I’m trying to finish a post on Russian painting, but it seems stuck. In the meantime, I wanted to write about this …
According to widely-quoted statistics, somewhere between 1 in a 100 and 1 in a 250 people have Asperger’s Syndrome. A recent, as yet unpublished, piece of research at Cambridge University puts the figure at 1 in 58*.
Asperger’s Syndrome is sometimes otherwise called “high functioning autism” – those with Asperger’s Syndrome (often called “Aspies”, just as the syndrome is shortened to “Asperger’s”) do not show the same developmental indications as those with full-blown autism and, almost by definition, have an intelligence well above average if measured using the traditional IQ scale. The vast majority of these people are male. Professor Simon Baron Cohen characterises them as being very good “schematisers” and occupying one end of a spectrum, at the other end of which are the “empathisers”. The vast majority of empathisers are women.
Given all of this, it seems reasonable to assume that a pool of men, all of whom have IQs above, say, 130, will contain a sizeable number of men with Asperger’s syndrome. Men usually measure higher than women on traditional IQ tests, so it seems reasonable to assume that almost all women measuring, say, 130 on an IQ test would be schematisers, or have a degree of Asperger’s syndrome.
Not all men and women with Asperger’s will marry. Marriages with Aspies tend to fall into two camps. First there are those Aspies who marry other Aspies. Secondly, there are those Aspies who marry those who are “neuro-typical” or not Asperger’s. This is often a marriage of opposites where the strengths of one are complemented by the strengths of the other, or the weaknesses of one may be compensated for by the strengths of the other. Neuro-typical partners are often very empathetic but are still likely to have high IQs as they would be unlikely to interest the Aspie otherwise.
Because of the circles I move in, I know what seems like a huge number of men (but also women), with Aspergers, several of whom have received formal diagnoses from Professor Baron Cohen. The fact that they have Aspergers often comes to light when they have children. Aspergers is a highly hereditary condition (apparently). Often adults with Aspergers have learnt to fit into neuro-typical society, but their offspring have yet to learn and so the behavioural manners of the adult are magnified in the child.
I remember a philosophy class when, to the horrified silence of the rest of the class, I suggested that all babies should have a brain scan before their first birthday to discover whether or not they had Aspergers, and then should be cared for and educated accordingly. I actually wasn’t joking, but my comment was provoked by the misery of so many of my female friends. These friends all seemed to be abandoning their marriages, usually for a man who was empathetic. They all described living in an emotional desert, receiving no affection and no intimacy. Yet their husbands were good men, devoted to their families and hardworking, if more than usually interested in arranging huge classical music collections alphabetically, or playing “Dungeons and Dragons” or achieving world wide acclaim for their esoteric mathematics.
Researchers in Sweden believe that early intervention can promote better outcomes for children with autism. Babies in the Uppsala Babylab are being wired up so that their brain patterns can be followed. Similar studies on infants are being carried out in London.
I move in circles where most of the men have very high IQs, and I have chosen female friends who have high IQs too. Some of these women probably have Aspergers, but a proportion do not. This second neuro-typical high functioning proportion tends to be married to men with similar or higher IQs. A significant number of these women are, therefore, married to men with Aspergers.
One odd thing about Aspies and love is that Aspies appear to function quite normally when they are “in love”. This period typically lasts about two years. After that the real work of “loving” as opposed to “being in love” starts. The Aspie does not know what “love”, outside the obsessional interest of being in love, means.
He will typically become immersed in his special interest – often his work – and will be disinterested in the minutiae of everyday life. He will have fixed ideas about things and will respond badly to being asked to do something that does not correspond to these fixed ideas. Typically he will not be in the slightest bit snobbish. He will typically have a very strong sense of fairness, though this sense of fairness is abstract. By abstract, I mean as it applies to other people, other than himself. Typically he will not be able to see why he should not do what he wants to do when he wants to do it. Typically he will not value possessions, needing very little. He will have almost no interest in clothes and will prefer them to be functional and comfortable rather than smart. He will only want what he actually needs to survive and will not see the point of anything else. He will typically not be interested in earning large sums of money – for he has no need of it. He will typically seem very pure and not of this world. He may have a tendency to take things literally, unless he has learnt to interpret phrases correctly. He may be fascinated with words, and very skilled at foreign languages. He will typically not hold a grudge, and will typically not be jealous. But he is not jealous because jealousy is tied up with preference and preference with love, and he is not concerned with that. He does not understand love as a “going out” feeling. He is more likely to understand love as “respect”. He will typically like rules, and be happy if they are followed. He will typically dislike holidays and leaving home. He will typically enjoy spending a lot of time by himself, away from other people. He will typically have been bullied at school. He will typically not have excelled at sports, though he may be able to recite all the winners of every football competition since the game was invented. He will typically be not quite sure what the point of women is, except to have his babies and bring them up. He will typically not imagine that she has any emotional needs, and will typically not see the point of wasting money on useless or decorative or fragrant presents or adornments. He will typically be close to his mother. He will typically have only a very small number of friends, and will share interests rather than feelings with them. He will typically always tell the truth, and speak his mind with no regard for the hurt the truth may cause: this is both a boon and a curse. He will speak a different language which neurotypical people rarely grok.
He will usually be a very loyal friend, though you may not hear from him very often, and he will not know how to share what has been happening to him. He will usually feel lonely sometimes, despite wanting to be alone, and will be devastated if those who he has high regard for disappear from his life but he will be unlikely to know what he should do about it. He may have bouts of anger born of frustration. He is likely to have periods of depression. Left to his own devices, on his own terms, he can be very happy with very little. Pushed to behave like a neuro-typical person, he will typically distance, and become very difficult. But then, so would a neuro-typical person asked to behave like someone with Asperger’s. He will have his own, unique character, and be shaped by his birth order and circumstances just like any other child would have been.
All of this is likely to produce confusion in his wife or partner. On the one hand she will know him to be loyal, good, honest. On the other hand she will experience him as being inside a glass ball. However hard she knocks on the glass she cannot really get his attention, cannot really connect with him. He will not know how to soothe her, or actively listen to her, he will not be able to put himself in her shoes. He will not do empathy, though he might, if she is sad enough, feel sorry for her as he would for a wretched animal. Psychologist have grouped together a basket of symptoms that such women often show, and have called it the Cassandra Phenomenon. The basket of symptoms is so called because the woman will rarely be believed when she describes the cause of her desolation: a romantic partnership demands a level of intimacy that no other relationship or friendship does, and so families and friends may not be aware of the deficit. It is easy to be judgmental when these women give up knocking on the glass and find emotional intimacy elsewhere. But these women are often not aware of the manifestations of Aspergers syndrome. Even if they are, it is a lot to ask of a woman, to live her life without emotional intimacy. Monkies wither away and die in similar circumstances. Simon Baren Cohen calls those women who stay with their Aspie husbands “saints”.
I often think that Christ (absent the miracles) may have been an Aspie. The internet was developed by Aspies for Aspies. At least, only Aspies would find it a truly rewarding form of communication. It suits them perfectly since there are no facial expressions or body language to read (they cannot read them very well, so better not to have the potential to misread them), and it also allows them time to process the speech they receive before they have to respond. This is true of emails, true of instant messaging (which need not be very “instant”) and comments on blogs. In my experience Aspies do not tend to be prolific bloggers. If they have their own blog it will usually only feature occasional posts. They may, however, be quite prolific commenters with a tendency to appear troll-like if they are not careful.
One of the most well-known writers about high-functioning autism is a woman called Temple Grandin. She is an expert on the industrial handling of livestock, but is also known for having invented a machine that will hug her. She writes this about the brains of those with autism and Asperger’s:
Autopsies of autistic, Asperger’s, and normal brains by Margaret Bauman and her colleagues reveal that in both autism and Asperger’s there is immature development of the cerebellum, amygdala, and hippocampus. Small cells are packed tightly in these immature parts of the brain, signifying true immature development, not damage or atrophy. Brains from people with autism are more immature in hippocampus development than are Asperger’s brains, which may help explain the cognition problems we see in low-functioning autism. The situation is reversed for the amygdala, a part of the brain that processes emotion. Here, the Asperger’s brain is often more abnormal than the autistic brain. Could the more normal hippocampus preserve the cognitive function in Asperger’s, with the less normal amygdala causing the social problems?
Corroboration comes from brain scan studies showing that people with Asperger’s or high-functioning autism process emotional information differently than do normal subjects. The British autism researcher Simon Baron-Cohen has done functional MRI studies indicating that normal people activate the amygdala to judge the expression in another person’s eyes, but people with Asperger’s call on fronto-temporal regions of the brain. It is true that brain scan studies show less clear-cut results in terms of differences in amygdala size than do autopsies, but this may result from the subjects’ positioning in the scanner, from gender, or from differences in diagnostic criteria. In 1999, Elizabeth Aylward and her colleagues at the University of Washington School of Medicine found that in male non-mentally retarded autistic adolescents and young adults, the amygdala was significantly smaller compared to normals. But a British study by Matt Howard and his colleagues showed that high-functioning autistics had a larger abnormal amygdala. A third study, by Mehmet Haznedar and Monte Buchsbaum, showed no differences. Possibly the differences among these studies could be explained by differences in the criteria used to diagnose the subjects. Also, a brain autopsy is more accurate than a brain scan on a living person. Brain autopsy research has shown that both Asperger’s people and the highest functioning people with autism have a small amygdala; in cases of low-functioning people, by contrast, the amygdala is more normal and the hippocampus more abnormal.
More recently, a study by Haznedar revealed that in the brain of the high-functioning autistic or Asperger’s person, the circuit between the anterior cingulate in the frontal cortex and the amygdala is not completely connected. As a result, people with autism or Asperger’s have decreased metabolism in the anterior cingulate.
These brain studies demonstrate that the social deficits in autism and Asperger’s are highly correlated with measurable biological differences. But the question remains: When does a difference in the size of a certain brain region become an abnormality, instead of just a normal variation? If I selected 100 people at random from a large corporation or at an airport and scanned their brains, I would find a range of differences in the size and activation level of their amygdalas. It is likely that brain scan results from this normal cross section of the public could be closely correlated with tests that evaluate sociability and social skills. Conducting this experiment on the general public would show that normal brain variation could be measured. Furthermore, people tend to choose careers that they are good at, and I predict that there would be a high correlation between a person’s job and the characteristics of the amygdala. Out of the 100 hypothetical people from a large corporation whose brains were scanned, the technical people in the computer department would probably show less activation in their amygdalas compared to the highly social salesman in the marketing department.
The rest is here.
Important Note:
I do not update this blog regularly any more.
More importantly, for more than the last five years I have been pursuing an intensive training in psychoanalytic psychotherapy. Through the training I have gained insight to the degree to which so-called ‘autistic’ defences are used as a means of surviving very difficult childhoods, and I am more likely now to see those defences as developmental challenges than before. I would point readers in the direction of the Tavistock Clinic in London which works with children and adults with autism and Asperger’s, and to the many writings of psychoanalysts on very early developmental intrusions. Ogden, for example, writes about the ‘autistic-continguous’ position. Rhode and Klauber have written a useful book, endorsed by the Tavistock Centre.
Good luck with your journey towards understanding. I guess we can only begin where we start from, and try to find our way.
Babies
Uppsala Babylab
Centre for Brain and Cognitive Development, Birkbeck College, University of London
Other sites
The Asperger Marriage Site
Alone Together: Making an Asperger Marriage work – if you read nothing else, read this …
National Autistic Society: Partners
Radio Four, Home Truths, An Asperger Marriage
Families of Adults Affected by Asperger’s Syndrome (FAAAS)
On-line Asperger Syndrom Information and Support (OASIS)
*A report of the research, published in the Guardian, has been removed from the newspaper’s website. The report said that some of the team of researchers believed that there was a link between the MMR vaccine and autism, but Professor Simon Baron Cohen has since distanced himself from their views.
