Six Things

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There has been much written and said about autism, but most of it has been aimed at helping people understand the mind of an affected child. I want to take this opportunity not to add to that already extensive list, but rather share the top six things we as parents want you to know about how autism effects us. Our family is from middle-Maine, USA. We have three kids: Gabriel is 7, Olivia is 9, and Jacob is 11. Jacob has autism. If you saw us at the mall, you may not realize we have a child with autism. It’s because it’s a non-obvious disability. There’s no cast, or wheelchair, or tell-tale brace. In our case, it’s just an eleven year old boy who sometimes acts “weird.” If you didn’t know any better, you may think he’s a bad kid and that we’re terrible parents with no control. This isn’t true on either count. We at present to you –

Six Things The Whitehouse Family Wishes You Knew About Autism And Us.

1.  Our family rules are our very own, and do not necessarily mirror yours.

Our son CANNOT sit still at the kitchen table for thirty minutes and eat a meal with usual dinnertime conversation. He simply cannot. He is allowed to graze. He’ll sit, take a few bites, wander off, and return. Repeat as needed until no longer hungry. Is this typical behavior? Nope. Would we fix it if we could? Of course; but we can’t. So, we adapt and move on. Sometimes, you need to pick your battles and sitting at the table for the entire meal isn’t a battle worth fighting. When we go to the store, my eleven year old needs to be the one pushing the cart – even if we’re just getting one thing. Needs the sense of control and safety that having a large metal cart between him and the public provides. Do we run into displays from time to time? Sure. Do we let it embarrass us anymore? Hardly.

           2.  Jacob isn’t naughty, as much as he’s reactive.

I’m not going to lie to you and tell you he’s perfect; or that he wouldn’t fight with his brother (who’s also his roommate); or leave his socks on the floor if he was neurotypical, but all in all he’s a good kid. His outbursts usually stem from fear or as a final culmination of symptoms. If he yells, “I’ve got to get out of here!” during the sermon, or won’t let us patiently wait in line at the store to pay for our items, it’s less often that he’s being purposefully disruptive, and more likely that he’s simply unable to take whatever external onslaught he’s been enduring and needs a break.

Jacob at Jo-Mary Lake

Jacob at Jo-Mary Lake

            3. It can be lonely being Jacob’s parents.

 This isn’t meant to be a pity party, but an educational session. We don’t get invited out much as a family. It’s hard to find a babysitter for all three of my kids (one with autism, and two “normal” kids). It’s sometimes easier to NOT go to your house and be part of the festivities, rather than watch Jacob feel uncomfortable, have nowhere familiar to hide, and get yelled “NO!” to all night. It’s not that we don’t want to see you, it’s just that we love him, too. And back to #1, if you come to our house for diner and he’s running around in his underwear, well, it’s his house. He gets to if he wants.

Wasn't he gorgeous?

Wasn’t he gorgeous?

               4.  Sometimes we seem stuck up in public.

It’s hard to meet social expectation and stop and shoot the breeze with someone when you’ve got to devote so much attention and energy on your child. It’s kind of like having an 80 pound toddler. He’s very impulsive and unaware of his surroundings, but won’t fit in the little seat in the front of the shopping cart any more. Did I skip right past you instead of stopping to shoot the breeze? Please don’t take it personally. I was trying to keep Jacob from knocking over the specialty breads display near the deli. Please forgive me.

       5.  Dropping Jacob off at school (or anywhere else, for that matter) is a huge act of trust and faith on our parts.

 For us, this is the scariest one. Our son is “verbalish.” He can usually make most of his needs known, but isn’t much of a conversationalist. Kids with autism, almost by definition, lack the ability to read the subtle, non-verbal cues most people pick up on when dealing with others. If someone gives you a dirty look, or speaks to you in a sarcastic tone, or uses euphemisms (Go jump in a lake), you get the gist. Jacob does not. I’d like to think that if someone touched you inappropriately, you’d stop them and alert the nearest authority figure. Jacob may not. I hope he will, and I further hope I never have to find out for sure. Kids with disabilities are shown to be the targets of bullying behavior and crimes at much higher rates than the general public. As a Dad, this scares the snot out of me.

