Those living with Anhedonia
I received a letter from a reader, convinced that autism was a state of torture, of being one of the living dead, unable to feel anything for anyone or anything in the external world.
Depression and rapid cycling bipolar are both now able to be identified in infants as young as 18 months of age. It’s possible that such infants may have these conditions even before they can be diagnosed.
Depression often leads to chronic withdrawal, limitation on activities, regression, reduced communication and interest in one’s surroundings, no interest in new activities, interactions or abilities.
Children with Selective Mutism who had lost speech often gained their speech back after treatment with antidepressants. Where once Selective Mutism was distinguished from speech loss in children with autism, it is now identified as one of a wide variety of causes of loss of speech in children on the autistic spectrum (though certainly not the only one).
Anhedonia is the inability to feel joy or sadness, nothing touches them. It is associated with depression but not as treatable as depression and Anhedonia to date is described as only partially treatable with medication.
Imagine a world where you can feel no joy for your own achievements and certainly no joy for those of others, a world in which you feel little or nothing for members of your family, your friends, the human race, where because everything falls flat – art, music, nature, spirituality there is no salvation for you. All you are left with is observation of a party you may never get to, and resentment, alienation. The writer who wrote to me described it as torture, living death.
Some causes of anhedonia have been found – sections of the brain involved in feeling empathy, emotion, and registering reward. Some people recover from Anhedonia as they recover from associated depression. For others the Anhedonia may be something they just continue to live with. The least we can do for those forced to live this way until treatment is found is to understand them, their alienation from and resentment of those who don’t suffer with the same and their lack of empathy in holding back from expressing that. One thing is certain, theirs is a tough road, one of the toughest, and none of us who do feel ‘alive’ would want to be in their shoes.
How many times have any of us said or thought ‘just get over it’.
Perhaps the least we can do is not expect such people to share in our joy or the joys the world has to offer. If they replace the emptiness with routine and activity, then lets at least not pressure them to smile and act as if they enjoy it.
If these were people without legs, would we insist they run around the block?
As for confusing Anhedonia with autism, the awareness of Anhedonia in some people, perhaps even infants with autism, is a valued addition to knowledge in that field. For without the capacity to feel empathy, joy or reward, development and independence will certainly be a hard road.
Whilst we continue to confuse those with perceptual and language processing disorders which cause meaning deafness and meaning blindness with those who have Anhedonia, we’ll not be able to direct each to the most fitting and understanding services. I wrote about each in The Jumbled Jigsaw, where I stress again, in the context of this article, there is no one-size-fits-all approach.
In the meantime, as a person with autism who has perceptual, language processing and bipolar issues without Anehedonia, I’m going to do what comes naturally and buzz in a world rich with emotion, with or without meaning.
This might explain a book I read at one point, the only book by an autistic person in which I got no sense of the usual autism-as-I-know-it. She seemed to regard autism not as a torture (that would require too much feeling), nor as a processing difference, nor as much of anything else I’ve seen it described as, but as a state of having no interest or joy in anything at all, combined with a compulsion to rock (which also seemed to bring no joy). I wonder if this is what was going on with her.
Good point, about not feeling enough passion to proclaim torture.
the torture part of is comes from other people misunderstanding us. That’s what I think of it……because when people don’t understand something, they don’t make good choices about whatever it is they don’t understand. It’s like….what would happen if someone had tried to use the ABA method on you when you were young? That would have been torture…..I think…..
Ivan writing for Athena.
My father always used an ‘Indirectly Confrontational Approach’ (which is outlined pretty extensively in the book, Exposure Anxiety; The Invisible Cage of Involuntary Self Protection Responses ). Also song, pets, nature, swimming, ARTism, opportunities for discovery learning, patterning in learning what would later be work related skills, the use of colored lights, kinesthetic learning (via objects), categories, rough and tumble, characterization and mimicry, humor and surrealism, typewriter.
