The Holidays with Autism

This morning as soon as I woke up I thought, ok, got to get to work on the Autism series, what am I going to write about today? I had quite a few windows up in Safari as I normally do, my Dashboard and Facebook are normally always up, but then I had about three or four windows up with sites I had found during my research. I’m keeping track of links in a text file but hadn’t saved those. So when I opened my computer this morning to wake it from sleep mode, Voiceover decided not to work and I had to shut down and lose those pages. Arg.

I had asked my email list if anyone had any personal experience with Autism or knew of any good resources, and one of the people gave me a few links to a center a member of her family runs.

So, I checked out the blog. I scrolled through a few posts until I found one about the holidays and children with Autism. How fitting, since today is Easter, a day with bunnies and chocolate and family cramming together over ham. I don’t celbrate Easter, but I know a lot of families do and my family used to. For us it was just about getting everyone to sit around the table together and when I was young, there was the Easter basket and egg hunt. Mine was a small family, and as I got older, these gatherings became more and more stressful. Changes in family dynamic, not everyone getting along, Gamma struggling in the kitchen but not wanting our help, etc. By the time it was all over, I was exausted. I’ve noticed it being harder since the diagnosis of MS and especially since going blind, because I can’t help in the kitchen like I used to. It’s also harder to focus when a lot is going on, and I sometimes will say it’s like sensory overload, but I think I need to find different terminology, because I don’t suffer that in that sense. I no longer really enjoy these gatherings, and Gamma finally cancelled Easter this year because she’s just too tired.

None of us have anything close to Autism. None of us has a severe sensory disorder, where everything is more hectic, lights are brighter, noises are louder. From what I’ve read, that’s what it’s like for people with Autism. I’m sure we’ve all at some point in our lives, felt overwhelmed. What we might call a sensory overload. I’m sure all of us take that five minutes in the restroom to regroup.

But what is it like for a person with Autism, especially a child? A child who might not have the words to explain they don’t want that bunny near them, or maybe the other children are bothering me, make them stop. Or the adult with Autism who has to get away from the brothers arguing politics? I know when my family gets on politics, I want to run, so what is it like for a person who struggles with sensory overload, for real?

And are the families accomodating? Are the families of a child with Autism willing to say, we’re going to skip it this year, for the benefit of the child, or are they worried about what the rest of the family will think? And if they do go, is the whole family accepting of the child, or do they consider the child a burden?

And is that adult with Autism who chooses not to attend a family gathering made to feel guilty for doing so?

These are the struggles, at least from some things I’ve read about family functions, and from this post at the Morgan Autism Center blog. Really it’s this post that got me thinking about this. So much about the holidays has become so commercialized, an excuse to play the happy, normal family, everyone getting dressed up and sitting around the table. I often think it’s just not necessary, at least for me, and the last few times my family has tried to do the family dinner, I’ve left feeling drained, sometimes in tears as soon as I get in B’s car.

A man at the meetings always says, if you want to have fun at the holidays, come to my family’s house, and I’ll go to yours. And I can say that the Christmas I spent in West Virginia was so much more relaxing for me, and fun.

I guess the point of this post is just maybe to give another glimpse into what I’ve thought about surrounding Autism. Since I’ve never known much about it, I would never think about things like parties and gatherings being so hard. I remember reading a post Katrin wrote about an upcoming family gathering, and the things she needed to do to keep herself from geting overloaded. As an adult, she was able to decide what was best for her. But what about the children? Is it really worth putting up the front of the perfect family, if it’s going to make the child so uncomfortable? Or is it better to go, to not single out the autistic child? Is it better to “mainstream” them?

Thoughts?

3 Comments

Filed under Autism, awareness month, family, Gamma, holiday

3 Responses to The Holidays with Autism

  1. My experiences with autism are limited to three people (all male): one friend of the family with whom I grew up, one boyfriend, and one friend of my kids. All I can say is that there is no one-size-fits-all solution. How to handle holidays depends both on the autistic child and their family. I think the key is, whatever the family decides to do about holidays, to remain aware that the autistic child’s specialness should be given consideration.

  2. Yeah I think it’s pretty individual. Also the degree of sensory integration problems a person can have can be a very wide spectrum and which senses are affected most. Like for me it’s usually auditory and visual with some tactile. for others it is more tactile or taste or smell. It really depends on the person. And what and how affected each sense is can impact how they handle different situations.

    Like for me holidays are usually hell because of the crowds of people and lots of talking and conversations I am supposed to be able to follow and all of the people looking different dressed up. Also I was raised very Catholic and holidays meant church which I hated because I had to dress up in a dress with tights or stockings, shoes that I hated, (tactile issues) and then sit in a building with hundreds of other people that I didn’t know for an hour or more. It was very very difficult for me. So over time for me holidays were something that I would start to stress about months in advance. Like still one of my worst times of year starts Nov 1st and ends Jan 2nd. Like clock work because of the holidays.

    Most autistic people I know have trouble with holidays too because there tends to not be a set end time to each gathering. And we all tend to reach our limit of ability to functionally interact in socially appropriate ways faster than most neurotypical people. And once that limit is reached, we start to get ourselves into trouble with trying to carry out conversations and such. Like my mother will say, “Katrin’s filters just turned off, she must be done.” When I say something I probably had I not been past my “done” point have not said as I would have realized it was not socially appropriate to say.

    But still it is very individual because autism is such a spectrum disorder. Like chances are if you met me on the street you would have no idea I was autistic. But put me in certain situations and it comes through. I have also learned to fake it very well and appear that I am neurotypical as that was a coping mechanism I learned at a very young age. It just takes a lot out of me and wears me out to the point that after a certain amount of time I shut down and can’t function at all.

  3. Ro

    I think that is what is so hard to write posts on this, because it’s so different. Just trying to really understand it is really hard, since there are so many varying clinical opinions even. I think the most informative part of these posts, will be your comments about whatever I happen to write. I know it’s not ever possible for anyone to truly understand a disease unless they have it, and even two people with the same thing will have different experiences with everything. So it’s really interesting to get your perspective on things. Thank you so much for being so open about it.

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