Aspies For Freedom

Hi,
I'm a 23 year old female. For a little while now, I have been suspecting that I may have Asperger's Syndrome. No, I haven't seen a doctor about it. I don't expect getting a real diagnosis here, just opinions. Before seeking advice from a professional, I want to make sure if any of my symptoms sound like that of other AS sufferers.

Most of my life I have suffered from depression and social anxiety. I was also diagnosed with ADD when I was 9. I'm generally a shy person and usually quiet in most social situations. I usually like to be alone when getting things done, and I rarely ask for help when I need it. I'm always in my own world, always day dreaming or staying away from others. When I was a child I usually played alone. I also had many odd behaviors like enjoyment with scaring other kids, odd jokes and interests. Most people would describe me as quiet, strange and in my own world.

When I'm with someone I'm comfortable with, or sometimes drunk at parties,  I can be very talkative. Usually I have recurrent topics and speech patterns that I stick with. I have always had a hard time keeping friends for more than a year or two. I tend to start feeling alienated from them and feel too different from them. I like to have few close friends who share common interests, but they start fading when our favorite things to do get old. I have a hard time explaining what I'm thinking or feeling at times. People will often tell me I'm emotionally cold or not responsive to their emotions. I have a hard time knowing how others feel about me or in general. It's hard to let them know what I'm really feeling as well. There's this strange block between me and others, which is more than just nervousness.

I tend to be obsessive with things. I get obsessed with things like music, art, movies, animals, people, ideas and science. This causes me to daydream a lot, and part of what keeps me alienated from others. Sometimes I fiddle a lot with things for long periods of time. I like to wear the same things everyday. The same sweater or t-shirt days in a row. I also get into habits of doing things at certain times. I also don't like it when people come unannounced or what me to leave in a 15 min time frame. I have to eat specific things at certain times of the day. Like I aways have soup for lunch when I work. I hardly ever eat with others. I don't like to be watched eating or siting at tables with others. I always like to know what time it is or the weather. I was always bad at school. I had a hard time listening to things I wasn't interested in.

I also have problems with suicidal thinking. I can feel hopeless or lonely, and sometimes feel that nobody will ever truly know me. I have recurrent delusions that others hate me or are conspiring against me. I always feel people are talking about me at work and criticizing my abilities.

The only person I really talk to is my boyfriend, and sometimes our mututal friends or my family. I don't have anymore friends of my own.

I never really felt like my problems were just depression or just anxiety. I feel like there's more wrong with me. I took the Aspie quiz the other day. I got a score of 163 out of 200 for the aspie traits and a neurotypical score of 51 of 200. I know this isn't the way to get a diagnosis. Do I sound like I might have AS?

Maybe so, maybe not. Welcome anyhow.

I wouldn't rely on the on-line tests for the reasons posted.

Sounds very much like AS to me.

It sounds like you're aspie, but I don't think I've ever got it confirmed after reading a personal story on the internet. If you relate to people with AS you are ofcourse welcome to participate in our communities.

Note that we at AFF think it shouldn't be bad to live with an autism spectrum condition, and we often dislike when people say "suffer from AS". Many of us meet alot more challanges than other people, but we don't view who we are as the problem to fix.

Well hello and welcome. Congratulations on coming here and speaking - this definitely is a place where you can expect some recognition of the life that you find yourself living.

The life you describe sounds in many ways like mine, and I believe that I have AS. I'm awaiting a formal diagnosis. Rather than play the diagnosis game, I would like to just respond in a personal way to a couple of things that you wrote. I sense that basic question for you is perhaps, who should I turn to? What kind of help can I expect to find? Will an AS diagnosis help?

You wrote about scaring other kids. Also, about hallucinations and paranoia: "I have recurrent delusions that others hate me or are conspiring against me". My hunch is, that you may want to look for AS plus 'something else'? Most of what you wrote about seems to me to fit with what I understand AS to imply. But I don't think AS gives rise to these particular things about scaring others and being scared about what others might do to you: I think these are distinct from the routine anxiety of a person with AS will naturally experience. So maybe there's some other traumatic component in your makeup? For example, when i was a tiny baby i had an illness that almost killed me, and this has given me an ability to feel fear of total wipe-out on an everyday basis. this adds an extra depth and 'bite' to the anxiety that, as somebody with an AS mental makeup, i'm gonna feel anyway. but it's not AS and i need to find ways of living with this particular part of my makeup (it seems to be to do with my physical body and being physically expressive and secure - for example, by dancing in an accepting environment) within a broad framework of 'how to live a good life as somebody with AS'. You might find something analogous? So that you might need certain patterns of opportunity, certain relationships, certain treatment, certain medication - whatever - to enable you to live with the paranoia and scary stuff, and contain it, accommodate it, in some way. Rather than think of this as having multiple 'diseases', maybe you can treat this as having a way of experiencing the world which has various components; and in principle, these call for a repertoire  of differing responses from you and differing opportunities available within your pattern of living?

