Some kids with ASD [High-Functioning Autism] develop a resistance to (or fear of) change, that then involves being rigid in their approach to their environment. Insistence on sameness, routines and rituals begin. For example:
Particular silverware and plates must be used or the ASD youngster refuses to eat or drink.
Objects may be stacked or lined up in a repetitive manner.
Certain routes must be followed to and from familiar places.
Certain items must be placed in particular places and not moved.
Confusion about coping in a world that is overwhelming influences this behavior, so the youngster with ASD responds to this uncertainty by being in control of their immediate environment, the objects in that environment, and the people in it. Repetitive motor mannerisms may occur when some kids are excited, anxious, or worried. For others, sensory sensitivities and physical enjoyment may drive repetitive jumping, arm flapping, twiddling of fingers in front of their eyes and covering ears and eyes with their hands.
Repetitive behaviors and mannerisms in ASD children is a somewhat neglected area of research. In the past, these behaviors were associated with lower levels of functioning, because repetitive motor mannerisms are also seen in kids with intellectual disability who do not have autism. These behaviors were also thought to increase during the preschool years. There is now some evidence that repetitive motor mannerisms develop differently to insistence on sameness and these behaviors follow different paths over time.
Restricted and repetitive behaviors show different patterns of stability in autistic kids based partly on the ‘subtype’ they belong to. Young kids with low NVIQ (i.e., non verbal IQ) scores often have persistent motor mannerisms. However, these behaviors often improve in kids with higher nonverbal IQ scores. Many kids who do not have “insistence-on-sameness behaviors” at a young age acquire them as they got older, and some kids who had these behaviors sometimes loss them.
What should moms and dads do about routines, rituals and repetitive motor mannerisms?
First, ask yourself the questions: “How much of a problem is it?” and “”Who for?” The answer is often that these behaviors are a problem for the mother or father, educators and counselors rather than the youngster himself (who is quite happy to be preoccupied in these ways). Therefore, it is unlikely that the youngster will want to change his behavior. The rules of thumb when making decisions about whether or not to intervene or change routines, rituals and repetitive motor mannerisms are to ask yourself:
Will the behavior be acceptable in 5 years time?
Does the behavior interfere with or preclude participation in enjoyable activities and an education program?
Does the behavior increase the likelihood of social rejection or isolation?
Does the behavior endanger the youngster or others?
In preschoolers with ASD, adherence to non-functional routines and rituals and displaying repetitive motor mannerisms may be judged inappropriate because they fall into one or more of these categories, or may be tolerated by the family and others and are not seen as problematic.
The most successful treatments for ASD children with repetitive rituals are behavioral therapy and medication. Behavioral therapy, also known as cognitive-behavioral psychotherapy (CBT), helps children learn to change thoughts and feelings by first changing behavior. It involves gradually exposing children to their fears, with the agreement that they will not perform rituals, to help them recognize that their anxiety will eventually decrease and that no disastrous outcome will occur.
Some treatment plans involve having the youngster "bossing back" the repetitive rituals, giving it a nasty nickname, and visualizing it as something he can control. Over time, the anxiety provoked by certain unwanted stimuli in the environment and the urge to perform rituals gradually disappear. The youngster also gains confidence that he can "fight" repetitive rituals.
Repetitive rituals and routines can sometimes worsen if it's not treated in a consistent, logical, and supportive manner. So it's important to find a therapist who has training and experience in treating this issue. Just talking about the rituals and fears has not been shown to help repetitive rituals, and may actually make it worse by reinforcing the fears and prompting extra rituals. Family support and cooperation also go a long way toward helping a youngster cope with repetitive rituals.
Many children can do well with behavioral therapy alone while others will need a combination of behavioral therapy and medication. Therapy can help your youngster and family learn strategies to manage the ebb and flow of symptoms, while medication often can reduce the impulse to perform rituals.
Resources for parents of children and teens on the autism spectrum:
It is hard to know if kids with ASD (high functioning autism) are as lonely as their moms and dads believe they are. Therapists do know that playing with a friend, making a friend and being with a friend are "overwhelming skills" for ASD children. Kids without autism make no sense to "autistics," because they are totally preoccupied with their own agendas.
Teaching ASD children social skills is a big task for moms and dads and educators. It is not like teaching the child how to ride a bicycle or tie a shoe, but rather trying to teach something no one formally taught you. How do you teach someone how to read a room, especially someone who has no understanding of other individual's emotions and body language?
Kids with autism have no idea about how to reason socially and come up with proper courses of action in social situations (e.g., one guy with ASD level 1 got lost in the school corridors on his way to gym. He had forgotten the route, but he did not think to simply follow his classmates to the gym).
