Parents of autistic children are entering a new phase along the continuum as the transition to adulthood is omnipresent. We have experienced the highs and lows of observing autism play out during the developmental years, only to be surpassed by the challenges of adolescence. Now comes adulthood and the myriad questions and uncertainties that accompany this stage of life. Maintaining the delicate balancing act of being supportive, yet providing enough space for a young adult to grow and thrive is tough. Things can really get complicated when matters of finances, living independently, and romantic feelings enter the picture. Despite the countless changes we go through as parents, our role as advocates remains active – growing stronger in some cases as the years go by.
Being the parent of an autistic adult has all the universal parameters as parenting a typical child. However, upon the arrival of adulthood, there is a stark difference in one area that marks a distinct contrast. Judgment and sound decision making, or lack thereof, makes adulthood such an unpredictable venture for adults on the spectrum. Subsequently, parents must advocate for appropriate housing options, educational accommodations, health care interventions, and money management issues. At the risk of appearing overprotective, parents of adults on the spectrum must keep their battle axes sharp for potential situations involving exploitation or harm. Trusting the wrong people in precarious situations is a constant worry for us as parents because our adult children lack the social skills to discern evil intent. There was a time early in the process of child rearing when confronting educators or medical personnel regarding a certain procedure seemed incredibly daunting. However, advocating for adults is an entirely different ball game as matters often involve money, emotions – or frequently both.
After maintaining the high wire act of parenting an autistic adult, we actually become very adept at being assertive when necessary and taking a more reticent approach when called for. At some point there is a moment of clarity when parents realize advocacy will continue, in some way or form, for the rest of your life. This may even involve a touch of humor as normal mild-mannered moms and dads can become quite animated when standing up for their autistic son or daughter. The parental instinct remains strong regardless of age and the desire to protect knows no boundaries; for children ages 14 or 47. There are benefits in serving as an advocate for both your own child, or in a more formal capacity. First, the need to stay informed is an absolute must as it requires knowledge of the latest trends and changes taking place in our fast paced society. In addition, advocacy provides a platform upon which parents and adult children can build strong lasting bonds. In too many circumstances, relationships between adult children and parents are strained, with common ground being virtually non-existent. Fighting for the same causes gives many families a rallying point to share ideas, passions, and perspectives.
Serving in an advocacy role doesn’t erase the hurt we feel for our autistic adult children, but it strengthens our resolve to continue the fight. Moreover, as we become more seasoned, there is a state of calmness that comes with acceptance of life as it is. We can’t dictate all the terms of our lives, but we have the opportunity to share our experiences with others. Experiencing autism as adults is indeed a different journey for both parents and adults. At the end of the day, we are glad we have our children in our lives and appreciate the meaning they provide even more. For parents with adults on the spectrum, the feelings are intensified as we learn to let go, but not allow them to stray. In the meantime, keep those battle axes sharp.