Did getting diagnosed actually help?

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I got diagnosed at four years old, so I don't know any different. It seems like having the diagnosis isn't helping me anymore. I'm even doubting if it was accurate to begin with. None of the social skills classes or support at school really helps me.

I do just as well on my own. In social skills classes they usually tell me things that are obvious to me. My social skills are poor because I'm usually too tired to socialize properly. Same problem with school work. I'm usually too tired to do it. I try my best. When I stay on task in one class, I lose my ability to stay on task in my other class. When I arrive home I often crash. I don't even go to school full time! I only have two classes per day and I still can't keep up.

My diagnosis helped somewhat, but the challenge and reality is still there.

I know the exact feeling you're talking about. I have a full schedule and no social skills classes, so by the end of the day I just want to curl up into a ball and go to sleep.

Well, I was 49 by the time I was diagnosed, so it did nothing to affect my social skills one way or another, I learned to muddle through socially on my own and did okay for myself all things considered. I was definitely handicapped in that regard, but I survived and managed to forge a career and form friendships and romantic relationships in spite of the difficulties.

Since I grew up before Autism and Asperger Syndrome were commonly known, I had been told all my life that all my social issues were my own fault - that I just wasn't trying hard enough, or that I was intentionally antagonizing people by being quirky and different and not behaving or thinking the same way everyone else did. So discovering that the problem was an actual neurological dysfunction - a physical medical condition, and not flaws and weaknesses in my personal character - was very cathartic for me. After years of having parents, teachers and employers loudly asking me "What the F__K is WRONG with you!?" I now had an answer.

It was also extremely fortunate that I was diagnosed at the particular time that I was, because I was about to end up literally homeless and the diagnosis combined with my age made me eligible for Disability assistance. In fact, while I was going through the process of applying for Disability, I entered a training program to try and develop a new career and was discriminated against because of my disability in the very program that was supposed to be helping me BECAUSE of my disability.

So, in my case, diagnosis was a life saver, though if you were thinking purely in terms of whether or not it helps with dealing with the social handicaps on a day-to-day basis, I don't think anything could do that.

AS shapes the very way that we think from the day we're born, it's the lens through which we experience the world. Behavioral Therapies may browbeat you into behaving in certain ways that make you appear less odd to neurotypical eyes, but that will never change the way your brain is working inside your head, so your impulses and instincts won't change, you'll just be 'acting' constantly and I don't think that's healthy for a person emotionally.

It was terribly destructive to my self esteem growing up, to feel that the person I was naturally was unacceptable, and to be accepted I had to pretend to be someone I wasn't. I finally decided the world could just take me the way I was or kiss my ass.

My diagnosis helped a lot. Finally, there's a name for what I have, for people like me. It gives me clarification as to what was ailing me all these years. I understand now why I didn't fit in and assimilate into American culture like my siblings did. I understand now why I can't seem to keep friends even though I've made a few over the years. I understand now why I'm alone all the time. Of course, I also have AvPD so that, coupled with ASD, just kind of keeps everyone at bay.

Well, when I was diagnosed with PDD-NOS at age 5/6, I wasn't even told about the diagnosis. So I had no idea I was on the autism spectrum at the time. Nevertheless, I did receive extensive social skills training all throughout elementary school. However, I actually got worse over elementary school and into middle school.

As a teenager my diagnosis was changed to Asperger syndrome (despite the speech delay) and I was told about that. I was also told that it represented a form of mild autism, the first indication for me that I was autistic. I actually identified as an aspie, which helped. I felt like I belonged more as a teenager and I improved massively.

I was diagnosed with high-functioning Asperger's when I was 8, and OK it may of helped me get the support I needed but I don't think it helped me emotionally, like ego-wise. I don't think I would have got a diagnosis if I hadn't behaved so unexpectedly on my first day of school. My sudden behaviour was not like me, as I developed typically as a baby and toddler, and it caused concern and confusion to my parents and the teachers, and my parents really wanted to know why I suddenly was behaving like this when I started school, so they had to get me assessed by different psychologists to see what was wrong. They thought I had ADHD and learning difficulties at first, but when I got to about 6 or 7, they discovered I was average with spelling and noted it down. But Asperger's still did not enter anyone's head because I seemed so ''normal'', but when I got a little older I got observed and they found I did have a few social delays, and I finally got a diagnosis of mild Asperger's.

But I have never been satisfied with having a label. It has always made me feel separated from the other people. I know a 50-year-old woman who seems to have a lot of Asperger's traits and struggles at a few things what most take for granted and has stress attacks over small things, but she has never had a diagnosis, so she probably learnt how to survive in this world and has sort of grown to just think she's an ordinary person with a few struggles. Having a label stuck with you from an early age makes you feel like you're not normal, and when being ''abnormal'' means a big shame to you then it does affect the way you feel about yourself and what decisions you should and shouldn't make and so on. I'd sooner not know about this label and just classify myself as a person with learning difficulties, social phobia, stress disorder, depression, and some sort of attention deficit disorder, and just go from there. After all, even with the diagnosis of Asperger's, I still can't find the support I should have as an adult, so it makes me even more unhappy being stuck with the label I am ashamed of AND not even being able to find the right support for it. So I might as well not have the label.

You realize that depression, ADD, social phobia, stress disorder are also all labels? Why makes you want THOSE labels but not AS as well? Why is one of these things worse than the others to have?

Yes, it helped in that at last I finally understood who and what I am and why I was different. That clear understanding helped me to better cope with my issues and in some cases I was able to greatly lessen the problems that occurred, e.g. meltdowns.

