered that already a few days ago in Jet's thank you post, but gosh, you're probably one of the main reasons I didn't test my theory on whether or not medication is packed in lethal doses, and that was very much something on my mind before I signed in.

As of now, I'm left with a mixture of anger when I think about the treatment we get in society, the poor state of job prospects, the fact that it is truly unfair we're supposed to put in all of the effort (I mean, yeah, I need to open that metaphorical door for myself, but it would help if the NT world on the other side would unlock it), and my natural rebellious state, which was very well summed up by FullSteam's initial statement of "Screw you, I've found my people".
At this point, while I understand CBT is probably beneficial, and I should try at least one session before I form a definitive opinion, I reject the idea that I need to be changed, shaped into somebody else, just so that other people aren't uncomfortable around me. That's their problem, I have too many things to deal with to be bothered with that. It also implies that something is wrong with me, and that I must be fixed. Nope. I'm not wrong, I'm just different. And if there's one thing that I know after 30+ years with analyzing my own thoughts, it's that I will not succeed at something I don't believe is right or good for me.

Oh, and I got the lemon stage wrong: I've also felt bitterness at the fact all that's ever talked about in France when it comes to autism is kids. Don't get me wrong, I'm not jealous, and I'm all for saving every kid that can be from the stuff I went through as an undiagnosed child in the 80s. But it'd be nice if they sometimes considered doing things for adult Aspies and investing time and money on us, because surprise, we don't magically start fitting in the day we turn 18 (at least I didn't. Was I lied to? Is it because I was diagnosed after I turned 18?)


Side note: I came across a one-on-one meeting between an aspiring candidate to the French presidency and a lady, about autism. So I had to watch it, right? Well, of course, she started an association, but she is another one of those people who probably have good intentions, but she's speaking on behalf of something that affects her son rather than her (I mean, she is affected, but indirectly, because she's the caretaker). She was explaining that when her son heard loud or shrill noises on the street, he'd freeze and put his hands on his ears, and that was a bit embarrassing, so she (rough translation) "took him to therapy, had his settings worked on", and now he doesn't do it so much. The way she said the settings thing in French was shocking because it's just one word, and you only ever use that word when talking about machines or devices, not about animals or people, and you'd think the kid was a faulty TV set or lawn-mower. It was dehumanizing. She probably has good intentions, but damn, some of those sounds legit hurt us. We're not doing it for attention or to embarrass you, we are hurt. I can't help but think that perhaps that poor kid is now programmed to not show his discomfort any more, but he might still hear a sound that's painfully loud.

 

[Gracey]

I'd always thought Aspies had super powers. The complete focus on a particular subject, the ability the chase down, retain and expand that knowledge on that subject. unemotional logic for problem solving, seeing most things for what they actually are, the truth of something.
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