Yep, stick with this. Medication may help with depression/anxiety, so get what you can from this? But for a person with AS it's reasonable to be depressed and anxious! If nobody else is like you (being a member of a 0.5% minority of the population!) or can easily 'see' you of course you're gonna be depressed; it's a hell of a place to be cast up in, somewhere out there beyond Pluto without so much as a rowboat to get you back to planet Earth, where the rest of the human species lives. If the shape of other people's lives makes no sense and you can't really tell what might swim out of the world of relationships in the very next minute, and look you in the face, of course a reasonable person is gonna be anxious. if you have 'weak central coherence' and it exhausts you to do all of the mental work that's needed to hold a flow from minute to minute and day to day, of course you're gonna be stressed and need time out that non-AS people don't need in order to swim around in the everyday world. just because we're intelligent - everybody here in this list is intelligent - and can do amazing tricks just to get by minute-by-minute, that doesn't mean that we don't get wrecked by the 24/7 labour we have to do, on a scale that non-AS people can barely imagine. of course we need support, and some slack.

You mention your boyfriend: "The only person I really talk to is my boyfriend, and sometimes our mututal friends or my family.". You also say that you can be "very talkative.. recurrent topics and speech patterns.. [relationships] start fading when our favorite things to do get old. " Yes, we can be truly obsessive with ourselves and our struggles to live with the experince of AS! This calls for us to show love and regard for others - otherwise we abuse them by acting out and 'over-share': dumping. Take real care over this; our lives won't get better through demanding things of others that they can't handle, overloading them, boring them, wearing them out.

You daydream a lot. Sure. With AS you need your own space, to retreat to, to recover from your systematic mental over-work, to digest all the traffic that your mind has been handling as you swim and survive in the flood of other people's lives. 'Daydreaming' is your mind catching up with the processing overload of other people's expectations, actions, energies. Night-dreaming isn't enough to handle this. I'm guessing that it's a long time since you woke up in the morning feeling fresh, right? Your brain's been at work all night. Make relationships with people who'll accept your dreaminess, and who don't demand that you 'make sense' all the time?

whoooo, yes, that feeling. Hopelessnness is a vile place to be. It's not just bad news though. Everything holds a gift, even the most vile experience - even if it's hard work to find the gift. The good news? Passionate hopelessness is perhaps a sign of how very much you want to be loved and recognised, how very alive you are, how much love you have in you, which you passionately want to mobilise in your life, let it move and flow, enrich yourself and the whole world? Myself, after 60 years of life, 10 years of really seeking to change my old depressive, destructive self (including therapy, yoga, whatever) and less than a year of self-diagnosed AS-existence, i'm just beginning to accept the possibility that nobody will ever truly understand me. i take this to mean that the understanding has to come from me. i can live with that. that's a positive finding. it means that i don't need to other expect impossible things from people, which is kinder to them and to me. i now feel that, if they care about me at all, i can realistically expect them to recognise me (as somebody who truly lives 'somewhere else' - asperger-land) and to accept that i'm a living loving skillful intelligent man who needs to organise emotional space in a certain way in order to participate happily and positively in getting and giving, in the world of the non-AS majority (99.5% of the population).

You mention suicidal thoughts - do you need medication to help you here? is it truly suicidal - might you really do it? - or is it 'just' deep misery and hopelessness?

Do you have anything going for you on a physical/energetic 'body' level? i used to feel adrift in empty, lifeless, outer space; or trapped internally in no-space-at-all, overwhelmed by dimensions (of life) that i couldn't get access to. One of the most profound things that has enabled me to find 'emotional space' is 'bodywork' in a broad sense: breath work, energy work and hands-on body manipulation (yoga, pilates, meditation, rolfing), dancing (especially, wonderfully, '5rhythms'). Bodywork can bring you understanding of how to recognise feelings as a 'felt sense' in the body, allow them to move inside you (so that you and they don't feel trapped in zero dimensions), give them a home within your body space which doesn't occupy the whole of your being. your body is home, perhaps your only true home? your body is your oldest and longest lasting friend - be a true friend to it? your body knows and remembers everything you've ever experienced, and it knows things that you (in your head) don't know. So: do the work, the learning, that will allow your body to give you the gifts of knowledge, recognition and internal space that it's holding for you until you've learned to look for them?