Yet therapists emphasize the need to teach ASD children social skills because they desperately need them to get along in life. The child's lack of social understanding virtually colors every other experience in his/her life. Yet the question of whether kids on the spectrum are truly lonely and want friends is a different discussion. Like all kids, some are extroverted and others are more withdrawn. Like all kids, they probably vary in their need for social interactions.
When researchers ask kids with ASD about friendship, they are usually very negative. They think of friendship with other kids as too much work and often prefer grown-ups. For example, when a teacher was forcing a six-year-old to participate in a playgroup with other kids, he said, "I hate kids. I don't play with kids. I'm not a kid. I was born a grown-up."
Michael, a fourteen-year-old with Aspergers advises other Aspergers children, "If you like being on your own, then be happy with your own company and don't let anyone convince you its wrong." His advice to ‘pushy moms and dads’ is "Never force your youngster to socialize. Most ASD children and autistic individuals are happy to just be by themselves."
However, these kids might be happier by themselves because social activity has caused them so much pain in the past. In one study, gifted kids with ASD could not describe friendship in positive terms such as "a friend is someone who is nice to you." They had only negative associations such as "a friend is someone who does not hit you." These kids told interviewers only about how mean other children had been to them and seemed to lack any idea of what reciprocal friendship really means.
Yet as autistic children go through the teen years, most realize that they are missing out by not fitting in. It is at this point in their lives that they crave friendships with peers, yet this unfulfilled desire on top of high school pressure to conform, constant rejection and harassment can often cause depression in ASD teenagers. They grow more isolated even as they crave more interaction with other teenagers. Young kids with ASD often believe everyone in their class is the same and everyone is a potential friend. ASD teenagers know better.
Research shows that the more time a person with ASD spends socializing, the happier she is. Autistic children can and do form friendships. When they do, research shows that even one friendship will speed up their entire social development.
People married to someone with ASD often talk about their own feelings of loneliness. They tell counselors that marriage to a person with autism feels like living alone. An ASD husband/wife often does not attend to details like anniversaries, may not connect with the couple's kids on an emotional basis, and may not benefit from marriage counseling. A parent of a youngster with ASD may feel rejection when their youngster refuses to cuddle or express affection.
The youngster's needs are unrelenting and yet the moms and dads' rewards are sometimes rare. Brothers and sisters hide their lonely feelings about living in a family where their autistic sibling monopolizes their moms and dads' precious time and they miss the normal give and take of sibling relationships. Many siblings believe that the ASD child's “disability” is an advantage …a passport to special attention, recognition and privilege.
Helping kids with autism spectrum disorder develop social skills will no doubt become easier in the future. Every day educators are developing better techniques. Researchers are closing in on the genetic and environmental causes of autism and may someday develop a cure. There is promising new research being conducted in a study on "Friendship and Loneliness in Individuals with ASD." Perhaps someday the answers will be clearer for individuals with autism and those who love them.
ASD Teens and Social Isolation—
In the teenage world where everyone feels insecure, teens that appear different are ostracized. Autistic teens often have odd mannerisms. For example, they may talk in a loud un-modulated voice, avoid eye contact, interrupt others, violate others’ physical space, and steer the conversation to their favorite “weird” topic. These teens may appear willful, selfish and aloof, mostly because they are unable to share thoughts and feelings with others. Isolated and alone, many of these adolescents are too anxious to initiate social contact.
Many teens on the spectrum are stiff and rule-oriented and act like little grown-ups – a deadly trait in any adolescent popularity contest. Friendship and all its nuances of reciprocity can be exhausting for a person with ASD, even though he wants it more than anything else.
Resources for parents of children and teens on the autism spectrum:
Parents who have discovered that their young child is "gifted" because he/she may be able to recite the alphabet at 18 months of age - or can read words by the age of 2 - may want to reassess the situation.
Hyperlexia often coexists with ASD level 1 [high-functioning autism]. Hyperlexia is not seen as a separate diagnosis; however, with current fMRI research revealing that hyperlexia affects the brain in a way completely opposite to that of dyslexia, a separate diagnosis may be on the horizon.
Children with hyperlexia may recite the alphabet as early as 18 months, and have the ability to read words by age two and sentences by age three. Many are overly fascinated with books, letters, and numbers. However, the child’s ability is looked at in a positive light, so many moms and dads delay in getting their “precocious” youngster any help because they believe that he/she is a blooming genius.
