Women With Asperger's Share Their Experience in Response to A.J.'s Questions
Perla Messina
Masha
If you are an adult woman with Asperger's Syndrome and you'd like to respond to these questions or you
have something else about your own life experience as it relates to Asperger's please email A.J. at:
aspergeradults@yahoo.ca
Perla Messina
1) Did you always have some sense that you were different?
Yes, not only I felt different but I was also always treated differently from others around me,
I have a very high IQ (above 140) and was able to clearly notice there differences. It bothered me very
much that I was always singled out, rejected, disliked, riciculed and made to feel bad for being different.
Not only by my peers but mostly (and this was the most painful) by my parents. My younger brother who also
has Asperger's was the typical shy, sweet Aspie boy, while I was the typical withdrawn stubborn and unruly Aspie tomboy girl.
My parents accepted my brother's shyness, as cute and sweet, and offered him love and protection. My un-girlie
behavior was in the contrary seen as as something that needed to be corrected. They assumed that I was jealous
of my brother, that I had a bad character, and that I was simply a bad child. This assumption came because
when they noticed that I was different, they took me to different doctors to find out what was wrong. I had
many blood tests done, was taken to internists, endochinologists, etc. but no doctor could find anything
physically abnormal with me, so my parents assumed that I was perfectly healthy, nothing was wrong and the
way I behaved was purely something I was doing and thus they could blamed me for it.
They did blame me for it, and they decided to use severe measures to correct it when simple "do this"
and "don't do that" did not work. They began systematically punishing me, hitting me, locking me in the
bathroom and making me eat my meals there on top of the toilet lid, they would keep me from going to bed
until I had learned my homework the way THEY thought I should learn it or write it, they would not buy me
new clothes, while they did for my brother, unless I comformed to their rules of behavior, they
emotionally blackmaled me in an attempt to draw emtional responces from me in the fashion of
suggesting to leave me behind on the beach, exchanging me with another child of my age, giving me
away to the 'gypsies' and more creative tortures.
2) Was feeling different a source of difficulty for you or easy to accept? Why?
It was not a question of easy or hard to accept. It was as it was and it was beyond my control.
All I could do was to try and survive the hardships. Because of that I became more and more stubborn,
refused to let 'them' meaning my parents and all the rest to tormented me win. This stubborness was
counteracted by times of great dispair and loneliness, and to find for this emotional pain, I turned to food.
Food was the only thing that was available to me as an escape, it was also a way to get back at my parents.
The more I ate and the heavier I became, the more it bothered them, the more it 'hurt' them. So, to me food
was my weapon and shield. It offered me comfort when I was in pain and it offered me a way to hurt back the
parents who caused me the pain. The only problem was that becoming a fat female child caused me additional
rejection, isolation, redicule, bullying, and punishment especially from my parents who had now to deal both
with my 'bad' behavior AND my growing waist!
3) If you were diagnosed or self-diagnosed in adulthood what do you think, if
anything would have helped you if you'd known at a much younger age?
was self-diagnosed in adulthood, and because of my self-diagnosis I could finaly understand why I was so different as a child, teenager, and adult. Knowing did bring some answers about my past but it also opened a new Pandora's Box. First of all I realized that I had wasted about 43 years of my life, fighting, struggling, suffering when I could have been helped (at least so that I would not have turned to food to comfort me and caused myself an additional 'disability' that of a fat body that I had to carry with me all these 43 years and now still carry.
I would not have suffered the additional prejudice and rejection that society holds for fat wome.,
I would not have been rejected and ridiculed as a teenager and adolescent by my male and sometimes
even female peers, I would not have suffered by witnessing all the girls around me get dates, have
guys chase them, flirt with them, date them. I would not have suffered the loneliness I suffer today
by not being married as no man ever asked me, I would not have suffered when my mother replaced me with
a 'foster' daughter, I would not have suffered when my brother felt embarraced of me when his friends
called me names and he joined in, I would not have suffered when I can't go swimming as it is the only
sport I love and greatly enjoy, I would not been excluded by a bit, huge part of life because of my
ugly body. Yes, I do greatly regret that I was not diagnosed as a child, that I did not have a fair
chance to be seen as who I was but forced to become an ugly fat woman and still suffer the concequences today.