My mother had her own pretty massive challenges but allowed or facilitated some really useful things, music, dance, respite in the countryside, hands-on discovery learning in the community, tough love (she had some serious issues but she also valued that children had to fend for themselves and I’ve benefited a lot from that and far more than mollycoddling could ever have given me), mirrors, fabrics and later machine sewing, reading indexes (at least I read something), supplements, anti-inflammatories and sedation and 15 years of antibiotics for bugs with primary immune deficiencies (they couldn’t treat that then).
All in all, for someone as seriously challenged as she was and her stuff certainly contributed to health and co-morbid challenges and perhaps lead to DID and PTSD (which are no small fish), I still think she was very innovative given it was the 60s and 70s, that a lot of my stuff was genetic and inherited, and I still think that looking at it overall I benefited a lot.
But when I was about 10, it was 1973 and the first autism-related literature and films were starting – pretty much blame the mother stuff – but included in there was the forced conformity push and holding therapy stuff. Anyway, I was not into closeness at all – very feral – so thank goodness she wasn’t the type to go for holding therapy – I’d have gone AWOL.
But she did try the forced conformity thing – one gets rather desperate when one’s child is 10-12 and still way off the wall and pretty ‘out of it’ – that is what we know today as ABA.
I DIDN’T COPE AT ALL (which I’ve written about in Nobody Nowhere and some of the text books I wrote). Basically I became far more disturbing and self injurious. And I’ve seen other kids for whom forced conformity is utterly terrorizing and sent them backwards. Sometimes it depends on the personality mix too and the degree of respect with which its done and whether the WHOLE child is considered.
But there’s others for whom the ABA thing has really helped (and for those it doesn’t it’s antithesis, an Indirectly Confrontational Approach, may work). One has to know who is who and that there’s no ONE approach for all people with autism.
… Donna Williams
http://www.donnawilliams.net
it’s very hard to live with anhedonia…i can’t go on like this,my life is broken.
i just want to know the reason , maybe i could go through it .
why i can’t enjoy what i do,every single minute , every experience , every situation , every relation , every new things , every crowd between friends and so and so
while all of the others smile and laugh as if something totaly excited…
why am i strange like that ?
Sarah,
many people are missing something, a few fingers, a foot, a functioning pancreas, good eyesight, the ability to fluently understand or use speech, the ability to recognise faces or their expressions, the ability to tell a physical from emotional sensation, to hold a simultaneous sense of self and other…none of us are totally whole and most of us will lose some functions by adulthood.
You have lost the function to PERCEIVE emotional experience. It is isolating, alienating. I had a breakdown when I was about 12-13 and went rather Catatonic for about 6 months. I felt 1000 miles away and couldn’t connect to my body, my mind, to language or other people. So I have some idea of what you’re experiencing and I’ve been close to someone who experiences Anhedonia perhaps partially due to the brain damage from drug use. It may do nothing for you but L-Glutamine 2000mg is an amino acid from GNC used by adults who have experienced brain damage and other things like learning disability. 30 days on it may at least show you whether it can help restore some of those connections and functions.
But if it doesn’t, sure, you are not like the social majority, and disability can be isolating, as if watching others through a glass window, in a world you may never get to truly live in as they do. As with autism, with Anhedonia there’s many people without these conditions who think that if you act ‘normal’ (their version) then, voila, the problem is gone, as if ‘to appear’ is the same as ‘to be’… in this sense those other people are part of the disability…. they can make the isolation worse.
Try and focus not on what you don’t have, but what you do. Try and look at yourself not as a broken ‘orange’ but someone who considering ‘apples’ (ie: those with Anhedonia) is actually otherwise fairly intact. For example you can still be useful, still be creative, you can still DO. What we do in life doesn’t HAVE TO be done from desire, want, feelings, motivation. It is ok to be cerebral and say, one is an ant in the human race of ants, part of a big ant army, and one can choose to be a useful, creative, active ant in that social collective.
Link up with others who have their own missing parts and who fixated not on what they don’t have, but what they do.
All the best.
