Parents often ask the Autism Research Institute for any available information on anesthesia when their autistic child needs a surgical or dental procedure. In response, we published a request for input from anesthesiologists in a recent Autism Research Review International newsletter. We are delighted to be able to post this excellent article from anesthesiologist, Louise Kirz, M.D. who has two autistic sons.
Bernard Rimland, Ph.D.
Surgical Anesthesia and Autism
Letter to my fellow parents:
Your child needs a surgical procedure and an anesthetic. This can be a frightening experience for any parent and their child. Add to this the special needs of a child with autism and many of us throw up our hands and say, "How in the world am I going to get (us) through this one!" As a parent of two autistic boys I understand what you are going through. There is always one more thing that we need to get our child through. As a board-certified anesthesiologist, I also understand the problems faced by trying to anesthetize one of our special children. Here is a partial list of suggestions and information for parents and anesthesiologists.
- Schedule a preoperative visit with your child's anesthesiologist if at all possible. Sometimes it may be with an anesthesiologist in the group, but may not be the anesthesiologist who will be taking care of your child. If this is not possible ask that your child's anesthesiologist call you prior to the date of surgery.
- Read number one again. A preoperative visit or phone call is the single most important thing you can do to ensure a smooth experience for everyone involved. Discussing your child and his or her particular needs, fears, communication level, ability to cooperate and understand with the anesthesiologist will go along way toward easing everyone's anxiety.
- Listen to the anesthesiologist. There are many acceptable, safe approaches to anesthesia. Anesthesia is not an exact science. I like to compare it to baking a chocolate cake. You can use cake flour, wheat flour or rice flour, (for the GFCF among us). Margarine, butter or oil? Baking chocolate or cocoa? Eggs or egg substitutes? There are many ingredients and many choices. It is best to stick to what the cook (anesthesiologist) thinks is best and is most comfortable with. If your child is taking medications the anesthesiologist will have some very specific directions for which the child should take the day of surgery. Listen very carefully to the instructions about not eating prior to surgery. This is very important. Your child could get a dangerous pneumonia if anesthetized with a tummy full of food.
- After reading number 1, 2 and 3 remember that if for whatever reason you are not happy with what you hear from your child's anesthesiologist you can request a different one. Feel free to ask the anesthesiologist if he or she is at ease with your child's special needs.
- Prepare your child as you would for any unusual activity. You know your child the best. If social stories or pictures work for him or her do that. If you think a preoperative visit to the hospital would help, ask for that to be arranged. Read a book, sing a song, do a dance.... whatever will help your child to understand what is going to happen to him. Of course you need to know what exactly will happen too. Be sure to ask for the exact sequence of events. When does he need to put on the hospital gown, will they draw blood, does he get an IV (and when) can he bring a favorite item into the operating room with him. Who will be there when he wakes up? Ask, ask, ask, then call them back and ask the questions you forgot.
Thumb nail sketch of Anesthesia
Anesthesia can be broken down into three basic types: general anesthesia, regional anesthesia and sedation anesthesia. (Otherwise known as MAC anesthesia or monitored anesthesia care.)
- General anesthesia: What most of us think of when we say anesthesia. This is the big deep sleep during which the patient is totally unaware of his surroundings. This is the type of anesthesia that most of our (and other) children will need to undergo for most surgical procedures.
- Regional Anesthesia: Spinal anesthesia, epidural anesthesia, and individual nerve blocks. The patient is awake and aware but many are a little sedated. Would be used in our kids only if they were exceptionally cooperative. Very rarely done as the sole anesthetic in children even the typical ones. May be used with general anesthesia to provide additional pain relief after the operation.
- Sedation anesthesia: Patient is groggy but not totally asleep, as they would be with a general anesthetic. Might be used for minor procedures such as x-rays or CT (CAT) scans. (My child had this kind of anesthesia for a special x-ray procedure on his bladder. I was convinced that he would need a general anesthetic, but I listened to my child's anesthesiologist and went along with his plan instead ... guess what? The anesthesiologist was right, my child did fine with this for this particular procedure.)
I will focus a little more on general anesthesia since most of you will be facing this option. I will discuss the process your child will probably go through, and some of the choices you and your child's anesthesiologist will have to make.
A general anesthetic can be broken down into five basic steps.
- Preoperative (in the holding area waiting to go to surgery)
- Induction (go to sleep)
- Maintenance (stay asleep)
- Emergence (wake up)
- Post operative (in the recovery room)
This is where your child will change into a hospital gown, meet the anesthesiologist (again ?!) and have any last minute questions answered. This is where a sedative may be given. The use of preoperative sedative is a good thing to discuss prior to the day of surgery. Preoperative sedatives are not an absolutely necessary item in doing a general anesthetic. However the majority of anesthesiologists who work with young children (6 and under) often use some type of medication to allow an easier transition from parents to operating room. The use of preoperative sedation is very common prior to surgery for adults as well. No matter how well prepared your child is, a small amount of medication may be necessary to transition into the operating room. My concern in this area as a parent and an anesthesiologist is that sometimes the medication can be used in place of preparing the child ahead of time and instead of talkng to the child in the preoperative area. Because of our children's communication difficulties we (parents and professionals) too often assume that the children do not understand what is happening.
