The Social Isolation of Autism Parenting – What Does it Look Like?

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Hi!  I somehow missed you yesterday at the party – wanted to send these to you!

Recently, our family was invited to a big summer barbecue.  When we arrived, I could hear a DJ playing music.  I could see a crowd of people surrounding a large barbecue.  A group of Bobby’s friends were playing basketball.  There were tables set up in the backyard that were surrounded by laughing guests.  We started our hellos to the people we knew when the hostess of the party walked by.

“Hi guys!  So glad you could make it!”

“Thanks for inviting us!” my husband replied.

“Well, go have fun!  Robyn, do you want to come with me inside and check it out?”

“Sure,” I answered.

We walked inside, and the hostess showed me the food displays.  She directed me to the deck where the drink displays were, right by the DJ.  Groups were gathered in pockets around the deck.  The hostess waved to me and went on her way to snap pictures of people at her party.

I stepped forward to a table that looked out to the backyard.  I found Catelyn with a group of girls playing badminton.  I located Bobby with the boys now throwing around a football.  And I searched and searched but could not find Declan and my husband.

I walked down from the deck and around the house to the basketball net where I had left them.  There Declan stood, gripping the Minecraft swords he brought with him across his chest.  His face was bright red, and he was crying while my husband tried to talk to him.

“What happened?” I asked as I approached.

“He won’t go any farther than right here.  He looked at the backyard and just stopped.”

“It’s okay.  I got him.  Go see your friends.”

“Are you sure?”

I nodded.  And as my husband left, I put my hand on Declan’s shoulder.

“It’s okay, bud.  How about we go inside where it is quiet, and I can show you the food.”

Declan agreed and walked into the house with me.

Inside the house, I showed Declan what the hostess showed me.  Where the food was, where the drinks were and where the DJ was.  Declan wiped his face and parked by the pretzel tray to enjoy pretzels.  Occasionally another party guest would enter, and we would talk.

When Declan was calm, we went out front – away from the crowd and the noise in the backyard to play real life Minecraft, getting zombies with our swords and building Minecraft houses.

In a little bit, my husband joined us, and we played hide and seek in the front yard.  And after a bit, Declan was ready to go home.  Since we always take two cars everywhere we go – just for this reason – we said goodbye to my husband and left.

The next day I got the text above from a friend at the party.  And it got me to thinking about how socially isolating autism can be.

Now let’s be clear here – it’s me – I don’t mind being the one to play with Declan.  As opposed to approaching a group of women to talk – I prefer Declan play.

But when I talk about the social isolation of autism and our family – this is a part of what it looks like.

People saw me at that party.  How isolating can autism be?  I was at a party!

But unless someone approached me in the front yard or by the pretzel tray, we didn’t get a chance to talk.  All in all, I talked to the hostess and shared one sentence pleasantries with three other people.

I couldn’t leave Declan – I couldn’t just walk into the party and have him run off to play like my big kids do, like the other parents did with their kids.

Maybe I could have taken him away from his play and made him sit with me to talk to someone?  But the surroundings were too unpleasant for him.  Too many people, too loud.  I wouldn’t do that.

There was a time when the safest place for Declan was in our autism proof (not just child proof) house.  And my husband would take the two big kids to an event while I sat at home with Declan.  Safe, but purely isolated.

Now, we may take him to an event – in two different cars, just in case – and we recognize that although we are there in person, we may not all BE THERE.

So, if you ever hear me say that raising a child with autism can be socially isolating, just know I am not saying I am not able to leave my house.  I am saying that even though I may be in the community or at an event, I am not always able to hang out or participate in the event.  And that’s okay.

Just come hang out with me and Declan – and enjoy the fun of building Minecraft houses and playing hide and seek.  We are a lot of fun! 😊

37 thoughts on “The Social Isolation of Autism Parenting – What Does it Look Like?

  1. Thank you for this, it really does resonate with me. It is very similar with my son. The house and garden is his safety zone. It’s not a lock down (might sometimes feel like one), and is a fun place to be. We both would like to get out and socialise a bit more. We don’t get too many invites these days. I suspect it’s because some folk misinterpret some of his autistic traits. My son struggles in noisy/unfamiliar places and finds participating in some of the ‘party’ activities very uncomfortable. He’s not able to run free like the other kids. Often I get the impression that some families think we are being antisocial and/or killjoys. Thankfully he knows a couple of really great kids who get him and enjoy venturing into his world sometimes.

    1. Yes, your story resonates with me as well. That is great a couple of really great kids are in his life. Some of Bobby’s friends are really great with Declan and will play with him – doing what Declan wants them to. They are just the best!

