To get diagnosed or not?

Post Reply New Topic

Like the title says, I am wondering if i should try to get a diagnosis of autism. I heard that the DSM-V (I'm american) doesn't list aspergers as a diagnosis anymore, and that it just has 'autism spectrum disorder' and under that you can be high or low functioning. Eitherways, all my life i've felt like i was different and that everything was just somehow harder for me than it was for everyone else, or otherwise different. I've always had trouble figuring out facial expressions and body language - only if i know the person well, like my parents for example, can i even begin to figure out joking vs. being serious but even then i don't usually know how i'm supposed to respond. even with the toddler that i babysit fifty hours a week, he's sixteen months and i've babysat him since he was two months old, i still have problems discerning hsi body language and expressions.

I've always been touch and sound sensitive, too - tags on shirts and seams on socks bother me to no end even now, and unless its routine like being hugged before bed i dont like being hugged. But i know that hugging or such is supposed to be normal and not bothersome so i just dont react, i just move away at the first opportunity. As a kid i found being tickled painful but i knew i was expected to not find it painful so i dont remember ever speaking up. I was a very well behaved child, if you haven't already figured this out.

I've always been sound sensitive, as i mentioned. I remember in kindergarten, i think it was, we were being taught about how to use a computer and a chair screeched against the tile floor or something like that and i jumped and covered my ears. Even now i jump at loud noises that, to me, are loud but other people dont startle at. I dont jump cause it scared me or anything i jump cause its loud, if that makes sense at all. Until i started working as a cashier, crowded places always bothered me to no end and to a point still do but ive learned to either hyperfocus or zone out a bit to deal with it. With me, everything i hear is all blended together i dont...ugh whats the word, i hear everything i cant tune things out. In elementary i'd always complain to my mom that i couldn't focus cause the other kids were talking and she'd tell me to tune them out but i never could. At work as a cashier i have to hyperfocus purely on my customer or else that happens even now and i end up having anxiety attacks cause of it.

There's more that i can't think of right now, but that's at least what's off the top of my head. My mom was talking to another one of the cheer moms nearly a year ago - my little sister's teammate's mom - whose daughter has high functioning autism and mom said that a lot of the girl's behavior and diagnosis fit me to a T and thats when they started looking into the idea that i could have it too. I'm 22 and female, though, so i think even if i decide to stretch out on a limb and get a diagnosis it would be really hard if not impossible. I'm older and i'm a girl. That and my parents are the type that unless you've been abused or traumatized they dont think you should have anything wrong with you mentally. I've always struggled with being an outcast, having depression, and having anxiety as well as selfharm and they've always gotten mad, cared more about my then failing grades than me, said its all in my head, gotten mad, nearly kicked me out even when i asked for help. Since they've come up with the idea that i might have HFA they've not been like that but they haven't improved either....i've just done my damnest to make sure they dont hear about any failures on my part. I feel like i have to be perfect or they won't accept me. Like i'm somehow innately not good enough. I feel like getting a diagnosis would help me understand myself and open the door to being able to work on everything, but on the other hand i feel like, just as i've always been told, its probably all just in my head, that i'm probably making something out of nothing. If anyone's managed to get this far, does anyone have any tips or advice or anything? Sorry i'm really long winded...i know people dont like long posts cause no one on other sites replies to my excessively long ones....but if you've gotten this far thanks. Any advice is appreciated, this is something i've been thinking about for a while.

~ KariNicole

Hi KariNicole, welcome to WP. I like your name!

Anyway. it's a shame you did not ask this question 5 years ago because once you have passed 18, being diagnosed in the US becomes tricky. The problem is that if you are diagnosed once you are over 18 you are no longer eligible for a lot of services and resources in this country. Most of the resources are geared towards helping young children. It sucks, I know. There is an entire generation of us older Aspies who feel like a lost and forgotten generation. I can speak for myself on this but I am sure others feel the same way. But at least you are young enough that your parents can clearly vouch that you have had your symptoms before you turned 18 so that can definitely help you.

A diagnosis in this country is also not inexpensive. Depending on your insurance and where you live it can cost quite a bit. I know that when I looked into it for myself I was adding up figures that were getting close to $1500.00 to $2000.00. But like I said, depending on where you are and what resources you may have with your insurance it could be less. One member was able to get a diagnosis for under $500.00 I think.

But you really need to ask yourself what you would want out of it. Do you want it for your peace of mind? Do you want to receive help from outside resources if they can be made available to you? Will it help you if you choose to continue your schooling? These are examples of questions you can ask yourself and I am sure many people here will think of others.

There is also the flip side. Once you are officially diagnosed with something there can be stigma attached to that that can count against you as well. Just having a label could cause people to view you a certain way where they might not have before. But Autism is becoming increasingly known in this country so it might not be a bad thing.

