No one is trying to keep us away from parties or gatherings, but we experience isolation from society through all the things that require so much of our children that we have to let them be. And then something surprising happens: We begin to isolate ourself.

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This is what the author behind the blog Us plus autism writes in a post that addresses the isolation and distance you can feel, as parents and families with children with autism. Here you read the post:

My children have a diagnosis of autism spectrum disorder, which in itself brings with it many different challenges.

For us parents, it means an unprecedented amount of preparation, planning, facilitation and assessments of all situations in our lives. From how to make breakfast work better to holidays and parties.

This becomes a part of our lives and most of the time I manage to lull myself into our bubble and "forget" how everyone else around us is feeling.

Then something happens. Something that is incredibly difficult to talk about. Isolation.

The diagnoses of my children make me and the children's father isolated. We are excluded by others or, in fact, by ourselves. When I'm at an event with my child, I'm incredibly busy all the time. This makes it easier to postpone the reactions until later. Because they always come.

When we are with other parents and their children, we see how easy it can be.

At the summer party in the kindergarten, for example, I heard a parent say, with the utmost obviousness, “go line up and have a hotdog. Come here when you have picked it up”. It all unfolded exactly as said. The child walks, stands in line, picks up the plate with a hotdog, and returns. Then the child sits down, eats and thus gets permission to go play with the other children.

I saw several pairs of parents sitting most of the time they were there, while the children arranged themselves. With guidance of course, but still. Then I would also mention that this was usually with the oldest children, 4 plus years old. Of course, those with smaller children did not sit that much. But mine are 4 and 5…. so a good deal more self-propelled they should have been.

The way we are excluded from society is, of course, all the things that require so much of our little ones that we must consider letting them be.

May 17 is an obvious example (i.e., the National Day in Norway). Then we must consider dropping out. Lucia celebration in the kindergarten is another example. There are many such things we are excluded from, although some say we choose not to come.

It's not really a choice.

If you think about it, you would never take a 2 year old on a hang glider ride. The child had never had the opportunity to handle all the things he had to do to be able to do it. Thus, you are excluded from that sport with your child. The difference is that the things we can not participate in, we SHOULD strictly be able to participate in.

But my children cope poorly or not at all. They can't be blamed for it, and neither can those around.

I do not assume that others want to isolate us. No one is trying to keep us away from parties or gatherings.

It is almost as if one can say that the event isolates us on its own.

Just like hang gliding with a two-year-old in a way isolates you, because it is inherently inappropriate for your child. A lot of things are inappropriate for children, and some things are inappropriate for my children even if they are adapted for and specifically made for children!

But then something surprising happens to you. At least that was surprising to me. I isolate myself!

I traveled to baptism this weekend. Alone, of course. My husband and I found a good solution. I started up, and afterwards my husband took over and I left the company. When I sat there, I looked around at the the other families' children. They sat like little angels. Not that they never did anything wrong, but it went just fine. Their parents did not look neitherr surprised nor stressed.

Everyone smiled and laughed, talked about the children. About how good they were, about the ceremony in the church, about the baby who was newly baptized. I do not know how many times I swallowed the tears during the company. But there were many.

Baptism is of course extra difficult, but this happens to varying degrees in other contexts as well. Whether it's a party or just a gathering with friends. The conversations revolve around our children and our lives. Of course! But in such conversations, it only becomes hysterically obvious how different it is for us than for everyone else, and it is expected that I will not break down.

I can not start yelling in front of a crowd of people. All they did was talk about their lives.

They have not necessarily even said anything critical about my life. But imagine, 2,5 hours into the company, and I barely hold on to the tears.

Then there is someone who says something, something perhaps trivial, but which is really deeply insulting to a parent with children with diagnoses.

Something completely incomprehensible. Maybe it's about us needing to expect more from our children, to set clearer boundaries. Some statement that has probably been said with the best intent, perhaps advice based on their own experiences, but which is not at all possible for me to use.

This is the famous drop that makes the glass flow over.

That's the point I have to make. So then I apologize and leave. Some people probably think it's rude, but I'm more worried about how everyone would react if I stood and shouted in front of the whole crowd.

At the few parties I'm at, I try to avoid sitting in the same place for too long. I walk from group to group. Then it is less likely that someone will have time to say something that triggers me. To go to a party, I have to be in a good enough mood to be strong. And if I'm in my week number three with too little sleep, then it's not super interesting for me to go to a party.

The point is, I end up dropping social occastions. For my own sake. Sometimes it feels like autism is contagious.

As if I handle social settings as badly as my children. Even when they are not there. A kind of social anxiety that creeps up on me.

The exception is with my closest friends. The ones I can start cry in front of. Those who cope with seeing me crying in completely ridiculous places. The ones I must not hold back from. There are not many of them, but some. I can go to them, but parties with people I do not know very well are exhausting.

Forgive me! I'm no longer like the rest of you.

Forgive my grief and vulnerability. I'm just trying to shield you and me from the embarrassments that come from the life I now live.

The grief that begins again every morning!

- From the blog Oss pluss autisme (Us plus autism)