April is Autism Awareness Month. Typically, this is a time when I write about autism in general or therapies and interventions for an autistic person, but this year I’d like to shift the focus to caregivers of individuals with autism. Parenting is not easy, and parenting a child with autism has unique challenges. A child with autism may have intense meltdowns, in private or in public, that could include self-injurious behaviors or unintentional harm to others. Self-stimming behaviors may appear to interfere with daily activities. Difficulty with perspective taking and in social interactions may lead to troubled friendships or interactions with others.
But in addition to that, there are the unintentional “hits” a parent of a child with autism takes. When other parents are talking about their child meeting developmental milestones, a parent of a child with autism might be worried about when their child will meet a milestone. Perhaps a parent is feeling judged by others. Or maybe the child with autism is struggling to make connections and friends, leading to feelings of exclusion for both the child and the adult.
I have the opportunity to speak with parents, often at the beginning of their journey with their child, and I try to get a few key messages across to them. First and foremost, there is nothing that a parent has or hasn’t done that has caused this. While most parents logically know this, so many still feel responsible in some way for their child’s struggles. We do not definitively know the cause of autism, but we know for sure it is not due to parenting styles.
Second, work to get your child the support they need to thrive. This differs for every child and likely includes different therapies or educational settings. It is okay to let go of your expectations in order to find the right interventions for your child. Those expectations may not be gone forever; they are just on hold for now and as time goes on, they may have to be adjusted, or they may not. Time will tell and finding a professional team that you have rapport with and trust, and a team that sees you as a partner on the child’s therapy team, is key in your child’s progress.
Third, there are many evidenced-based interventions for autism (ABA, DIR/Floortime, Social Thinking, speech, occupational, music or play therapies), but there are also many interventions that have questionable or limited evidence. This doesn’t mean the intervention is not worthy, but it does require the parent be an informed consumer when it comes to choosing their child’s interventions and teams. I often ask parents to follow their guts on this!
Lastly, find your community and build your army. This is not only support and acceptance for your child, but also for you. It may mean getting yourself some counseling to help to process the struggles, stresses and feelings you have. It may mean finding a peer group of other parents who are walking a similar path as you. It may mean outreach and advocacy for all individuals with autism to help society accept these incredible individuals for who they are. Whatever it is that builds your community is important to foster.
At The Carruth Center, we have the opportunity to meet so many of you along this journey. We are privileged to be part of your child’s army and will walk with you through this as long as you need us to. We see you out there and want to acknowledge all that you are doing for your child!