So, you’re coming for the holidays!

1. The holidays, meant to bring immeasurable joy, are often a challenge for people and families affected by autism.  Autistics struggle with disruption to routine and change, and so while your big family dinner that you plan every year or a surprise Santa at the company party may sound great to you, keep in mind that it might be the straw that breaks my back, at least, if I were a camel.  If I respond to something in an unexpected way (by screaming, crying, lashing out, getting cranky, and so on), try to remember that the joy of the event is just completely overshadowed by the fact that, to me, it’s just wrong because it’s not expected.  Try to build in familiarity and routine into things, such as allowing me to carry a favorite item or by making a favorite food (or, for me, just give me a Diet Coke!).

2.  People with autism often have sensory issues.  As good as your singing along with the radio might sound to everyone else, it may well make me scream because it’s hurting my ears.  The lights, the smells, the textures, the sounds, and the tastes might throw me into a meltdown.  Try to keep things toned down.  Also, have opportunities available for me to engage in good sensory experiences… squishy toys, heavy blankets or pillows, or even allowing me to monopolize your family pet can work wonders!

3. Getting back to that dinner, please understand that my sensory issues just flat out keep me from eating lot of foods.  For me, it’s raw fruits and vegetables and crunchy things… there must be nary an onion or celery bit in my stuffing.  Dinners are a huge source of stress for me, because I fear how people to will react to the way I eat.  While we’re talking about dinner, keep in mind that I don’t really talk while I eat.  One thing at a time is my motto in life, and it carries over to eating.  I know you want to socialize, but your best bet is to wait until we’re done chewing… then, I’ll be happy to rattle of facts about Food Network and engage in repetitive speech about my cat with you!

4. I love presents.  Well, duh.  Of course, right?  But please remember that sometimes it’s just a little much for me to process, all those presents and all that joy at one time.  I might need to get up and down quite a bit.  My sister is fantastic at giving out one present to one person, allowing that person to open, everyone admires, do a bit of chatting, then move on to the next present.  This is great for me.  Also, when it comes to presents, can you just… get your concepts of age appropriate out of here?  My birthday presents included a doll and a Winnie-the-Pooh balloon.  I love them.  The holidays are about joy, and what better way is there to allow a child with autism to experience joy than to get him a few things that he truly wants, rather than what people think he should want?

5. I know we’ve been over this on my blog, but lest someone missed it, I would greatly prefer that you don’t shower me with hugs and whatnot.  In fact, if you touch me and I’m really not expecting it, I’ll scream and swat at you.  And you know, I really don’t want to do that.  It’s not the concept of a hug that I don’t like… I’m a-okay with that!  My body just overreacts to tactile input.  In fact, it hurts me, quite a bit.  Couple that with my impulse control issues, and, well, you get screaming and swatting, sometimes.  I’d feel really bad if I did that to you, so please spare me the guilt and… don’t touch me?

6. My family is awesome.  No, really, they are.  From Great Big Stepdad (he’s over 6′ tall!) to Itty Bitty Niece (18 m old), I couldn’t hand pick them any better.  And yet, anytime there are more than two or three people around, I escape to a nearby room and go on my computer.  The problem, at least for me, is that I can’t follow the conversation as it bounces around the room between people.  Sometimes the TV is too loud.  Sometimes I worry about the baby crying.  And so, I need a lot of breaks… in fact, for every ten minutes I’m in the room and engaged, I probably need the rest of the hour to be alone.  I know, I know; I’ve known you since I was yay high… but still, when it’s you combined with six other people, I can’t handle it.  If I’m doing my own thing, please let me be.  If I go upstairs, please don’t follow me.  If you let me have my time, I’ll come back as soon as I can.

7. I have limited verbal ability.  And so, I will momentarily chatter your ear off about Food Network facts, ask you if my cat is cute, and discuss in more depth than you ever cared to know the upcoming changing to the DSM5.  And then, if you stop to ask me a question, I might ignore you.  Sometimes I try really, really hard to be social and ask someone a question about themselves, and I think it comes off as either rude, too personal, or what have you.  But I’m trying really, really hard!  So, please talk to me like I’m as typical as you are.  I don’t like to be talked down to or ignored.  It takes a lot of effort for me to engage you in conversation, and it’s upsetting when someone is rude and shuts me down because I’m just not good enough.

8. I also have the option of typing my thoughts out to you, but I’m not quite comfortable doing that around anyone but my mom just yet.  On the off chance that I do try typing, try to be encouraging, but also don’t make a way huge deal out of it, because then I get embarrassed.  I don’t like to field 900 questions about how it works and why I do it.  If I’m typing, it’s taken a lot of courage for me to try, and it’s because I really want some typical conversation, and this is the only way I can do it.  Talk to me like you’d talk to anyone else.  Allow me time to get my thoughts out rather than interrupting my typing.  One thought at a time, please.

