Saturday 23 April 2016

Autism: Reactions to medication - background for health professionals

I am not a Doctor.  I am a patient, and an autism expert who has talked about medication with a very large number of other autistic friends, colleagues and family members.  I also train medical professionals on autism, including work with the Royal College of Psychiatrists and with hospital groups and GP Practices nationally.

Autism, as we know, is not a mental health condition and there isn't a medication that 'cures' our brain design.  It's designed to work that way from birth, and stays like it.  But, like everyone else, we can have other health conditions that need treatment.

Autistic people may tend to respond differently to medication.

What have I learned from talking to autistic people? Some examples: 
It may have no effect on us.   It may work far too strongly.  It may have unusual or particularly long lasting side effects.  Especially any drug that is designed to affect the way the brain works.

What can be different, with medications?  An example or two from my own life.  I am a cancer patient.  I had chemotherapy.  (FEC + Tax).  I was so unaffected by a very tough regime of it that I continued to work all the way through.  Some usual side effects, but I was able to keep going.   Then Herceptin.  A mild drug with few major side effects, by comparison.   I responded so badly to it that they had to stop using it.
Alcohol; has no effect other than to numb sensory pain, so I have to be very careful indeed to drink only a moderate amount.
Coffee; sends me to sleep.

Everyone's reactions will be different.

My advice to medical teams is to listen very carefully to what your autistic patient tells you about drug effects.   We are very unlikely to exaggerate.  Most likely, we will under-report.

It can be difficult for some of us to explain how we are feeling, so allow time.  And allow people to write or draw how they feel, if that helps.

Many of us cannot identify pain levels very well, and may struggle to know where pain is coming from, or how bad it is.  Our son played rugby for weeks with a broken foot, because he had no idea it hurt.  The medical team asked him if it hurt, and when he said it did not, they did not send him for X Ray.  Be cautious about accepting our assessment of pain levels.   Some are super-sensitive to pain.  Others barely notice it.  And that can vary over time, too.

Many of us struggle with the sensory environment in medical rooms.  Above, a picture showing how such a room looks to me, but also with flickering overhead lights (like a strobe light effect). Intense colours, blinding glare.  Add in random questions, everyone in a hurry to see patients in super-fast time. Long random waiting times that cause intense anxiety and stop good communication.  Intense chemical smells.  Pain from physical examination on too-sensitive skin.  Intense pain and discomfort from procedures that others can tolerate.  Little wonder that so many autistic people cannot access this at all.  The times I've wanted to run away from medical appointments in the past, because the sensory pain is so bad.  Thankful for a lovely local GP and a thoughtful cancer team.

There's a lot to consider, with autism and health conditions.  Make sure you get really good training.  We know from the recent research highlighted by Autistica that autistic people tend to die some 16 years earlier than others.  Healthcare plays a huge part in keeping people alive and healthy.  That is a situation where we can all work together to help avoid other young people dying.

Be aware of autism needs.  Be aware of potential autism-related reactions and responses to medication.   Be ready to adjust and adapt environments, examination methods, questions and medication.  Get in contact with good autism training teams that include autistic trainers, and check your profession's information and advice on this subject. 

More than a million autistic people in the UK.  It's not a small number.  Make sure you know how to offer effective and respectful treatment for health needs.

Thank you for listening.