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

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

Ivan writing for Athena.