The most common options for preoperative sedation may include:
- Midazolam (a Valium like medication) given by mouth, as a nasal spray, in a shot or in an intravenous line
- Ketamine (a sedative ) given by shot, by mouth or in an intravenous line
- Chloral hydrate (a sedative) given orally or in the rectum
- Brevital (a sedative barbiturate) given in the rectum
In your place, I would discuss with my child's anesthesiologist the need for the sedation. I would also inform the anesthesiologist of any unusual reactions my child has had with any medications.
This generally occurs in the operating room with you now pacing in the waiting room. Some hospitals have induction rooms, which allow the parents to be present at the induction of anesthesia for their child. (I was present during the induction of anesthesia for one of my boys ... to be honest I am not sure I would do that again). Induction of anesthesia can occur in one of two ways, by mask with the child breathing an anesthetic gas or by an intravenous injection of a sedative drug followed by the child breathing the anesthetic gas. This is absolutely one of those areas you need to discuss with the anesthesiologist prior to surgery. For children younger than about 5 years old, typical or autistic, most anesthesiologists would opt for a mask induction. (Child breathes the anesthetic gas.) Over the age of about 7 to 9 years in a typical child many of us opt for placing an intravenous line in the holding area and inducing anesthesia through that line. For those of us with autistic 8+ year olds we have some choices. My bias is that with the use of EMLA R cream (a local anesthetic cream applied directly to site where the intravenous line is to be placed) many of our slightly older autistic children would tolerate an intravenous line placement in the holding area. This of course depends very much on you and your child and of course your child's anesthesiologist. My practice in this area varies from child to child. The advantage to a mask anesthetic induction is that the child can be asleep before the IV (intravenous line) is placed. The disadvantage to a mask anesthetic is that it can be very unpleasant for the child and the child can become very agitated.
A combination of medications given either intravenously (placed after the child is asleep if a mask induction is done) and inhaled. Most general anesthetics require the placement of some sort of tube in your child mouth and throat to protect his lungs and deliver the anesthetic gas. This could be an endotracheal tube or an LMA (laryngeal mask airway). The choices of what to use, how much to give and when to give it are the topics for an anesthesia training program and ongoing medical education. You may want to emphasize with your child's anesthesiologist that you think your child will do better if he can be awake, alert and back to normal for him as quickly as possible.
Whatever medications used to continue the anesthesia are allowed to wear off, are reversed, or are turned off and exhaled.
Specially training nurses monitor your child until he is awake and out from under most of the influences of the general anesthetic. Pain medications will be given if needed. This is an area of concern, as even a typical child may wake up confused or disoriented. Ask when you can be with your child to help get him reoriented.
What your anesthesiologist wants to know:
- Your child's age
- Your child's weight
- Medical history: things like heart, lung, and kidney problems
Allergies: drugs and environmental allergies, adverse or unusual reactions
- Medications: all of them ... (don't worry if you get some funny looks, my kids are probably on them too)
- Previous surgeries and anesthetics: What was done and how well did it go.
- Family history of problems with anesthetics
- Child's ability to communicate, both expressive and receptive
- What can be done to help transition your child into the operating room
- What can be done to help your child in the recovery room
Letter to my fellow anesthesiologists:
I know what a challenge anesthetizing an autistic child can be. As a board certified anesthesiologist and a parent of two autistic boys I have been on both sides of this problem. I would not presume to dictate your anesthetic practice. As you know most autistic children are physiologically healthy and tolerate general anesthesia very well. There are a few items I would like to remind you of, if you do not routinely work with this population.
- Currently medical science has not elucidated the cause of autism. There is some very promising work being done. Certainly this is a metabolic- physiologic problem not caused by a psychiatric trauma.
- No two autistic children are alike. This is really a diagnosis of symptoms and signs. You cannot treat them the same because they are not the same. When medical science gets this figured out there will be multiple etiologies for this syndrome.
- The unifying symptom that these children have is difficulty with communication. They may not understand what you are saying and may not be able to express what they are thinking. My very strong bias is that most of an autistic child's behavior problems stein from a frustration with not understanding and not being understood.
- With number three in mind, I believe that our job as anesthesiologists is to not only safely anesthetize them, but to try to return them to their baseline as quickly as possible. A person with an altered perception of reality will not improve if we further alter their reality. For example, a drug such as ketamine, which alters sensory perception, would not be the first choice for a person in whom auditory, visual and tactile senses are already altered.
- Please listen to the parents and caretakers of your autistic patient. They really do know this child the best. Know that many of these parents have been beaten up by our medical system. Our medical colleagues have too often not listened, attributed all physiologic symptoms to the "autism" (autism causes diarrhea ... I kid you not....) Our colleague often base treatments and prognosis on data 20 years out of date. Forgive them if they are a little irritable. They have had to be advocates for their child's education, insurance coverage and they are likely just trying to ensure that the perioperative period goes as smoothly as possible. They want the same thing for their child that you do for yours!