See also my earlier posts: “The Space Between: Mind the Gap”; Asperger’s Test; Austistic Traits and Testosterone
A Different Voice 
93 comments
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April 11, 2008 at 12:24 pm
Muffin Lady
Is it possible for me to reprint the Asperger’s article and give credit to whoever wrote it. If I pass this on to professionals, I need to substantiate where it came from and don’t wish to pass it on without permission.
Thanks.
Muffin Lady
April 11, 2008 at 12:43 pm
adifferentvoice
Muffin Lady, feel free, though these are only my thoughts as a result of my own observations, and I am not a professional!
April 11, 2008 at 3:34 pm
JudeH
You sound as though you have lived this, not just observed it. My ex-husband has AS and you have described it perfectly. Thank you.
Jude.
April 12, 2008 at 6:28 pm
Muffin Lady
A Different Voice: I am ‘unworldly’ in the ways of the internet, having come to it late. Your collection of ‘comments’, your choice of subject matter, leaves me with a curiosity which obviously will not be satisfied; they are very eclectic. Your ‘article’ on Aspergers was informative and written without malice, in fairness to both the Aspie and the NT. It is one of the best descriptions that I’ve read regarding AS & CADD. The internet does not serve the curious person well, does it.
Muffin Lady
April 13, 2008 at 8:54 am
adifferentvoice
Jude H and Muffin Lady, thanks for your comments. It is always nice to know that something I have written has chimed with someone else. In a way, I regret the need to talk about Aspies and Neuro-typical persons, to use labels to describe people who are infinitely more complicated than any description we might try to make of them. The problem arises because each person imposes their idea of normality on other people, and expects the other person to conform to it, and is disappointed/devastated/unfulfilled/left wanting by the inability of the other person to meet their needs. I speak a different language to a lot of men and women I know, and there is no dictionary to be the interface between us (wouldn’t that be a good idea?). I think I’m a lot better at translating, but it will probably always remain a conscious rational effort rather than the instinctive understanding I share with people who think like me. Differences are exciting, however.
Muffin Lady, you’re right – the internet does not serve the curious person well in some senses. I always want to know more about the people I engage with, to satisfy my curiousity. On the other hand, type almost anything into Google and you’ll find something somebody else has written about it, and that is wonderful for my curiousity. For instance, I discovered that lots of other people had liked the same Russian painting I liked at the Royal Academy exhibition (next post), but that the (right wing) Spectator thought it “gaudy”. I enjoyed that.
Jude – I wanted to add that I don’t think my husband has Asperger’s though, like most men, he shows some similar traits (prefers socialising around an activity, prefers facts, and so on); he can empathise and is very social. I think that both of us may have grown up surrounded by Aspies, either at home or at school. My husband says he just went from one Aspie nest to another, which is a good way to put it (he was a scholar at a highly academic all boys boarding school). I went to a selective all girls grammar school, full of intelligent girls, more than a few of whom were “male” in almost every respect. You can imagine that if life amongst Aspies was your experience, you might have some making up to do. Fortunately both of us have the ability to look at our experience from the outside, and see patterns, and to make up for deficits… We do, however, continue to have many friends with Asperger’s traits, and the English bar is replete with examples (my husband is a barrister), as are Oxford and Cambridge University (where my husband studied).
April 19, 2008 at 12:35 am
Muffin Lady
Ah, a Different Voice, you wrote with too much feeling and understanding not to have been exposed to Aspergers and I appreciate your sharing this with the world of the internet. Living with siblings or parents with AS I believe may be different to living with it as a spouse. The ‘normal’ as in what we normally hope to experience loving someone else, isn’t there for us. As spouses, we are more often than not the forgotten voice, the unheard voice, in this relationship, not believed for what we believe to be true and what we can see, for these AS spouses can be clever at hiding their inner selves; the selves we see daily in our marriage. I’ve learned to, in some instances, think as someone would with Aspergers but for the life of me, I cannot cross into their world, which to me, is very two-dimensional.
Muffin Lady
April 19, 2008 at 1:01 pm
adifferentvoice
Muffin Lady, I think your curiousity will have to remain unsatisfied …
I am quite sure that those with Asperger’s do not experience their life as two-dimensional since they have never known anything else. The collision of the two worlds creates the potential for both sides to be frustrated. I, for example, have spent most of my life feeling stupid because I don’t think in an Asperger’s way, stupid because I cannot see the point of certain music, stupid because I sometimes allow myself to be overcome by my emotions, because I flit from one thing to another, because I like beautiful things, because I like cushions and candles. Someone with Asperger’s would, I guess, feel equally stressed and depressed about being asked to conform to the standards of a world he has never experienced, and inevitably failing …
I feel enormous compassion for those with Asperger’s but that is probably because I do not depend on them for emotional fulfullment, I do not need anything from them – quite different from the relationship a NT spouse would naturally expect from her spouse.
I think it it possible to bridge the gap in marriage(the “Alone Together” book is witness to that), but very difficult, and probably impossible without (i) a great deal of other emotional support for the NT spouse from elsewhere and (ii) enough insight from the A spouse to accept the differences coupled with a willingness to, intellectually at least, translate from NT-speak to Aspie-speak. I think the Five Love Languages Men’s Edition is a good place to start with that …
It’s like trying to explain to someone blind from birth what “red” is.
April 22, 2008 at 7:31 pm
xanthippa
Interesting article. I’m sorry that you felt ‘different’ while growing up.
However, I do take a serious exception to something you stated about Aspergers’ men: ” He will typically be not quite sure what the point of women is, except to have his babies and bring them up. ”
This is demonstrably not so. In my life – surrounded by more Aspies than neuro-typicals, I have encountered this attitude in NT men, not Aspies. Aspeis usually accept a person as a person. However, if a woman becomes obsessed whith ‘having babies’ – they will understand this as the all-encompassing obsession that is normal to them….and give her the room she needs to pursue it. That is being respectful and loving.
But I do hear your overall lament!
It seems irresponsible that people do not take charge of their emotions, and instead depend on a spouse to do this for them. It must be a horribly stifling, suffocating existence!
On the other hand, it must be difficult for people who have abnormally large amygdala, and so cannot experience emotions properly: their emotions can be so strong, they are overpowering. Their whole lives, lived in an emotional prison! Existence must seem so two-dimensional when emotions rob them of the ability to REALLY experience life…
Perhaps we can find cure for them!!! ;o)
April 22, 2008 at 9:00 pm
adifferentvoice
” He will typically be not quite sure what the point of women is, except to have his babies and bring them up. ”
Xanthippa, you are absolutely right. A horrible generalisation, and one that does nothing to really distinguish “Aspies” (hate that term too) from NT men. It’s just that NT women (most woman) in my experience want a loving, emotional, reciprocal, relationship with their man before they want anything else, and men with Asperger’s may have trouble understanding what exactly she means by that … and she may equally have trouble articulating what exactly she means :).
You’re also right about living life flooded with emotions. I often wish I could transport my life to a left brain existence, or even have a holiday there, just for the peace and quiet.
Having said that, it is a subject that needs to be addressed. It is sad for either party in a couple to have their hopes, their expectations dashed. The world needs an Aspie-NT two-way dictionary, but I defy anyone to define “love” or “friend” in entirely rational terms, and to define “wife” in such terms is missing the point …
I’m interested, why is your life “surrounded” by more Aspies than NTs?
April 23, 2008 at 1:36 am
xanthippa
Thank you, ADifferentVoice!
I’m hoping that the second part of my comment (living with emotions) was understood to be ‘tongue-in-cheek’ – at least a little bit! It was intended that way. It is just frustrating that everyone seems to want to ‘cure’ Aspergers, even though we are perfectly happy to be this way – and see the prospect of being ‘cured’ and joining NT world with quite a trepidation and claustrophobia. It was meant to be a ‘humorous mirror’ sort of thing. Yes, I know, I often miss my target…
First, I am convinced that what we call ‘Aspergers’ is not an on/off switch: it is a continuum. So, a person cannot be 100% one or the other…. If we were to take ‘fat/skinny’ (without being socially judgemental, just for ‘presentation’ comparison) continuum – a ‘fat but not yet obese’ person would be more different from an ‘anorexic skinny’ person than from ‘just-passed-the-line-of-obesity’ person…. Similarly, the ‘amygdala size’ continuum has an arbitrary line – this side, you’re NT, that side, an Aspie.
And like you, I HATE the labels!!!! But I have not yet thought of a better descriptive, that would be understood….if you have suggestions, let’s toss them about and start using the best ones. They’re bound to catch on.
And yes, as you might have guessed, I have Aspergers. Never heard the term, however, until my older son was diagnosed. Then, during the ‘family sessions’ with the psychologist, I ‘flunked’ a pile of the tests they gave me….and became an ‘Aspie’. But, it’s OK. So is my husband, and so are both our sons.
My mother has some definite Aspie tendencies – especially not being able to relate to – or even comprehend that it could exist – something that never happened to herself. It was frustrating, growing up – if I got an ache or an illness SHE never had, she would simply not acknowledge that it could even exist, and the doctors were just nuts to be making it up. And so was I… At least, Aspies now are educated enough to know this occurs… My father is a techie – and a textbook Aspie.
My in-laws are mostly Aspies (or close to the line). My husand, an Aspie, is an engineer. And my education is in Physics…. Of course, I took my ‘art electives’ mostly in Math…. (though I did eventualy switch to taking ‘sociology/anthropology of religion’ soft electives – but never fit in with the crowd there)…. Can you see why I might know more Aspies than NTs?
After high-school, the place I encountered most NT’s was when I started my own little company (yes, in a male-dominated field….I was THE woman in it – worldwide – in anything other than a HR or accounting departments). And most of my employees were NT’s. What a baffling world that was!!! But, after a bit, I was surprised at the depth of loyalty that MY (as in, protective, not possesive) people had for me!
Couple of weeks ago, I mentioned on my blog that I had Aspergers. Since then, I have received many requests to explain how I overcame some of my ‘pre-programmed’ limitations… Looking about for similar posts, I came across yours! :o)
I’ve been attempting to explain how ‘we’ see things, and perceive behaviours as well as ‘stuff’ in general….and though this would be rather presumptuous, I would be flattered if I could add a footnote to the ‘Rosetta Stone’ of ‘Aspie-NT speak’!
April 23, 2008 at 7:55 am
adifferentvoice
Xanthippa,
You did not miss your target. But I meant my response – my emotions cause me a great deal of stress and I would love to have a month or so without them … I can actually look back to a time when I was working, surrounded by men, in an environment where schema were everything, almost binary in its simplicity. I was much less troubled in that environment, and friends who work (in similar environments) still say the same thing. For a few hours a day they switch brain sides and leave their emotions behind. For that reason (and others) I often wish I had a regular job.
What you said about your mother and pain struck a real chord. I was never ever more than “uncomfortable” in my mother’s eyes, though in mine I might be struck down by crippling pain. I used to think that it was because she was a pediatric nurse who had nursed the sickest of children and so saw everything in relative terms. Funny, writing that, I can (flash of understanding) see that that is exactly how she saw it … 🙂
I tracked down your blog (it wasn’t difficult!) and liked reading some of the other posts, so I have given you a post of your own here. I thought others might well like to read some of what you have written – I hope they will – and that you do not mind the publicity.
April 24, 2008 at 4:21 am
xanthippa
Thank you!
April 29, 2008 at 6:13 pm
NTwife
Thank you for this post. The best description I have found of what I have struggled with for the 25 years I have been married.