I feel your pain. I just feel like I don't deserve to live in this world without being treated like I'm not a human being. We might just be misdiagnosed. Sometimes when you can't accept something about yourself, it means that it isn't true. I also classify myself as a person with social phobia, stress disorder, depression, and some sort of attention deficit disorder. I don't really think I have much learning difficulties, I just have a lot of mental fatigue.

Because they are more well-known. Asperger's doesn't seem to be that much understood, unless someone either has it themselves or has a close relative or friend with it, otherwise they don't know a lot about it and just think you're going to be unpredictable. At work someone has passed it around that I have Asperger's (I do wish I hadn't told the manager that I have it during the interview, or I wish I had told her to keep it confidential), and now a lot of workers are treating me gingerly and assume I'm going to start having a meltdown when stressed or thinking I'm really clever and good at maths and so on. When people know you just have something like depression and a stress disorder, they take you as they find you more, but when they know you have something like Asperger's, they assume you're some sort of ret*d freak, when you are clearly not.

Is mental fatigue a symptom of AS? I didn't think it was necessarily. Like, it makes sense to me that extra effort required to make sense of the world around you will require more effort and make one more tired, but you're not describing that.
I'd get your fatigue looked into by a doctor, one who's not going to chalk it up to AS or another mental disorder that has no virtually no treatment without first exploring ALL other possibilities.

My mental fatigue turned out to be caused by celiac disease, along with a number of other slowly worsening symptoms that took years for me to think of as actual symptoms of something more.

I don't think it is. I think the mental fatigue is the cause of my autism symptoms. When my mental fatigue disappears(it rarely does) all my autism symptoms disappear along with it. I've never had typical symptoms. I'm missing quite a few symptoms and I a have a few problems that aren't related to autism.

Yes,getting diagnosed has helped a lot.I have worked with some really great therapists/autism specialists who have really helped me grow and evolve.I used to be quite confused and scared and lost,overwhelmed and depressed and sensory overloaded.Now I handle things a lot better and am really more aware of the spectrum.I've just been reading about brain wiring,so I know nothing is weird or wrong with me,it is simply my brain and the chemicals and reactions.I can things a lot better,am on medication for depression,which also helps me sleep,so I don't have insomnia anymore.I have become more relaxed about food.I dropped my interests in spirituality and mysticism,which were going over the line and alienating me from people and reality.I am proud of myself and very happy with my progress.I just know that I still have to work on my shyness,so that is what's next.

This sounds highly-unlikely to me (although admittedly I am not an expert).

Perhaps it is simply that your autistic characteristics are more spontaneously-expressed (or simply become more prominent) when you are mentally-fatigued (and are therefore in a somewhat negative frame of mind), and that when you are not mentally-fatigued you don't pay as much attention to them or (due to your temporarily more positive outlook) they are less-clearly expressed in relation to the more outgoing tendencies you experience at the time.

Although I'm not suggesting you are bipolar, your description of the supposed 'variability' of your autistic symptoms can be compared to an experience common among people with ASD and bipolar conditions, in which the expression (and self-awareness) of one's autistic characteristics is more obvious when at a low point in the mood-cycle (being self-perceived (due to a temporary tendency toward paranoia) as highly-apparent to others, or being dwelled on (perhaps disproportionately) as socially-frustrating or as direct and insurmountable obstacles to personal fulfilment, due to the negative nature of one's outlook at the time) but which at high points in the mood cycle may be ignored completely, regarded as negotiable or overcomeable, disregarded as trivial or even regarded positively as integral aspects of one's personality, and which may therefore be less obviously-expressed or perceived as subjective experiences by that person, or simply not the focus of their attention while in that elevated mood and therefore never subjected to conscious assimilation or analysis by them and hence subsequently forgotten.

Frequent experiences of fatigue are common among people with ASDs but to the best of my knowledge there has never been a documented (or clinically-described) case of ASD symptoms that only appear during a subject's low mood states and which disappear (when assessed objectively under qualified observation) when the subject is feeling more energetic. (Indeed, such a hypothetical case would probably not fit the diagnostic criteria for ASDs in the first place).

I don't know what the answer is, but if you genuinely feel that your personal ASD symptoms disappear when you are not in a fatigued condition, I would strongly recommend that you approach your GP and discuss the situation.

Last edited by CharityFunDay on 19 Nov 2013, 6:39 pm, edited 2 times in total.

Agree with CharityFunDay, and from my own experiences, if I am mentally powered-up I can keep most of the aspie traits harnessed. If I'm tired I'll melt down with no control over it.

I think of it like riding a bike (left-field analogy)... NT people are able to just balance and ride along, while those on the spectrum would have to actively monitor, balance, and adjust. If you're tired that feedback loop breaks down, and you fall off the bike. You probably just don't realize all the coping mechanisms you actually use to "emulate NT" until the capacity to execute them drops away. I sure didn't.

After I got my diagnosis I finally felt like I could relate to people about those things that I thought were just me. I got on a disability pension which really helped since I developed worse mood issues and now am even more unable to work than I was before. No one would hire me because of my lack of social skills anyway.

Since my diagnosis I have learned so much about autism and myself and I understand myself better. I might still want to fit in with people but I'm not going to change who I am to be accepted. Autism is who I am and have always been and to change that is like someone saying they don't like who I am.

I can focus on my strengths and usually surround myself with my special interests and work on creative projects all day long.

So, yeah it helped me a lot. I have more confidence in myself compared to how I used to be. Always trying to fit in with a group and getting jealous when one friend would go off and do things with the group and leave me out.

OP, have you ever considered you might have sluggish cognitive tempo? I don't have SCT but I have ADHD and I call myself a sprinter, aka I can use up quite a lot of energy in a short amount of time and then I'm left spent. I could have been more Inattentive ADHD until I developed bipolar, but I still have those energy issues.