[theperfectpearls]

I feel like I'm intruding here! But I don't know what to do...I would like to ask, in the most respectful and appropriate way I can, for some advice from anyone living with autism. I just scored 36 on the Autism Quotient Test. I went there on a hunch after I noticed a lot of similarities between me and a book character living with an autism spectrum disorder.

I'm afraid to talk to anyone about this, because I'm scared of it being true. And why was I never tested for autism? Why didn't I ever put two and two together?

I could be wrong, right? 36 out of 50...that's not like 45 out of 50. That's not like, indisputable proof.

But suddenly a lot of things add up...I'm way behind my friends in the relationship department, and I just now want to look for a romantic relationship with a man and I'm in my mid-20s. But things have to be a certain way, and sometimes I panic for no reason. I don't like to be touched, but I want to be touched...this doesn't make sense...ok, I want to have intimacy, but it makes my skin crawl when a guy touches me or comes too close and when I feel like I'm not in control of what's happening. I know this isn't normal. I've never had that right response to a guy who's wanted me. Autism or not, what do I do? When I find that person I'm actually attracted to, will it still hurt when they try to touch me or make me panic when they come into my space? I don't want to be alone forever.

[mgran]

Hi there.
I've got some autistic traits (according to my pdoc) and my son has asperger's. All I can say is that if you discover you do have an autistic condition, it's not the end of the world. You're the exact same person you were before diagnoses, but you'll have more information about yourself to help you in life.

There are groups for autistic people in most towns, and many autistic people are very succesful in their chosen careers. My son would never have been born if I hadn't fallen in love with his father, who has asperger's syndrome. The fact we split up had as much to do with me as him... it is possible for someone with asperger's or autism to find love and have a relationship.

It might be worth finding out if you're on the spectrum, because if you are then there's help available. And don't give up on the idea of love just because you're "behind" your friends. Folks I know on the spectrum generally start out later, but don't go through as many one night stands and empty relationships as others.

How old are you? There's plenty of time to meet someone, and for it to be the right someone.

Don't get depressed about it, just use it as a tool to understand yourself. That would be my advice.

[Callista]

Hey, don't panic. I've been autistic my whole life, and it's just normal for me. As far as the world's concerned, no, I'm not normal; but this is MY normal, and being normal according to society would be abnormal for me. Does that make sense? You have to be who you are, not who the world says you ought to be.

All you'd be doing, if it turns out you're autistic, is putting a name to what you've always been. Still the same person. Plus, at your age, at your level of independence, you may not even need any outside help. You can only be diagnosed with autism if there is what they call "significant impairment"--i.e., you take a lot more effort to do things; you need help with things; you need technological assistance, etc. Lots of people who were in their childhood diagnosable are not now diagnosable because they have learned to cope; but they often still identify as "autistic" because they have the same neurology and interaction style as people who are impaired and can still be diagnosed. So the autistic community includes both types of people.

Another thing: The AQ test is a good screening test, but it's still a screening test. That means that if you give it to everybody in a population, you might get, say, one in ten people testing positive, when one in a hundred people are actually autistic. Screening tests are meant to detect when it would be sensible to look into it further--they're not a definitive diagnosis.

Question: Are you asexual? I am asexual myself and have often talked to other asexuals who basically explain, "Yes, I want intimacy. I want to cuddle. I want to talk for hours and go on picnics and do all of the mushy romantic things that couples do. But... I don't want to have sex. Sex is overwhelming, gross, or just plain boring. It's just not my thing." If that is the case--if you want romance, but not sex--then that is actually a normal variation. (Some asexuals want neither sex nor romance, of course.) You may look at AVEN (asexuality.org) if you are interested in the concept. And of course there's the "demisexual" idea... weak sex drive, not much desire for physical intimacy... It's all a spectrum, really.

And then there's the possibility that this is a sensory issue. You might research sensory integration disorder; that's a very common component of autism, but it can also occur on its own. People with this particular issue tend to be overwhelmed by information coming in through their senses because they can't filter it properly. The best way I can explain this experience is that it feels like opening up too many programs on your computer--things just slow down and get stuck and you can't do anything until you close some stuff (i.e., get away from some of the sensory input). Most people can just shut out the stuff they don't want to pay attention to, but not people with sensory-integration disorder. This can cause problems with intimacy because physical touch can be quite overwhelming. In general, the solution seems to be to make it quite predictable, and to communicate--a LOT--with your partner so you can make it enjoyable for the both of you.

