Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Those living with Anhedonia


Hair  by Donna Williams 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.

Why do people develop Anhedonia? It’s likely a ‘fruit salad’ of its own. One person may develop it following a long term depression they never came out of, a sort of neurological patterning. Some may have had a heartbreak, loss, trauma that lead to a progressive addiction to protection from emotion they originally found more painful than the flatness, and when the flatness became unbearable they had spent so long patterning themselves to avoid affect or the feeling of it they couldn’t find their way back. Some may have Alexithymia and Schizoid Personality Disorder complicating their Anhedonia but not know the one is severe inability to process/read their own emotions (so they are perceived as missing) but the feelings may still be in there (see ‘checking’ used in the book Like Colour To The Blind ) and the other has its basis in fear of intimacy and progressive safety in emotional self containment.

Some may have a brain chemistry imbalance relating to the pleasure triggers of Dopamine, or the happiness triggers of Serotonin and GABA and a urine analysis for the byproducts of these may help find out if everything is in balance. Food intolerance can disturb some of those and some people with untreated gluten intolerance in particular can have mental-emotional symptoms without the physical ones.

Dissociative disorders, which can set in as young as age 2-3 years old or anywhere there after, can go together with Anhedonia if one has become cut off from their Core Self as a result of severe loss, trauma, abuse, neglect. Essentially, if one is living dissociated from their Core Self how can one connect fully with the body, with emotions, feel things personally, especially the more vulnerable emotions and joy, hope, trust are feelings that open us up. For those with dissociative disorders this may also mean feeling the threat of retraumatisation so instead of reconnecting with their Core Self they stay protecting themselves from that, which can, for some people, mean they stay emotionally cut off.

Some people can slip into roles and lose sight of their true self, their Core Self, until all they have are these cardboard cut out representations. Those with BPD commonly live their lives in roles because of a weak or poorly developed Core Self, but this diversion into roles and loss of connection with the body self, the emotional self, also happens without BPD, just look at how some people get so fixated with achievement, with being popular or cool, or obliterating their connection to body, mind, emotions via substance abuse.

Frying one’s circuitry is also another route to then struggling to reconnect to the natural flow of emotions which is essentially a neural, a brain connection. Over doing that circuitry may amount to the same thing… progressive addiction to self injury or trying to continually heighten or exploit emotions to the point they lose their impact, their context, their variability and scope and then expecting these to bounce back in ‘every day life’ is like expecting that an overstretched rubber band won’t eventually lose its integrity, its function.

As for me, as a person with autism (and DID) 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.

Donna Williams