Autism spectrum disorder (ASD) affects millions of children and adults worldwide. Too often, it’s viewed as an affliction, a disease—something to be minimized, even stigmatized. Despite decades of scientific research that has radically advanced our understanding of ASD, too many of us remain stuck in this unhelpful mindset.
That’s unfortunate not just for parents raising children with autism and caregivers doing their best to support clients with autism. It’s problematic for people who live with ASD every day.
If you’ve been diagnosed with ASD, you already know that living your best life with autism involves sacrifice and setbacks. You don’t need someone to tell you ad nauseum.
If you’re a caregiver or parent to a loved one with autism, you likewise know what’s involved. Now more than ever before, you can rely on a phalanx of autism awareness and research organizations for unbiased information about your loved one’s condition and the best practices that you can leverage to help them thrive.
That doesn’t mean you can’t benefit from a daily affirmation. If your life is directly touched by ASD, for whatever reason, follow these simple steps to a more fulfilling life—if you’re not doing so already.
Know Who Your Friends Are
In her moving Huffington Post piece about raising a child with autism, Hannah Brown writes: “Once your child is diagnosed with autism, you find out who your real friends are, and who the staunchest allies in your family are.”
This is tough to read, and even tougher to acknowledge. But it’s also critical for anyone who wishes to maintain an even keel while contending with ASD or giving care to a loved one on the spectrum. Not that you ever needed negative influences in your life, but now is certainly not the time to be weighed down by people who only pretend to care. Embrace those who unquestioningly stick by your side through thick and thin, and cut everyone else loose.
Spread Your Love Around
The world revolves around no man or woman. This is doubly true for individuals on the autism spectrum and the family members they depend on for support.
If you’re responsible for the care of someone with ASD, you must do your utmost to avoid tunnel vision. There are others who depend on you for comfort and care, even if they don’t require or demand as much of your attention.
If you’re on the autism spectrum yourself, you must do your utmost to see the connections between yourself and others—and to embrace your very special place in the wider world. The world is too big and rich for the needs of one person to monopolize the attention of any other.
Find Strength in Numbers
When you start to feel as if you’re all alone, find strength in numbers. Look to ASD support groups for solace and encouragement, especially in the early days following your or your loved one’s diagnosis. The more experienced members of these groups have no doubt seen and done many of the things you’re seeing and doing right now. They’ll help you navigate what can seem like a confusing and cacophonous environment.
Tell Your Story
Your story is unique. Your story is interesting. Your story matters.
So tell it. You don’t have to shout your frustrations from the rooftops or pester your friends with never-ending reflections on your circumstances. But you should certainly share your story with trusted confidantes capable of offering guidance and succor, even if they don’t quite know what your day-to-day is like. Try it; you’ll feel better in no time.
Children and adults with ASD may have different interpersonal boundaries than those who don’t live on the spectrum. That’s OK, even expected. It’s up to caregivers, loved ones, peers and colleagues to respect these boundaries. There’s nothing wrong with marching to the beat of your own drum; without the audience’s support, though, the music rarely sounds as sweet.
Find the Right Partners & Providers
Brown writes, “I’ve found that the therapist is more important than the type of therapy. It is imperative that the therapist establish a close, warm relationship with the child. Sometimes the people who work best with Danny are not particularly at ease with me, but they shine with him, and that’s what is important.”
That statement isn’t without controversy; many would argue that the type of therapy is quite important. But the underlying point is backed up by years of repeated experience: Children and adults with ASD flourish in the right environment.
Older children and adults with ASD can and should seek independence—when they’re ready to do so and only as they’re able. Some individuals who live on the spectrum may never gain full independence; others may thrive in transitional settings that provide for mostly autonomous activity. The important point for parents and caregivers to take home is that people with ASD need to be involved in the choice to pursue independence or not.
Be Positive and Supportive
“[K]ids with autism are constantly being told what they’re doing is wrong,” writes Brown. “Make corrections as constructively and positively as you can.”
Translation: Say yes at least as often as you say no. Positive reinforcement always trumps negative reinforcement.
See the Dignity and Value in Every Life
We too often pay lip service to the idea that every life has value without stopping to think about exactly what that concept means. When every life has value, every life must be valued—even (and perhaps especially) when the wider world seems to shrug its shoulders.
If you’re responsible for the care of someone living with ASD, you’re the living embodiment of the idea that every life has value. Never forget that this is so. If you yourself live with ASD, always remember that you’re just as important, just as special, as those who don’t know what it’s like to walk in your shoes. No matter what anyone tells you, you have the right to shine.
Are you living your best life on the autism spectrum? Are your loved ones living life to fullest?