Yesterday, April 2, 2013, was the UN Autism Awareness Day (April is Autism Awareness month.) I’m really glad we get a month, because autism is tricky, especially when no two people with autism are the same. I’m now eleven years into it with our son, and I’m still learning. So I completely respect that autism can be mystifying and intimidating for folks who aren’t immersed in it.
With the March 2013 CDC report of 1:50 children diagnosed with an autism spectrum disorder, it’s highly probable you already know someone with autism, or that you will. The San Francisco Bay Area has 1.5 million people affected by disability. If you live in Santa Clara County/Silicon Valley — a national hot spot for autism related disorders and ADHD/ADD– it’s a statistical certainty you and your children will be interacting with special needs children at schools, churches and in the community. As such, local school districts have been progressive and intentional about inclusion. You should be aware, and prepared.
Awareness Is a Start
Awareness is good. But what really helps is… help. You can be aware of autism, mental illness or cancer. But if a loved one has autism, mental illness or cancer, they don’t need you to just be aware of it: What they need is help with it. Awareness, understanding, compassion, even acceptance are all great and necessary. But what really makes a difference, is making a difference.
“I Just Don’t Know What To Say!”
I can appreciate that. If you’re a decent, thoughtful and considerate person, you don’t want to misstep or offend, especially to a person who’s already struggling. But please consider:
- It’s not about you. It’s about them. For a family dealing with autism, their stress is more acute than your stress over how to deal with them. Besides, not doing or saying anything can often be more hurtful, because it can be perceived as neglect and interpreted that you don’t care. I think it’s even ok to say, “I just don’t know what to say. But I want to help.” The fact that you’re even reading this proves that you do care, and you do want to help. God bless you for it.
- You don’t have to know everything or have the right answers. Isn’t that a relief? Over the years, the most exquisite, practical help for my family have come through folks who didn’t know a lick about autism (aside from autism therapists for our son). They just loved our family authentically and intensively — enough to roll up their sleeves and just get down on the floor with us. Autism can be messy. I truly thank God for those dear friends and family who’ve been willing to dive into the mess with us.
If It’s Important To You, You’ll Find a Way. If Not, You’ll Find An Excuse
Few brides have previous experience in planning a wedding. Few couples have prior experience in caring for a newborn 24×7. Similarly, I had zero experience with autism when our son was diagnosed. Neither did most of our friends and family. But the key is LOVE: having a heart. When you care enough about something or someone: beg, borrow or steal, you’ll find a way to express it. Just like with anything else, if it’s important enough to you, you’ll find a way. If not, you’ll find an excuse. Besides, you can always tell a person’s heart, regardless of what they say or do (or not.)
So whether the issue is autism or something else, you can start with a baseline knowledge of zero, and still come out a champ if you just:
- Show Up
Throughout the month of April, I’ll share practical, doable ways to support a family affected by autism: “Small” gestures and actions that have blessed us, and have been impactful, meaningful… and unforgettable.
- Parents, what have friends and/or family members done to support you, that have been helpful? Conversely, what has NOT been helpful?
I don’t have a child on the spectrum but I do have twins with special needs, so the experience is similar. What is not helpful, telling me the next greatest break through that will just fix everything, trying to sell me vitamines or whatever product you are just sure is the “cure”, phrases like “I know how you feel” you don’t even if our kids are struggling with the same issues, unless you are inside my head you have no idea how my child’s struggles are affecting my feelings. Phrases like “at least they don’t have (insert whatever condition you think is worse)…Yes my kids are healthy and for that I am greatful. But somedays being the parent of a special needs child is the hardest thing ever. And I need to have the freedom to feel what I feel and to express those feelings. Helpful, listening, giving hugs, finding ways to include my children (my typical child is sometimes excluded because of her sisters), and talking to me about something other than my kids. I do still have a mind and an identity. As much as I love my kids I need a break sometimes. So talk to Kim, not Paul’s wife or the twins mom, talk to me.
Kim, absolutely AWESOME RESPONSE. Thank you so much for sharing. Exactly!!!