Adolescence is full of challenges for any child. The change is fast, everywhere, and hard to keep up with: The body changes in response to increasing levels of sex hormones; the thinking process changes as the child is able to think more broadly and in an abstract way; the social life changes as new people and peers come into scope. Yet the child needs to deal with every single one of these changes, all at the same time! With their willingness to help, that’s where the parents come in, who have "been there", with the life experience, maturity and resources. So, how can parents help? Recognizing the complex and sometimes conflicting needs of an adolescent would be a good point to start.
Adolescents yearn to develop a unique and independent identity, separate from their parents’. Yes, they love their parents, but they don’t simply want to follow their foot steps. They challenge their parents in any way they can. They disobey their rules; criticize their "old fashioned" values; they discard their suggestions. Experienced parents know that sometimes they have to be very "political" approaching their adolescent children, if they are going to get their point across. On the other hand, adolescents give a lot of credit to their peers. They yearn to belong to a peer group which would define and support their identity. They may attempt to do things very much out of character just to gain the approval and acceptance of their peers. They tend to hide their weaknesses and exaggerate their strengths. Of course, what adolescents consider as "weakness" or "strength" may sometimes shock their parents.
Youngsters with autism bring their special flavor to the adolescence, essentially determined by the levels of three ingredients: interest, avoidance and insight.
Level of interest: Since all forms of autism has an impact on social development by definition, most adolescents with moderate to severe autism will show little or no interest in others. They may seem to be totally unaware of their peers’ presence or they may appear indifferent when peers try to interact. As autism gets less severe, the level of interest in peers usually increases. For these youngsters, the quality of social interactions mostly depends on the levels of avoidance and insight.
Level of avoidance: In the social development of adolescents who show some interest in peer interactions, social anxiety and resultant avoidance play an important role. Some youngsters get very nervous just with the thought of approaching others and may choose to avoid it at all costs. Their avoidance may appear as if they are not interested in others. It is important to differentiate this since anxiety can be treated much more easily than genuine lack of interest.
Anxiety A Fifteen year-old adolescent with Asperger’s Disorder was brought by his mother to seek help with his high level of social anxiety. He was refusing to go to school, where he lately had been labeled as "tardy". Their home was in walking distance of school and he would leave home late in the morning to avoid his peers riding or walking to school. He would not go to the school cafeteria to avoid waiting in line. He would avoid classes in which students had to study in groups. Most of his anxiety could be eliminated over a few weeks by the trial of an anti-anxiety medication which he tolerated well and he was able to function better in school.
Tip:
Most frequently, interaction with peers will create more anxiety than interaction with younger or older people: Younger children are safer to approach since they would be more likely to accept the dominance of an adolescent with autism and less likely to be critical. Older adolescents and adults are safer because they will be more likely to understand and tolerate. Parents therefore commonly observe that their children with autism prefer to interact with younger children or adults over their peers.
For adolescents with autism who show interest in peers and do not avoid contact, the quality of social interactions will depend on the level of insight.
Level of insight: Yet some adolescents with autism will not avoid interacting with others; younger, older or similar age. Rather, they are eager to communicate, though, often in a clumsy, in-your-face way. The level of their insight into their social disability will then become the determining factor of their social success. If they are unaware of their shortcomings in gauging the social atmosphere and reading social cues, they may inadvertently come across as rude, insulting or boring. They may miss subtle criticism, sarcasm or tease. As they develop better insight, they become more motivated to learn which had not come naturally and intuitively. They also have a better chance to work through a sense of loss, common to all disabilities.
Coping with the Loss of Normalcy
Regardless of the individual developmental route, most children with autism start realizing that they are not quite like others at some point during their adolescence. A few factors seem to facilitate the process:
A higher level of interest in others
A higher level insight into difficulties in social interaction
A higher IQ
Once the adolescent realizes that he has significant difficulties in conducting social relationships compared to his peers, he needs deal with this loss, just like dealing with another loss. Understanding the thoughts, feelings and behavior of an adolescent with autism is the necessary first step in helping him out and being there for him. Considering this coping process in a few stages may make the caregivers’ job easier:
Anger
Denial
Depression
Acceptance
Adaptation
Most commonly, the adolescent will not go through these stages one after another, but rather display a larger or smaller aspect of each at any given time. This is a painful process for not only the adolescent but for others who care for him as well. Parents may find themselves compelled to forget the whole thing and act as if nothing is happening. Well, we are all tempted to avoid pain and denial is an excellent pain killer. The good news is, as much as the denial is contagious, the courage and strength, too, and seeing his parents dealing with the pain calmly and matter-of-factly will encourage the adolescent talk about his anger and frustration. This will in turn help the adolescent get closer to the acceptance and adaptation:
- You don’t have to bring it up, but when he does, give them a good listening ear and be patient;
- Don’t try to change the subject, unless your child does so;
- Don’t try to minimize his difficulties, but also don’t let him exaggerate, providing gentle reality testing;
- Offer the option of counseling, since sometimes it is easier to talk to a stranger. However, try not to push the idea directly even if you feel that your child clearly needs professional help;
Tip:
Sometimes you have to be very political trying to sell an idea to a teenager. The mere fact that the idea is coming from his parents may make him refuse it. Let the idea come from a family friend, teacher, or a neighbor he trusts. Give him time to think about it. He may come back to the suggestion when he feels he is ready.