April 30, 2008 at 4:13 am
lastcrazyhorn
Adifferentvoice – why hate a term that the majority prefer? Have you ever visited http://www.wrongplanet.net ? A board focused on aspies . . .
And I wouldn’t describe the life of an aspie as being “emotionless.” Quite the opposite actually. Just because we don’t express them as openly as some doesn’t mean that we don’t feel them every bit as strongly. I know for a fact that experiencing others’ strong emotions can be overwhelming for us; so while I can’t speak for anyone else, I must say that I put a certain level of control on my emotions to keep from inconveniencing others.
The rule “treat others as you would like to be treated” needs to be rewritten into “treat others as THEY wish to be treated.” We treat NTs like we want to be treated, and they mark us as cold and unfeeling.
April 30, 2008 at 7:55 am
adifferentvoice
LCH,
I’ve had a look at your blog, and found lots of interesting things there. I particularly liked the end part of this post ….
And I found this page which links to more pages about Aspergers (I link here so others can use it too):
I also quote this from one of the sources you mention (from an article written by Carol Gray and Tony Attwood):
“If Asperger’s Syndrome was identified by observation of strengths and talents, it would no longer be in the DSM IV, nor would it be referred to as a syndrome. After all, a reference to someone with special strengths or talents does not use terms with negative connotations (it’s artist and poet, not Artistically Arrogant or Poetically Preoccupied), nor does it attach someone’s proper name to the word syndrome (it’s vocalist or soloist, not Sinatra’s Syndrome). Focusing on strengths requires shedding the former diagnostic term, Asperger’s Syndrome, for a new term. The authors feel that Aspie, used in self-reference by Liane Holliday Wiley in her new book, Pretending to be Normal (1999), is a term that seems right at home among it’s talent-based counterparts: soloist, genius, aspie, dancer. With fading DSM potential, the authors submit a description of “aspie” for placement in a much needed but currently non-existent Manual of Discoveries about People (MDP I)”
Perhaps, then, I should feel less diffident about using the term. My reservations were an unwillingness to give the same label to a host of very disparate people (though we all do that all the time – think “British”, “Christian”, “lawyer” or “Turkish”, “Muslim”, “doctor” ) and a worry that it carries with it negative associations.
You end with this …
“We treat NTs like we want to be treated, and they mark us as cold and unfeeling.”
Yes, often that is because they do not realise that you are Aspies, and – judged by NT criteria – you may appear as you say. Emotions such as “gratitude”, “compassion” (not pity), “love” (even), “remorse”, “forgiveness” are all very different in an NT world. Though I am not saying that you do not necessarily experience them, just that you may experience them differently. Love (which is at the root of all those other emotions I mention), for example, for me is more than being “in love”, it is a long-term stable state of outpouring to another person, a going out from me and an inclination towards them, caring for them, worrying about them, wanting to make them happy, and I’m not sure that Aspies see it like that. That is also how I expect to be loved, which is where the rub comes in.
I understand what you are saying entirely, but I also know why it leaves NTs feeling sad and unloved.
Why not write a post on your excellent blog about how “Aspies” understand “love”, what it involves for the other person, and how they should read your language ?… that would help a huge number of people.
May 1, 2008 at 2:16 am
xanthippa
Oh, I think Aspies experience the feelings of ‘love’ exactly as you describe them.
The difference, I think, comes in at ‘how’ you express ‘love’. Sorry to use a cliche, but…
“If you love something, let it go. Then, if it does not come back to you, it was never meant to be!”
This, I think, sums up Aspie attitudes towards ‘love’ very well. Nothing will send an Aspie ‘packing’ faster than ’emotional smothering’. And, being fair, Aspies will do nothing to emotionally smother their mates!!!
We Aspies like rules and ‘understanding’ in relationships. IF we MARRY someone, and we PROMISE to hold them in a ‘special’ position, then THAT IS the defined state. Any additional pressure on the mate would be ‘smothering’ them – and Aspies are not likely to fall into that trap!
After all, you have already agreed on a life-long partnership. Why belabour the point? THAT would be disrespectful, because it would diminish your faith in your partner’s commitment!
May 1, 2008 at 2:33 pm
adifferentvoice
Xanthippa,
Very interesting. Having thought about what you have written, you make it sound as if Aspies suffer from none of the insecurities that beset the rest of us (that we are not good enough, attractive enough, funny enough, smart enough). How wonderful that would be.
For it is our insecurities that, on the one hand, often produce negative emotions such as jealousy, anger (often, because we actually feel hurt) and which lead us to manifest, that is, make obvious, those more positive emotions such as gratitude, compassion, love and so on.
For example, saying “thank you” when somebody gives me a present, is a mixture of many things. But most of all it signals to the present giver success – it is, if you like, a gift back to the giver. Presumably the present giver set out to give pleasure to the recipient, and the recipient in saying “thank you” tells the (insecure) present giver that the goal was achieved. But it would be the recipient’s own imaginative experience of the giver’s insecurity that would prompt the “thank you”… or am I over-thinking this?
I’m not sure that an Aspie would naturally see the point of saying “thank you” even if they learn that it is expected. Again, correct me if I am wrong …
May 1, 2008 at 5:07 pm
xanthippa
I think I am following what you have said. And I’m not sure what to think about it. I am a slow thinker, so this may take me a little to process (my kids say I’m a slow thinker because I cross-reference way too many things) :0)
Aspies feel emotions, just like everyone else. Let’s just get that out of the way. And this includes positive as well as negative ones.
For example, I have incredible insecurity issues. For most of my life, so much of what I have said or done had been twisted and misunderstood (my POV – of course, reality suggests that I simply inapropriately expressed my intent) that I have striven to OVERDO this communication thing…and have somewhat succeeded. Yes, I can write a bunch, and often get my point across – so that makes me happy. But I am also realistic enough to know that I don’t get my point across much of the time – and that makes me very afraid to actually show people ‘stuff’ I’ve written.
In blogs, it is not so bad – I can have a chance to ‘correct’ things when people point out to me I’ve missed my point. But I have also written fiction – yet will not likely ever show it to anyone but 2-3 trusted friends.
Does that make sense?
And as for the situations you have described above: I can see how it can APPEAR that we have no insecurities and so on. But it is not the case. Let’s take the example of a relationship.
I get married. Before entering a marriage, I have ideas, very definite ideas, of what the partnership entaisl, roles etc. It is important to marry someone whose ideas on the rules of marriage, and your roles in it, are congruent. Or, at least, that you work out rules ahead that you both agree on – or you will simly be setting yourself up to fail.
But, once the rules are established, I will do my best to fulfill my part. And of course I have fears, am I not doing it right, is there going to be problem, will my husband meet someone prettier/younger/smarter/neater who makes him fall in love with her, what if !!!!! But these are MY problems. Demonstrating them outwardly would burden my husband with my baggage. That would not be a very loving thing to do!!!
Plus, by clearly and plainly expecting my husband to fulfil his part of the partnership, without all this extraneous stuff, I am actively demonstrating my trust in him.
That is a good thing. You can only trust (in the good way) people you respect and love. So this is also a demonstration of love. Constantly doing things to ‘win the other person over’ implies that ‘they are not there’ – in other words, they are not loving you. It accuses them of not fulfilling their part of the partnership.
OK, I am exagerrating – to get the point across. Plus, most of the time, this is not ‘reasoned out’ step by step (though I have met people for whom it is) – yet it is somewhat implied. And yes, Aspies do learn that ‘social exchanges’ have rules and are a language of their own. It’s just a silly language, whose point (to some of us – or to certain degrees) is really opposite to common sense. (Yes, we have a weird and unusual conception of ‘common sense’).
You raised the emotion ‘gratitude’. I cannot stand when people feel ‘gratitude’ towards me!!!! ‘Grattitude’ is, deep down inside, a form of ‘happy guilt’.
I did what I did because I wanted to do something nice and or helpful. Enjoy it. I would not have done it if I did not want to. And I meant it to be a nice thing for the recipient(s).
When people exhibit ‘gratitude’, they exhibit ’emotional obligation’ to the person to whom they are ‘grateful’, and attempt to ‘do stuff’ for them – not because they want to, but because they think they have to. And if you do not ‘accept’ their ‘stuff’ (be it object or emotion or whatever) you are made out to be the bad person.
But they did not give this to you because they wanted to be nice, or because they wanted you to be happy. They do it so that they can no longer feel guilty for having accepted ‘it’. And giving me stuff just to get out of feeling guilt is not being nice to me. So, burdening me with their gratitude is kind of rude of them, and I will make sure not to ever do anything to make them act this way towards me again.
Again, I am exagerrating for clarity’s sake, but not that much.
I guess I am saying that positive emotions are best expressed by acceptance, so that one does not smother. Negative emotions are best dealt with internally, so that you don’t burden your loved ones. Also, I think we may have a very different idea about what emotions and/or feelings are ‘positive’ and which are ‘negative’.
Does this make sense?
There is another blog, by a female Aspie, called Big Liberty (at wordpress). She has not written too much on this, but says she intends to. I am curious if her experiences are congruent with mine. If I find she has written about it, I’ll link to it, but mention it here because I thought you might like to check out her blog.
May 1, 2008 at 5:32 pm
adifferentvoice
‘Gratitude’ is, deep down inside, a form of ‘happy guilt’
We disagree here. That is not what gratitude is for me. It is something very different. At least I am talking about naturally occurring gratitude, not forced gratitude. People may make you feel obliged, as if you HAVE to be grateful. That, I agree, is quite horrible and to be resisted. If somebody does something for me, or gives me something, there is absolutely no obligation on me to feel grateful. None whatsoever …
Gratitude is a form of love, often agape. Often if someone does something for me, or gives me something it is a way of them expressing their love for me (read The Five Love Languages – these are two of them). In turn I may feel overwhelmed by their love (shown by the acts or gifts) and it will provoke in me a quite natural love for them, which I call gratitude. Sometimes that burst of love from me will occur many years after the event – I may not have realised at the time that it was indeed a gift of love.
Again, an example. We enjoyed a wonderful Greek Easter with our friends at the weekend. They were very generous hosts and made us feel very comfortable and at home. I wanted to thank them, not because I had to, or because they expected it, but because I felt touched that they had asked us, and wanted to show how much we had enjoyed ourselves and appreciated their hospitality.
Gratitude is something freely given, not demanded.
Gratitude, deep down, is a form of love. In my book.
I’m going to be away for a few days now, but thank you again for your comment, and the link to the other blog. I know several people have read these exchanges and found them useful. I really think that there is room for a book on the subject, half written by an Aspie, half written by an NT, covering all the major emotions. For I can see your point of view, and respect it, but it is very different from mine.
May 13, 2008 at 9:25 am
Bev Williams
Hi I wondered what the NT wife has been struggling with all these years. I appear to have an Aspergers husband and I have struggled in an unhappy marriage for 5 years, I knew that there was something wrong with him from the start
but had never heard of Aspergers til I contacted Relate in Derby. Everything I said ticked all the boxes. I am, yet again at the point of leaving. I hate being with him but he can be so nice ! I have to keep everything a certain way. Eggshells. I darent ask him to do certain things or he loses his temper. Simple questions like ‘Are you going to watch the whole of this programme can cause him to get angry and accuse me of preventing him from watching what he wants to watch.’ When I ask him why he got angry he has said many times that I asked him in the wrong tone of voice ! He is really weird ! I never get anywhere with him ! Its so hard sometimes I just want to die ! to get out of this confusing, quagmire. It is so exhausting.
May 13, 2008 at 10:09 am
adifferentvoice
Bev, Relate in Derby sounds like a good place for both of you to start sorting things out. I have enormous respect for Relate-trained counsellors. If he won’t go with you … then I guess he doesn’t want to help make things better for both of you and why should you stay in a situation which you clearly find intolerable? I’ve become quite dogmatic about this over the years – that and giving everyone the chance to make things better. I cannot think of any good reason for not going to Relate if your relationship is in trouble. Don’t do all the work yourself.