  2. Thank you for describing your experience. I can SOOO relate. For a while, in the early years/days, my husband referred to the “eject button” that was visible only to him and me, and that we would “push” when we knew we had to evacuate a social experience with our daughter ASAP. We knew we were on borrowed time…I like your description of your house being Autism Proof, not just baby proof. This completely resonates with me. Take care and thank you for sharing!

  3. It’s not easy but you’re definitely doing what is best for your family! Many parents would not be so aware of their child’s needs or be willing to put them first. In the end that will help all of you!

  4. You did what was best for your kids and family. I believe it’s hard for minority groups. And most people just don’t know what to say or do.
    Children just need to hear something nice. Best wishes always Robyn.

  5. It can be socially isolating 🙂
    My priority would also have been Declan having the opportunity to experience a large, noisy gathering in his own way and at his own level of tolerance.
    Even if it was ‘on the peripheral’
    – as opposed to not attending the social gathering at all.

    I’d have done exactly the same thing you did, and would hope that my child took away a learned experience about large social gatherings – to build on the experiences they already have.
    (An investment in their future, if you like) 🙂

    1. Yes, absolutely – each experience is one step closer to being comfortable in a new surrounding. Because one day, I may not be with him when he goes to an overwhelming place. So lets try and figure it out now. Good point!

    1. Haha, thanks Elaine 🙂 I think he might run to friend one day – if he ever connects with someone (and it wasn’t so loud and crowded). Fingers crossed! 🙂

  6. When our kids were young we used to use them as a distraction to keep from having to mingle at parties. Those days are done and now we generally just avoid parties. I enjoy the one on one encounters that occur when you remove yourself from “the action” at parties. Walking into a group and joining the conversation? No way.

    1. Yes, I can relate. I don’t mind playing with Declan – it is a distraction to large group socializing. And I also prefer the one on one encounters. I saw the clusters and knew I wasn’t about to approach any of them.

    1. There are so many of our friends that I don’t think realize why they saw me, but didn’t actually spend any time with me. I thought this would resonate with other autism parents or special needs parents as well.

  7. Sometimes when Ben has had enough and it’s time to go, it makes me think of the Secret Service removing the president. Lol. We have a routine and make a hasty, safe exit.
    I’m not a big fan of crowds and noise either so I don’t mind not going to events like that

    1. Haha, that’s funny – I can see that kind of exit and can relate 🙂 Me neither, but the hubby is – fits our family dynamic. We go, I take care of D and he is the face of the family. Works for me!

  8. Enjoying the party with you and an Declan sounds about like the most partying I can handle! Hate crowds and noise. Prefer solitude with books and my laptop!

    1. Me too, really – but my husband loves a crowd of friends. So, it suits me just fine to play with Declan. And we are a lot of fun! 🙂

  9. Oh, Robyn, how this resonates! You know the struggles we’ve been facing with Tyson and his aggressive behaviors. We rarely go anywhere, at all. He doesn’t do well in large crowds or noises either and has such a fixation with vacuum cleaners, that the few places we do go, he wants to see the vacuum, pretend with it and then getting it away from him causes a meltdown. It is very isolating and much easier to stay home. Tyson must be harnessed or held the entire time, because he is a runner. I am glad your family has a plan in place for when you need to make a quick escape. I think I would have had more fun playing with Declan, too!

    1. Yes – I can relate with your story as well. It was so easier to just stay home – for the same reasons. We are a lot of fun! 🙂

  10. What a great perspective! I have been interviewing families of children with autism for a book I am writing, and have discovered that various families react differently in their approach to social invitations. I loved your explanation that, although you are physically present, you might not BE THERE. I think that I would probably be hanging with you and your son.

  11. This is so eye opening to people who can’t relate as well. I provide in home therapy to children with autism and even though I’m there for the children I become very close to the parents also. I always wonder what and how they manage every day activities or events. You and all parents of autistic children are incredibly inspiring. Thank you for sharing this. I truly enjoy your blog.

    1. I understand – I became very close with our in home therapists as well. They helped Declan, but also they helped me – as someone that understood what I was going through, could listen to things about my concerns – things others couldn’t understand or help me with and also – they taught me how to help Declan which was key. You have a very important job – thank you for all you do 🙂 And thank you for your kind words! Very nice!

  12. I can completely relate to this. Neither of my children were ever invited to children’s parties. Family parties are also a minefield and completely stressful.

  13. I love this. You worded it so well. I too have a son (age 8) on the spectrum who has two siblings and I feel this all the time.

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