Why Does Pain Go Unreported?
It is absolutely critical that the child with Asperger's grows into an adult able to identify and advocate for her own relief from pain. As with toileting, it will be useful to visually explain how the brain and body usually work together to send signals indicating pain. Sometimes the signals are accompanied by visuals that help reinforce that something is wrong, such as a bleeding cut or blister. Other times, the signals may be exclusively inside the body and unseen, just felt. The Internet or your local library should be a resource in accessing images, books, or videos that describe this physiological process.
Reasons for Not Reporting Pain
Still, there are some children with Asperger's who are inconsistent in reporting pain, if they report it at all. Here are some speculations as to why this may be:
Your child may not understand that there exists an unwritten social expectation that all people report pain and discomfort in order to gain relief.
Your child may not realize that what he's feeling in the moment is anything any different from what anyone else feels.
As with toileting, your child may not have a nervous system he feels fully connected with, such that the pain is delayed or not “registering” properly.
Being inherently gentle and exquisitely sensitive, your child may have been severely traumatized by experiences with doctors and nurses so that he considers enduring the pain the better option.
One mom shared the following observations about her young son:
People had told me that Alex had a high tolerance for pain. He broke his arm one day, and the teacher saw it happen, but he just winced and went on. Later, she realized he couldn't use the hand. I started realizing that Alex had experienced pain from an early age. He knocked his four front teeth loose at three years and then hit them again at four and five. (We now know he has no depth perception and is extremely farsighted.) He probably had experienced pain as a part of daily life without being able to explain it. I went home and asked Alex about his body. He felt sure he wasn't registering pain well, but when he came down to it, he reported what turned out to be plantar warts, which are quite painful.
Another young boy suffered with mild asthma for several years of his young life. Upon gaining diagnosis and treatment, his first exclamation was to say, “Mom, I didn't know it wasn't supposed to hurt when you breathe.”
Ascertaining pain in your child may prove especially challenging if he is often expressionless. During an assessment a teenager with Asperger's stunned almost everyone in the room. When asked about pain and discomfort, she rattled off a long laundry list of ailments with which she coexists on a daily basis. No one would have ever guessed her struggles simply by looking at her demeanor; her facial expressions revealed nothing. It was a matter of asking the question in order to receive the answer.
Alert
On occasion, medical professionals are not patient, gentle, or sensitive to your child's needs. Until your child can advocate for his own needs, never hesitate to advocate on his behalf. If necessary, cancel an appointment, switch doctors, call in, or write a letter of (tactful) complaint, or otherwise diplomatically make your child's needs known.
One young man in his twenties was grappling with severe, debilitating dental pain. He adamantly refused to seek treatment because of prior traumatic experiences with the dentist. Not seeking medical treatment for his pain became the path of least resistance for him. However, his pain was chronic. He opted to self-medicate by using nicotine, marijuana, and alcohol.
Teaching Your Child Self-Advocacy
In addition to educating your child about how the body works when communicating pain, it will also be important to partner with your child in gaining self-awareness and control leading to lifelong self-advocacy. This means reinforcing that it is good and desirable to identify and report one's own pain. The message to the young girl who endured a litany of daily pains (and others like her) needs to be loud and clear. It is not okay to live with chronic pain. Other thirteen-year-old girls don't live with it, it is not normal or typical, and relief is available once proper diagnosis is made. Imagine how detrimental enduring chronic pain would be for this young girl if she were thirty-three instead of thirteen. How productive would her life be, and how would others characterize her “behaviors”?
Additionally, it will aid tremendously in quelling your child's anxiety if you endeavor to demystify the entire concept of going to the doctor in advance of an appointment. You may do this by partnering with your child to consider doing the following:
With your child, schedule a time to drive to the doctor's office before the appointment day.
Assign your child the responsibility of reading you driving directions to and from the office location, noting street names and landmarks.
Once at the office, empower your child by allowing him to take photographs inside and out. Review these later at home (where your child feels most comfortable), eliciting details from him.
If at all possible, arrange to meet the doctor, the nurse practitioner, and — at the least — the receptionist. Again, provide the opportunity for your child to take pictures.
Suggest that your child photograph a typical private room, being remindful that, next visit, you may not get that exact room but one very much like it.
Before making the trip, partner with your child to develop a list of questions to ask the doctor, nurse, or receptionist. If there's the opportunity to do this, allow your child to take the lead in gleaning the information desired.
Arrange to get as many specifics about the appointment as possible, including approximate wait time and details of any procedures, along with literature and other visuals.
Discuss flexibility of time frames with your child, and empower him to keep track of the time during the actual appointment.
Gain clear information about the tentative sequence of events in order to visually list these out with your child (he can bring this list with him on appointment day).
Because of downtime while waiting, suggest your child bring something to read or work on, possibly to share with the doctor as well.
Schedule a pleasurable activity for your child to follow the appointment. Ensure that the activity occurs regardless of how well you think your child does or if he “earned” it.
Essential
Doctors' offices can be very busy settings with appointments often backed up and running late. Time permitting, call before leaving to confirm your scheduled time. Don't be surprised, though, if, upon finally meeting with the doctor, your child doesn't give him a good talking to for “being late”!
If this sounds like a lot of prep work and a significant investment of time, it is. But in the long run, this investment of time up front will go a long way in supporting your child to feel safe and comfortable and in control. Empowering him to take the lead during this process promotes his ownership and sense of self-advocacy.