I’ll happily put you and NT Wife in touch if NT Wife agrees (and sees this).
May 29, 2008 at 11:11 pm
knittaroo
Thank you so much. I seperated from my husband two months ago after 10 years of feeling emotionally starved by his ‘unreasonable’ behaviour. And yet I knew he did love me, so was unable to understand why he was like that with me.
Two weeks ago I had a lightbulb moment when I saw him objectively throught he eyes of a stranger for the first time and he practically had a neon flashing sign saying ‘aspie’ over his head. I have been reading up since then and can tick so many boxes I am convinced this is him. He is Aspie.
Now I hope to find a way of suggesting this to him, in the hope that he can also gain a greater understanding of himself and of why i left. He does not understand AT ALL. I promised didn’t I? Till death do us part. So why am I gone?
Anyway this is a geat site and has been of great help to me. If anyone has any advice on how I could begin broaching the subject with him so he could seek support / diagnosis that would be really helpful. I am also interested in being put in touch with anyone is similar situations…
Thanks so much.
[Ruth, sorry this took so long to appear. I’ve been away and those who haven’t commented before have their comments held for “moderation” the first time. I’ll happily pass on email details if Bev would like.]
May 29, 2008 at 11:12 pm
knittaroo
Bev,
you sound so like me. It would be great to get in touch maybe?
Ruth
May 31, 2008 at 6:18 am
Sim
It’s now coming up to 2 years since I left him for every reason you described in your post.
It’s still a hell of a lot to get over though. I’m still finding myself again.
Your post was most accurate – thank you.
June 2, 2008 at 9:01 pm
loissy
Isn’t aspergers just extreme maleness? The polarisation that is male and female surely defines this? Females with a more “male” brain are often aspergers.
It is just as things are – and has a function – single minded pursuit of a goal – avoiding all emotional detractions is very male – and typically aspergers.
Look at the man who discovered vitamins(Hopkins) – who else would have recorded what they fed their hens in such detail – look at Madam Curie and radium, look at Bill Gates. Nature’s goal in all these cases is to advance the development of the human species. All these people in their own way have.And Mme Curie was probably aspergers.
The male and female brain are so different in function – the male brain is larger, but the female brain has many more connections.
This is why women can multi-task – the messages flo to and fro across both hemispheres. They don’t in the male brain. The extreme male is the loner, the single minded explorer, who will mate in accordance with nature – but won’t philosophise about love and emotions.
We are the sum total of our brains and our genes.
June 2, 2008 at 9:26 pm
adifferentvoice
Well hello Loissy!!
I was wondering when someone would step in, to redress the balance, to remind us what we owe those who have extreme schematising brains, and how impoverished the world would be if they had not dedicated their massive brains in their single-minded way to their chosen pursuits.
But this post has attracted more comments than any other (I think), and that is because empathisers and schematisers don’t agree on some basic vocabulary, on probably the most essential word in whatever language we speak. Love. Neither is right, neither has the monopoly of all the answers, but the disjunction between the two definitions (translated into action) is clearly extremely painful. Because these schematising men tend to be very able in a way which the world recognises, they tend to have more power than their empathising partners, and it is fairly easy, therefore, to reduce those partners to shells of their former selves, their self esteem shot to pieces as the schematisers insist in their mind-blind way that it is they who are right always.
Have you read this, btw?
http://en.wikipedia.org/wiki/The_Female_Brain
The Intrepid Explorer swears by it, and lends it out to friends who could do with some inside knowledge :).
And more affirmation of “aspies” here (scroll down to the end) : http://www.thegraycenter.org/sectionsdetails.cfm?id=38
And, now, how about that swim?
August 6, 2008 at 9:25 am
fiona
being in a relationship with a man who has AS, is like ‘knocking on a glass ball’..he’s in this place you can’t reach, and you’re always afraid of knocking too hard and shattering the fragile state of affairs.i’m interested in the comment about a relationship usually lasting two years?..is that due to them not being able to project themselves any longer in a state of ‘normalness’?..does the two years apply also to employment or housing?..i feel now that AS is becoming more recognised,the effects on partners needs to keep up with the developing understanding of this condition also..i’ve found doctors to still be in the dark about the mental and emotional hurt that occurs,both when in a relationship and when ending a relationship with an AS man..your site is very helpful,thankyou.
August 11, 2008 at 1:58 pm
adifferentvoice
Hi Fiona,
Sorry not to have replied sooner – I’ve been away.
I’m not an expert – but you might like this link which offers an explanation to the “two year” period:
http://news.bbc.co.uk/1/hi/health/4669104.stm
You’ll find a lot written elsewhere on the subject taking a different tack (follow, for example, links on “limerence” – such as this: http://en.wikipedia.org/wiki/Limerence)
I suppose one explanation might be, drawn from the BBC report, that the limerence inducing hormones are present in all brains during the “in love” period, including the brains of those with Asperger’s, but that the normal oxytocin replacement is absent once that period is over, leaving the spouse/partner with a bemused feeling, asking where has all the love gone …
Perhaps you’ve already seen this book:
by Maxine Aston, who has a counselling practice (associated with Relate, I believe) in the UK.
September 13, 2008 at 9:46 am
billie
If any of the contributors to this website can help, I’ll be grateful.
I’m in what I increasingly realise is a relationship with a man with Aspergers. Its obvious, when you look back, and I’ve been suspecting this for about a year. As it gets worse and I seek new understanding, I discover new descriptions that fit things more and more. Today’s discovery is the ‘2 year shift’ after that early love period, which SO fits my life. (He’s also much calmer after we’ve made love, the act of which produces big shots of oxytocin, so that is one more tiny piece of evidence for the theory. If you want some more, people with autism and AS often have trouble being touched — though deep massage is better for them, than light touch — and touch produces oxytocin. If they don’t get touched, they get less oxytocin, and their state spirals further downward.)
We’ve been together 4 years, we’ve tried marital counselling, all my friends think I should leave, etc., etc.
Here’s my key question: His anger is the problem. He’s angry and irritated about everything, and its debilitating me. We have terrible rows. They are bad for both of us, and I don’t recover from them well at all. His tone is extremely corrosive for me, and he interprets much of what I do as insulting in some way, and he gets defensive about that and I am left stunned that he sees me so negatively. He does recognise that he is often impatient and ‘over-sensitive’, but that recognition doesn’t change things. Yet it is very clear that we care deeply about each other and we don’t really want to give up on this. When its good between us, its very very good. (My friends have significant doubts about this. I’ve stopped explaining.) He really is trying so hard to make it work, I can see that (he makes all sorts of efforts and he’s gone back for counselling individually) — he just can’t manage the frustration enough to let us work together on the problems, and I can’t manage the fear and shock his anger causes in me.
So the key problem (from my perspective) is his bursts of anger.
I am now planning to move out, to see if some space will help us (though I am grieving the loss of the beautiful home we’ve been trying to build and I don’t know how we’ll afford this). We have talked about this option and he is in agreement, through very sad. We aren’t seeing it as a break-up exactly (which isn’t what either of us really wants). I just don’t know what else to do, because my life and self-esteem and sense of competence is collapsing.
I guess what I would really like to know, which no one else can of course answer, is whether I am kidding myself. Is there no way this anger will reduce? Is there anything else we, I, can try? It sounds so soppy, but my heart is breaking and I feel like I am drowning in grief.
Does anyone have any ideas?
September 16, 2008 at 8:04 am
adifferentvoice
Billie,
Sorry not to have acknowledged your comment before now. I was wondering how to reply.
I have found labels (“Asperger’s”) useful in the past. It certainly makes you feel less mad if you can label the other person, and that is good, if you have been feeling Cassandra-like and mad.
However, the label is just a name, and it does not help you deal with the problems in the relationship at all. Those can only be dealt with between the two people involved, and I think couple counselling can be an effective way to deal with that. An experienced counsellor should be able to help, but, ultimately, there is always the possibility that the reality is that you are both so different that the compromises needed in order for both of you to feel happy and fulfilled are too much to ask. Then there is the sadness and grief about a relationship that seemed to promise so much.
Without the hope of anything better, it can be tempting to hang onto something that will never ever be what you want it to be … certainly a relationship that ruins your self esteem and sense of competence is not going to make you happy.
It’s very difficult when you are flooded with emotion to see things from a more objective perspective. If nothing else, counselling can provide the space in which to develop that perspective, those insights, and move forwards.
The two year period, btw, is not only a phenomenon of those who have Asperger’s. It happens to everyone – it’s just that the contrast between the first two years and the subsequent years may not be so great. Still, there are many people who have woken up when the limerence wears off, and wondered where the “love” had gone (which, of course, wasn’t really love in the first place, but selfish, biologically driven hormones …)
I hope things work out for you. I also hope that others post their thoughts here in response to your comment… that would be good.
September 27, 2008 at 5:57 am
Kate Pritchard
Quite clearly the best description of living with an Aspie partner I have read. I am currently seperated from my Aspie husband after 10 years. I also have an Aspie daughter who is 7. Caring for an Aspie child is totally different from living with an Aspie husband. Unfortunately I didn’t find out until after the seperation that he had Aspergers. I wonder now if it could of worked or would work in the future, I always looked at him as being incredibly complex but now realise his way of thinking is just totally different.
September 27, 2008 at 10:09 am
Kate Pritchard
Hi Billie
Having read your post it is almost identical to my relationship with my ex husband of 3 weeks. We lasted 10 years and in fact he finished the relationship. I have sought counseling and realised it was very unlikely it was ever going to work. You describe the irritation and angry behaviour which I have dealt with for years. I constantly strived to get him to communicate and couldn’t understand why it didn’t work. His irritation, anger and tone of voice were all prevelant. I have 3 children with him who he has not seen since he has gone and yet there seems little guilt, remorse or concern for even them. I found this really difficult to deal with. He told me today on the phone that he wants to be alone and doesn’t have the need to be with people or the need for the kind of love that we experience.
He probably won’t be able to change and probably will not want to, his whole perspective on life is different from mine or yours. You have probably done the right thing by giving him some time out. There obviously is a need for them to be alone. I think it is where they feel comfortable.
I have offered him help and support but he just can’t seem to deal with life. He even told me the children crying or making to much noise can irritate him.
Just give yourself some time and think about you for a bit.
October 3, 2008 at 7:58 am
adifferentvoice
Thanks, Kate, and thank you for giving wise words of comfort to Billie. I’m always happy to put people in touch with each other, providing they are happy for their emails to be exchanged.
October 24, 2008 at 7:29 am
anat
May i translate in a easteeuropean language parts of what i find here and use i in some articles?
Seems to me special the idea that the border between NT and AS is not so well delimitated. There is a continouse area of different degrees according to size maybe of amygdala.
And also the idea that there is not a lack of emotions in AS but on contrary too many emotions which can not be put on hierarchical place. This may lead to total confusion so the only way to prevent this would be that the AS chose to not reply to this emotions and to try to keep them close. Some of AS complain about the effect of emotions on them some just refuse them authomatically so emotions seems to not reach them.
Can be as the coulour spectrum? we know that there are some basic colours but the passing from one to each other is made by many degrees.