Jake, Co-Pilot

Jake, Co-Pilot

 6.  It’s not always easy being Jacob’s sibling.

 There’s great internal conflict I see in my two neurotypical kids. On the one hand, they passionately love their brother, and are very protective of him, but on the other, he’s the kid who answers the door in his underwear and cries in the grocery store. It can be very embarrassing when the kid who’s getting all the funny stares is your big brother. For example, Jacob came into Olivia’s class and kissed her in front of all her friends, who laughed. She loves her brother, and he’s allowed to kiss her if he wants, but she was embarrassed, and felt guilty that she felt embarrassed. Gabriel, in frustration at a very early age, stomped up the stairs shouting, “I wish I had non-tism!” He didn’t know why Jake “got away” with the things he did.

 For more information on autism, and how we’re making our way in Maine, please watch this video that in part features our family. It was taken a few years back, but the information is sound:

 Making our Way: Autism.   

Together Forever

Together Forever


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    • Sam on June 25, 2014 at 8:26 am
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    Hi, just wanted to say thanks for this, it’s a brilliant post and humorously covers many aspects of life for me and my family too. Thanks.

    1. Thanks!

    • Sarah Boyd on June 24, 2014 at 9:26 pm
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    I couldn’t have put it better myself! My son is now 27, works part time at Starbucks and has his own apartment (near us) but was diagnosed at age 3 and I can totally relate to everything you say. Just wanted to thank you on behalf of other parents and reassure you that his path may differ from that of a neurotypical child but it will all work out with a family as wonderful and supportive as you are.

    1. Thanks for sharing about your son! I so hope Jake gets to be that independent!

  1. #5 is especially important. Even children with Autism Spectrum Disorder who do not have any language disabilities may not communicate what you’d expect, including injuries, criminal activity of others, and their own thoughts. The child could experience anything and not report it.

    I’ve written before I think children with Autism Spectrum Disorder should be taught to report all pain and physical contact with others (and adapt these rules as the child’s awareness and experience grows of course). The risk is too great otherwise.

    1. I agree completely, Joseph. Completely.

    • Zach on June 23, 2014 at 12:08 pm
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    Just adding an Amen, Jake sounds alot like my youngest.

    1. Thanks, Zach. I appreciate that. Us Dads need to stick together! How old is your youngest? What’s his name?

    • Angelina on November 12, 2013 at 7:26 am
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    I don’t pretend to know much about autism because I don’t. I read a lot about it because i support/mentor an autistic child and an adult. What you wrote here is by far the best yet as far as an inside look to the family life. Thank you

    1. Thank you very much for the kind words! They mean a lot.

    • Marcia Farwell on October 3, 2013 at 8:04 am
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    Thanks for info., if I had seen your family in Bangor , I am sure I would have wanted to tell you how much I enjoy your post. Now I will just say hello, too bad I have some pretty good stories about your mother. Your family is just great, and your children will know they were loved. That is what is important.

  2. Thanks for sharing this! I know it can be hard. It sounds like your doing great. It seems like I feel like “educating” the public right around when the new school year starts.
    Most of the time we forget that our second son is on that scale, because OUR life has become our “normal”. From time to time we are reminded. And then, I have to regroup, remind myself whats important, what our normal is, and that his happiness comes before friends, aquantances, and people at the mall.
    Thanks again,
    with love,

    1. There is so much truth to that statement. Our kids should get to have safe, happy lives because of our choices, not in spite of them. I tell my kids that if other people have a problem with us, it’s usually ‘their’ problem to begin with.

  3. Thank you for educating us! My life has been touch by a couple of family members who suffer from autism. Thank you for sharing this on Fluster’s Creative Muster. Now that you found our party I hope that you’ll continue to join us every Tuesday evening.

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