Hyperlexia has many characteristics similar to Autism, and because of its close association with Autism, hyperlexia is often misdiagnosed. The main characteristics of hyperlexia are an above normal ability to read coupled with a below normal ability to understand spoken language. Many of the social difficulties seen in hyperlexic children and teens are similar to those found in Autism. Often, hyperlexic kids will learn to speak only by rote memory and heavy repetition. They may also have difficulty learning the rules of language from examples or from trial and error.
Hyperlexic kids are often fascinated by letters or numbers. They are extremely good at decoding language and thus often become very early readers. Some hyperlexic kids learn to spell long words (e.g., elephant) before they are two years old and learn to read whole sentences before they turn three.
Hyperlexia may be the neurological opposite of dyslexia. Whereas dyslexic kids usually have poor word decoding abilities but average or above average reading comprehension skills, hyperlexic kids excel at word decoding but often have poor reading comprehension abilities.
Some experts denote three explicit types of hyperlexics, specifically:
Type 1: Neurotypical kids that are very early readers.
Type 2: Kids on the autism spectrum, which demonstrate very early reading as a splinter skill.
Type 3: Very early readers who are not on the autism spectrum though there are some “autistic-like” traits and behaviors which gradually fade as the youngster gets older.
The severity, frequency, and grouping of the following symptoms will determine an actual diagnosis of hyperlexia:
A precocious ability to read words far above what would be expected at a youngster’s age
Abnormal and awkward social skills
An intense need to keep routines, difficulty with transitions, ritualistic behavior
Auditory, olfactory and / or tactile sensitivity
Difficulty answering "Wh–" questions, such as "what," "where," "who," and "why"
Difficulty in socializing and interacting appropriately with people
Echolalia (repetition or echoing of a word or phrase just spoken by another person)
Fixation with letters or numbers
Listens selectively / appears to be deaf
Memorization of sentence structures without understanding the meaning
Normal development until 18-24 months, then regression
Self-stimulatory behavior (hand flapping, rocking, jumping up and down)
Significant difficulty in understanding verbal language
Specific or unusual fears
Strong auditory and visual memory
Think in concrete and literal terms, difficulty with abstract concepts
Youngster may appear gifted in some areas and extremely deficient in others
Hyperlexia appears to be different from what is known as hypergraphia (i.e., urge or compulsion to write), although as with many mental conditions or quirks, it is possible that this is more a matter of opinion than strict science.
Despite hyperlexic kid’s precocious reading ability, they may struggle to communicate. Their language may develop in an autistic fashion using echolalia, often repeating words and sentences. Often, the youngster has a large vocabulary and can identify many objects and pictures, but can’t put their language skills to good use. Spontaneous language is lacking and their pragmatic speech is delayed. Between the ages of 4 and 5, many kids make great strides in communicating and much previous stereotypical autistic behavior subsides.
Often, hyperlexic kids have a good sense of humor and may laugh if a portion of a word is covered to reveal a new word. Many prefer toys with letter or number buttons. They may have olfactory, tactile, and auditory sensory issues. Their diets may be picky, and often potty training can be difficult. Social skills lag tremendously. Social stories are extremely helpful in developing effective age-relative social skills, and setting a good example is crucial.
Many moms and dads have had their hyperlexic kids go through numerous evaluations, with various confusing and contradictory diagnoses applied – ranging from Autistic Disorder to ADHD, or language disorder. In other cases, there is no diagnosis applied except “precociousness” or “gifted.”
Controversy exists as to whether hyperlexia is a serious developmental disorder like autism, or whether it is in fact a speech or language disorder of a distinct and separate type, or, in some cases, it is simply advanced word recognition skills in a normal (neurotypical) youngster, especially when sometimes accompanying “autistic-like” symptoms are present.
Treatment—
The first step in treatment is to make the proper diagnosis. Then management of the condition follows. When precocious reading ability and extraordinary fascination with words presents itself in a young son or daughter – especially when accompanied by other language or social problems that might suggest an autistic spectrum disorder – a comprehensive assessment by a knowledgeable professional or team familiar with the differential diagnosis of the various forms of hyperlexia is indicated.
Resources for parents of children and teens on the autism spectrum:
It's common for ASD level 1 (high functioning autistic) children of all ages to experience school anxiety and school-related stress.
This is often most apparent at the end of summer when school is about to start again, but it can occur year-round. Social, academic and scheduling factors play a major role, as do hidden environmental stressors.
