Dear Family and Friends… a letter about holiday gatherings and autism!

Tips for relatives and hosts of holiday gatherings who might need a crash course in what to expect from their guest(s) with autism.

Several years ago I came across a letter about autism and holiday gathering. This letter was written by a mother named Viki Gayhardt. When I found it online I knew exactly what I had to do, so I printed it on lovely Christmas paper and sent it off to our families along with their Christmas cards. I thought that it was brilliantly written and surely would help our families better understand our situation with our son when we visited during the holidays. It turned out to be a hit with our families and very much appreciated and welcomed.

Today, several years later some things stay the same always challenging and other things have become so much easier with our son over time. But the fact remains that when we visit during the holidays, stress and anxiety is that much more heightened for him. This holiday festive season we have been invited to a larger than usual gathering at a family member’s home where there will be lots of people that our son won’t know. Our first and only visit so far at their new home this fall was a bit of a challenge because of his fear of dogs. (You can read that story here). So we will need to speak with them to find out more details of this occasion and find out whether their dog will be there and prepare him accordingly and have some sort of plan in place to help this outing be more successful.

 

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Autism and Holiday Gatherings ~ by author: Viki Gayhardt

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 neurodevelopmental 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. Others are whizzes in math (Albert Einstein was thought to be autistic), 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 ok. 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 food as my sensory system and/or oral motor coordination are impaired.

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 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 a while 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 tippies (what we autistics fondly call you neurotypical folk!) 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 tippies 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 tippy 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!

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Comments

  1. Thank you for sharing this, Suzanne. So enlightening. I hope you and your family get to spend some lovely time together in the coming holiday season, despite the challenges faced. xx
    Malini Parker recently posted..LoveMy Profile

  2. Gosh, Suzanne, what a letter. No wonder you shared this. It really does educate us as to how difficult it is for the whole family, not just the autistic person. And we need to know what we need to do and don’t need to do in social situations. I loved this post.
    Yaz recently posted..The Healing Room in My HeartMy Profile

  3. I am grateful to you ♡Suzanne for sharing ♡Viki’s letter that so clearly helps us to
    view the world through the eyes of the autistic person….. what a great holiday festivity preparation and act of LOVE for everyone ♡♥♡
    Susie recently posted..we remember moments….♥the weddingMy Profile

  4. Marge Laprade says:

    Just simply awesome, Suzanne! Those of us who do not live with this ‘disorder’ (Who knows what is normal and what isn’t! There are so many so-called disorders, that who has the right to say what is and isn’t! Just about everyone in this world falls under ‘abnormal’ in some way or other.) cannot possibly know what it is really like. Thank you for sharing more insight into it by relating a first person narrative in Viki Gayhardt’s letter format.

    (Please let me know if you have a found a way to deal with Kyle’s long hair Christmas request! ♥)

  5. I agree with Marge Laprade. Who decides what “normal” is? I know that sometimes people can feel overwhelming – their energy can feel overwhelming, their perfume can be overwhelming, the combination of sounds can be overwhlming. Much love to you and your family.

    • Patti, I totally get what you mean when people can sometimes feel overwhelming, it can be their energy, perfume, sounds and so much more. I know that even affects me. Thanks for leaving a comment.

  6. Susan Theroff says:

    Thanks Suzanne for such a wonderful post. The letter does so accurately describe what I see my nephew go through when we have big family/friend gatherings. A thoughtful reminder for all of us with autistic children in our lives. I am going to send my brother & sister-in-law this link to read. Happy Holidays! ~Susan

    • Susan, I am so happy that you found my post to read. It will help your family no doubt like it did with ours. All the best for your nephew and his family. And thank you for sharing this with them. Happy Holidays! xo

  7. this brought tears to my eyes.
    brings back so many memories
    of stressful times
    with my youngest,
    with my nieces and nephews.
    what a brilliant letter.
    thank you for sharing….I wish the whole world knew
    and understood.
    -Jennifer
    Jennifer Richardson recently posted..simply saying…My Profile

    • We really are never alone in our stressful moments are we. It just feels that way when we are in the midst of it. Glad you enjoyed reading the letter. It would be incredible to live in a world that knew and understood, I have to agree with you there. xo

  8. Suzanne,
    I learned so much in this post. There is a lot I don’t know about autism. I have a nephew who may be autistic (at least ‘on the spectrum’) or have aspergers. This was very helpful for me to understand the neurological differences between us. I am grateful. I will be sharing your post on my FB page and also with some family.

    I hope that everything goes as comfortably as possible with your family gatherings!
    beckyinburma recently posted..Announcement: New Series Coming Up!My Profile

    • Hi Becky, I’m so happy that you found my post to read. There’s no doubt it will help you and others get him a little bit more easily. It’s even a great reminder for myself when I read this letter. Thank you for sharing it with others. All the best for your nephew and his family. xo

  9. Thank you to the many who dropped by to read the letter to family and friends. I appreciate each and everyone who left a few words even if you didn’t know about this disorder or have anyone who has autism that you know of.

  10. I posted the link to this on the Neighborhood Center of the Arts FB page. Got a couple of shares, including one from the mother of an autistic son. Understanding comes through education.
    Susan recently posted..Herding DucksMy Profile

    • Thanks Susan for posting it on your Neighborhood Center of the Arts FB page. Every person that read it and even shared it, is one person more that can use it to educate others for their children or the people they work with. I appreciate very much that you shared it with others. 🙂

  11. Thank you so much for sharing this! I am printing it out and sharing it with family. I think it will be wonderful especially for my grandma to read, who’s often perplexed by her great-grandson {my little guy}. So helpful!

    • Liv, receiving your comment made it all so much more worth while that I decided to post this letter in hope to help so many more of our families better understand our children. I totally get what you are saying. So many are left perplexed. What I have found when I shared with our loved this letter written by another person who was living it with her own child, somehow that made it that much easier for our own families to get it with our own son. Blessings to your family, your little guy and to your extended family during this Christmas and Holiday Season. xo

  12. This is so helpful to really understand what someone is experiencing and it’s written with such love. Thank you for sharing.
    Michele Bergh recently posted..Divine Grace – Free Inspirational DownloadMy Profile

  13. I am sure that it was helpful to your family who don’t see your son very often to know this information – especially since he might have a hard time communicating this directly himself.
    Amy Putkonen recently posted..76 – The Brittle May FallMy Profile

  14. Amy you are so correct when you say that our son can’t communicate this directly to our families. He cannot at all. All they get to see is the real him. It certainly way easier for us to share this mother’s story/poem with our families from someone else’s point of view. It made it more real and true I feel in a sense.

  15. This was so well written Suzanne. … So glad you shared it. The introduction into Viki’s piece was lovely .And don’t you think it’s a good read for All of us at this time of year ? Just to be reminded about what this heightened energy and excitement can look like from different points of view ?
    Thinking of you on the other side of the country ❤️.. Blessings of good tiding to you and your family .

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