“I knew there was something not quite right with my little boy very early on. But, as a mother at age 28 – so ecstatic to have my first child – I pushed my concern aside, withdrawing into denial. As a 3rd grade teacher, I felt confident that I had this parenting job down pat, and I didn't want unnecessary anxiety to spoil it. However, even though my son is the most important part of my life, my enthusiasm and optimism for motherhood has been replaced by fatigue and frustration. He is now 6 years old and about to start his 1st year of elementary school. He has become quit a handful. Meltdowns, aggressiveness, and lack of responsiveness to my attempts at discipline are making me feel like a bad mom. I guess I’m in the early stages of experiencing what it's like as the parent of a child with an autism spectrum disorder (high functioning). I know that this is just the beginning of our journey, but I have to wonder whether my son and I will ever form a close bond and whether he will ever be capable of making a friend. My question is, what can I do to help my little guy cope with all the challenges that he is destined to face throughout childhood?”
Parenting children with High-Functioning Autism (HFA) and Asperger’s (AS) obviously has its ups and downs. There are times when parents just want to crawl back into bed and put the covers up over their head (and occasionally they have to give in to that). But, they have to get right back up and push forward. Moms and dads should always keep their eye on the prize, which is their “special needs” child.
Raising your HFA son will indeed be a long journey, but you have many options and places to turn for help. Early intervention is paramount – and he’s only 6, so you have a lot of time to apply appropriate interventions. But, you have to get going right now, because time is of the essence. Get focused on what your mission is. Here’s how:
1. First of all, you are not alone in how you are feeling. Many moms and dads of “special needs” kids talk about feeling somewhat stressed, frustrated – and even isolated. One mother of an Asperger’s child told me that when her son was diagnosed, some family members stopped asking about him, and he was left out of several birthday parties and other family gatherings.
2. Help other family members – especially siblings – cope by educating them about HFA and your son’s specific needs. Training family members about the disorder and how to effectively manage the symptoms has been shown to reduce family stress and improve the functioning of the child on the autism spectrum.
3. Your son may enjoy going out to eat, going to the local mall, attending a birthday party, and so on. But, it may become quite overwhelming for him to the point where he starts reacting to these unfamiliar surroundings and faces. He may become agitated simply because “the unfamiliar” gets to him, especially if there are a lot of foreign noises and smells. Thus, if the environment seems too “sensory-unfriendly” for your son, you may simply want to “bail out” and return home for a time-out.
4. Work closely with your son’s school. His curriculum will require a major focus on social skills. Deciding what your son needs to learn in school will depend on his unique features, level of intelligence, family setting, and need to function in the community. You and your son’s teachers will need to decide on the critical skills he needs to develop (by developing an Individualized Education Program), and then work together to teach him to use these skills in real-life settings.
5. When your son moves from one activity to another (e.g., waking up, going to school, moving from “play time” to “homework time,” etc.), it’s a prime opportunity for a meltdown. Many transitions erupt into meltdowns, because kids on the spectrum typically do not like change. Therefore, give your son time to adjust when change occurs. This is easier said than done when you are in a rush. But, your son does need more time. Prepare him for transitions as often as possible (e.g., “We’re leaving to go to the store in 10 minutes, so finish your game”).
6. Children on the spectrum should receive treatment as soon after diagnosis as possible. Early intervention using social-skills training and behavior modification techniques can yield good results. Educational and behavioral treatment helps with HFA-related symptoms (e.g., impaired social interaction, communication problems, repetitive behaviors, etc.), and can boost your son’s chances of being successful at school, both socially and academically. The following techniques should be employed to improve overall function and to help your son reach his full potential:
- behavioral training and management uses positive reinforcement, self-help, and social skills training to improve behavior and communication
- occupational and physical therapy can help improve any deficits in coordination, muscle tone, and motor skills – and may also help your son to learn to process information from the senses in more manageable ways
- speech therapy can help your son improve language and social skills to communicate more effectively
7. Protect your son from poor role-models as much as possible. Young people on the spectrum often copy behaviors without understanding why the other person did them. This “copy-cat behavior” is called echopraxia (i.e., the abnormal repetition of the actions of another person). This is similar to the echolalia (i.e., the echoing of words or phrases) many autistic kids engage in. Both forms of echoing may occur immediately, or in a delayed fashion. HFA kids who are spanked are more likely to hit others. Those who observe violent behavior at home, in school or in the community, as well as in movies or cartoons, may imitate the behavior.
8. Prepare your son for changes in routine. This may require only a reminder of the next event (e.g., "First dinner, then bath"), or you may need to use pictures to help with transitions (posted on a “to do” board).
9. Many kids on the autism spectrum tend to be perfectionistic and obsessive. The inability to do something correctly after several attempts can get the “meltdown engine” revving. Observation is your best tool for identifying “low frustration-tolerance” in your son. Watch and listen, whether your son is playing a board game with friends, doing homework, or trying to tie his shoes. Keep your eyes and ears open at all times, and look for patterns and connections.
