Adolescence can be trying for children and their parents. A diagnosis on the autism spectrum compounds the journey and makes it more complex, to say the least. To think about a future of surging hormones, as many parents in the autism community do, can be very scary. I would certainly encourage you to think in a more positive and developmentally oriented way. In our psychology practice, there have been a lot of questions about sexuality and children with autism and other special needs who are reaching puberty. Quickly enough, as parents, we feel a part of ourselves back in that intense and sometimes scary world of our own teens. The other part with our child in the current world who is more vulnerable if that child has special needs. Some of that fear is a worry about regression as well as the fear of sexual abuse which runs deep in the special needs community. All the more reason not to put off sexuality and sex education.
Children and teens with special needs are sexual beings just like the rest of us. Respecting each child's dignity, teaching healthy attitudes and expression, while maintaining safety is the job of all parents as well as teachers, and healthcare professional, whether a child has a disability or not. Finally, on the issue of regression, there is reason for concern, but not panic. A recent longitudinal study on Autism after Adolescence; Population-based 13- to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood” in the Journal of Autism and Developmental Disorders (June 2005) reports that 17% of the 108 examined had a clear set-back in puberty and half of these recovered from that regression. In addition this study confirmed previous research indicating that childhood IQ-level was positively correlated with a better outcome in adulthood as well as language development.
From this information, it is reasonable to conclude that a child with Asperger syndrome or High Functioning Autism can learn to cope with the trials and tribulations of puberty and adolescence. Your son will have many questions, it is important for you and his father to be tuned in to what he might be asking for. There are plenty of teachable moments in every day life. Indeed for the conscious and aware parent, more often than not, children teach us as much or more than we teach them. There is no shame in educating or reeducating ourselves to be equal to the task. I would encourage you to consult with your child’s pediatrician for referrals if more specialized help is needed from a child psychiatrist or psychologist.
From Dr. Cindy Ariel:
Your son has apparently made a lot of progress and you can probably count on more to come. Many changes happen around puberty and these changes can certainly affect behavior, including in areas where your son has already made so many strides. As with all adolescents, your son may regress in some areas even while he continues to move forward in others. Moreover, these changes can be unexpected and unpredictable.
Keep in mind, though, that as he grows and learns and changes, your son will still be who he always has been. He is someone who is able to learn and to benefit from that learning in leaps and bounds. His ability to fit in will be helpful for him; most adolescents feel and act rather awkwardly and your son may fit right in here as well.
In addition, you will be with your son day by day. You can help him by being in tune with what is going on with him and by helping him through the rough spots, just as you have probably been doing for the past 9 years. Input from his father or another trusted male role model can also be very important at this stage in the life of any boy. He needs information that matches his level of understanding. Your son needs to learn about puberty and the physical and emotional changes he may go through so that he can take some responsibility to piece together what will be happening to him to and this will help him through.
Adolescence can be a difficult time for many teens and the people who love them. Try not to let your own fears about your child’s changing hormones scare him or make him feel that the changes he is going through are scary or bad.
Robert Naseef, Ph.D., and Cindy Ariel, Ph.D., are the co-editors of "Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, and Professionals Share Their Wisdom" (2006).