You wrote that you "rarely ask for help when I need it... staying away from others". Yes, this is a bad trap to be in. Not really believing that others can see and help. Not wanting to risk finding that in fact, they didn't see and didn't help - so staying away. This is a hell of a bind to be in.

Who to turn to? rather than a medic, perhaps a therapist who will live - an hour at a time - with both your body and your feelings? a proper therapist will give themselves to understanding and accepting how you really are, what you really live with; supporting you in becoming a lovely, living person with whatever it is that you've been given as material to make your own, unique life with: AS, other traumatic and challenging stuff; daydreaming, intelligence, persistence, a desire to be truly alive. A medic will need to fit you into their medical frame - for example the DSM-IV diagnostic criteria for AS - and will probably not have the time to really develop understanding in themselves or in you. because of this, a therapist will cost you more. You wrote:

Maybe you could use help from a therapist, to recognise your own - often overwhelming and incommunicable - feelings, learn what they're called, learn to say hello to them as they come and go, learn that they do come and they do go and that you don't have to be trapped by a particular feeling that currently is succeeding in monopolising your being in the obsessive way that, as somebody with AS, you're so familiar with. I say this because I found enormous benefit from this kind of emotional 'literacy', acknowledging the richness of emotional life, and becoming able to have a dozen feelings per minute instead of one feeling per week (moods, depressions, obsessions). My own experience suggests that this is a very bodily thing, and so a therapist is needed who is willing to recognise and work with your body in the therapy space in some way: either through hands-on contact coupled with voicing of feelings (as in rolfing, postural integration, rebirthing); or through guided bodywork (yoga? pilates? meditation?); or by 'hearing' your body (and their own) as you talk, in some kind of dynamic talk-therapy. It may be a prejudice, but I'd say that anyone who isn't willing to respond with their own body in some way in the therapy space (manipulating yours, guiding yours, listening to what their own body tells them about your experience) isn't any use as a therapist in something as deep-seated and all-touching as the AS experience: which rules out the 'most successful' and widely available therapeutic approach: short-term cognitive-behavioural, 'mental management' work.

Do take care not to try to 'do therapy' with people in the real world - friends, partners, family. these relationships are not designed to carry the burden of deep sharing in the situation that you experience as somebody with AS. it may be just too weird for someone else to take on board, 24/7. it's possibly too much hard work to expect anybody expect a committed skilled paid professional to engage in it selflessly and with dedication, and for an hour at a time with spaces in between. i'll love my ex-therapist for ever because of the way i learned with her that love and recognition does exist; and that - as i get better at it and on a good day - i can find a way to it myself, without depending on others for the recognition and love that we all need, provided that i gift myself the gift of the space that this needs.

Maybe some medication will help? antidepressants? so talk to your doctor. but manage your expectations of what medical practitioners and the healthcare system are able to deliver? and develop support for yourself of other kinds too?

Will an AS diagnosis help? I don't think it will help your doctor to do much, though it might influence prescribing medication. The diagnosis may be a good thing to take into therapy with you, since it helps to frame your experience in a way that could be a good starting point for communication. (But given that the diagnosis process takes time, it would make sense to take yourself into therapy way before the diagnosis is done.) Most of all, a model of 'what goes on' in the mind and experience of someone with AS can help you to organise your own life patterns and emotional space in ways that make sense to you, and are sustainable instead of overwhelming. Equally they can enable you to ask others to appropriately organise their patterns and expectations too, taking the model on board, if they care about you. To find such models and practical guidance, the best books and discussions that i myself have come across are ones that deal with AS in long-term relationships. For example, there's the ASpires network <http://www.aspires-relationships.com/>; and there's Ashley Stanford's Asperger Syndrome and long term relationships.

Whew! I didn't mean to go on for so long. I hope that this connects in some way, provides some kind of recognition, offers some kind of insight into what you might do with your hunch that you're a person who lives as Asperger life? I wouldn't have responded at such length if i didn't feel that you and I share the experience of living with AS.

You're intelligent. You really want to live a good life. You believe there can be change. You're looking for the way. Travel well...
fellow-traveller love & best wishes
/michael

Hi yummypinkblobs, and welcome. I can't add a thing to the doc's well thought out reply.

thanks grizeldatee :)

yummypinkblobs... you might enjoy grizeldatee's podcast on neurodiversity, to be found at: <http://grizeldatee.podbean.com/>. i did.