4) If you could find support now as an AS adult what would you like it to be like? What kind of support (if any) do you feel you'd benefit from and why?
I would have liked to be diagnosed to finaly be accepted, to finaly be allowed to be me, to finally be able to show my wounds, to have my wounds aknowledged, to have my sufering aknowledged, to finaly get the credit I deserve for struggling all my life to survive in spite of all the adversity that I have faced from everyone and anyone that rejected and hurt me because of my Autism, because of my being a fat woman, because of being a single unmarried woman in a male dominated society. No one can even grasp what strength it takes to keep on every day when you know that from the moment I existed I was not wanted and remained unwanted all my life.
Unfortunately, my life will not grant me even this. I tried to get a diagnosis by the Psychiatric department of the AMC (the Academic hospital in Amsterdam) but because I had no one (both my parents are now dead, and I have no real contact with any other family or my brother for more than 20 years now) to bare witness of how I was as a child, they could not confirm that I have AS. They did find many things that fit the AS picture, but not enough to make a diagnosis. What did they expect after having to survive alone in a neurotypical society, that I would not have adapted, adjusted, subdued and conformed to the rules of the neurotypical game?
Obviously they could not realize that a woman with Asperger's is the chameleon of the Autism Spectrum,
that our innate empathically wired brain allowes us to 'copy' neurotypical behavior and 'wear' it a cloak,
a cover, a cape, a costume over our persona so that we can fit in and survive. My high intelligence and eye
for detail helped me create such a costume, and the people (one person actually) who interviewed me failed to
notice that. He chose the easy way out that was safe for him and his professional reputation: not grand me the
diagnosis and thus also not grand me the acceptance and the resolution I needed. This unfortunately has a
greater and griever effect than he had imagined.
Besides Asperger's I now have a multitude of other health problems including heart problems, diabetes,
and a hereditary sensory motor neuropathy that is progressive. These health problems together with the
mis-diagnosis are now killing me. I stand with my back against the wall because I can't get any
psychiatric help (not the kind that I need without the confrmation of the AS) that I desperately
need to deal with the increasing disability due to the neuropathy, the increasing stress due to
the amplification of the Asperger's symptoms from the increasing stress, and the constant
miscommunications, misunderstandings, misjudgements, misconduct, mistakes, etc that occur
during my interactions with the people that are treating me: doctors, nurses, therapists,
neurologists, cardiologists, and on and on. All this has thrown me into a long term depression
with many suicidal tendencies, that will very soon become fatal. I know it is coming, I tell the
doctors, I tell everyone and they only think I am a drama queen. A dead queen soon enough...
5) What do you think are the major differences in females with AS as opposed to males with AS?
The female brain is wired in a diffrent way, it is wired for empathy and this means that
the 'extreme male brain' tendency of the autistic way of thinking will be put into a different kind
of use than with male Auties and Aspies. They are more concerned with their own personal advancement,
their own career, their own greatness, their own kingdom on earth. Women on the other hand are more
concerned with spreading the word, helping others, teaching others, networking with others, not for
personal gratification but for feeling that they have managed to bring forth (give birth to) a better
life, a better world, not for the world but for the people.
Women want to help people in particular, while men want to help the world in general. This difference
is based to our gender goals: a female seeks a safe nest, a safe place to give birth and bring up her
young, this will compel her to create this safe place by making sure that the people around her are foe
and not enemies. That is why women are more interested in socializing, networking, to create a group of
allies that will help her protect her young. After all humans are part predators (meat eaters) but we
are also part prey (we can be eaten by other predatory meat eaters).
Like the female animals of a herd that become sexually available and give birth at the same time to
ensure that safety is in numbers is present when the young are born, the same way human females 'network'
to create a timing, a perceived safety, for their young. It is common knowledge that if several women
live in close proximity with each other, in the same household, their menstrual cicle will eventually
become the same. They will become like the female animals of a herb that time their pregnacies and
birthing so that it corresponds with the rest of the females in the herd. This is what empathy is,
it the instinct of the herd, it the HERDING instinct that promotes safety and eventually survival of the
species.