Below are some of the anxiety-related factors that both moms and dads and teachers should consider when dealing with ASD children:
1. Many schools now have anti-bullying programs and policies. Though bullying does still happen at many schools, even those with these policies, help is generally more easily accessible than it was years ago. The bad news is that bullying has gone high-tech. Many children use the Internet, cell phones and other media devices to bully other children, and this type of bullying often gets very aggressive.
One reason is that bullies can be anonymous and enlist other bullies to make their target miserable. Another reason is that they don't have to face their targets, so it's easier to shed any empathy that they may otherwise feel. There are ways to combat cyber-bullying, but many moms and dads aren't aware of them – and many bullied Aspies feel too overwhelmed to deal with the situation.
2. Most ASD children want to have friends but may not have the social skills to acquire them. Concerns about not having enough friends, not being in the same class as friends, not being able to keep up with friends in one particular area or another, interpersonal conflicts, and peer pressure are a few of the very common ways children on the autism spectrum can be stressed by their social lives (or lack of a social life) at school.
3. Children are being assigned a heavier homework load than in past years – and that extra work can add to a busy schedule and take a toll.
4. Due in part to the busyness of kids’ lives and the hectic schedules of most moms and dads, the sit-down family dinner has become the exception rather than the rule in many households. While there are other ways to connect as a family, many families find that they’re too busy to spend time together and have both the important discussions and the casual day recaps that can be so helpful for Aspies in dealing with the issues they face. Due to a lack of available family time, many moms and dads aren't as connected to their children, or knowledgeable about the issues they face.
5. Not having necessary supplies can be a very stressful experience for an autistic youngster. If the youngster doesn't have an adequate lunch, didn't bring his signed permission slip, or doesn't have a red shirt to wear on "Red Shirt Day," for example, he may experience significant stress.
6. You may already know that there are different styles of learning -- some learn better by listening, others retain information more efficiently if they see the information written out, and still others prefer learning by doing. If there's a mismatch in learning style and classroom, or if your youngster has a learning disability (especially an undiscovered one), this can obviously lead to a stressful academic experience.
7. Noisy classrooms and hallways, noise pollution from nearby airports, heavy traffic, and other sources have been shown to cause stress that impacts ASD kids’ performance in school.
8. Many Aspies aren't getting enough sleep to function well each day. As schedules get busier, even young children are finding themselves habitually sleep-deprived. This can affect health and cognitive functioning, both of which impact school performance. Operating under a sleep deficit doesn’t just mean sleepiness, it can also lead to poor cognitive functioning, lack of coordination, moodiness, and other negative effects.
9. In an effort to give their autistic children an edge, or to provide the best possible developmental experiences, some moms and dads are enrolling their children in too many extra-curricular activities. As these children become teens, school extracurricular activities become much more demanding.
10. With the overabundance of convenience food available these days and the time constraints many experience, the average Aspie's diet has more sugar and less nutritious content than is recommended. This can lead to mood swings, lack of energy, and other negative effects that impact stress levels.
11. Most Aspies experience some level of stress or anxiety in social situations they encounter in school. While some of these issues provide important opportunities for growth, they must be handled with care and can cause anxiety that must be dealt with.
12. A good experience with a caring teacher can cause a lasting impression on a youngster's life – but so can a bad experience! While most teachers do their best to provide “special needs kids” with a positive educational experience, some Aspies are better suited for certain teaching styles and classroom types than others. If there's a mismatch between student and teacher, the youngster can form lasting negative feelings about school or his own abilities.
13. Many of us experience test anxiety, regardless of whether or not we're prepared for exams. Unfortunately, some studies show that greater levels of test anxiety can actually hinder performance on exams. Reducing test anxiety can actually improve scores. Certain aspects of an ASD youngster's environment can also cause stress that can spill over and affect school performance.
14. There's a lot of pressure for children to learn more and more and at younger ages than in past generations. For example, while a few decades ago kindergarten was a time for learning letters, numbers, and basics, most kindergarteners today are expected to read. With test scores being heavily weighted and publicly known, schools and teachers are under great pressure to produce high test scores; that pressure can be passed on to children.
15. Just as it can be stressful to handle a heavy and challenging workload, some kids on the spectrum can experience stress from work that isn't difficult enough. They can respond by acting-out or tuning-out in class, which leads to poor performance, masks the root of the problem, and perpetuates the difficulties.
Resources for parents of children and teens on the autism spectrum:
It is not uncommon for ASD youngsters to experience great pain and discomfort that goes unreported, unnoticed by others, undiagnosed, and untreated. Enduring pain and allowing it to become chronic is extremely detrimental to your youngster's ability to function, grow, and learn. Untreated pain and discomfort will also seriously affect your child's behavior and ability to communicate with others.
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:
