Throughout history, the field of medicine has made great, if not enormous strides to provide quality care to so many different people. Yet, with all the advances in technology, pathology, and understanding of the human body and disease or disorders, many individuals remain under-treated and misunderstood. Just read the article, "Why Do the Mentally Ill Die Younger" from Time to see there are many individuals and groups in this situation.

Among those, I would include the person with autism spectrum disorder. Many autistics are either non-verbal or can have amazing verbal skills but not be able to locate or talk about the quality of their pain or distress. Too often, the young child with Asperger's Syndrome has been taught a very social appropriate social scripting but has never been able to communicate how he or she feels on the inside. He or she may not be able to regulate their internal environment nor understand the signals the body sends out. Teaching a child or adult how to listen to their body, to decode and sort out the messages of pain, hunger, anxious, excited, scared, ashamed, embarrassed, of love and hate all takes time and patience.

If these feelings are not broken down and taught in a way that the individual truly understands (i.e. not just a social script!) then how on earth can we possibly expect the individual with autism to get medical care? How can he or she talk about the quality of their pain? A dull pain versus a stabbing pain versus a pins and needles pain all might lead a physician to very different diagnostic places. But if the child or adult can only describe it as 'hurts' or can only use behavior as a means to communicate, can we expect the same type of care as the next person?

I work at an autism program where one of the things we hand out is a Where does it hurt? page and a pain rating scale. Of all the things I can provide for families or professionals working with an individual with autism, I feel those two are the most important. Pain and feelings are the ultimate teachable moments and they come up on a near daily basis. Hunger can be painful unless we understand and can put that feeling into perspective and to know how to relieve the pain by eating. Fullness can be painful unless we understand the meaning of what's happening and know to stop eating. Pain is very useful to the body as it alerts us that something is wrong. Something needs help or needs to be fixed.

Again, I defer to one of my favorite books "A Child in Pain" by Dr. Kuttner as she discusses the protective value of pain: "In its healthiest form, short-term pain is protective, preventing damage and distress. As David, aged four and a half, discovered: 'You've got to listen to your stomach when it's hurting, cause if you don't, your stomach will get upset!' David knew this firsthand; for five days he had had stomach pains and gastric spasms and had been throwing up. The pain signals had taught him that if he continued eating the tuna sandwich that his well-intentioned mother had given him, his stomach might send it back again. David, who was recovering from a gastrointestinal virus, had come to respect the signals and sensations he was receiving from his stomach, which were helping him to eat only what his stomach could handle and telling him when to stop. Because his actions helped settle his pain, and nausea, and because he was being listened to--although he was only four and a half--he was learning how to manage his own distressing body experiences" (pg. 2).

Pain serves a purpose and we need to be teaching that purpose to our loved ones with ASD. Pain is a survival mechanism and keeps us from damaging our bodies. When a person can by hyposensitive and not feel pain the same way that others do, it makes these teachable moments all that more imperative. How many of us know a person with ASD who walked around with broken bones or serious illness because the pain was not felt or recognized? We may not always be able to teach how to feel pain if there are serious sensory issues, but often, we can teach clues to a painful experience or illness. Teach children that when they fall, they need to check themselves over. Does anything feel different? Should I tell my mom or friend that I just fell down and could be hurt? Teach adults to recognize signs of fever, such as sweating. Teach children and adults to understand that red and swollen eyes and a very dry mouth might mean illness. Teach them to recognize the signs that mean the body is protecting itself from illness or is in pain.

But here's where it gets tricky. Shame and embarrassment can be felt with the same intensity as a broken toe or stomach ache but these feelings mean something else. The body is not in danger, but the mind and sense of being are. Those are internal emotions that the child or adult needs to know how to deal with and needs to know who to talk to about it all. How we treat emotional feelings is very different than how we treat physical pain. And it's not always easy to tell the difference between them and be able to sort them all out. But if we don't talk about the difference, they may never know. It's just as important for the doctor to hear that the patient is in emotional pain as it is to hear about physical pain. Physicians need this information to treat the patient in the right way.

Ask yourself if the autistic person you know and love can adequately describe their internal environment? Can they recognize and communicate pain to you or their medical doctor? Is he or she telling you they are in pain right now but you aren't listening or interpreting their messages correctly? Are you interpreting behaviors as only behaviors or do those behaviors have meaning such as pain or emotion?

The above picture has a lot of meaning to those who know the story. The picture was pulled from a video I took of Ewan in a therapy session because he wasn't swallowing liquids well. It was only after a very talented and experienced professional watched this and knew what the body language implied: a very painful disorder known as Eosinophilic Esophagitis. Only Ewan didn't have the language at the time nor the ability to talk about pain in a way that would let us know just how much help he really needed.