Males on the other hand are more concerned of their own personal image, they have to prove to the female that they are worth mating with her and allowing the next generation to carry his genes. Males do whatever they do as a show-off of their ability and talents so they will attract the female's attention. They also have to fight off other males, by for example butting heads with each other like rams do, by proving their superiority to them, and showing that they deserve more than the other male(s) the prize of procreation.
Likewise a male Asperger, is doing whatever he is doing as a proof of their own self-worth, as a proof that they are better than another male (more intelligent for sure), and that they are someone worth mating with. If you look carefully you will see that it is mostly men (with AS or not) that have gotten Nobel priezes, NOT women. Not because women are less capable, or because their work is less groundbreaking. It is because women are more concerned to benefiting others in an individual basis, than with promoting their self-worth through generalized impersonal non-individualized work.
Men are out for the prize: the honor to allow their genes to exist in future generations.
Whether men are aware of that or not it is not important, it is still the underlining motivation
to anything and everything they do. With Aspie men because of their extreme male brain coupled with
the male wiring of their brain this need is even more extreme and so are the disappointments if this
end is not achieved. This means that a male Aspie that has not been given the opportunity to fulfill
that need will reject society all together, will reject the competiveness, feeling he can't compete
with other males and that will he will never find a female (love shyness).
A female Aspie feels more the effects of loneliness as isolation. It is the female Aspies that suffer more from the lack of friends, of a social networking. Men suffer loneliness because of the lack of a partner (female) more than the lack of friends or a social network.
But there is a catch. Because of their extreme male brainness female Aspies tend to feel the sameneed (even if it is at a lesser degree) to prove their self-worth by butting heads. They will do that either with their peers and come across as tomboys, either with their boyfriends and come across as aggressive, or with their husbands and come across as overbearing and controlling. A female is not expected to butt heads with others and when this happens, the others are taken back by this exhibition of male aggressivity. If the 'othrs' don't batt heads back, the female Aspie will not be able to accept them as equal to her, or better. She will then either see them as 'weak' and needy and take over the roll of caregiver, by acting as a 'mother' or will see them as week and intellectually inferior and manipulate them by becoming a control freak as a means for survival. Or will find them too weak, needy and intellectually inferior and refuse to mother them, control them, deal with them all together and choose isolation. This last can also happen to male Aspies, too, who see people around them as idiots not worth dealing with.
6) Are you happy and self-accepting? Do you still have times of pain or distress about
what AS means in your life?
Both. I have always accepted myself as being different, I was proud to be different,
and always paved my own road even if that meant going against conformity with social
norms and rules. I had to be proud to survive. If I had allowed myself to accept that
being different was bad and had to be corrected as my parents so hard tried to do,
I would have killed myself when I was about 11 years old. I also have many, and increasing
times of pain and stress especially with dealing with the many illnesses that I have.
I am also dealing with the mis-diagnosis that caused me additional suffering by labeling
me things that I am not because my Aspie behavior is now seen as lying, hypochondriac behavior,
drama queen, exaggerating, seeking attention, over-reacting, and so on.
7) How does AS manifest in your life for you? Do you feel lonely? Do you have difficulty socializing? Do you ever feel a desire to socialize but find it too much?
AS manifested as me having to pave my own roads if I was to get anywhere. I have lived on my own,
literally on my own, since I was 17. I did not have any financial help from my parents because I refused
to compromise. They blackmaled me with their money. If was to accept it, I had to comform to the behavior,
rules, etc. that they forced upon me all my life. I rejected their rules, I rejected them and I also rejected
their money.
My brother took a different approach. He rejected their rules, but did not reject them. He learned
how to manipulate them into giving him what he needed, including money, care, etc. My mom used to tell me
that she loves my brother because he needs her, while I never did. She failed to realize that I never needed
her because I LEARNED to never need her, because needing her meant that I had to accept she and my father
were bad parents, and incapable of fulfilling my needs. So I learned to fullfil my own needs, to be my own
mother, and food was a means to an end.
A mother shows her child that she loves it by feeding it, that is the primary connection of
love between a new human being (the baby) and its caretaker. I became my own caretaker by feeding me.