[theperfectpearls]

Wow, thanks for getting back to me about this. You might be onto something with the sensory integration--interpretation?--thing. I'm learning new things about myself and my ways every day. I need to know the rules for touching, and what I'm supposed to do in response when someone touches me or stands close to me. No one ever told me what I'm supposed to do, and there have to be rules about those things or else how am I going to do it right? I don't know what to do, I never have, so I panic and instinctively shut down, both emotionally and physically. I get flustered and dizzy and I have to put distance between me and them, and I get upset and angry and want to cry. I know the rules and standard procedures for everything else, like work and responsibility to my boss, and I always finish a job once I've started it.

I don't lie, or make fun of people, or ignore polite greetings or handshakes when I am meeting someone, because I know I have to because it's a rule. I tell the truth, and I don't cheat or break the law or gossip. Those things are wrong things. I don't like to hug family and friends, but I have to because it's the right thing. I'm polite back because it's the right thing. And so on.

I want to have sex, actually, so the asexual thing seems off to me. I didn't start developing the desire to have sex with someone until my 20s, like I said. I don't think I'd like kissing though, or hand holding, or having to cuddle with someone. I don't know the rules for when to do that and even why. Why do people hold hands when they're just walking around on the street, instead of just when they are talking specifically about love? Why just start kissing randomly, and how do they know when to keep going or stop or talk about it?

The thought of a boyfriend just touching me on a whim, with no warning or logical reason, makes me panic. The proximity thing is the worst, though. I know to just stand there and act relaxed when a family member comes to hug me or touch me, but the thought of a guy getting too close in my space, assuming he can just get up in my face...it makes me furious and I see red.

What guy would be willing to do things the way I have to do them when I'm this way? Plus now, I'm in my mid 20s and all the girls--women--my age are experienced in doing all the things guys want and can do them without freaking out at the drop of a hat. Why would a guy put up with all this weirdness when he can have a--sorry--normal girl who doesn't need a manual to figure these things out?

quote=Callista;1725081]Hey, don't panic. I've been autistic my whole life, and it's just normal for me. As far as the world's concerned, no, I'm not normal; but this is MY normal, and being normal according to society would be abnormal for me. Does that make sense? You have to be who you are, not who the world says you ought to be.

All you'd be doing, if it turns out you're autistic, is putting a name to what you've always been. Still the same person. Plus, at your age, at your level of independence, you may not even need any outside help. You can only be diagnosed with autism if there is what they call "significant impairment"--i.e., you take a lot more effort to do things; you need help with things; you need technological assistance, etc. Lots of people who were in their childhood diagnosable are not now diagnosable because they have learned to cope; but they often still identify as "autistic" because they have the same neurology and interaction style as people who are impaired and can still be diagnosed. So the autistic community includes both types of people.

Another thing: The AQ test is a good screening test, but it's still a screening test. That means that if you give it to everybody in a population, you might get, say, one in ten people testing positive, when one in a hundred people are actually autistic. Screening tests are meant to detect when it would be sensible to look into it further--they're not a definitive diagnosis.

Question: Are you asexual? I am asexual myself and have often talked to other asexuals who basically explain, "Yes, I want intimacy. I want to cuddle. I want to talk for hours and go on picnics and do all of the mushy romantic things that couples do. But... I don't want to have sex. Sex is overwhelming, gross, or just plain boring. It's just not my thing." If that is the case--if you want romance, but not sex--then that is actually a normal variation. (Some asexuals want neither sex nor romance, of course.) You may look at AVEN (asexuality.org) if you are interested in the concept. And of course there's the "demisexual" idea... weak sex drive, not much desire for physical intimacy... It's all a spectrum, really.

