(Summary: When some people find out you have Asperger or Autism Spectrum Disorder as a diagnosis, they actually focus in more on your weaknesses. Instead of seeing all the things you’ve done in spite of tremendous difficulty, they only see all the things they want to “fix” in you. Then, because I have studied SO HARD to “fit in normally” and cover up my weaknesses, many other people will outright deny that I could have anything “wrong” with me at all. So basically, the more you try to fit in and the more you succeed, the less understanding or supportive some people will be!!! It’s the opposite of what I ever expected. Let me explain.)
Something very strange happened when I was diagnosed with Asperger syndrome (now Autism Spectrum Disorder). I think it’s important to give a bit of background so you can understand where I’m coming from with this. All through my life, I have had some strengths that other kids didn’t seem to have, and some major weaknesses that other kids didn’t seem to have. I struggled A LOT in ways that would take too long to explain here & now (but I might break it apart into smaller chunks in the future). Life was just HARD. I know, I know, everybody has shit. I’m just telling you, life was a massive uphill struggle for me at all times. We didn’t know why. With it came severe depression and anxiety. College came & I had a huge mental breakdown after the 2nd year that caused me to leave school and come back to my parents.
THAT is when I got diagnosed. Before then, the only thing I’d ever been diagnosed with was depression.
Now I had a diagnosis of Asperger (with ADD and OCD strong enough to be their own diagnosis, but they often clump with Asperger), depression, generalized anxiety disorder, prolonged PTSD, and a dissociative disorder that I was told would never go away (thank god he was wrong on that account — it just took about 2 years). He sent my parents into a state of shock and grief when he told them that one.
So anyway, getting the diagnosis of Asperger was a huge deal. It took many weeks, with both me and my mom and sometimes even my dad coming in to town for the evaluations. The psychologists there took the screening very seriously. I was diagnosed, and the psychologists told my parents that I would NEVER be able to live on my own. That is an interesting thing to tell parents of an adult child, let me tell you.
Back to topic. So the diagnosis. The diagnosis was a blessing for me. It was a HUGE relief. It was the equivalent of TEN THOUSAND weights being lifted off of my shoulders. It was an explanation and reason for everything that I had found so impossible when growing up. It was a reason for so many struggles, so many tears, so much misunderstanding and heartbreak. It gave explanation for everything. It connected the dots of my life in a way I NEVER DREAMED could happen.
I thought it was going to make everything easier from then on. I thought people would be understanding of my weaknesses from then on. I thought they’d cater toward my strengths instead. I thought maybe, too, there would be professionals to help me work on my weaknesses in a concrete way that was already tested for people like me and everything was going to be beautiful from now on.
HA. HA. HA. It turns out, that is not actually what happened. Now don’t get me wrong — my PARENTS did a ton of research and ARE very understanding. Everything with them became beautiful and smooth. ❤ It’s so many OTHER people who learn my diagnosis that have some very unexpected reactions…
NO. EXCUSE. It turns out, a shit ton of people end up believing you need to struggle even MORE in an effort to “work on your weaknesses”. Instead of it being a blessing, it becomes a prison sentence. It turns out that many people are now LESS understanding rather than more understanding. It’s the opposite of what “should” happen, in my opinion.
And the common phrase? “Well, if you KNOW you have problems with [X], then you know what you need to do to fix it.” NO EXCUSE. YOU HAVE NO EXUSE AT ALL where your weaknesses are concerned. All the documentation on this, all the articles, all the “experts” who explain this out. None of it will matter to a ton of people you’ll interact with.
Sometimes, people actually treat you with more respect when they DON’T know your weaknesses in such an upfront way. Otherwise, I think some people feel they need to “FIX” YOU. Like telling them what you’re struggling with is actually a part of the Asperger syndrome or whatever, is like an open invitation for them to step in and “CHANGE” you. I am NOT shy about asking for help when I need it anymore. If I want you to try and “work” on me, I will ask. I really will.
PLEASE stop trying to fix me. I’m in my 30’s! For me, my weaknesses are just a part of me and it’s okay. I have to find OTHER WAYS AROUND THEM to keep up. It’s pointless to try and work on those weaknesses like suddenly something is going to click in me and I’ll be just as functional as other people in those areas… No. And I have my own strengths, too. That’s just Asperger’s for you. Give a little here, take a little here. No big deal.
Oh my god, that’s another thing that happens!!! When some people hear that you have Asperger or whatever diagnosis, they think that GETTING the diagnosis is WHY I behave that way. I never even HEARD of it until I was 22 years old. Trust me, all of you, that getting a diagnosis didn’t CHANGE ME TO SUDDENLY HAVE THE SYMPTOMS. I can’t even tell you how hurtful and disrespectful some people can be. The diagnosis was a BLESSING. It helped me learn to find more work-arounds for my weaknesses. It helped me accept things I had never accepted before and had always hated and felt ashamed of myself for. It showed me that I’M OKAY AS I AM. I AM AN OKAY PERSON.
This is not to say I think I’m perfect as I am and I don’t want to change. I am always trying to improve and work on things. I do want to be “better” at so many things. And I seek professional help when I need it. I just wish the lay person would stop trying to “fix” me and respect me as I am and be okay with me as I am. Let me work WITH the weaknesses, not against them.
ANOTHER thing that happens is that some people will outright deny it. Because I work on myself constantly and have learned SO MANY work-arounds for my weaknesses, a ton of people just outright deny the possibility that I have a correct diagnosis. That is hurtful! It is hard when you open up to someone only to have them blatantly tell you you are wrong / have a wrong diagnosis / “don’t have anything wrong with you”. (First of all, Asperger isn’t something WRONG with you. It’s just a difference. It’s not right or wrong, good or bad. It’s just an explanation for my behaviors and life that fit in with a group of other people who have experienced very similar ways of being/living, and has been common enough to have been put down in words and studied.)
But it denies SO MUCH of the work I’ve done. When you tell me I was mis-diagnosed (again, these are lay people, not professionals), I can’t help but feel invalidated. I have worked VERY hard to try and appear “normal” and function smoothly in life. But it denies the possibilities of all of that time I’ve spent on those things. It denies the possibility that I still struggle greatly with some things. I mean even just things like working on eye contact. I had a therapist work on that with me for THREE YEARS in high school!!! You typically wouldn’t know it anymore! That doesn’t mean it didn’t happen! And allowing other people to pick clothes for me to wear, and relying on expensive hair dressers to choose styles for me and what not. You start to fit in not because of your natural, inborn senses, but because you learn work-arounds. But I’ve literally had someone tell me that because I was looking them in the eye just fine, I obviously didn’t have Aspergers. … I shouldn’t care so much what other people think of me, I know. But I share the Asperger thing SO RARELY in-person, that it’s going to be someone I thought was close to me who then denies such a big part of me from existing.