Of all the “meltdown triggers” that drive behaviors, experiencing pain and discomfort is extremely significant. This is because pain affects behavior. Think of the last time your youngster was sick and feeling significant pain or discomfort (e.g., flu symptoms, migraine, menstrual cramps, pulled muscle, etc.). Now, think of how being in such pain manifested in his/her behavior. Perhaps he/she:
- Felt especially vulnerable
- Just wanted to be left alone
- Just wanted to crawl under the covers and stay there
- Lashed out or snapped at family members
- Lashed out or snapped when anyone made a demand of him/her
- Was especially hypersensitive to light or sound
What if the pain and discomfort is not treated and is allowed to persist due to a high pain tolerance?
Revisit the list above and consider how your child’s behavior might intensify the longer he had to endure the pain. Not only would he feel lousy, he would also feel disoriented and distracted. His attention would be focused on trying his best to cope and manage the pain that threatens to overwhelm him. Slowly but surely, any – or all – of the following could occur:
- he might stop caring about his appearance
- his ability to function, care for yourself, or interact with others would be greatly reduced
- his mental health would be affected, eroded, and over time, seriously impaired
- his self-esteem would suffer
- the culmination of feeling physical pain would converge with mental anguish, leaving him weak and vulnerable
One prevalent form of pain in kids on the autism spectrum occurs with allergies. The challenge is that many moms and dads do not recognize this and see their youngster's symptoms in isolation, if at all (e.g., the youngster may frequently experience ear blockages and ear infections, sometimes from a very young age).
Perhaps the youngster manifested outwardly visual symptoms (e.g., red, sore, pussy ears that drained spontaneously). The youngster may have been treated with antibiotics or had tubes in her ears to relieve pressure. More often than not, the ear problems were one symptom within a cluster of other symptoms, indicative of allergies.
In addition to ear blockages and infections, the Autistic youngster may also manifest symptoms of an allergy, such as:
- Congestion and runny nose
- Coughing and sneezing
- Headaches and migraines
- Red, itchy, or runny eyes
- Sinus pressure over or under eyes
- Sore throat
- Swollen glands
You might have discovered that several of these symptoms manifest together at the same times of the year. The allergens could be absolutely anything — from one indicator (e.g., seasonal pollen) to an exhaustive collection of many known indicators. While you may have been treating one or two symptoms, you may not have been addressing the bigger picture (i.e., chronic allergies).
Treatment is available to relieve many of the physical side effects of severe allergies, but testing is necessary to determine the allergen type and degree of severity. This may be problematic for many kids on the spectrum, especially if they have had unpleasant experiences with doctors who were not as patient or sensitive as they should have been.
Some of the testing and treatment may involve drawing blood or receiving steroid shots, which may be an overwhelming experience (and perhaps not worth the potential trauma). Another type of testing is non-intrusive and involves the child holding various physical examples of allergens to ascertain a reaction. It is also possible that standard, over-the-counter medications may work to contain some or all symptoms of the allergies — at least until the child or teen can determine if she wishes to pursue other forms of obtaining relief.
Another prevalent factor that drives pain and discomfort in ASD kids is the gastrointestinal issues (e.g., severe gas and cramping, bloating, constipation, impaction, diarrhea, etc.). A number of such kids have an inability to properly digest dairy and wheat-based food products (among others), such that the enzymes from these foods “leak” through the gut and into the bloodstream, potentially creating an adverse reaction described by some as an “opiate” effect. In clinical trials, the dairy products are referred to as “casein,” and the wheat-based foods are referred to as “gluten.”
Moms and dads may find themselves frustrated with a youngster who seems “inappropriately” or embarrassingly gassy or who seems to have bowel complaints. Again, the youngster is not being deliberately difficult; there is a legitimate issue that is driving pain and discomfort.
As with pursuing the treatment of allergies, there are options that range from restrictive to less intrusive forms of treatment. In some instances, bacteria of the lower gastrointestinal tract may be responsible for creating these issues. This can be an excruciatingly painful experience that may cause a youngster to double over in pain.
If the youngster is unaware of the root of the problem or doesn't know how to describe the pain in the moment, his “behavior” may be misinterpreted instead of correctly identified as a communication. Consult with your pediatrician to determine the appropriate treatment to get rid of all traces of the bacteria.
The procedures to determine the cause of the gastrointestinal tract problems may be very physically intrusive. You may want to explore less invasive methods of intervention as an alternative if the youngster has not had a good history with medical practitioners. These may include:
- Avoiding foods with dyes or preservatives
- Considering soy and other substitute foods, perhaps for a select time frame, to note any cause and effect
- Cutting back on red-meat proteins in favor of chicken, fish, or other food options
- Increasing consumption of natural food fiber found in fruits and vegetables
- Increasing fluid intake, especially water, which may prove helpful as well
- Promoting massage and exercise
- Pursuing a diet free of dairy and wheat, in partnership with the youngster and in consultation with a dietician or nutritionist
- Using any over-the-counter products designed to aid gas relief or alleviate bowel distress, like fiber-based additives
Some gastrointestinal problems may be compounded by the youngster's fears and anxieties around toileting. Children on the spectrum tend to be careful observers. Most will attempt toileting — especially urinating — in their own way and in their own time, just at a time later than what might be considered developmentally appropriate. Still others may appear to deliberately wet or soil themselves. But understand that your youngster is not deliberately being insubordinate. He really is struggling and feeling just as frustrated as you.