I chose to stay away from an official diagnosis because I am over twice your age and it would cost me more money than I can afford and I would not get any help or services from it. But I have a sort of off the record unofficial diagnosis from a psychiatrist friend who has known me since I was born. There is no official documentation for me but this person has evaluated me and we have come to the conclusion that I knew we would come to. It was really cool because I did not have to tell this person how I was when I was a toddler. The doc was able to tell me! I did this simply for my own peace of mind. Once I was told that I was on the Spectrum by another professional in the field who knew me, I went ahead and looked into it further for 18 months just to know for myself.

So you really need to ask yourself what would you want from a diagnosis and what parts are important to you. How can it help your life and how could it even cause you some trouble. Once you have really thought these questions through then you can make the proper decision that will be best for you.

There are also a bunch of online free tests. I took all of them that I could and many people here have as well. Some have their test result scores posted in their signatures. Some of those tests are really great because they are used to screen people to see who would be a good candidate for a diagnosis. I would take as many as you can just to see how you do. They are not a diagnosis in and of themselves but they can give you a pretty good idea of where you might be in the Spectrum. I found them pretty accurate for me. There was another thread recently where someone asked about these tests and we posted links. I will see if I can find that and post the link to the thread here. If someone else can beat me to it that would be great.

I wish you the very best with this decision and please let us know how it all goes. Hope this helps.

It's purely a personal decision KariNicole.

For myself, having that confirmation that all the personal quirks I had been criticized and verbally abused for my entire life were not (as I had always been told), flaws in my own personality that I could overcome if I would just try hard enough, but in fact, a diagnosable neurological disorder, was a huge catharsis and a weight of decades of guilt and inadequacy lifted from my shoulders. I'm happy to have that official documentation that there's a reason why I'm so different and it's not my fault.

For others, just believing that's probably the explanation for their personal quirks is enough. And some fear being stigmatized or discriminated against if they were to "label" themselves.

Under certain circumstances, it can make you eligible for various forms of public assistance, which can be a life saver (it qualified me for SSI Disability, but only after I turned 50). On the other hand, in my experience, it does nothing to protect you from personal discrimination for your differences, though under the Americans With Disabilities Act it might help protect you in the workplace, from being indiscriminately or vindictively fired.

As AS/HFA is an invisible disability, most people will continue to ignore it and blame you personally for not meeting their standards. If you tell them what your disability is, some will insist there's nothing wrong with you, some will claim Asperger Syndrome is "only a fad diagnosis" and doesn't really exist, or at least isn't really a handicap, some will avoid you, in fear of what they perceive as a "mental illness" and by and large most simply won't have any idea what it means and will continue to insist that you're just being willfully difficult. If they can't see your disability, it isn't real.

Add to that, that in most cases, getting a diagnosis as an adult can be prohibitively expensive. Depends on where you live and how good your Health Insurance is.

Ultimately, it comes down to - how badly do you need to know? What does it mean to you on a personal level? If it's just a casual curiosity, it's probably not worth the expense. But if it's fundamentally tied up in the way you view yourself and your personal need to understand your place in this life and who you are, relative to the rest of humanity, then it might be worth a lot of sacrifice to know, once and for all.

Last edited by Willard on 07 Apr 2014, 8:41 pm, edited 1 time in total.

This was a big thing for me as well. Of course I don't have an official document but just knowing and having professional opinions was enough for me.

And like Willard said as well, there are those people who won't believe you and who will argue with you about it no matter what. You can't do much about them, I just try to avoid the subject with them. But at least you can be more secure in who you are.

Yes, like the second person (i dont remember your name) said, for me its very much tied up in how i view myself. I was always told that i just wasn't trying hard enough or that i was lazy, in effect that it was all my fault, so in that sense to have an official diagnosis would be helpful. Like the first person mentioned, i dont think i'd have any real access to services for it either because as was said most of them are geared towards children. I'm not sure how much a diagnosis would negatively affect me, at least in the short term. I'm a very private person, mostly because sharing personal feelings tends to result in me getting hurt for being stupid enough to trust someone with said personal feelings. I can't picture myself telling my supervisors, for instance, because at least at the moment my potential AS/HFA isn't causing any issues that would warrant bringing it up.

The other posters have done a wonderful job in explaining what you need to consider as you make this decision. I will offer some clarity about the DSM 5.

The DSM 5 subsumed the Asperger Syndrome into the "Autism Spectrum Disorder" diagnosis. There are 3 levels of Autism Spectrum Disorder based on severity/need for support. "High Functioning Autism" and "Aspergers" are widely used colloquial terms.

DSM 5 Autism Spectrum Disorder diagnostic criteria from US. Department of Health and Human Services
http://iacc.hhs.gov/subcommittees/basic ... m-disorder

Here is a series of detailed blog posts about the adult autism diagnostic process that I found quite useful. It spans from starting research towards finding a doctor all the way to after the last session where you get your positive diagnosis (the author was affirmitively diagnosed, so she doesn't write about what happens if the doctor says you don't have it.) Anyway, hopefully you find it useful. For what it's worth, if you can afford it, or you find insurance that covers it, I think a diagnosis is worthwhile if for no other reason than you finally have a legitimate explanation for your problems on paper. Good luck, and welcome to WP

http://musingsofanaspie.com/adult-diagnosis/