Consider trying an antidepressant medication if he doesn’t seem to be able to move on. Look for the following common symptoms of clinical depression. If five or more of these are present week after week, put your foot down:
Appearing sad for most of the time;
Becoming irritable and angry with the drop of a hat so that family members start walking on egg shells;
Not being able to fall asleep, waking up in the middle of the night and having difficulty falling back to sleep;
Complaining that he is tired all the time and wanting to take naps during the day;
Eating less or more than usual;
Putting himself down, saying he is stupid;
Making remarks like he hates life, he hates you, nobody loves him, or wishing he was dead;
Losing interest in activities he usually enjoys;
Withdrawing himself from the rest of the family, refusing to participate in group activities;
Blaming himself unfairly for anything that goes wrong.
Warning:
Clinical depression is a serious condition which carries a significant risk for self-harming behavior. If you suspect that he may have clinical depression, set up an appointment with a child and adolescent psychiatrist as soon as possible and do not put this as an option. He does not have a veto power on this decision.
Anger, Denial and Depression A young teenager was referred from a clinical study of depression in children and adolescents to maintain his antidepressant medication. My clinical evaluation revealed Asperger’s Disorder in addition to his ongoing depression. The diagnosis of Asperger’s Disorder made very much sense to the parents who had wondered for years what was wrong with their son who, among other things, had difficulty relating to his peers, despite being very bright and able to communicate with adults in a quite sophisticated manner. Since he had responded only partially to the study medication we tried him on another antidepressant. Even though his mother thought that he was happier, more motivated and energetic, he was not able to recognize any improvement. During his most recent follow-up he was very angry with me and announced that he didn’t think that he had Asperger’s, he wanted to stop his medication and wished everybody leaved him alone. My suggestion for counseling was discarded, too. His mother and I firmly insisted that he continues to take his medication. We didn’t push the diagnosis or the counseling idea. I recommended his mother that if he does not feel like coming next time, she comes by herself so that we can strategize how to continue his treatment.
Most adolescents with autism excel in one or two subjects. They tend to accumulate a lot of information on the subject and love to talk about it over and over. Unfortunately, after one point family members end up losing interest and start getting bored to death. Rather than avoiding the subject, try finding out new ways to engage the youngster in the subject. Structure the topic in a different way. Find a way to challenge him. Be creative and let sky be the limit! Your interest will make your child feel better about himself, realizing his mastery on the subject will boost his self-esteem.
Many adolescents with autism resolve their sense of loss by turning the issue upside down: Rather than clinging to depression and despair, they find their identity in autism. They get in touch with other youth with autism. They take on themselves educating their peers about autism at school. They set up web sites, chat rooms and even write books about it. They gather support for a better understanding and treatment of autism. Encouraging your child, providing him means to this end and removing the obstacles in front of him may turn out to be the best antidepressant treatment ever. All this may seem remote and you may not know where to start. Consider the following tips:
Set a good example. Get in touch with the organizations like the Autism Society of America or Asperger Syndrome Coalition of the U.S. and contact their local chapters;
Attend support groups for parents and make acquaintances;
Leave brochures, leaflets and other information about teen groups around to catch the attention of your teenager;
Invite your new acquaintances to your house and encourage them to bring their children;
If it doesn’t work right away, don’t get discouraged and keep trying, always letting your child make the first move in showing interest.
Acknowledging Sexuality
In contrast with their rather slow social development and maturation, adolescents with autism develop physiologically and sexually at the same pace as their peers. As their sons and daughters with autism grow older and display sexualized behavior, many patents find themselves worrying that
- their child’s behavior will be misunderstood;
- their child will be taken advantage of;
- their daughter will get pregnant or their son will impregnate someone else’s daughter;
- their child will not have the opportunity of enjoying sexual relationships; or
- their child will contract sexually transmitted diseases.
While some parents get concerned that their children show no interest in sexual matters, others have to deal with behaviors like:
- touching private parts of own in public;
- stripping in public;
- masturbating in public;
- touching others inappropriately;
- staring at others inappropriately; and
- talking about inappropriate subjects.
Talking about sex, especially the sexuality of our children makes us feel uncomfortable. Even though we all wish that our children have safe and fulfilling sexual lives, we hope the issue just gets resolved by itself, or at least somebody else takes the responsibility of resolving it. We may find ourselves lost trying to imagine our children, who have significant problems carrying a simple conversation, building relationships that may lead to healthy sexuality. We may find it comforting to believe that our children don’t have sexual needs and feelings, and avoid bringing up the subject in any shape or form. We may feel uneasy about sex education, believing that ignorance will prevent sexual activity.
How can we make sure that our children with autism express sexuality in socially acceptable and legally permissible ways, avoiding harm to themselves and others?
The key is making your mind that you will address the issue, rather than avoid it. Set up a time with your child to talk about sexuality, rather than making a few comments about it when the issue is hot, right after an incident, when everybody feels quite emotional about what just has happened. Ask direct questions about what your child knows about sex. Ask about his desires and worries. Tell him what you think should be his first step. After inquiring and talking about the normal behavior, set realistic but firm limits about inappropriate behavior. Seeing your level of comfort around the issue, your child will get the message that it is OK to have sexual feelings and it is OK to talk about them. Getting this message alone will bring the tension around sexuality a few notches down. If this approach fails, please do not be shy about asking for help. Other parents with adolescent children would be a good starting point. Your child’s school may also be able to help. Finally, you may inquire about professional help which should provide:
- an individualized sexuality assessment and
- sex education based on individual needs, while
- utilizing behavioral modification techniques to discourage inappropriate sexual behavior and promote appropriate sexual behavior.
