Pain (including trigeminal neuralgia)

  • Some autistic people experience pain without connecting to its cause, for example they can feel that their bladder is full  but not connect this sensation to the fact that they need to go to the toilet.
  • Trigeminal neuralgia (TGN): pain felt in the jaw, nose and the front of the head. It is caused by exposure or compression of  the trigeminal nerve and affects some people with autism.
  • Symptoms of TGN – a combination of unattributable outbursts of screaming, pressing below or behind ear the lobes, chewing, apparent tooth pain, hitting their head and/or rubbing their nose (for more information, please see chapter two of Phoebe’s book The Anger Box  [2014, Pavilion Publishing]).
  • The symptoms of TGN may be misdiagnosed and attributed to the person’s autism. Most research on TGN appears in dental journals.


This series of short films shows an extended conversation  between Phoebe Caldwell (DSc, Expert Responsive Communication Practitioner who has worked with autistic people for 45 years) and Janet Gurney (BA, PGCT, Director of Training for Us in a Bus, a service based in Surrey that supports adults and children with profound and multiple learning difficulties and autism).