10. In order to take the best care of your son, you will need to take care of you, too! So, plan time for breaks. One mother of an HFA daughter stated that she often felt exhausted, overwhelmed – and sometimes defeated. The situation also created some difficulties in her marriage. There are no quick fixes for resolving negative emotions, but parents can take measures to protect themselves so their child’s disorder does not get in the way of their physical and emotional health. Review your calendar weekly. In the midst of the appointments your son may have with therapists or other health care professionals, write in "appointments" for yourself and your relationships. Schedule regular dates with your spouse, other kids in the family, and close friends.
11. A meltdown may be your son’s only method of communicating a need or distress. Parents should look for the warning signs that come before meltdowns, for example:
- stuttering or showing pressured speech
- sensitivity to light
- repeating words or phrases over and over
- rapid heartbeat
- rapid breathing
- perseverating on one topic
- pacing back in forth or in circles
- muscle tension
- increasing self-stimulatory behaviors
- holding the head
- flushed cheeks
- extreme resistance to disengaging from a ritual or routine
- difficulty answering questions
- cold hands
- being unusually sensitive to sound
- becoming mute
Once parents can identify the warning signs of a meltdown, they may be able to adjust the situation to prevent it from escalating.
12. Learn to live with some stereotypic behavior. Many self-stimulatory and characteristic behaviors serve a purpose. While you may want to try to prevent some of the more peculiar behaviors, it is extremely difficult to eliminate fixations entirely. Eliminated behaviors are usually replaced by another self-stimulatory or unusual behavior – and the new behavior may or may not be more tolerable than the initial behavior. Diminishing the frequency, or limiting the expression of stereotypic behavior to certain times and places, are the most reasonable goals. These are best accomplished by some disregarding, redirecting, or providing another task to focus on. Substitution or training to reduce some peculiar behaviors can help your son to appear less different in the school or community. This involves adult intervention and requires detection of equally reinforcing alternate behaviors. Any behavior to be changed will need to be replaced with a behavior that is at least as pleasurable to your son.
13. “Signaling” is a common behavior modification strategy that you can use with your HFA son. Choose one specific trigger to work on, and then come up with a phrase or hand signal that will serve as an alert to your son that the trigger is present. This allows you to make him aware of the trigger subtly in social situations. Once you have alerted him, he will have the chance to self-correct. However, if you signal your son, but he doesn’t use the response the two of you had planned on, have him take a break from whatever is going on to come speak to you in a quiet place (away from an audience). This is where you step in and help him correct his behavior. Let him know that you gave him the “cue,” but he didn’t respond the way the two of you had discussed. Remind him of what you talked about, and let him know what the consequences will be if he doesn’t use the plan the next time you signal him.
14. Learn more about dietary changes. Diet changes are based on the idea that food allergies or an insufficiency of a specific vitamin or mineral can cause symptoms of HFA and AS to worsen. One diet that many parents have found helpful is a gluten-free, casein-free (GFCF) diet.
15. Get the support of family, friends, community agencies, and others who have shared similar experiences. Having a support network involves knowing ahead of time whom you can call for different types of support (and emergencies), including:
- social support (e.g., a friend or colleague you enjoy being with and who helps you survive disappointments and shares your victories)
- practical support (e.g., a neighbor or close friend who will help you out in a pinch)
- informational support (e.g., your son's doctor, teachers, therapists, or other caregivers you can ask for advice on major decisions regarding his treatment)
- emotional support (e.g., a close friend or family member who is a confidant and whom you trust with your most personal feelings and concerns)
16. Develop a consistent structure and routine. Your son will thrive best in an environment where things are predictable. He probably has great difficulty with unexpected change and lack of structure. So, have a schedule that he follows every day, and do things in the same way. He may be able to cope with a free-time schedule, or he may need to be scheduled right down to the task of putting on clothing.
17. Your son may be hypersensitive to certain sounds, lighting conditions, skin sensations, tastes, textures, temperatures, and certain colors. Thus, beware of irritating sensations. The exact form of these hypersensitivities will vary over time, but your son may require your recognition of the problem and adjustments to limit his exposure to them.
18. Perhaps the best treatment for children with HFA and AS is “social skills training,” which is a form of behavior therapy used by therapists to help “special needs” kids who have difficulties relating to other people. The goals of this training include:
- how to act appropriately in the company of others in a variety of different situations
- how to tell when someone wants to change the topic of conversation or shift to another activity
- improving the child’s ability to function in everyday social situations
- learning how to make "small talk" in social settings
- learning to "read" the many subtle cues contained in social interactions
- teaching about the verbal - as well as nonverbal - behaviors involved in social interactions
- the importance of good eye contact during a conversation
- working on specific issues that interfere with school or daily living
19. Lastly, traditional discipline may fail to produce the desired results for your HFA son. Young people on the spectrum have difficulty appreciating the consequences of their actions. Therefore, punitive measures are apt to exacerbate the type of behavior the punishment is intended to reduce, while at the same time giving rise to distress in both you and your son.
- Disciplinary measures that are specifically tailored to children with HFA and AS can be found here: Meltdowns and Tantrums in Children with Aspergers and HFA
- Disciplinary measures that are tailored to teenagers with HFA and AS can be found here: Defiance in Aspergers and High-Functioning Autistic Teens
There's no doubt that raising a youngster with HFA or AS is the ultimate parenting challenge. But, with the necessary support and ongoing training, parents can learn how to help their child cope with the challenges ahead.
More resources for parents of children and teens with HFA and AS: