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Puberty can be a chaotic and confusing time, both for parents of children with autism spectrum disorders (ASD) and for the children. Even the most knowledgeable, motivated and devoted parents can find this period brings feelings of doubt and a sense of being ill-equipped for an entirely new set of challenges. This may be in stark contrast to the relatively smooth functioning that can be achieved during the elementary school years with good behavioral, educational and communication programs. New behaviors can surface—such as emotional outbursts, aggression, property destruction, self-injury, and increased anxiety. Even the most stable family can feel challenged.
For typically developing adolescents, puberty involves hormonal surges that can lead to fluctuations in emotional regulation, changes in relationships with parents and peers, and increased social and body awareness. All the same forces come into play with adolescents who have ASD, but these children have far fewer natural coping mechanisms with which to handle unfamiliar physiologic changes and confusing interpersonal dynamics. Despite the challenges, there are several sources of information and support for parents to prepare for this “transition” in their children, and there are important areas to consider during puberty for individuals with ASD.
The ability to communicate effectively is important for an individual with ASD, especially for those who are nonverbal or who have little functional language. Behaviors of many adolescents and young adults improve once they are able to communicate their needs, have a method to prepare for a new experience and are able to understand what is asked of them. Augmentative and Alternative Communication (AAC) approaches that use picture schedules and electronic devices (with or without speech output) are increasingly available and supporting technology is becoming more creative and affordable.
Educators who are familiar with ASD often recognize puberty as another “window of opportunity” for social learning. Many children with ASD develop enhanced social awareness and desire to communicate with the onset of puberty. It is important to have a workable method with which the child can communicate, as well as opportunities to learn appropriate and meaningful ways to communicate (pragmatics) in inclusion situations.
For adolescents who have functional language, a type of psychotherapy called Cognitive-Behavioral Therapy, or CBT can be a useful intervention. CBT can be used to teach coping strategies such as relaxation, particularly with individuals who have anxiety.
Increased frustration and aggression can occur under the influence of active hormones during the teen years, and new rituals and obsessions can result from too much unstructured time after school, during community outings and on weekends. What is tolerated at home from a young child is usually not acceptable from a teenager in public. Intensive and consistent behavioral programs are important for home and community during the teen years, and can help to generalize skills.
Medication assessments can be useful, done by a professional with expertise in ASD and co-occurring disorders and may be suggested for teens exhibiting mood swings, anxiety, aggression, property destruction or self-injury. Closely monitored medication interventions can often lead to improvement. This type of treatment may be a temporary measure that can be discontinued in the post-pubertal years.
Sleep problems can pose another challenge during puberty. As a result of more social awareness, anxiety can increase, and with it, the inability to settle to sleep or the occurrence of nighttime awakenings. Good sleep habits are important, since (like typically developing teens) those with ASD may stay awake later at night, reducing the length and quality of their sleep. This influences their tolerance levels and ability to cope. Intensive home behavioral programs can be important.
Puberty is also a time to concentrate on life skills for independent living, such as hygiene, dressing and safety awareness. This can be done through home and school programs and should include education about sexuality. Parents can attend trainings and conferences. There are many new books and other resources on the subject, and teens at all functioning levels need to know what is a “good touch” or “bad touch.”
Planning for adulthood is an important concern as teens with ASD progress through puberty. What are their interests and strengths? How can these preferences be directed to sustainable vocations? What services are available for vocational assessments? Most state education departments begin this process at age 16, but some start as early as age 14. Transition plans should include a vision and goals for post secondary and vocational education, employment, independent living and community participation.
Legal and Financial Planning
Puberty is a critical time to start creating long term plans pertaining to legal and financial planning for children with ASD. Some questions that parents may want to address include:
Who will obtain guardianship?
Should guardianship be full or limited guardianship?
What plans are in place for the child’s health, safety and quality of life after the parents are gone?
When presented with new negative behaviors in teens with ASD, it is important to first look for underlying medical causes. Pain, as well as frustration can lead to self-injury and aggression. The 12-year-old who “starts” mouthing objects, or hits/bangs his or her head may have 12-year molars erupting, an underlying GI problem or a sinus infection. Awareness can avoid frustrating, anxiety-provoking and emergency room visits.
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