Many young people with High-Functioning Autism (HFA) and Asperger’s (AS) will receive another diagnosis at some point in their development. In one study, 70% of a sample of kids with an autism spectrum disorder (ages 10-14) had also been diagnosed with another disorder. 41% had been diagnosed with two or more additional disorders. The most common types of additional diagnoses are those related to anxiety.
Kids with HFA and AS have more severe symptoms of phobias, motor/vocal tics, obsessions/compulsions, and social phobia than “typical” kids do. Fear and anxiety makes it very difficult for young people on the spectrum to do everything from making friends to going school. And to further complicate matters, they have a much harder time self-reporting their symptoms – many of which only occur internally (e.g., constant worrying).
Unfortunately, children with HFA and AS suffer with more than their fair share of fear and anxiety. A multitude of traits associated with autism spectrum disorders contribute to this, for example:
- difficulty in accepting criticism or correction
- difficulty in assessing cause-and effect-relationships (e.g., behaviors and consequences)
- difficulty in expressing emotions
- difficulty in generalizing
- difficulty in handling relationships with authority figures
- difficulty in interpreting meaning to others’ actions
- difficulty in learning self-monitoring techniques
- difficulty in negotiating either in conflict situations or as a self-advocate
- difficulty in perceiving and applying unwritten social rules or protocols
- difficulty with “teamwork”
- difficulty with organizing and sequencing (i.e., planning and execution; successful performance of tasks in a logical order)
- difficulty with unstructured time
- discomfort with competition
- extreme reaction to changes in routine, surroundings, people
- generalized confusion during periods of stress
- lack of trust in others
- low to medium level of paranoia
- low-frustration tolerance
- mental shutdown response to conflicting demands and multi-tasking
- missing or misconstruing others’ agendas, priorities, preferences
- out-of-scale reactions to losing
- poor judgment of when a task is finished (often attributable to perfectionism)
- reluctance to ask for help or seek comfort
- rigid adherence to rules and social conventions where flexibility is desirable
- ruminating (i.e., fixating on bad experiences with people or events for an inordinate length of time)
- sensory sensitivities
- sleep difficulties
- social skills deficits
- tendency to “lose it” during sensory overload, multitask demands, or when contradictory and confusing priorities have been set
- very low level of assertiveness
Most parents find it very painful to watch their HFA or AS youngster struggle day-to-day with excessive fear and anxiety, but it's especially difficult if they’re not sure whether their child is worrying “too much” and in need of assistance.
So, how do you know if your youngster’s fears are excessive and a cause for concern? Here are just a few of the signs that he or she is in a chronic state of worry or fear:
- The child says negative things about himself such as, “I’m no good” …or “I hate myself” … or “I can’t do this.”
- The child frequently complains of stomachaches, being nervous at school, being afraid to go to sleepovers or birthday parties, or has frequent headaches.
- He has frequent “meltdowns” over seemingly small things that usually do not bother “typical” children.
- The child often avoids the things that trigger her fear and anxiety (e.g., spends a great deal of time in the school nurse's office, refuses to participate in activities other kids enjoy, throws a tantrum before every appointment with the dentist or doctor, gets sick on Sunday nights due to worrying about going back to school on Monday morning, etc.).
- She appears to be in need of constant reassurance from parents.
To manage the fearfulness in HFA and AS kids, parents are encouraged to employ some of the following techniques:
1. Use social stories, games and puppets to help your youngster learn to relax and manage stress and fear.
2. Stay composed when your youngster becomes stressed-out about a situation or event.
3. Set a calm example. Parents can set the tone for how stress is handled in the home.
4. Recognize and praise small accomplishments in facing fears.
5. Prevent fear-producing events by “external control” (i.e., structuring the environment to make it predictable, consistent, and safe).
6. Plan for transitions (e.g., allow extra time in the morning if getting to school is difficult).
7. Never try to convince your youngster that his fear is unjustified. He’ll just become more convinced otherwise as he tries to prove to you that the fear is real. Instead, help him think about things realistically (e.g., if he is worried that he is going to fail an upcoming test at school, say something like, “If you fail this test, then you can just study harder for the next one …we all fail from time-to-time …that’s how we learn”).