Also seems that some women , so called NT (but also with specific patterns-high grade of emotions) have a strange preferance to be with AS. (think i am one of them)
October 24, 2008 at 10:49 am
adifferentvoice
Anat, thank you for leaving your helpful comment. I like your very positive way of seeing difference, and can entirely understand your preference to be with an AS partner – because they have many strengths. I like your visual refence, too, to the colour spectrum, and the idea that it is not absence of emotions but an inability to process them that may make AS people appear to have no feelings. I think lots of us can behave like that sometimes …
I liked this recent post on Xanthippa’s blog, about Aspies and fair play …
http://xanthippaschamberpot.wordpress.com/2008/10/22/aspie-sense-of-fair-play-kids-and-rules-of-the-game/
The downside is that it can be exhausting to have to explain everything all of the time – especially at times of overwhelming need. Intuitive empathy feels nice then.
October 24, 2008 at 2:35 pm
Stunnedbutprobablyhopeful
My husband and I have been in marital counseling since before we were married–and that was 18 years ago. He has been diagnosed with ADD, non-specific personality disorder with predominant narcissistic aspects, paranoia, passive aggression, and depression/anxiety. Lots of labels–nothing has helped us. He has rejected these diagnoses out of hand. I, on the other hand, have been diagnosed with depression/anxiety and meeting some criteria for histrionic personality disorder. I accept my diagnoses, I take Cymbalta for the depression (which works) and have a large support group of girlfriends and colleagues.
But I’ve just finished my 5th book about Asperger’s and almost everything I’ve read seems to fit my husband (and a NT wife) EXACTLY. I suddenly feel hopeful for the first time! I don’t care if he is an “aspie”! I just want to understand his terrible LONELINESS and all of his wierd, “twilight zone,” behavior! Why does he break a water glass and leave the glass shards in the floor for the kids and animals to walk through? Why does he forget to give me important messages? Why does he buy me a book called “Is Your Thyroid Making You Fat” and really believe it’s a thoughtful gift? For the last 15 years I’ve suspected him of trying to “gaslight” me–drive me beyond the bed, but my friends love and support me and want to be with me–they tell me I’m not crazy or unrealistic in my unmet expectations.
But if my husband has Asperger’s–well that’s a whole new take on everything. Suddenly I can begin to understand all the puzzle pieces. He’s very lonely, too. He’s terrible frustrated.
Why are we still together? Because we love each other, and somehow, somehow, God only knows how, we sensed we loved each other even though we had each become “the enemy.” He’s brilliant, eccentric, endearing, and completely maddening. He’s a good person, but he says very mean things. And I’ve gently talked with him about the possibility that he may live in this interesting, creative universe of Aspergerdom, but he cannot hear it. I’m just one more person pointing out his deficiencies. But I’m going to wait this out and just keep loving him and massaging him and telling him I love him and continue my modified behavior since my research and hold on to the bit of hope this new understanding has given me. He’s extraordinary, but he doesn’t know when to come in out of the rain, and maybe just maybe I can appreciate that and feel grateful and be willing to show him when it’s raining instead of shaking my head in despair.
I have plenty of NT support. What I need now is input from the other side to help me understand and feel loved so I can keep loving.
October 24, 2008 at 4:03 pm
lezleevictoriah
excellent post. i am a female with the non-empathic end of asperger’s. i consider myself and my family with AS a bit higher functioning (whether due to training, socialization, or just the benefits of a high IQ) than your characterization but otherwise YOU ARE RIGHT ON THE MARK. you are now added to my blogroll.
excellent!
November 1, 2008 at 9:45 am
adifferentvoice
Thanks to both of you for your comments on this post – it has attracted more comments than almost any I can think of … Lezleevictoriah, thanks also for adding my blog to your blogroll. I had a look at your strong photographs, and would love to know how to take photographs like that.
Stunnedbutprobablyhopeful – I’m so glad you have lots of NT support. I can imagine the relief you must feel having arrived at an understanding of a man you love which does not involve him being bad, only different, and which means that you are not mad, but just speak a different language. Somebody really should write a dictionary to help everyone with the necessary translations, except that I’m not sure that the word “love” would translates very well. Respect, loyalty, abstract fairness – not a problem, but “love” as you, an NT, understand it …? I’ve often thought about how to describe love, and it’s very difficult to describe it to someone who has felt it. Perhaps one day I’ll find someone with Asperger’s who is able to describe their understanding of love, and we could have a jointly authored post that might further everyone’s understanding …
November 17, 2008 at 4:07 pm
Stunnedbutprobablyhopeful
Dear ADV,
Just wanted to share with you and lezlee about the remarkable change in our lives the last month. I’m consuming everything I can find to read on Asperger’s (very predictable) and continuing to radically modify my behavior.
However, the initial paradigm shift for me was instant, all the puzzle pieces beginning to quickly fall into place, and seeing his world and my relationship to him in a COMPLETELY different way. I didn’t have to TRY to shift: the shift took place by on its own when I saw our ways of destructive interaction and conversation (nearly word for word many times) described in the literature over and over.
So now I’m the one who’s different, and I’m the one who is falling in love all over again. I’m giving deep pressure massages, which he can’t get enough of: spending time talking with him in the evenings in very low light, where he doesn’t have to try and read my facial expressions; gently helping him out in social situations, saying, for example, “There’s Tom and Carol–their son just went off to U.T. law school. Tom and Carol.” (And these would be HIS colleagues–NOT mine.) He is very grateful for this help if I offer it in a way in which he knows I’m “on his side” and with him every step. And when we sit together in low lighting in the evenings, snuggled up and not facing each other, he is completely relaxed and is beginning to “talk” to me.
I didn’t expect the response I’ve gotten from him. It has been immediate and relieved and significant. He’s taking the trash out sometimes, and he washed the dishes the other night, and he’s sharing some things that worry him–all unprompted. He’s stating his needs: “I have to go to this dinner for my mom in the nursing home, and I really don’t want to go alone.” Last week he brought 2 roses home from an event and gave them to our daughter, who is 15. She said, “Dad, you should give one of these to Mom–not both to me.” He looked very dejected and apologetic and left the room. But a few days later, he brought some Snicker bars home from an event and gave them ALL to me! He’s trying so hard, and I love him for it!
He has no memories of his childhood at all–it is completely blocked out except for the happy summers he spent on the farm with his grandparents taking care of the horses and cows. But this week, for the first time, he was able to access the troubled memory that he was teased a lot and was “nerdy.” Perhaps more memories will come back as he begins to relax in a safe place.
I’ve spoken to both the kids, without labels, and explained that their anger with their father for being so “wierd,” unpredictable, and undependable is due to a different kind of wiring in his brain and that he is doing the very best he can in his world–that he doesn’t have a disability, just a very different way of experiencing life. They’re great kids–they have responded quickly, too, cutting him a lot of slack and being very patient when they have to repeat things over and over and when he forgets things or makes inappropriate statements. They’ve begun to say, “Dad, that’s not really appropriate,” instead of losing their temper. Even the 2 kids (14 and 15) are being kind to each other–WOW!–in ways I’ve never seen.
It’s as if I altered my way of seeing the world and my behavior and all the tension drained out of the house like dirty water from a big bathtub. I’ve slipped up 3 times so far and shown my exasperation, but that’s not so bad for a whole month!
It has been very helpful to make a “What he WILL do” list instead of a “What he can’t or won’t do” list, as Ashley Stanford suggests in her excellent book, Asperger Syndrome and Long-Term Relationships.”
He will drive Mike to school and pick him up.
He will always be diligent at work.
He will always be kind and gentle if I am kind and gentle to him.
He will pay the bills on time.
He will keep the cars serviced.
He will grocery shop.
He will often help me if I am extremely specific and tell him exactly what I want (that requires no planning), why I need help, and ask gently. For example, if I say, “I just brought home 6 bales of hay. Would you please help me carry them from the van into the garage–I’m really tired,” he has no trouble helping at all. For years I’ve been saying with so much irritation, “I shouldn’t have to tell you how I need help!” If I’d only known.
He loves animals.
He is very kind to children.
He can remember ANY phone number, which is handy.
He values family.
He still refuses the A label, and that’s ok with me for now. I’m going to relax a bit and go with the flow and be grateful. And I’m very grateful for all the support on your post and other places on the internet that have been so helpful in taking the blinders off. Our professionals need to be updated on all this information. Most people’s ideas of Asperger’s, if they’ve even heard of the term, are very extreme.
And about “love” in an aspie’s world. I do know that my husband feels many emotions so strongly that he cries or quickly shuts down. I know he cares for me deeply in his way. Some evening when he’s very relaxed and had a glass of wine, I might ask him to talk about what love is to him. He’s a philosopher, so I may get an interesting response. Blessings and light to you, adv!
November 17, 2008 at 10:50 pm
adifferentvoice
Aaah! What a lovely comment – the sort that makes blogging worthwhile.
I’m so pleased that things are working out for you. As I began to read your comment, I was wondering if the traffic was all one way but, no, your husband is giving to you too.
I liked what you said about having to tell him specifically what you need. I think this is something that so many of us struggle with: we think that our family and friends should be able to anticipate our needs, to be mind readers … and we get upset when they cannot see inside our heads.
It doesn’t sound as if you need to label anybody, though the label may have helped you see things differently – and what is that mantra “You cannot change the other person, you can only change yourself”. If our brains sit on a continuum who’s, anyway, to say where Aspie ends and NT begins?
Somehow having to spell out one’s needs often feels unsatisfactory, but that’s just a misconception.
Feeling confident enough not to fear rejection if you do dare to voice your needs says more about the honesty in your relationship than anything else I can think of right now.
I’d love to hear the philosopher’s response!
PS: Amused, sort of, by a very left brain response from a mathematician at parents’ evening at my daughter’s school. She’s about to choose subject for her final two years and would like to choose maths. The maths teacher began by saying “I don’t know if you are any good”, and his colleague then joined him and greeted her with “I don’t know if you are any good”.
My daughter receives the message that she is not good at maths (not true), and I actually feel pain in my tummy because I begin to understand her lack of confidence, when what they actually meant was “I cannot know whether you are any good at maths because I have never taught you”.
What they could have said was “How fantastic that you’d like to carry on your maths studies. It’s a great course where we really get to delve deep into problems and solve them. We’re a really strong team of teachers, and I’ve heard that your set is very strong and predicted A* results, so that’s a pretty unbeatable combination …” But, if they’d said that, chances are they wouldn’t have been any good at maths …
November 26, 2008 at 6:39 pm
april
My husband likely has AS, as he posses many AS traits and two of our four children are on the diagnostic path which seems to be leading to that conclusion.
I don’t know that I agree that all AS husbands are incapable of providing emotional support to their wives. I can tell my husband loves me and to me it seems that he knows what love is.
I agree it is much harder for him to provide emotional support than for much of the general population, infact lately I have had to make it a point to speak up when I feel like my feelings aren’t being held in equal balance with his own. But when I point out to him what I need he usually is willing to try hard to give it to me, even if it is exausting and hard for him. I can tell my husband loves me very much and even though he has a hard time with basic things like social interaction and having patience when the kids throw tantrums, I can appreciate the fact that he has limitations and how hard he is working to be a good husband and father.
I have also found journaling to be the best thing I have done for my marriage. I can get out my feelings and deal with them on my own much of the time this way. Then I lean on him everyonce in a while when I really need it instead of all the time, non-stop.
I have found accepting him for how he is instead of pushing him to be someone different has helped him to be there more for me. The problem with knocking on the glass all the time is that the animal behind it has a tendency to hide from the sound and curl up in the corner instead of responding positively to your needs.
November 28, 2008 at 11:10 pm
adifferentvoice
“The problem with knocking on the glass all the time is that the animal behind it has a tendency to hide from the sound and curl up in the corner instead of responding positively to your needs.”
I’m sure many would agree with this, and I like the way you put it. Perhaps Aspies seek out those who are good at looking after their own needs, who are independent and fairly self-contained. I think, though, that the most independent woman may find her needs grow when she has children to look after as well – it’s hard to remain as independent and relatively needless when, as a mother, you are asked to give out love all the time to your children, and you need to draw on a deep well of affection yourself.
I’m glad that things work so well for you, and that you’ve found ways of dealing with your feelings without banging on the glass wall. I’m not sure I’d be able to survive, but we’re all different, which is a good thing.
February 1, 2009 at 12:52 am
marianne
I now realize there is a real diagnosis for my husband of 14 years. I thought it was the alcohol habit, but now I see he is not changing in this life, but I hope to change mine in the near future.
February 1, 2009 at 4:54 pm
adifferentvoice
Marianne – don’t know if you’ve already read “Loving Mr Spock”, by Barbara Jacobs. I read it recently and thought it was a painfully honest account of one woman’s attempt to share her life with a man with Asperger’s syndrome. It doesn’t have a happy ending, but she considers what might help such a relationship survive. It’s a bit long-winded in part, but also contains a broad survey of the help available, and the advantages and disadvantages of a diagnosis. I’ve read quite a lot of other similar books, and this was the best I’ve read yet. Information is focussed on the UK.
February 3, 2009 at 8:20 am
loissy
An IQ of 130 for an woman is not at all unusual!
I would have thought that the Mensa level at 145(?) was more indicative of potential Aspergers. Grammar school level was usually at 120. However, there are also cases of very “brainy” people – my father as an example who always got 100% in Maths, with surprisingly unhigh ( as opposed to “low”) IQs. Genius is around 150 level -Bill Clinton is around 160, do you think he has Aspergers signs? My son has so much trouble processing information that a conversation can turn into a translation service, yet he is able to do non-verbal reasoning really well. We go to the doctor on Wednesday….
February 3, 2009 at 9:11 am
adifferentvoice
“An IQ of 130 for an woman is not at all unusual!”
Not among your friends perhaps, but in the general population, yes.
If you had a 1000 people in front of you, only 22 would have IQs of 130+ (2.2%) and of those 22, more would be male than female.
Though men and women have identical average IQ scores, men feature more heavily in the top and bottom quartiles, whilst women tend to cluster around the average:
Click to access deary2003.pdf
Perhaps 9 women out of that population of 1000 would have an IQ of 130+, and I think that makes them unusual.
I don’t think it is true that all men/women with very high IQs have schematising brains, at least not only. I remember listening to Simon Baron Cohen talking on the radio about composers and their brains. He contrasted Bach (schematiser) with Mozart (balanced hemispheres). Both brilliant.
If Clinton does indeed have an IQ of 160, then I would imagine he is one of those men blessed with a rare brain that can both emphathise and schematise, though 160 sounds too high to me. Barack Obama comes in at 130, apparently.
http://www.kids-iq-tests.com/famous3.html
http://en.wikipedia.org/wiki/U.S._Presidential_IQ_hoax
I hope things go well on Wednesday and that you get to see the right person.
Margaret
February 14, 2009 at 11:29 pm
Jennifer
“A recent, as yet unpublished, piece of research at Cambridge University puts the figure at 1 in 58*.”
Maybe that’s because they’re expanding their definition. Personally, I’m against making every socially awkward math whiz and half the eccentrics feel bad about themselves.
“I often think that Christ (absent the miracles) may have been an Aspie.”
If they can pathologize Jesus, then they can pathologize anyone! Now we know this is getting ridiculous.
If your intelligence is more than slightly above average, then don’t feel self-conscious about socializing like it. Do we expect people of average intelligence to socialize like people of average intelligence?
February 17, 2009 at 5:15 pm
Chell Taylor
Well I haven’t read all of the comments, but the ones I have read have not surprised me.
I am married to an Aspergers man and yes the description is pretty close, however he is very loving and can be intimate with his feelings (but it does take some digging too get him to open up).
I can’t imagine my life without him. He completes me. He has been extremely supportive in everything I have needed support for.
I am very intuned with my feelings and those around me, where he certainly is not. But I am also intelligent (and yes I was surprised by the figure of 130 as my IQ is 132)
When we work together you can’t find a stronger team. We have the strongest and most loving marrage out of all of our friends. I have been honoured to be married to my Aspie husband.
February 17, 2009 at 6:47 pm
adifferentvoice
Good for you, Chell. I suspect many of us are “Aspie-hags”, to coin a very dubious phrase.
March 23, 2009 at 12:57 pm
Anonfornow
I don’t see how Jesus was an Aspie. Please explain.
I think my father is an Aspie. I am angry with my mother, she had the choice to marry him, but I had no choice over who my father was.
My IQ was once measured at 140 on a Weschler test, I’ve no doubt my father would score much much higher, and this part rings true; “these schematising men tend to be very able in a way which the world recognises, they tend to have more power”.
I suspect I am an Aspie, I did that AQ test, got 33. I have suffered from my father being an Aspie, but I think if I had a husband or children my deficiencies would mean I did the same to them. If I need love, why can’t I give it?
I am also an ex grammar school girl, from the silicon corridor. Looking back, I now have my suspicions about some of the other girls.
March 25, 2009 at 1:14 pm
Anonfornow
Earlier I wrote “I don’t see how Jesus was an Aspie. Please explain.”
I think I get it now. I won’t say more here, it’s too public.
March 25, 2009 at 2:15 pm
adifferentvoice
Hi Anonfornow,
I am sorry not to have responded to your comment before now – I’m usually pretty good at responding, but I’ve had things on my mind over the last few days. I have been thinking about your comment quite a bit.
First, what I meant (rather light heartedly) was that Jesus was capable of the sort of objective, impartial affect that I think it is possible to see amongst those with Aspergers. The rest of us are generally much more partial – we prefer those we love most.
What I also wanted to say, referring to your earlier post, was that I admire the way you are thinking about how your history might affect any children you have. Again, most of us don’t bother thinking that far ahead, only to be surprised that our horrible histories – if we have them – have a nasty way of resurfacing and we have a choice of either revisiting them on our own children, or dealing with them. Either they pay, or we pay.
I’ve no idea whether you really have Aspergers or not … I’ve been spending much of the past few days wondering whether Aspergers is sometimes just a name for the way people behave when they have closed down their right brain in childhood as a perfectly appropriate survival mechanism …
Sometimes, if we are aware of our deficits, we can find ways of making up for them. I know one or two women who knew they were not very maternal, so chose excellent, consistent caregivers to help them out for the first ten years or so.
Having a child is almost always a selfish act, but one that afterwards serves to make us bigger as people. You are the only person who can decide what is right for you, and any children you may decide to have. It sounds as if you’ll approach that decision very thoughtfully.
There’s an email address on the side bar btw.
March 27, 2009 at 10:20 pm
April
Thank you so much for writing this. I’m 21 and almost a textbook Aspergian–except for the anger part, and for being a female. (I was only diagnosed last year, and even the one therapist I spoke to who knows Asperger’s has said that he’s never met a female one.) It’s a bit disturbing and depressing to me to read about all these Aspergian marriages and relationships that never work, because they seem to mirror things that have already happened to me and while I’m not terrified of being alone, it is harsh for me to accept that I really might never experience what the rest of the world calls “true love,” or that I don’t even know what it is.
To some extent, however, it does make me feel better to know that there are people out there who are compassionate towards the idea of people like me–especially females.
So thank you.
March 29, 2009 at 1:43 am
xanthippa
Please do not make the mistake of thinking that ‘high-functioning Autism’ is the same as Aspergers!
They are very different things!
Autism is physiologically known to have undifferentiated brain cells in the frontal lobes.
Aspergers is known to have undifferentiated brain cells in the amygdala.
This makes them very different in the way they affect people.
However, there are SOME people who have undifferentiated cells in both the amygdala and the frontal lobes: it is this ‘overlap’ group which makes it difficult to ‘draw a line’ where one ends and the other begins… Yet, that does NOT mean the two conditions are one and the same!
March 29, 2009 at 1:46 am
xanthippa
The vast majority of Aspies are NOT male.
The condition occurs just as often in females.
However, because it presents differently in females than in males, it is much less often diagnosed in females.
The absence of diagnosis does not mean an absence of female Aspies.
March 29, 2009 at 2:03 am
xanthippa
You say: “The Aspie does not know what “love”, outside the obsessional interest of being in love, means.”
That is no only factually wrong, it is offensive!
Aspies do know what love is, and demonstrate it every day by accepting each other fully.
Marriage is not courtship: marriage follows courtship. They are distinctly different phases of life, the boundary between them is marked by a ceremony.
Knowing the difference – and respecting the appropriate behavioural changes – is something Aspies do well. That does not mean we do not know what ‘love’ is!
So casually stripping us of our humanity – that makes me very, very hurt and angry!
March 29, 2009 at 6:39 am
adifferentvoice
Xanthippa,
Thank you for commenting again. Some of the ground we have already covered, back in the spring of last year, and I wonder if either of us will ever manage to convey to the other the differences between our way of thinking and feeling.
I am sorry that what I wrote caused you offence – and I can see why it might. Perhaps I should just have said that people understand “love” differently, and perhaps that goes for all of us, irrespective of how our amygdala functions.
You wrote earlier about hating labels. I do too, though I am frustrated because I cannot see how we can do without them. How, in shorthand, do you describe a piece of furniture raised above the ground that is used by humans for sitting on? Yet the word “chair” tells us so little about that piece of furniture – not how many legs it has, nor what it is made of, nor how big it is, nor how comfortable. Shorthand labels miss out so much.
They also shut us in. I attended a conference of psychotherapists last weekend on attachment problems, and listened to speaker after speaker describing my emotions in a way that pathologised them, made them seem bad, not normal. I felt very unconfortable and hurt, and wondered how my analyst talked about me in supervision sessions. The words they used seemed to be an attempt to shut me in a box – I suppose we do use words in an attempt to control, to understand.
Yet, yet. Language is the only way, via this medium, that we have of trying to understand each other better. The goal is always to understand, and to accept, and to avoid hurting each other.
We both appropriate “love” as shorthand way of describing something we feel, but we’re realise that we might have different definitions.
I am challenged by notions of those labels of “co-dependency”, of needing anything from other people, of not being entirely self-contained, and of calls to “self-differentiate”. A couple of books have shaped my conclusions, and I’ve been meaning to write about them for a very long time. I’ll try to soon – when we finally get back to our usual house.
March 31, 2009 at 6:52 am
Anonfornow
adifferentvoice – thank you for your reply. I wanted to come back and correct something that I wrote.
I wrote ‘and this part rings true; “these schematising men tend to be very able in a way which the world recognises, they tend to have more power”.’
Looking at it again, I can see that some readers might infer that I was saying that my father was a bad man which went unrecognised because of his professional success. This is not what I meant. My father is a trustworthy man. I was trying to say that because the world recognises their talent, it may be harder for them to accept they are not talented equally in other areas. (What you said about being aware of deficits allowing us to compensate.)
“whether Aspergers is sometimes just a name for the way people behave when they have closed down their right brain in childhood as a perfectly appropriate survival mechanism”
I would like to know more about this.
There is more than one way to break a leg.
xanthippa wrote that Aspergers and autism are different in the amygdala and therefore affect people differently. I do not understand the technical stuff about the amygdala, if anyone can point me to a description of ways of thinking and consequent behaviour for both Aspergers and autism, showing the similarities and differences, I would be grateful.
xanthippa – I am not married, not dating, I feel it would be easier to have an arranged introduction than go through the hell of dating. Actually if I could just jump to the point where my husband and I had been married for two years already, that would be great. (So you can see what I wrote earlier about whether to have children is really not likely to be a practical problem for some time!)