And then there's the possibility that this is a sensory issue. You might research sensory integration disorder; that's a very common component of autism, but it can also occur on its own. People with this particular issue tend to be overwhelmed by information coming in through their senses because they can't filter it properly. The best way I can explain this experience is that it feels like opening up too many programs on your computer--things just slow down and get stuck and you can't do anything until you close some stuff (i.e., get away from some of the sensory input). Most people can just shut out the stuff they don't want to pay attention to, but not people with sensory-integration disorder. This can cause problems with intimacy because physical touch can be quite overwhelming. In general, the solution seems to be to make it quite predictable, and to communicate--a LOT--with your partner so you can make it enjoyable for the both of you.[/quote]

[scrambled mother]

I also am in my mid 20's. I belive I have aspergers but because I am A girl and blah,blah,blah...The doc's I've seen.....,we'll lets just say we didnt see eye to eye. I also can not stand to be touched. I wanted to be touched but I would almost jump to a sort of "life or death" mode. I had to resist my instints of jumping away. I have found a man that I can Let touch me and his is aware of the fact that I can only have it when I am ready for that sensation. If he needs to have that closeness for his sake, well then I compromise and bare through it as long as we have a time limit. and thats okay with him. 10-15 minutes and he's off. (this did take time to do) I have 3 children, and honestly, they are they only people i have ever met in my life that don't bother me at all. Now that the bigger kids are becoming actual people rather than lil babies some stuff they do is starting to get to me, but if needed, the feeling passes.Wierd I know. But all in all, just wanted to say, dont give up, you never know when someone will come along that dosent mind. Try and practice touching people.someone close to you that you trust. a sister,brother,friend, but just have then hold your wrist till you cant take it. Then next time maybe you will last a little longer. Everyday just practice being the way you hope to be

[theperfectpearls]

Originally Posted by scrambled mother

I also am in my mid 20's. I belive I have aspergers but because I am A girl and blah,blah,blah...The doc's I've seen.....,we'll lets just say we didnt see eye to eye. I also can not stand to be touched. I wanted to be touched but I would almost jump to a sort of "life or death" mode. I had to resist my instints of jumping away. I have found a man that I can Let touch me and his is aware of the fact that I can only have it when I am ready for that sensation. If he needs to have that closeness for his sake, well then I compromise and bare through it as long as we have a time limit. and thats okay with him. 10-15 minutes and he's off. (this did take time to do) I have 3 children, and honestly, they are they only people i have ever met in my life that don't bother me at all. Now that the bigger kids are becoming actual people rather than lil babies some stuff they do is starting to get to me, but if needed, the feeling passes.Wierd I know. But all in all, just wanted to say, dont give up, you never know when someone will come along that dosent mind. Try and practice touching people.someone close to you that you trust. a sister,brother,friend, but just have then hold your wrist till you cant take it. Then next time maybe you will last a little longer. Everyday just practice being the way you hope to be

Thank you, thank you, thank you!!! There is hope after all. If you can do it, so can I, right? I spend a lot of time around kids too, I teach middle school and my 6th graders ambush me for hugs...high fives...just crowd around my podium in general...it's ok most of the time too. My instinct though, with men especially, is to back away. Wrist, you say? I will give it a try. You're right about another thing, too--there are a couple people, like my granddad, who I am always ok touching. But I'm coping with OCD, so there's even fewer people who I will eat after, or let eat after me, or shake hands and not immediately want wash my hands for germs. I guess I know they have germs, too, but I love them enough to take a risk?

Does it make you antsy and just itching to jump away when people touch you, or try to hold onto you? Does that ever go away?

[unico]

I also am autistic (and female). I wasn't interested in the potential of having sex until my mid-twenties, though I also started having zero sex drive about the same time (for physiological reasons -- my testosterone levels are low, for one). Maybe you could read more books about autism, especially as it manifests in females? A lot of doctors still don't know much about autism in adults or females, let alone both.

[unico]

I would recommend the books:
Congratulations! It's Asperger Syndrome by Jen Birch
Aspergirls by Rudy Simone
Asperger's and Girls by Tony Attwood
The Complete Guide to Asperger Syndrome by Tony Attwood
Women from Another Planet? by Jean Kearns Miller

I have read all of them and found them really helpful. Some I gave to my best friend who is also diagnosed with autism (she was diagnosed after I thought she was autistic and taught her about it and she sought out an expert).

[CantExplain]

Originally Posted by theperfectpearls

I want to have sex, actually, so the asexual thing seems off to me. I didn't start developing the desire to have sex with someone until my 20s, like I said. I don't think I'd like kissing though, or hand holding, or having to cuddle with someone. I don't know the rules for when to do that and even why. Why do people hold hands when they're just walking around on the street, instead of just when they are talking specifically about love? Why just start kissing randomly, and how do they know when to keep going or stop or talk about it?

I didn't know the rules, but my GF didn't know the rules either. It was fun working out the rules together. We made our own rules, and that was good too. And now we've been married for 25 years.