8. Modify expectations during stressful periods.
9. Limit your youngster's exposure to distressing news or stories.
10. Increasing exposure to the fearful event is an effective strategy for overcoming fear. For example, if your youngster is afraid of getting on a plane to travel to a vacation destination, start out by showing him pictures of planes, then visit the airport, then go talk to another child who has flown before and get that child’s feedback, then finally, have your child board the plane. The important idea here is to take small steps and gradually expose your youngster to the feared situation, task, or object
11. Help your youngster identify the source of the fearfulness.
12. Help your child to find a distraction when he is in a state of fear. Getting involved with some fun activity is key in keeping fear at bay.
13. Gradually shift “fear-control” to your HFA or AS youngster by preparing her for fear-producing situations through discussing antecedents (i.e., whatever it is that precedes the fear-response), settings, triggers, and actions to take.
14. Don’t model “excessive caution.” For example, overly-cautious moms and dads are likely to say things like, “Be careful on the slide because you might fall and hurt yourself” without realizing that they are increasing their youngster’s apprehension. It’s better to say confidently, “I’m sure you’ll have fun on the slide. I’m right over here if you need me.”
15. Don’t dismiss your child’s feelings. Telling him “not to worry about _____” (fill in the blank) will only make him feel like he’s doing something wrong by feeling uneasy. Let him know that it’s okay to feel anxious about something, and encourage him to share his thoughts and emotions.
16. Don’t allow your youngster to avoid everything that causes her to be afraid. Fearfulness tends to peak at the beginning of a new or scary situation, then eases off. If you can help your youngster get through the initial stage of high stress, she’s likely to have a positive experience, which will make it easier the next time.
17. Develop, practice, and rehearse new behaviors prior to exposure to the fear-producing situation.
18. Create a “things that I’m afraid of” jar, and encourage your youngster to write the fear-inducing thought on a piece of paper and put it in the jar. Then, suggest to her that the fear is now in the jar and no longer needs to be in her head. In this way, you are helping your youngster put the anxiety outside of herself.
19. Create a “fearfulness hierarchy,” and put the events in order from easy to hard (write this down for the child to view). For example, at the top of the list may be “fear of going to gym class,” and at the bottom of the list may be “fear of eating _____ (a particular food item).”
20. Balance any changes by trying to maintain as much of the child’s regular routine as possible (e.g., stick to a regular bedtime and mealtimes).
21. Lastly, practicing breathing exercises can help your HFA or AS child decrease the physical symptoms of fearfulness and stay calm. Coach your child on the following techniques:
- Sit comfortably with the back straight and the shoulders relaxed. Put one hand on the chest and the other on the stomach.
- Inhale slowly and deeply through the nose for 4 seconds. The hand on the stomach should rise, while the hand on the chest should move very little.
- Hold the breath for 2 seconds.
- Exhale slowly through the mouth for 6 seconds, pushing out as much air as possible. The hand on the stomach should move in when exhaling, but the other hand should move very little.
- Continue to breathe in through the nose and out through the mouth. Focus on keeping a slow and steady breathing pattern of 4-in, 2-hold, and 6-out.
Other techniques to reduce fearfulness include:
- using positive thoughts/self-talk
- the use of photographs, postcards or pictures of a pleasant or familiar scene (these need to be small enough to be carried around and should be laminated in order to protect them)
- physical activities (e.g., using a swing or trampoline, going for a long walk with the dog, doing physical chores around the house, etc.)
Whatever method is chosen to reduce fearfulness, it is vital to identify the cause. This should be done by careful monitoring of the antecedents to an increase in fear and the source of the fear tackled. For example, many children with HFA and AS have difficulty with noisy, crowded environments. Thus, the newly arrived middle school student who becomes agitated or aggressive in the hallway during passing periods may need an accommodation of leaving class a minute or two early to avoid the congestion and over-stimulation that provokes fearfulness and subsequent dysfunctional coping mechanisms.
Key issues to address when discussing this strategy are:
- What can be done to eliminate the problem (i.e., the antecedent condition)?
- What can be done to modify the fear-producing situation if it can’t be eliminated entirely?
- Will the antecedent strategy need to be permanent, or is it a temporary "fix" which allows the child to increase skills needed to manage the fearfulness in the future?
The importance of using antecedent strategies should not be underestimated. Kids with HFA and AS often have to manage a great amount of personal stress. Striking a balance of short and long term accommodations through manipulating antecedents to fearfulness and problem behavior is often crucial in setting the stage for later skill development.
In treating excessive fear in your child, observe his or her behavior and ask yourself the following questions:
- How does fear interfere with my youngster’s life?
- How frequently does my youngster exhibit symptoms of fearfulness?
- How long do the symptoms of fearfulness last?
- How long have these problems been of concern?
- Is it hard to manage?
- On a scale of 1 to 10, how severe is the problem?
- What effect does fear have on my youngster and those around him or her?
- What factors are contributing to the fearfulness?
- When did I begin to notice some of the signs of fearfulness in my child?
By getting answers to these questions – and by utilizing the ideas listed above – parents should be able to greatly reduce the level of fearfulness that their HFA or AS child experiences.
Teaching Social Skills and Emotion Management
We asked the following question to our members: What is the greatest source of stress and/or anxiety for your child on the autism spectrum?
Here are a few of their answers:
• Social interaction
• Schoolwork. Routines. Hygiene.
• Schedule changes-- unexpected events or demands
• Homework and large crowds/groups.
• We finally got the school to stop assigning homework
• I'm on a mission. They are too delayed socially and need to work on Social homework.
• Definitely school.
• School. Boredom there, suppressing their interests, unstructured social interactions, staff that are not trained to work with differences....
• Change in routine, homework, and sensory issues (food is hard for my son... the smells, textures, mixed anything).
• Anything that is unknown. This could be school related, social situations, change in regular routine, even vacations or visit to a new, unknown place.
• Other people not doing things "right".
• The unknown. Education concepts, people, places, events etc. Sensory issues with food, showers, hair brushing, being touched. Separation anxiety from his primary caregivers & pet. Fear of the future by concern for what is going to happen. Catastrophizing.
• This sounds exactly like my son. He worries about his future and how he will have enough money to take care of himself if anything terrible happens to me or his dad 😢 he's only 10 and it's heartbreaking that these kinds of worries enter the head of a child
• our daughter is 10 as well and she worries if she will have to leave her home, what will happen to her stuff and who will take care of her if something happens to us.
• Switching the wifi off...
• At the minute it's everything to do with school
• Kids acting loud, crazy, and/or unpredictably.
• Large group of people.
• My son stresses out about school, and doing assignments that involve presenting in front of a group. Also, he does not like to go to school most days because he gets bored.
• My grandson (age 8) has had anxiety attacks over the following: 1) World War III, 2) A meteor hitting the Earth, and 3) The sun burning out. The every-day stuff doesn't bother him at all.
• school and academic studies that aren't concrete
• so many from which to choose! Loud chaotic classrooms.(confined space, no escape)
• Crowds. But with me and her trainee therapy dog outside she went into a packed cafe for a menu today.
• School, doctors or any kind of medicine
• Homework and loneliness.
• Social interaction or people dressed up in costumes (like mascots)
• People being nasty in youtube social media, she gets soooooo upset that people say such terrible things
• School and leaving the house
• That people are talking about her and laughing at her. Brushing her teeth, having to tackle cleaning her room (but then she is a 12 year old girl :P ) Lunch time at school. Not being invited to parties :(
• something happening to his father, thunder, possibility of war, big crowds of people.
• Going from one activity/place to another or letting other people touch his stuff.
• The unknown. In all forms, no way for them to have control can send them spiraling into panic, rage, depression.
• His popularity factor. He is 9.
• School and leaving the house