March 31, 2009 at 7:49 pm
adifferentvoice
Anonfornow,
I was thinking aloud … I’d just been to a conference organised by the John Bowlby Centre, and had watched videos of a baby with severe attachment problems caused by an unresponsive mother … and had seen the progress he made when he was played with and engaged with by the therapist, and later by his mother. Then I’d re-read my original post and followed some of those hyper-links to the Mifne Center in Israel which does pioneering intensive family therapy work with babies showing signs of pre-autism, and their parents. The descriptions of the babies’ affect seemed so similar to the boy I had seen, and the family therapy seemed similar to the attachment-based work done in peri-natal clinics here, that I was struck by the similarities, and wondered how the little boy I had seen would have turned out if there had been no intervention and no establishment of a healthy attachment. And I thought about stone children (another post here), and wondered if it wasn’t all connected.
I was thinking this especially since there seems to be increasing talk of a genetic component to autism/Asperger’s, and I wondered how scientifically proven that was, as I can never work out how you can separate out the developmental effect of having parents who don’t bond with you because they were themselves the product of a poor attachment (and so on back for generations), from the effect of carrying their genes. On the one hand it’s great to give Asperger’s a genetic origin, because there can be no talk of a cure and we move to acceptance of the person as they are. On the other hand, if we accept a genetic component without it being proven, we abandon any hope of helping those people with Asperger’s who are unhappy to investigate possibilities of therapeutic treatment.
If Asperger’s is a developmental condition, not a genetic one, then might it not respond to therapy/psychoanalysis in later life, just as stone children do, if the person with Asperger’s wished …?
Haven’t been able to find out a huge amount about the Mifne Center but do see what else you can find. Pages on the Uppsala Baby Clinic in Sweden are interesting too.
I hope Xanthippa will be able to answer your question about the amygdala as that part of her comment made me want to know more too.
Perhaps she’ll be able to de-bunk my vague meandering thoughts.
April 1, 2009 at 4:23 pm
Anonfornow
adifferentvoice – there could well be something to it, as I said there are many ways to break your leg.
You wrote “as I can never work out how you can separate out the developmental effect of having parents who don’t bond with you because they were themselves the product of a poor attachment (and so on back for generations), from the effect of carrying their genes.”
Well that factor is tough to work out, but I think autism without parental neglect is basically down to the combination of genetic susceptibility and environmental triggers.
They say genes load the gun, and environment pulls the trigger.
I will describe what I think might cause autism, it’s my current favourite theory anyway!
Have you ever heard about those people who suffer a stroke, or a fence post through the head, some form of a one-off dramatic traumatic head injury, who find that they can no longer talk, but now have the ability to paint amazing pictures, which they couldn’t do before?
In these cases, I think that is because the brain was injured, it activated its self repair system. This is called plasticity, the ability of the brain to reshape itself and learn new things. Maybe it can’t repair the area where the stroke was, or the piece of wood pierced the brain, because the damage was too severe, but the increased plasticity enables the other areas (that were not damaged) to learn and develop much further than before.
I think the same mechanism is at work in autism, except that the injury to the brain is much more subtle and diffuse, it’s not easy to see like a fence post in your head, and it is not a one-off injury, but an ongoing injury, which means the brain is in a state of ongoing plasticity in an attempt to repair the ongoing damage.
Here is how I think it happens.
A baby who goes on to develop autism starts with a genetic susceptibility in the form of an immune defect. He gets a viral or bacterial infection in his brain. To fight the infection, the immune system is activated, and this results in inflammation. Inflammation is damaging to the brain, so the brain repair system, the plasticity, is activated. Normally, the immune system would defeat the infection, the inflammation would settle down, and the plasticity would repair the damage, and it would be over. That’s what should happen. But not in this case, because he has an immune defect, and the immune defect means that he never defeats the infection. The infection remains ongoing, the inflammation continues, and the brain plasticity remains switched on.
OK, so now the brain is in a very plastic malleable state. This means that it is very sensitive to the environment and it is primed to learn and remember new things. Now, a baby naturally has a very plastic brain because a baby has to learn lots of new things, and as it grows and learns the brain gradually settles down and becomes less plastic.
But the brain we are talking about here is *too* plastic. It’s too sensitive and it’s learning too much, it is overwhelmed with information. The sensory perception is too much, flickering light, certain sounds, certain touches like hugs, maybe the feel of your clothes, are all perceived by the brain as overwhelming, just too much input to handle. And that is when you get an autistic meltdown. It’s like when you ask your PC to do too many tasks at once and it just crashes.
So if everything is too much overwhelming input to handle, (you can’t process it, so it remains meaningless) and you don’t want to crash, what do you do? You withdraw from the input. You withdraw. And maybe focus on something small and repetitive. That’s not overwhelming and frightening, you can handle that. And rocking is repetitive and soothing. You rock your baby, don’t you?
We feel everything more, and it’s too much to take. And when you withdraw, you don’t learn language and social behaviour.And if you try to interact socially, it’s too overwhelming, too much info, too many variables to process, so you withdraw. Become feral, wild, instead of domesticated and socialised.
But, the plasticity doesn’t just make us more sensitive, it increases our ability to learn. I said earlier we may choose to focus on something small and repetitive and predictable, and if we do, whatever we’ve focused on, we’ll learn it *so very well*, because of the plasticity, and once we’ve learned it we won’t forget it. And that’s where you get your Aspie expert from.
It’s also why you sometimes see OCD type behaviour. 1) you have a lot of anxiety because the world is so overwhelming and out of your understanding and control. So instead you focus on something small, something you can understand, and controlling that acts as a proxy to relieve the anxiety. 2) And because the increased plasticity means you learn so well, this new routine is burned deep into your memory, you cannot forget it.
(Actually it is not necessary to be born with a genetic immune defect susceptibility in order for this to happen, as I think some viruses are very clever and can infiltrate and hide from the immune system so that the immune system cannot kill them, or like the HIV virus, a virus can give you an immune defect. Also, it doesn’t have to be a virus or a bacteria, a toxic chemical could also trigger an immune reaction. Apparently autistic people have problems with their natural killler cells, which are supposed to fight infection, which fits with the idea that there is some immune defect there, for whatever reason, genetic or not.
A variation on this idea would be that the defective immune system in the autistic child is inherited from the mother, and it was her defective immune system that failed to prevent the foetus from brain damage at a much earlier stage, before even born. But then why the ongoing plasticity?)
Now I come to think of it brain inflammation in the form of meningitis is known to have light sensitivity as a symptom.
Anyway the bulk of this theory is from these scientists here, you can read about it here http://www.newscientist.com/article/mg19926741.700-do-supercharged-brains-give-rise-to-autism.html?full=true actually they say something else causes the plasticity, and I’m certainly not qualified to know any better, but I’ve typed this all out now and I’m too tired to re-edit. So maybe ignore what I said and just read the article for the accurate version!
The article describes measures to help, it says “These same measures already work for children who have endured severe early trauma and neglect, such as being raised in an understaffed or abusive orphanage. These children often have overactive amygdalas, heightened fear memories, are withdrawn and exhibit repetitive behaviours indistinguishable from autism.”
If you want to know about brain plasticity look up
Lindsay Oberman here
http://blogs.psychologytoday.com/blog/the-autism-spectrum and this blog here http://jerobison.blogspot.com/2009/03/return-to-tms-lab.html
April 4, 2009 at 1:40 pm
Anonfornow
I started typing out a lot more things I had to say in response to the original post, and then I read this part.
“They may, however, be quite prolific commenters with a tendency to appear troll-like if they are not careful.”
I see now what I have done. I am sorry for any offence or feelings of harassment that I may have caused, I did not intend it.
April 4, 2009 at 2:40 pm
adifferentvoice
AFN, Don’t be silly! Your comments have been articulate, informed responses, and, more to the point, suggested lots of things that I’d never thought about. Sorry not to have responded to your earlier comment – I wanted a chance to follow the links properly, and I just haven’t had that recently (we’re “between” houses and I’m trying to clean up after the builders in one), and now the girls have broken up for Easter!
I suppose my thoughts over the last few weeks have been along the “What if” lines – “What if the people I thought might have Asperger’s are actually ‘stone children’?” Of course, even those thoughts are red herrings because, if I’ve learnt anything over the last ten years, it is that the only person I have a hope of changing is myself, not the other guy. Concentrating on the other guy is often a distraction aimed only at keeping the focus off me.
I’ll follow up your links, but please don’t think that your comments were anything other than well-expressed and entirely appropriate.
April 9, 2009 at 12:01 pm
Anonfornow
OK, thank you.
April 14, 2009 at 8:15 am
myvoice
I am very seriously considering settling down with my boyfriend. However, I suspect he is within range of aspergers. He scored 31 on the AQ scale from wired magazine. I am wondering if I will be making a mistake to marry him. My score was 13.
April 14, 2009 at 8:26 am
myvoice
I am wondering if there are many on this site who have regrets marrying someone who is an extreme ‘schemetizer’ or on the border of aspergers (scores in the low 30’s on the AQ test out of Oxford).
My boyfriend is a super intelligent (now retired) engineer. Very factual, dependable, a good planner, honest, caring. But there is not a lot of humor and I kind of have to explain a lot of situations that involve interpersonal things. There are aspects of me that he will most likely never ‘get’.
I’ve been thinking that people get married for lots of different reasons. I would like to have kids and a family and he is in a position to do that. I’m nearing 40 and the prospect of having kids is nearing its end for me.
Are there many here who thought they were making a good decision at the time, but now later regret marrying someone with borderline aspergers?
April 15, 2009 at 7:54 pm
Anonfornow
myvoice – does he accept that he has weaknesses in that area? Would he allow you to show him how to love children and give them what they need?
April 16, 2009 at 7:56 pm
myvoice
Anonfornow – Yes; he has always said that emotions and empathy are not his strong point and will read anything I suggest on the topic. I think he would be very open-minded if kids were in the picture.
But no amount of reading or suggestions from me will change a brain that is hardwired in a certain way. I’m worried that although right now I think I can accept things, down the road I might have regrets. On the other hand, I guess there will always be things that are not perfect in a mate. I just don’t know if this is something that will be ok for me and I wish I could see into the future.
Are there people here who don’t have regrets about marrying a man who is on the border of having aspergers? Several of his friends also have these same traits. Most of them are engineers/IT folks. Does anyone feel lonely in their relationship? I don’t at the moment, but it is a fear that I have for the future.
April 16, 2009 at 11:18 pm
Maureen
Hi Different Voice and everyone else –
I have been married to my Aspie husband for almost twenty years. We only figured out about the AS a year ago – well, we knew what the issues were we just never had an explanation for them.
I also read everything I could find by Tony Attwood, Maxine Aston, John Robison, and finally started writing myself to try and sort through what I was learning and what it meant for us and our children (our oldest and youngest sons also exhibit many AS characteristics).
I have started blogging my thoughts and welcome you to see what I have posted so far. It sounds like we share many experiences.
April 16, 2009 at 11:23 pm
Maureen
My voice –
When I finally realized my husband has AS, I went through a long period of depression. I realized that behaviors I had attributed to stress or life or our farm were actually neurological and would never go away. However, the more I read, the more i realized that many of the things I love most about him and attracted me to him in the first place were also attributable to the AS.
Now, a year later (and we’ve been married for almost 20 years) we are seeing a counselor together who is helping us develop management strategies for some behaviors that get in our way.
I have several entries on my blog about meeting and falling in love with my Aspie. It’s definitely a mixed blessing, but in my situation, the good most definitely outweighs the bad.
April 16, 2009 at 11:29 pm
Maureen
Stunned –
I had the exact same experience when I finally hit the AS literature. It was just instantaneous and like hitting a bull’s eye. I can’t tell you how much the diagnosis has helped us both. DO be hopeful. If he is willing to seek help, it might very well start to happen much quicker with the correct diagnosis. We also went through ADHD, OCD, etc. The AS stuff was so right it was uncanny.
Sorry! I triple-commented! So happy to find a community who can relate.
April 21, 2009 at 12:11 pm
Anonfornow
myvoice – it is good that he recognises his weakness in this area.
http://aspar.wordpress.com/stories/
April 22, 2009 at 7:32 pm
adifferentvoice
I’m just letting this run on. Feel free to carry on commenting. Thanks for the links, and I’ve added a link to Maureen’s blog and the ASPAR site in the side bar.
April 27, 2009 at 8:16 am
adifferentvoice
There is another side to this debate. Check out the Asperger Square 8 blog, and the most recent post (21st April), and the links to other blogs which promote a similar view.
April 28, 2009 at 4:27 pm
Anonfornow
http://www.kmarshack.com/therapy/asperger/faq.html
I know I am posting the depressing side of things only, I know there must be good experiences out there too.
I looked at Asperger Square 8 blog, I can see I would not want to be judged and defined solely by being AS, but my experience of having an AS father has been painful because of his AS ways, hence my concern that I might do the same thing to any child of mine.
April 30, 2009 at 7:22 pm
myvoice
Anonfornow – thanks for the sites. Quite a difficult decision right now. I always feel like he’s ‘at arms length’. He has a way of remaining neutral on everything so that I don’t feel supported emotionally or something. He could say something very similar to someone else, but kind of lacks feeling or emphasis or something so that I don’t feel like he gets it or that he’s there. Does anyone else have this experience? Also only sees humor when it’s blatant. Something else is a possible reduced meta-cognitive awareness.
May 1, 2009 at 8:15 am
Anonfornow
“He could say something very similar to someone else, but kind of lacks feeling or emphasis or something so that I don’t feel like he gets it or that he’s there.”
Do you mean the comforting tone of voice, reassuring body language, that sort of thing, is missing? But if he can’t “see” those things, if they are invisible to him, then he can’t “speak” them either. It’s possible that to him seeing a woman in tears, and seeing a woman in neutral mode, but holding up a sign that says “I’m upset” are much the same thing. There may be no instinctive automatic reaction to someone in tears, he may have to first think to himself “tears are the sign for upset”. It’s like a second language when it should be a first language. Perhaps all he has are words, no emoticons. The internet is a level playing field for us.
“meta-cognitive awareness” – sorry, I’ve no idea what that means! But everything else you describe sounds like my dad.
Is there anything that he could do differently to make you feel nurtured? Some other way to communicate his feelings?
May 1, 2009 at 8:42 am
Anonfornow
myvoice – seen this? http://www.youtube.com/watch?v=mHx2-n7dK7U
August 3, 2010 at 11:39 am
FeelSorry
Thanks for this very nice article. I have read a lot on Aspies and have come to strong conclusion that my Ex-husband was an Aspie. His parents were first cousins and I believe chances of neuro-biological defects increase in such cases. Not sure wht was his IQ, but it was surely very very high. Along with arranging classical audio CDs etc, he was very much into Gaming and Fantasy book reading. I came to know that he probably was an Aspie after I filed in the court, but I should say I felt miserable for him. I felt he could not love without me and that I should go back and take care of him. Is is how all women in AS marriage feel? I have tried to move on, but keep thinking about him a lot (is he doing ok, will be able to take this shock and go on fine). He or his family did not come for any talks on reconcilation and simply obliged to end the marriage. It was a shock to me, when I was keeping such good relations with everyone there. My decision to end this was more becos I was undergoing every problem that a Partner in AS marriage feel (anger/hysteria/confusion/loneliness etc etc).
It was interesting to read about the actual details of how the brain looks like in an AS person. Very sad to read, but I guess sometime we NT people suffer more becasue we feel everything and they dont.
What are your thougths?
Thanks
October 14, 2010 at 12:39 am
Where to now?
I have been in a live-in relationship with a AS man for 41/2 yrs. Your article could have been written by me describing him. He just took another “better job” 900 miles away because the people he worked with here were inferior and incompetent. He is quite happy to see me when we can meet which is so different from our first 3 yrs. together full of obsessive attention and affection. His loyalty and experience of his love for me is true and that is of great value. I am the perfect profile of the kind of women an AS man would be attracted to. What is also special about this is that I now what my father had and why my mother was so sad all the time.
I am wondering if others out there find that when the AS is acknowledged by both partners but the AS partner wants nothing more said about it- do things get worse?
February 18, 2014 at 9:41 pm
Debbie
I too have been married to my Aspie husband for a very long time….43 years! Many times I wanted to leave him but instead have had to lead my own life with my own friends and interests, to keep sane. It’s very sad and no doubt I have the ‘Cassandra syndrome’. If I knew before marriage about Aspergers, what I know now, I would never, never have married him.
July 29, 2014 at 6:38 pm
jeff77450
Amazing. Never before have I read an article that so accurately (perhaps 85%) describes me. I wish that my parents & teachers had known all this and that the needed adjustments to my upbringing & education had been made. Many thanx, –Jeff writing from Houston, Texas
September 26, 2014 at 2:08 am
Cydne
You have described my life so well.
Even though it is four years since the last comment, I wanted to say thank you because this understanding may help me cope.
There are two things that were helpful for me to understand which I will share here in hopes that they may help others.
1. My daughter’s counselor chooses to call Asperger’s a “Social-learning Disorder,” because it gives a better understanding of what happens. As Anonfornow mentioned above, social & emotional conditions are not naturally learned by some people which leads to the initially recognized behaviors. They can be learned, but are, indeed, a second language.
2. Aspie’s do indeed feel many emotions, but because they don’t speak the same social/emotional language naturally, they express their emotions differently. Furthermore, their confusion and frustration at interpreting the world around them lead to the classical fight/flight scenario which we so often see. No understanding or expression followed by anger at those around them for asking/expecting/requiring them to respond in, what is to them, an unnatural manner.
The rigid routines and rules are, thus, both a result of the initial cause itself (whatever it may be), and a reaction to the lack of understanding they have regarding the world around them. Symptoms such as depression & anxiety are secondary responses caused by this frustration, which can lead to further challenges for them and their loved ones.
August 7, 2015 at 4:06 pm
Emery
This is extremely accurate, from my experience. I can’t print it without ads covering the text, however. Can it be made printable?
August 29, 2015 at 12:09 am
Erika M.
Thank you for posting this, for 4 years since we have been married and the other 3 we dated, it’s finally making sense. I am the wife who at 34 is really wanting to leave him. I don’t want kids with him, not does he express a interest. I am alone all the time with him and he’s never really around. He is everything you said here. I wish I had seen this before I made the mistake of getting married, a sexless lonly marriage where he sleeps in another bedroom. Wow spot on, thanks you.
March 13, 2016 at 9:43 pm
LoobyLou
Gosh – your understanding is so accurate. Thank you for sharing, it at least lets me know I am not alone. I wish there was help out there for the non-aspie partner. x
May 17, 2016 at 11:56 pm
Sue
Now I can put the jigsaw puzzle together. It’s like finding the missing pieces to complete the whole picture. I am not sure whether I should feel happy that I know I am not alone or feel sorry for myself for being in this kind of one sided relationship that I tried so many times to make it work. Is it fair to say that my partner for nine years should be blameless due to his mental condition? He has not been properly diagnosed with AS but having lived with him long enough gave me a full indications of his condition. He possess most if not all characteristics of AS sufferer. Thank you everyone. Now I don’t feel alone with this uncertain journey! x
July 19, 2016 at 1:44 am
happyaspergermarriage
Maybe there is help… or hope at least?
July 19, 2016 at 1:45 am
happyaspergermarriage
Please read this before you give up all hope.
http://happyaspergermarriage.com/what-about-empathy-aspie-vs-sociopath/
October 14, 2016 at 1:59 am
jeninorton
I disagree with your statements about intelligence and Aspergers.
DSM4 defined Aspergers as average to high intelligence.
I would also like to see evidence of your statement about women with high IQs: “almost all women measuring, say, 130 on an IQ test would be schematisers, or have a degree of Asperger’s syndrome.”
I associate with a large number of women with high IQs, all of whom have high empathy. Some have some Aspergers traits as well (I do myself).
One possibility is that “schematising” and “empathising” are not on a single continuum.
October 27, 2016 at 10:41 am
Joseph
It’s…. hard, and damaging to learn about this. I am not so quick to dismiss articles like this, and since learning, at 27, that I have Asperger’s, I have been continually horrified by things I learn about it.
This sounds like my desire to not be alone and to maybe make someone’s life better is doomed and inherently selfish, because of how damaging I am to them. The testimonies from wives who hate their husbands are incredibly discouraging. It’s like waking up one day and learning that you were a monster who thought they were a man. What a shock!
I am… sorry to impose my feelings on an article largely (to my skewed perspective) about how others suffer due to “Aspie” involvement (hate that word; implies a certain snaky quality), but I wonder how aware some folks are that this is essentially a death knell for the desire to not be alone for even a bit of one’s miserable life.
It is not fair to impose one’s own brokenness on another, but it is also not fair to live and die alone. Thanks for the article though.
November 20, 2016 at 4:51 am
Paula Powell
I was diagnosed with Asperger’s and I’m about to give up looking for information online as I can’t relate to much of it. They say it’s all levels of autism, but I don’t feel anything in common with low functioning autistics and there are different symptoms, such as Asperger’s doesn’t have speech delay and it has motor difficulties. Plus most of the information is negative and about men, but as a female most of my male partners have said I’m a lovely girl.
November 20, 2016 at 4:55 am
Paula Powell
It seems to me as if some women claim that their bad partner must have had Asperger’s, when 2 out of 3 marriages fail because of partners not getting on.
March 5, 2018 at 11:11 pm
Molly Nicholson
I just wanted to respond to Joseph from October of 2016. I know it’s rather late, but I do hope you see this. I was surprised and sorry not to see other people respond to what you wrote. I’m so sorry to hear of your pain. It makes so much sense that you’d feel as you do given the amount of negativity you’II find on the internet about AS – particularly about men with AS.
I have what I think of as a good relationship with my partner of 7 years. He was dx in his late 50s. We have a blended family of 7. We’ve raised 4 of the 5 kids together through their teens and early 20s. I initiated the whole thing after reading about AS to better understand others in our lives. He describes his diagnosis as a relief. I think it helps him understand some of his past relationship experiences and some bullying as a child. I read about AS obsessively. I find the spectrum so fascinating. My favorites so far is The Journal of Best Practices by David Finch. And here’s a link to a truly remarkable interview of John Elder Robsion by Terry Gross of NPR. https://www.npr.org/sections/health-shots/2016/04/21/475112703/electric-currents-and-an-emotional-awakening-for-one-man-with-autism
Most importantly I wanted to let you know that my partner is a loving father and partner. He is one of the funniest people I’ve ever known in my entire life. He literally makes me laugh every day. We have by far the lowest conflict relationship I’ve ever had. Perhaps we’re both a bit conflict avoidant, but as a therapist I think I’ve got a decent handle on things and don’t feel like that’s a particular problem. I should add that he’s on the mild side of AS, and doesn’t display much rigidity at all. That’s the one part of the diagnosis that I sort of questioned, but all in all he fits the profile and was diagnosed by an AS specialist over a 4 session period.
One of my favorite things about Steve is his sensitivity. Yesterday we saw the Pixar movie, Coco. I have never seen him cry as much as he did through this animated film. I teared up occasionally, but nothing like he did. He’s an incredibly empathetic person. The idea that people with AS are without empathy is one of the things I find the most inaccurate and hurtful things I hear and read about. Certainly there are differences in the way empathy is expressed, and perhaps for some on the spectrum empathy is minimal to low, but it is absolutely not the case for all. In fact, some of the Aspie people I know are particularly empathetic.
I hope this helps, even if only a little bit.