Autism for First Responders

This is for a talk I'm giving to our local ambulance squad. I stole all of the ideas off the internet, but I'm not profiting ;)

The first step is to identify that a person is autistic.  Hopefully, that was part of the call.  However, this may not be the case.  An individual with autism may be pacing, rocking, repeating phrases, flapping their hands, flicking their fingers or making other repetitive hand motions.  They will probably not make eye contact with you.  They may have a strange affect, such as laughing when someone is hurt.  Their language may be very limited, or have a strange sing-song quality or they may use unusual words.  They may have a medical id on the usual spots or tied into their shoe laces.

Autism now falls under one heading as of the release of the last DSM.  HOWEVER.  Autism may be called ASD, PDD, Asperger’s syndrome.  In older individuals, especially, it may be called schizophrenia or MR.  Or it may not be named at all.  

Individuals with autism may deny pain or have an unusual response to pain such as laughter, singing, or hurting themselves.  They often do not have typical facial pain responses and often do not read other’s facial expressions.  The Wong Baker pain scale cannot be relied on.

To cope with pain or other stress they may engage in self-stimulatory behavior such as hand flapping, finger flicking, repeating words or phrases over and over.  This is all self-calming and as much as possible let the person do it.  If you have ever seen someone hold themselves and rock while grieving, you have seen self-stimulatory behavior.  Even self abusive behaviors such as biting themselves may be helpful as long as they are not hurting themselves too bad.  

They may repeat your phrases as an echo.  This can help them to process your words.  Speak slowly and calmly, give them time to work through what you’ve said.  Even a 30 second delay is not unusual.  Remember, these people have trouble processing the spoken word, and now they are under stress.  It is also hard for them to produce spoken words in optimal circumstances.  Using written words or pictures may help.  Giving them lots of time to speak or using a white board may help.  Use short, direct phrases.  Also, use close-ended questions.  Don’t ask “do you have health issues?”  Ask “do you have diabetes?”  “Does your neck hurt?”  But avoid asking question after question after question, this can be overwhelming.  Ask the most important questions, then allow the person a rest.

People with autism are in a constant state of sensory overload.  They are coping with sounds that are too loud, clothes that are painful on their skin, smell that are strong enough to make them gag.

They will have even more sensory sensitivity than usual if they are stressed.  Adhesive on band-aids or tape may be uncomfortable to them at best.  In this situation it may be painful.  People with autism have a difficult time interpreting when an action is aggressive or not.  Start examination at distal points and work in. Tell them what you will be touching next.  Show them your equipment and tell them what it does before (“This band will squeeze your arm.  It will be tight, but not hurt.”)  Ask permission whenever possible and let them say ‘no’ if possible.  

Avoid restraints if possible.  Many already stressed individuals will panic if overwhelmed and restrained.  Many have had very negative experiences with restraint in the past.  Move slowly and explain why you are doing things (“I am putting a seatbelt on you to keep you safe in the ambulance.”)

Some individuals may give random yes/no answers or may repeat the last thing you said.  Try inverting the question to validate their answer.  For example “Do you hurt more on your arm or wrist?”   “Which hurts more your wrist or arm?”

Talk to caregivers and trust them even if what they say seems unusual or unnecessary.  If they say that your patient needs to take a cereal box with them, then do it.  Find out what level the individual responds at and use that.  You may need to use an even lower level to communicate.  If they usually use spoken language, they may need to use pictures or written words to communicate.  If possible, bring the caregiver with you for the transport.  Caregivers know the patient best and can act as an interpreter.  They are also a familiar, calming presence.  They also know the very best way to keep the patient calm and when things are starting to get ugly.

Presume the patient understands, even if they make no indication.  Many of these people don’t respond in typical ways - they don’t talk back, they don’t make eye contact.  But many of them hear and understand.  And they know if you hold them in contempt or underestimate them.  Assume competence.  Tell them whatever you would tell another person in the same situation about what you are doing and what is going on.

Avoid sirens and flashing lights if possible.  Not only may they be a sensory overload, but they may frighten the person.  30-40% of people with autism have a seizure disorder as well, so flashing lights could be a trigger.

Notify the ER ahead of time to move the patient through triage quickly.  The longer they wait in unfamiliar surroundings, the more likely they are to panic.

Emphasize calm and comfort over and over.  Just as you would repeat the ABCD of ACLS, repeat to the patient comforting things “We are going to cover this to keep it clean and healthy.  I am going to cover you up to keep you warm.”  All those thing you are doing to help them.  “I have to give you medicine to help you get better.  I have to use a needle.”  Always in a calm voice

Give choices and ask permission as much as possible.  - Do you want the blanket on or off?  -Do you want the needle in your right or left arm?   -Do you want a bandaid on that?  They can choose verbally or point or hold out the desired limb.  Can I put the seatbelt on now or in a minute?

If the cause of illness is not obvious, expect the unexpected.  These kids are locksmiths, and would make the ultimate pickpockets.  We parents think we have the whole house locked down, and yet they get into pills or chemicals that we didn’t know existed.  

A person with autism may not show typical signs of pain.  They may have a painful burn and scratch or hit or even ignore it.  It does NOT mean they don’t have pain.  Treat them as you would treat anyone who had the same injury.  Pain meds or splint if possible.

What do you do if the person does meltdown?  Freak out.  Lose it?  Remain calm.  I see my kids as mirrors, amplifiers even, of my own emotions.  If I am afraid or angry, they respond in spades and suddenly the entire situation gets a lot worse.  Use a calm quiet voice.  Speak slowly.  Back off.  Decide if you persist, are you doing more harm than good?  Don’t bargain, they aren’t rational in that state of panic..

If you have to restrain: Do it quick and do it right.  A mummy restraint may be the best choice.  Do not use hard or partial restraints because an individual in meltdown will not feel the pain of tearing their skin or even breaking bones.  They are in full panic and can even strangle themselves on the restraints if not monitored.  Never restrain face down, they often have low tone and are at risk of positional asphyxiation.  

Don’t let these individuals out of your sight - they are often a flight risk anyway.  But now they are panicked and want OUT.  Also monitor all of your equipment.  These kids are quick and curious.  They may be touching a flare before you know it.