9. One of the standard traits of autism is that we have “repetitive behaviors.”  You might notice that I chew things, flap my hands, play with my fingers, or otherwise do unusual things with my body.  Sometimes these behaviors mean that I’m a little bit agitated or anxious, and other times they mean that I’m excited or happy.  My face is generally pretty flat and it’s hard to read my emotions that way, but you can tell I’m joyful when my hands flap a little, or you can tell I’m nervous if I keep getting up and down.  And the chewing, well, that just never stops and doesn’t mean much of anything!

10. In the case that I do melt down, please don’t try to help!  Generally, “help” makes things worse, unless you’re Mom and you know how to handle me.  Trying to encourage me, talk me down, or telling me that I’m acting immature will just escalate things, big time!  If I get upset, please just get my mom!

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14 thoughts on “So, you’re coming for the holidays!

  1. i have autism to an ince getting ear plugs it helps some i usly no long i can last at a family gathering then it time to go .im ok giveing a quicjkk hug to someone i no i was taught that a polite thing you do .it was never forced on me but i no i have a ton of sencorey iusse an when im at my limt is when i could lash out i really try not to .an it only happens once in a rare while .but it hader as you get older for opeople to get sometimes u no .i enjoy the hioldays in my own way but i no it can be a nightmare if it to much that why i dont go to my parents work partys been there done it was just awfull .

  2. This is all great & good info, I totally agree. But I must say I really love #4: “Also, when it comes to presents, can you just… get your concepts of age appropriate out of here?”

    AWESOME!

  3. Enjoyed the post as usual. Oh, and I started watching “Wretches and Jabberers”. It turns out that after searching for it on IMDB yesterday (after I commented it on your post) that I found it on Netflix. . . streaming. So I watched about 25 minutes of it on my lunch break. If I have time today, I’ll watch some more. I really like it.

  4. Thank you for this post! I plan to share it too because too few really understand although the ones who truly love you should. I know as much as I try to educate family and friends some of them still don’t get how hard large gatherings are for my daughter, despite how she seems to them. Some still think she is just shy and refuse to see or to try to understand.

    Of course these are the same ones who want to fix her instead of loving her for the unique and wonderful person she is. I am still praying for the world to change.

    • I pray for opportunities to change the world! I’m not sure it’s ever going to change if we’re not on the front lines changing it, you know? But to be sure, you’d think those closest to us would “get it;” not always so.

  5. The one thing that perplexed us about our son before his diagnosis was his blatant loathing of the Christmas holiday. I’m a festive person by nature, and my family are very holiday happy kind of folks. Before we knew our son was on the spectrum, I felt denied one of the fundamental things that parents enjoy about the holidays–to be able to relive the joy and innocence of them through the eyes of our children.

    He was diagnosed this past spring and I have dived head deep into every which way I can to understand my little guy. Posts like this really help me to see the things that I don’t yet understand about him.

    I realize that I am not being denied one of the magical things about parenting a child during the holidays. We have realized, that in fact, we start from the most innocent place of all–to be able to learn about the holidays and to enjoy a new aspect little by little each year so we are blessed in feeling that we get to have the newness of the holidays a little longer. Last year, the only thing intriguing about the holidays for our son were houses that had Christmas lights on them. This year, we can add a few holiday songs, including Jingle Bell Rock, Oh Christmas Tree, and Santa Claus is coming to town. He helped me decorate…a little…this year. My son’s OCD nature came out as we put up the ornaments…all my blues are together and all my silvers are together so my tree feels a little color lopsided but its the best tree I could ever ask for–because this is his first year getting into decorating a tree.

    Thanks for helping me understand our little guy!! We shared this post on our facebook so family and friends who partake in our holidays can better understand our little guy. I don’t want them to distance themselves from him because he doesn’t understand them and they don’t understand him. Knowledge opens doors and hearts!!

    Hope your holiday season is peaceful and full of understanding folks!!!

  6. Reading yet another great post I feel thankful for the family who visit us over the Christmas festivities – they come to us so the girls can escape when they need to, they don’t chase after them, they don’t get upset when the soft squishy jumper they loveingly bought for them gets tossed aside in favour of the video shaped parcel, or if their gift doesn’t get opened because they’re just done with opening for the day.

    Maybe it’s because I put my foot down about staying home, maybe it’s becuse they remember what happened last time they pushed it (and some have the scars to prove it!) but right now they’re all pretty good, I’ve got them trained.

    The best part is I feel empowered to stand up for my girls and say the world stops a the door, this is their home and this is where they get to be who they are, comfortable and secure. They can work at fitting in, and they do work very hard, when they pass the threashold.

    I’m also very lucky to have two girls who love Christmas!!

  7. I loved this blog! Such great suggestions! I am a speech language pathologist. Would you mind if I post this on my Growing Kids Therapy Face Book page? I know many of my families will really benefit from your insights!

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