"You have Aspergers? You must be very high-fuctioning."

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When people tell me, "You have Asperger's? You must be really functioning," I get really annoyed. I usually say something smug like, "Well if you knew anything about Autism you would realize that, BY DEFINITION, Asperger's IS the HIGH FUNCTIONING END OF THE SPECTRUM!! !" Unfortunately I have not had the guts to say it out loud yet. I also ask them how they would feel if someone told them, "Your kid has Autism? Wow, he must be really low functioning!" One day, I hope to actually articulate that one as well loud enough to actually be heard. Yes, thank you Captain Obvious. I would have never known I was high functioning had you not found it necessary to point it out to me.

I do understand where they are coming from, you know, not realizing that someone with Autism can actually walk and talk and wow, even eat on her own, and, OMG, drive a car and have an intellectual conversation. I usually, and I actually do say this to them out loud, recommend that they come to WP to learn that may of us do function as actual human beings and that they take the time to educate themselves on what Autism actually is and how it actually works.

My family even my psychologist is famous for saying that even though I'm diagnosed as level 2 I some how have mild. autism. I we'll then if thinks its mild I'm still going to say moderate.

So true!! !

What does "Grok" mean?

I found it way too complicated to explain my / my kids complex world to people. None replied like they would understand or even accept what I said. It feels like another failure not being able to explain properly. I just tell (only if I have to) the diagnosis and don't bother to add any more information. To me it looks like people trust movies and news more than first-hand account. They believe what they want to believe. I don't discuss and accept any reaction, its not their fault, they just don't have a clue and never will.

You are right that they are trying to be supportive. I do try to remember that even though I get annoyed. And I also noticed that people always bring up a friend or relative on the Spectrum or a friend or relative who teaches Spectrum kids. That is one reason though that I think they should educate themselves since everyone seems to know one. I would love to see your brochure. It sounds great.

No one has ever really told me anything of that nature, so I can't speak for myself in that regard. If they did, though, I'd shrug it off (and/or maybe get down about it later on.) I certainly wouldn't get combative about it.

I also bang my head against walls when I feel frustrated. The difference is that I'm able to control the intensity somewhat, somehow. I've had many outbursts on subway trains. My threshold for getting frustrated seems rather low for most.

I'm waiting for the blood test to come out, because my autism appears so 'mild' that almost no one believes me and sometimes I am still not 100% sure myself. It's especially frustrating trying to explain my supposed AS to people who have no idea what autism is in the first place (or a terribly wrong idea). It really requires a handout or pamphlet and I'm no good at explaining it.

The best confirmation I have is that the more I learn about AS and the more autistic people I get to know, the more boxes get checked off.....because there's almost nothing I've learned yet that doesn't fit. Another is that my husband (who is definitely AS) thinks I am also AS. It feels good to finally be understood in AS terms by someone who knows.

Back to the 'mildness' of it - I have a successful career, own a home, live independently, and though I have torched a thousand potential friendships I have been able to maintain several very good lifelong friends (the only ones left are the ones who can tolerate my neglect). Though my AS has not 'disabled' me per se, it has made accomplishing all of this much more 'difficult' and exhausting for me than it shoulda been. Can you even have AS and not be disabled? I can!

I get that a lot too. I have often been told, "You are not really that different from other people. (meaning NT's)" That really bothers me. I know they mean well and are trying to encourage me but I had to explain to them that being "Not that obviously different" is actually a huge part of the problem. If I had Down's Syndrome or if I was mentally ret*d I would not be expected to be able to negotiate sensory input and other things that I struggle with as well as an NT. People would accept that the things that I struggle with are real, genuine struggles and that I am really seriously affected and impaired by them. But many people don't and I have actually had people angry at me for my responses to sensory overload and sensitivities or for having pendantic speech or for having trouble understanding them and not having proper reciprocal speech. I have had people yell at me because I had trouble with large motor movements and walked too slowly for them. I have had people yell at me because I took them literally and did something in response to that that I should not have done. I have had people break their friendships with me because I have a strong child side and that annoys them because they feel I should always function at my chronological age. I have had people yell at me and say, "oh, that must be one of your Aspie things, you just need to stop acting like that." I have had people discipline me and criticize me for not being able to stop a meltdown and they were mad because I embarrassed them by having a meltdown that they caused.

I do have much compassion for LFA people and people who have it harder than I do because I know how hard my life is so I can only be compassionate for someone who might have a more difficult time. But I think that the parents of LFA's who complain about HFA's should also realize that as hard as their kids have it there is one thing their kids have that we will never have. That is the ability for someone to look at their kids and immediately recognize that here is a disabled person. With us, sometimes we have to argue and fight just so that people will be willing to recognize that we are impaired at all and give us a bit of a break when we need it.

Is there a blood test? I 100% believe you that are on the Spectrum if you say you are. I just had never heard of a blood test to determine that. I think it is great that there is one. I wish you the very best that you get the results you need.

Pretty sure you are referring to KingdomOfRats.

Offhand I don't know. The criteria may have changed with the DSM-V, which takes into account support needs rather than IQ. KoR would probably be a level 3 according to the DSM-V. Most UK places still seem to work with the ICD-10 and that I know less about.

I'm agreed there's no way that KoR comes across as having an IQ of 70 or lower. Tbh, she seems brighter than half the dimwits I come across on the internet. She obviously has severe problems, but thinking clearly doesn't seem to be one of them.

That is great that you can control the intensity. Sometimes I get really worried that I have caused permanent brain damage. But fortunately the part of the Dx that tests for that did not pick up on any. That does not mean that there could not be some somewhere, just that it did not find any in that particular test. I try to do my best to avoid situations that will cause me to headbang because it can get pretty serious with me. But sometimes it's impossible to avoid the situations.

NiceCup, You are so right about KOR. She is an amazing young woman who manages to do so much for the Autism cause. She does more than I could even hope to do. I miss her very much. I hope she is okay.

No, there isn't a blood test for autism yet! I say I am waiting for a blood test - just hoping that they will have one soon.

But they are working on one. Here's an article about what they have going, so far:

Autism Blood Test

EDIT: Thank you for believing me Skibum

Last edited by EmeraldGreen on 21 Dec 2014, 1:09 pm, edited 1 time in total.

Oh, I see. Well, I will join you in the hope that they will be successful with that!