What Children With Autism & Their Families Want You to Know

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April is Autism Awareness Month, but here’s the thing: We need to do more than spread awareness; we also need to help make a difference for families affected by autism. See, autism now affects 1 in 68 children and 1 in 42 boys, according to Autism Speaks.

If you aren’t the one directly affected by autism it can be hard to know what to say or do to connect with those who are. Donations to autism charities and puzzle piece ribbons are great ways to show your support; but, the most meaningful thing you can do is find a way to directly support someone with autism.

In that spirit, I’ve reached out to autistic individuals, as well as their parents and siblings, to get their take. (I’m also a mother with a daughter on the autism spectrum.) Read their words and discover a little more about them and how you can make their world easier. These families have so much to tell you about what their lives are really like.

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“I have to summon up patience every single day, all day long, forever. At group events, I often see people begin to lose patience with my adult daughter. It would be a gift to me if those same people would instead make a conscious choice to spend a few extra moments with her.” —Valerie B., autism parent and blogger at Autistic Interpretations

“When you see a child ‘acting out’ in a store, don’t judge. Smile and ask the parent if you can give them a hand with anything. It can feel like a hand reaching out to pull us from the ocean.” —Tim Tucker, autism parent

“We are never sure where we are welcome or where we belong. If you are planning a social event, please invite us. If we are not comfortable or it’s not appropriate we will let you know. And we will always feel grateful.” — Jaycee K. autism parent and blogger at Running Through Water

“Staring at a meltdown helps NOBODY.” — Faith D., autism parent and blogger at Rantings of an ADHD Mom
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“Offer support frequently, even if it is turned down. And keep offering. The number one thing I want from a friend or family member is for them to come sit with my child. I’m not looking for a weekend away or some grand gesture. I just need a few hours. I want to shower and not worry. I want to walk my dogs or nap or run to the grocery store. Having a disabled child prevents me from doing almost everything. My son needs constant supervision.”–Kate Swenson, autism parent and blogger at Finding Cooper’s Voice

“When my autistic son was 4, repeating lines and acting out scenes from Thomas the Tank videos could easily be seen as ‘cute’ and inviting us to hang out with your family was not much of a challenge. Now that he’s doing the same thing as a 170 pound, 5-foot-5, 14-year-old it’s decidedly ‘weird’ and will probably take you out of your comfort zone and require you to engage with your kids about acceptance and kindness. Please push yourself to do this. We are becoming very lonely.” — Varda S., autism parent and blogger at Squashedmom

“Not all autism is ‘feel good’ autism. Don’t let the media fool you into thinking that all we’ve got to do is zero in on our kids ‘super talent’ and life will be dandy for us. Sometimes, just getting through the day without a MELTDOWN is extraordinary for them — and WE celebrate that!” —“Pump” autism parent and blogger at Walk One Day In Our Shoes

“Just because my son does many things and goes many places, does not mean it’s easy for him — or us — to be out in public.” —Vickie K, autism parent and blogger at  Taking It a Step at a Time

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“My son on the spectrum is brilliant, it’s just a different type of brilliant!” —Sean Gearhart, autism dad

“Life gets more and more confusing for me. Even though I am 17-years-old and working fulltime, I struggle to understand people sometimes.” —Taggart F., 17 year-old with autism

“My son asks why he was born with autism all the time. He doesn’t want to be different, which in my mind means he isn’t different then any other teen. ” —Vesta A, autism mom

“Being an ally and doing even one small thing to help means the world to us. Make a small donation, call your representative about a bill, send us a quick message, or drop off a hot meal. We’ll remember it forever.” —Tim Tucker, autism parent

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“Autism doesn’t describe me, it’s just part of me. I don’t like to be labeled as special needs. I just want people to get to know me and see that people with autism aren’t all the same.” Ashlyn F., 21 year-old adult with autism and my daughter

“Verbal ability isn’t the end all, be all of autism. Eighty percent of my son’s speech is Thomas the Train scripts. So asking, ‘Does he talk?’ isn’t an indication of how well he does on a day-to-day basis.” — Jessi Cash, adult with autism, autism parent, and blogger at Deciphering Morgan

“Autism doesn’t just affect the person born with it, it changes the perspective of everyone around them…But you learn to overlook the ignorance, to celebrate the little victories, and to dance to the beat of your own drum.” —Emma C., 18, and sister to an autistic adult

“Do unto others as you would have them do unto you and mind your own business because you probably don’t have all the facts. If you can’t say anything nice don’t say anything at all.” —Elizabeth Barnes, autism parent and blogger at Autism Mom

“I’m concerned that individuals on the spectrum are judged and portrayed as a collective. It does not take into account our individuality.” —Liam F., autistic