Donna *)
http://www.donnawilliams.net
it may also be you don’t have Anhedonia. An inability to simultaneously process a sense of self and other especially if combined with social-emotional agnosia and poor processing of which feelings one is having can all combine to be easily confused with Anhedonia, especially if one is also a relatively ‘autistic’ personality (ie many solitary personality traits). Maybe look at Nobody Nowhere and see how your Anhedonia compares with autism.
I have been diagnosed with this and yes its hell on earth
Hi Dave,
thanks for dropping by.
it is important to hear firsthand from those who have the condition.
how did yours develop?
was it always there?
D.
To the others who suffer from anhedonia: where do you go? I’ve been to my family doctor, a therapist, two psychiatrists, and a neurologist. I’ve tried a number of medicines; nothing has helped.
I was diagnosed with temporal lobe epilepsy when I was three years old, went on anticonvulsants, and the seizures stopped immediately. I stopped taking the medicine after a couple of years. When I was about 12-13, something happened all of a sudden and I began experiencing panic attacks. When those subsided a few months later, I realized that I could no longer feel anything. Nothing was fun or interesting anymore. I just turned 20 a few days ago and nothing has changed since then.
I can’t actually feel angry, but there’s no denying the burning resentment I now have toward my peers in college. Everybody but me is having a good time, and my friends assume that I’m gay because I don’t respond when women flirt with me. I just go to class/work and go home. Nothing else is worth the effort.
So, now I’m just searching “anhedonia” on the internet.
Hi Phil, given you can still passionately feel anger is it possible you’re dealing with depression rather than anhedonia. At 12-13 was that an emotional breakdown? If so, could it have been that you ’solved’ it by severing fear/excitement (same emotional scale). It might be time to try bungee jumping or extreme sports to find and reclaim fear/excitement by showing yourself they can be safe and won’t lead to emotional breakdown. It’s worth a try. Try other things too, non-human ones, try a floatation tank, a mud bath, a thermal spring, get on a trampoline (movement frees emotion), spin, jump, reclaim movement and let the body wake up again.
Hey Donna,
I can’t actually feel anger, but that doesn’t mean that I’m not frustrated. To make things worse, people keep telling me about how college is the best time of my life.
When I was 12, I didn’t have an emotional breakdown. I had panic attacks; the only emotion involved was fear. I do get physical activity, and since then I have tried doing things that would give most people a rush.
After searching for anhedonia last night, a lot of websites suggested taking SAM-e supplements. The amino acid that’s used to make the compound is primarily found in nuts and seafood, and I’m highly allergic to both. Odds are my levels are far below average. I started taking some today and I’m hoping for the best.
I’ve tried Same-e but I found L-Glutamine 2000mg is more powerful and I’ve been taking it for 20 years now. I’ve seen it shift Anhedonia in one man, and in others they began to cry and be moved for the first time after 30 days on L-Glutamine. It’s from GNC stores, cheapest in powder. It raises GABA.
[...] The writer who wrote to me described it as torture, living death.” I found this here: http://blog.donnawilliams.net/2007/03/06/the-living-death-of-anhedonia/ This is so painfully about me…all about me me me, what’s the matter with [...]
I’ve been cursed with anhedonia since 2008. It started after a schizophrenia-related psychotic episode. My ability to experience joy, excitement, and the warm feelings that accompany social bonding completely vanished after that. Doctors prescribed me antidepressants, stimulants, antipsychotics, and even had me go through electroconvulsive shock therapy, but nothing changed my state. Every day truly is a living death. And there is no cure or treatment for this. Actual death would be preferable than being alive and conscious with no feeling.
Hi Camille,
you could try 2000mg-5000mg L-Glutamine for 30 days. Adults take 2000mg but those doing body building and CFS take up to 5000mg. I knew 2 people with Anhedonia who took it and came out of Anhedonia. May be worth a try and certainly a better alternative to death. It’s used in many ways including an antidepressant and in Schizophrenia among other conditions. Excess causes mania
let me know if you try and and how you go.