Feeding is also a source of pleasure for the baby, the child, and helps it bond with the other being that
is giving it this pleasure: the mother. Since my mother failed to give this very needed 'pleasure' and
bonding to me, I rejected her and became my own mother. Thus I did not need her any more. And she knew
that because I rejected her completely, rejected any physical contact with her, rejected any kind of
dependency on her, rejected her money, rejected her needs.
I do feel lonely. I have felt lonely all my life. I have learned to deal with loneliness by having
pets, many hobbys and special interests, and by reading, writting and travelling.
I have difficulty socializing the way the NTs socialize. I can socialize by having a good discussion,
by getting together with others that share one of my interests, or even socialize as a traveler and tourist
where I am excused for not following the specific social rules of the country I am visiting. Maybe that is
what motivated me greatly to learn many languages and travel as much as I have. Because each time it was
strating a new, each time I could be with people within a situation that did not require the established
rules of social behavior, that allowed margin for error, and allowed margin for human contact without
the long-term responsibility of reciprocity and frienship. The kind of human socializing that I
compare to that of a butterfly that goes from flower to flower: a win win situation.
Unfortunately, when the butterfly looses her wings and can't fly from flower to flower any more the
grave rules of socialization become apparent, and so does the innability of someone with
AS to deal with the social rules that he/she have been avoiding. It feels like having one's
face pushed in a pile of shit in one go. This is my reality at the moment as my wings are broken
and my life as a social butterfly ended in a pile of shit. I live inside my home now, end have
lost all contact and slowly even desire to socialize.
8) Do you have any issues with anxiety? If so, how does it affect you and what do you do to cope?
I have many issues with anxiety. My biggest anxiety is accepting that I am indeed the bad person that my parents thought I was and managed to brainwash me with these beliefs. Then each time I face rejection, throughout my life I have to fight not to sink in the underlying belief of everything being my fault and of me causing all the adversity I have experience.
It affects me very deeply because it throws me into a kind of total despair, of total helplessness, total non-control, a feeling of drowing in black water.
9)Do you have issues of sensory over-load? If so, how do they manifest and how do you cope?
The worst sensory overload for me is sound. I have extremely good hearing and can hear everything. This one thing I can't shut off even with ear plugs. Sleeping can be very difficult when even the slightest sound will awaken me.
When listening to music it is hard for me to also watch people around me, I love to dance, or I used to
before my illness, and used to like to go to dance when I got stoned (smoked weed joints to allow me to
socialize) and would go dancing at house/trance music events. I could only dance with my eyes shut so I
could concentrate on the music and not get sensory overload from all the people dancing around me.
Crowds are very sensory overstimulating, and I tend to avoid them but there are times that I do like to sit in the park and do people-watching.
How do I cope? Well, before my illness smoking a joint (with weed) helped me relax and not feel so overwhelmed
by socializing and all the sensory over-load that included. Now, that I am ill and get tired easily, I do not
go out and avoid this kind of over-load. It still happens though when i go to the hospital for my visits
and treatment, when I come back home I am completely exhausted, mentally and physicaly.
10) As a female with AS what do you most want NT's to know/understand about you?
That I can't change not fundamentaly the way I process emotions and even though I can seem like I am 'feeling' them like they do, and act as they do, it does not come from the same place. It is my intellectual ability that is doing the processing, not an instinct. Also, them coaching me and encouraging me to become like them will not make me change, it will just tire me because I will feel I am not doing enough and go on the overdo mode and then come across as overbearing and fake.
If I seem distant it is not that I don't like them it is because I am either tired or am trying to figure out how to connect and be part of the interaction. If I am silent and stare out the window I am not ignoring them, I am paying a lot of attention to every word they say. When I am looking at them they should worry that I have not heard what they just said, because I can either look and decipher what I am seeing or listen and memorize that.
When I don't reach out to contact them is not because I don't need them but because I need them far to much to dare tell them that, and fear being too much for them to withstand or deal with. It is when I am 'avoiding' them that I am actually 'screaming' for someone to reach out to me.
Perla Messina, age: 45, place of birth: Athens, Greece, place of residence since 1987: Amsterdam, Netherlands.
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November 20/07 - 