Thank you all for the warm welcome and the great advice. I have been searching for answers to explain why I am the way I am. Many of my friends and family are frustrated with the way I behave. I'd like to know why and learn to deal with my condition. It feels nice to listen to others with the same feelings and experiences. Basically, this is the closest I've come to hearing others who think the same way I do and have the same struggles. What's the best way to find someone who can diagnose me? I don't make very much money, and getting mental help is very challenging on the pocket. For a short while I had seen a personal counselor, who helped only a little bit and that was $150 a session. I didn't find it easy to tell her my feelings and how I think. She told me I was depressed and needed to change a few things in my life. Well, I changed those things and I still feel empty. Back then AS wasn't in my head. I am suicidal, but the support from my boyfriend has kept me strong. I feel that getting a diagnosis and some direction on how to manage my feelings and behavior and could help me learn to avoid situations, which might help me more than medicine can. I was put on many anti-depressants, which had some bad effects on me. I was taking paxil, but discontinued recently due to lack of health insurance. That's my problem. Money has helped to keep me from getting help.

I'm so glad. There are many people to whom your life does make sense - and a bunch of them hang out here. The hard thing is 'meeting' them and adapting what they know to what you need - it takes time to 'talk' and time to digest and explore. Take it easy, yummypinkblobs, it's a continuing journey. But perhaps right now is a turning in the road...?

Perhaps you should consider what a formal diagnosis will do for you? It will do little to change the services that you can obtain from the healthcare system, which as you say, hang heavily on what you can pay. For myself, I believe that a formal diagnosis will help those close to me to accept the real difference that exists. I need them to accept that it's not just me telling one more weird and tedious story about how weird and exhausted I am. I believe it will be a resource for me if I can have an expert 3rd party say that I'm part of a small population of people whose lives run in truly different ways. But if your boyfriend is accepting of the AS idea anyway, the diagnosis may not add anything to your mutual understanding. You both can get on with the work without any medic stepping in, because the means of understanding are available in the public domain, in forums and books created by people who live with AS and care about people with AS. Without paying, you'll not get much insight & support from professionals; and as you've discovered, a proportion of them are not very insightful either. So - is it worth the time and cost (and possibly anxiety?) of getting diagnosed right now? Perhaps your energy could go into other courses of action?

Yep, money, it's a bummer :-(   How about this for an idea... perhaps lay back on the idea of mental help, and think in terms of awareness help? As I said in my earlier post, although AS is a mental thing, as a person you live in a body, and awareness is something that only partially comes through the mind. There are things you might do that aren't 'mental' but can help a great deal with awarenes (eg of feelings) and comfort (eg knowing that you're safe and supported): quiet, self-loving 'bodily/spiritual' things like yoga, pilates. Just being in a yoga class once a week can really help in creating the inner space that a person with AS needs so much. And thro that world of bodywork, perhaps in time you might find a therapist who can give you the whole-being attention you deserve.

It seems to me that this relationship is your big resource. So - read things with your boyfriend? Things in forums like this or Aspires. Things in books like Ashley Stanford's: if you go to the amazon page I linked above you'll see several other good books on AS relationships, all published by Jessica Kingsley I think. The recent one by Sarah Hendrickx and Keith Newton should be good: Asperger Syndrome – A Love Story I know Sarah (the non-AS partner in the relationship). This is where money comes back in again, of course. But $50 for a really good book is better than $150 weekly for useless professional consulation? And it's something that you and your boyfriend can use to build your relationship, which is where the rubber hits the road. It's practical. Take care, though, to maintain the personal space and quietness that you need as a person with AS. Don't wear yourself out working impossibly hard on reaching explicit understanding with your boyfriend. Hang loose, love yourself. You'll get there.

Yep, I think you're right. There is good, committed, well-informed professional literature: Baron-Cohen's work, Tony Attwood's, and so on. But a formal diagnosis may not contribute very much; and the direction you want might not come entirely - or mainly - from professionals?

Talk this over with your boyfriend? How much work does he want to do, to find a way of being in a relationship with you that works for you, enables you to be yourself, doesn't exhaust you, let's the loveliness shine through... is fun and playful!?

love & bw, traveller
/michael

hi yumymypinkblobs :D

i just came across a reference to a book which might have some helpful content for you? you'll find some blurb at <http://www.aspergers.co.nz/insightAutistic.shtml>
The book is “Congratulations! It’s Asperger Syndrome”, by Jen Birch. Jessica Kingsley Publishers, London, 2003. (288 pgs).

Jen Birch was diagnosed at 43, after three breakdowns and periods in mental hospitals. She now is an advisor and consultant on Autism and Aspergers in New Zealand.

I saw the reference in another AFF thread which you mght have picked up on: <http://www.aspiesforfreedom.com/showthre...?tid=11362>
Diagnosed and Female Aspies

best wishes
/michael