Here are some tips that may help clarify your understanding of toileting issues in the youngster:
- If the youngster is not feeling safe and comfortable and in control, withholding body waste is one way of independently attempting to gain control.
- Your youngster may be frightened by the toilet, believing that he may fall in and get sucked down.
- Your youngster may be in a “perfectionism” mode, unwilling to admit his need to use the toilet when asked, or embarrassed to confess the need.
- Your youngster may be overwhelmed by the loud roar of a flushing toilet.
- Your youngster may not be connected enough with his body to consistently receive the physical “signals” or pressure indicating the need to evacuate waste.
- Your youngster may panic, believing that in making a bowel movement, he is shedding a vital, living piece of his body.
To counteract these and other issues, it will be important to deconstruct the whole toileting process for your youngster using very basic, visual information. Explain the process of how and why the body rids itself of waste. Use your own visuals (e.g., graphics) to explain the human digestive system and name the internal parts of the body. Reinforce with your youngster that the process of eliminating waste from the body is natural. Also reinforce that using the toilet is a private matter. It is not to be discussed freely in public. It should only be discussed with close, trusted individuals (list them in writing), usually if there is cause for concern like constipation, impaction, diarrhea, etc.
Some of these kids will want specific assurances about exactly what happens to their stool once it gets flushed away (e.g., “where does it go?” … “what becomes of it?”). You may need to research this yourself, or look it up on the Internet with your youngster. If you are uncertain if your youngster experiences the sensations indicating the need to use the bathroom, first ask him about it. Talk about the ways in which you know your body gives you the appropriate signals, and plan daily, gentle exercises designed to better connect your youngster with his body (e.g., yoga, breathing, stretching exercises, etc.).
There may be some adaptations you can make in giving your youngster control in toileting (e.g., adjusting the water pressure to avoid a rushing roar when the toilet is flushed, partnering with your youngster to select a new toilet seat that is more comfortable and makes the toilet opening less imposing).
Keeping a sticker or piece of tape handy when in public will empower your youngster's encounters with automatic flush toilets, which can create great anxiety for being so unpredictable. Simply have your youngster cover the toilet sensor with the adhesive, and remove it when ready. The toilet will be disabled until the sticker is removed.
As your youngster grows into an adult, she should be 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 (e.g., bleeding, a 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 these physiological processes.
There are some kids with ASD who are inconsistent in reporting pain – if they report it at all. Here’s why:
- As with toileting, your youngster 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 youngster may have been severely traumatized by experiences with doctors and nurses so that he considers enduring the pain the better option.
- Your youngster may not realize that what he's feeling in the moment is anything any different from what anyone else feels.
- Your youngster may not understand that there exists an unwritten social expectation that all people report pain and discomfort in order to gain relief.
In addition to educating your youngster about how the body works when communicating pain, it will also be important to partner with your youngster 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 needs to be loud and clear: “It is not okay to live with chronic pain.” Also, it will help considerably in relieving your youngster’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 youngster to consider doing the following:
- 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.
- Assign your youngster the responsibility of reading you driving directions to and from the office location, noting street names and landmarks.
- Because of downtime while waiting, suggest your youngster bring something to read or work on, possibly to share with the doctor as well.
- Before making the trip, partner with your youngster to develop a list of questions to ask the doctor, nurse, or receptionist. If there's the opportunity to do this, allow your youngster to take the lead in gleaning the information desired.
- Discuss flexibility of time frames with your youngster, 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 youngster (he can bring this list with him on appointment day).
- If at all possible, arrange to meet the doctor, the nurse practitioner, and — at the least — the receptionist. Again, provide the opportunity for your youngster to take pictures.
- Once at the office, empower your youngster by allowing him to take photographs inside and out. Review these later at home (where your youngster feels most comfortable), eliciting details from him.
- Schedule a pleasurable activity for your youngster to follow the appointment. Ensure that the activity occurs regardless of how well you think your youngster does or if he “earned” it.
- Suggest that your youngster photograph a typical private room, being remindful that, next visit, you may not get that exact room but one very much like it.
- With your youngster, schedule a time to drive to the doctor's office before the appointment day.
This is a lot of prep work and a significant investment of time, but in the long run, this investment of time up front will go a long way in supporting your youngster to feel safe and comfortable and in control. Empowering her to take the lead during this process promotes her ownership and sense of self-advocacy.
Resources for parents of children and teens on the autism spectrum:
==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder
==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance
==> Teaching Social-Skills and Emotion-Management to Children with Autism Spectrum Disorder
==> Parenting Children and Teens with High-Functioning Autism: Parents' Comprehensive Handbook
==> Unraveling the Mystery Behind High-Functioning Autism: Audio Book
==> Crucial Research-Based Parenting Strategies for Children and Teens with High-Functioning Autism