Saturday, November 13, 2010

Helping Those on the Autism Spectrum during the Holidays

Hello Aspierations Friends!

With Thanksgiving and Christmas just around the corner, many families will be participating in visits with family and friends. For a family that has a child, children or adult with Autism or Asperger's, this is often a very challenging time for so many reasons.  There are lots of noises, lights, possibly a trip to the mall and Santa's lap (and that beard!!)... family pressure, trying to accommodate everyone's wishes, smelling all kinds of smells, being encouraged to try all kinds of weird tastes (fruitcake anyone??)... and so many other challenges that can overload the senses. What is supposed to be the "happiest time of the year" can turn overwhelming and sour very quickly!

Although relatives and friends often mean well, without walking in our shoes and traveling our paths, there is no way to fully understand the depth and extent of what it is like to journey along the autism spectrum.  

You may catch us at our best moments, see our calmest and cutest photos, speak with us when we feel calm and in control of our environment.  To you, we're just as "normal" (whatever that word means) as you are. 


Oftentimes parents will try and put their child's best moments and anecdotes of progress out to the world because they want to hold onto and share the positive.  When people open their wallets to show pictures and brag, the pictures are generally smiling, right?  


Do you seriously want to hear junior's fecal smearing stories and the time he ran out into the street naked while the neighbors were having an outside chat?  How many meltdown in Walmart stories can you take?  We may try and use humor to deflect the pain or to try to make light of a challenging situation but behind closed doors, there are challenges that special needs parents face that only someone who has been through a similar situation can truly relate to.

You may see us having meltdowns or challenges and not understand why.  What is not a big deal to you may be a tremendous deal to us.  You may think we're intentionally misbehaving or laughing inappropriately and it really might look that way but you don't know the whole story. We may have wild mood swings and we can't just always snap out of the depression that is often a co-morbidity, although it may seem sometimes that our mood can change immediately and confusingly enough, this is true too.  We might be able to put on a good face and act out the role that you wish to see to make you feel comfortable but we would prefer that you love and accept us for the person we are without the mask.

This evening I was visiting Autism Creations Facebook page to see if there were any new cool tags to snag and I came across this post in Michelle's "Notes" section.  I could relate to much of what the author wrote.  In fact, it felt like I might have written it.  I am not sure who to give credit to for writing the letter you will find below but since I was given permission to pass it along, I am gladly doing so. If the anonymous author ever wants to contact me to chat or get credit on our blog for his/her beautiful posting, I can be reached at lettingmylightshine@gmail.com.  I think we have a lot in common!


"Dear Family and Friends:" was written for the purpose of it being sent to relatives and hosts of holiday gatherings who might need a crash course in what to expect from their guest with Autism or Asperger's.

I hope you enjoy.  Please feel free to pass along!

Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year. Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.

As you probably know, I am challenged by a hidden disability called Autism or what some people refer to as a pervasive developmental disorder (PDD). Autism/PDD is a neurological disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, some can hardly hold a pencil, others are whizzes in math or have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn't understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by okay. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.

You might think I am ignoring you, I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful.

I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat. If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me, go on without me and my parents will handle the situation the best way they know.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating: sight, smell, taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky. I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired. Also, I have a hard time eating neatly, calling me "pig" just confuses me!

Don't be disappointed If mommy hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable! Temple Grandin, a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.

When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard for me to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things just please be patient with me and understanding of how I have to cope...mom and dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "Self regulation," or "stimming'. I might rock, hum, flick my fingers in my face, flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.

Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this "perseverating" which is kind of like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me "stim" for awhile as they know me best and what helps to calm me.

Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you. It hurts my parents' feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, Sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow your rules.

I am a unique person--an interesting person. I will find my place at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes!"

 ~*~ Feel free to copy and paste the above and below to share with family and friends ~*~





I had a little more that I wanted to say, Aspierations friends!  Surprised? :-)


Just because a child or adult is on the autism spectrum doesn't mean that he or she can't have a wonderful holiday season.  Your support, your love, your willingness to show patience, acceptance and humor is greatly appreciated.  The holiday season is a time for joy, happiness, selfless behavior, sharing in family traditions and creating new ones.  Accept us, engage us, don't be scared of us, don't hide from us but please don't pressure us or make us feel that your way of celebrating is the right way and that our way of celebrating is wrong.  Our ways are just different. Try and come into our world for a little bit.  Get down on the floor while we're lining up our cars, hum along with us as we're singing a tune, let us have our sensory breaks if we start to get overwhelmed and try and see us as the unique and wonderful people that we are.  









Blessings and love today, tonight and throughout the holiday season!
Let your light shine!
Karen 

6 comments:

  1. So well said!!! BRAVO! I need to send my in-laws here. And my parents. And my brother's family. And about a dozen other people. Thank you for being an eloquent yet down-to-earth voice for the autism community. I read many of your writings and you are an amazing woman sharing of yourself as you do. Definitely one of my favourite bloggers so keep writing the good write!

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  2. I second that. OMG! If family does not live with you, they simply do not get what you are going through. Can you believe I was told that if my kids (13 ASD, 8 NT & 6 PDD/NOS), hubby & I did NOT make it back east for Thanksgiving to the in-laws that it would be taken as a personal offense? Never mind that planes are a HORRIBLE EXPERIENCE. Never mind that it costs a ton and the conversation would be strained and I'd be spending the whole time running around after the kids. Families are torn apart all the time because of unneeded added stress. WHO SAID FAMILIES HAVE TO BE TOGETHER AT THE HOLIDAYS? I would be open to it if people were understanding but they're trying to live some Norman Rockwell fake picture and want us to be a part of it.

    So with you, sister!
    Susan

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  3. P.S. I will cut and paste and email a copy so that maybe they will finally get it. We get the same pressure every holiday season, every birthday, every summer. We try to be so nice about it but then get a guilt trip if we don't comply. Our lives are hard enough as it is. If you truly loved us, you would accept it when someone says no thank you. You would ask how can I help instead of expecting someone to empty their bank account out for one weekend of stress.

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  4. Hi Anonymous & Susan,
    Thanks for your kind words. I appreciate you stopping by! Anonymous, I liked your line about "writing the good write". :-)

    Susan, I'm sorry that your in-laws are expecting you to spend Thanksgiving with them or it will be an offense. Ultimatums or guilt trips are not healthy ways to get people together for family gatherings. It just breeds resentment and if you actually do get together it comes out pretty fake anyway because you feel forced to be there at a financial expense you might not be able to afford.

    I'm all about building stronger families but the feeling needs to be mutual and respectful. In my opinion, summer vacations when the kids have longer times off are much easier for get-togethers. I realize that holidays may have a certain level of importance and tradition to family members but we can have "Thanksgiving" almost any day. Good luck to you! :-)

    Karen

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  5. Hey Karen? Hope all is okay? I really enjoy your writing. Hope you blog again soon!!! Need my daily fix.

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  6. Hello Anonymous!
    Thanks so much for thinking of me and asking if all is okay. There's been a bit of illness around the house this week. That combined with gearing up toward our busiest business time of the year left less time for personal blogging than I would have liked.

    Thanks so much for kind words! I wrote a short blog tonight (short for me) and will blog again this weekend!

    Please come back again soon!
    Karen

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