From One Autism Parent to Another

From One Autism Parent to Another

I remembered an incident that happened not too long ago.

It involved two autism parents.

How did it go?

First, I was one of the autism parents. I was taking my son to an event at a small facility.

The event was being run by another autism parent and also involved her own child. (Our kids had met when they both participated in a sport.)

What happened at the event?

The event itself was something that typically takes place with 20-30-year-olds, so both our kids were involved at a young-ish age.

Nothing wrong with it—this group encourages teenagers to get involved.

Is there an important part, besides that this was another autism parent?

Yes.

The event took place at a facility that was run by the other parent. The event was being held in a very small room at one end of the building. The rest of the building was being used by the local community.

Therefore, this parent ran this event once a month at their place of employment because, (apparently) the parent was allowed to do this by their boss and (more importantly) the parent did it in order to help their own child participate in this event.

The parent wanted to get in with the more experienced members of this group, and, it  put the parent on a pedestal (which is the way I saw it).

The way the parent did it

I witnessed this parent make this arrangement because the parent was eager for the limelight within this group while also promoting their own child.

I bring up this incident to highlight how one parent can so totally focus on their own child while blocking out knowledge that that parent must (I assumed) possess.

That is, a parent of a child with autism knowing how teenagers with autism might function. They did this (IMHO) in order to totally focus on their own situation. Period. No one else allowed.  

What does all that mean?

Picture this, here’s the room with the event happening. The autism parent runs the place, and the parent’s child is at this event.

My son is also at the event. He’s supposed welcomed here (Yet, there were signs at earlier events that I should have paid attention to. I didn’t because, well, I thought this parent “got it.”)

Now, because of my son’s autism, he can be fidgety and restless. He has to walk around sometimes especially to de-compress (because of being over-stimulated). He’ll even talk to himself.

He doesn’t mean it

And, this parent should know this.

He’s not meaning to be disruptive. He’s not meaning to bother anyone. And, if you ask him to contain his pacing/self-talk to a certain area and lower his volume, he’ll respond fairly well (yes, he’s not perfect, but he’ll try). He’s over-stimulated and this is the way he tries to handle it.

And, a parent with a child on the spectrum should know what that means. I’ve seen this parent’s child do the exact same thing!

This parent gets it, right?

Did the parent really get it or was the parent really there for themselves?

I learned it was the latter.

As I mentioned above, there had been signs that this autism parent didn’t care for my kid, autism or not. There had been signs. (Or, maybe because of the autism, the parent wanted only one child with autism around, I never quite figured that one out).

Anyway, my son is doing his pacing around a hallway outside the smallish room and the autism parent/building facilitator/organizer of this event tells him that if he doesn’t stop whatever it is he’s doing, he’ll be kicked out of the facility.

What?

When did I find this out?

At the end of the event.

At these events, I don’t hang out much with my kid. For the most part, these events are for him so I stay in my car or somewhere nearby. I write, I read, I watch TV. I just hang.

So, when the event was over, my son got into the car and told me that the person running the event (the autism parent) said that he could have been kicked out of the facility. He was pacing down a hallway just outside the event room. The autism parent told him to stop pacing and that if he did it again, he’d be kicked out.

Again, what?

A side note

I am purposely being vague about a few things…one those things is the type of facility I’m talking about. Let’s just say that this facility is a community facility and does hold lots of community-related events. Small ones, due to the size of the facility, but community events are not rare.

However, what is important here is that the person in charge of this event is an autism parent and is hosting an event with…(at least) two people on the autism spectrum.

One of them is not their child, though. Which is the problem.

What did I do?

Well, I didn’t leave.

I went back into the facility and confronted this autism parent. I don’t love confrontations, but this was a ridiculous situation and I would not tolerate it. I’m standing up for my kid because it’s completely unfair.

Of course, this autism parent lied to my face about the threat (I believe my kid, he wouldn’t/couldn’t make up something like that) and then retreated to the “safety” of the other people at the event.

This autism parent basically ran away from me. Because this parent knew…they screwed up. Big time.

How?

You’ve set up an event at your place of work with young people who can (and often do) get loud-ish. They’re competitive and passionate and excited. They’re really into it. (I’m keeping the “it” somewhat vague as well.)

You are in charge, but you also know better. This parent KNOWS that their own child gets like this. Or has gotten like this in the past. Your own child is right there in front of you. Is pretty similar to my kid!

The hypocrisy is what really got to me.

This autism parents knows!

They’re going to threaten to toss my kid out? Then, they’re going to lie to my face about it?

How did it all end up?

I will never take my kid to that event again.

And, even though I knew I wasn’t clicking with this autism parent anyway (this parent has other issues that I won’t get into), I’ve completely distanced myself from this parent.

Not the kids, though. I told my son that if he still wants to be friends with the other kid, I’d support that. I don’t take things out on the children. This is between parents only.

Involve the kids?

It shouldn’t involve the kids at all.

Of course, this autism parent took a different approach. Their kid stopped talking my kid, even though my child was making an effort. (Because I told him that he can still be friends with the kid.)

I understand all people, all parents are different. I get that.

And, I knew this parent didn’t like my kid. I knew this parent only talked to me when the parent needed something from me. The writing was on the wall.

I knew all of this because, well, my kid isn’t this parent’s kid. (Bottom line)

But, really, I was upset by a fellow autism parent behaving is this manner.

Setting up the whole thing, only to knock down the one child that the parent knew was different.

Shame on that parent

Looking back, I see it as a small hole within our helpful, inclusive, and tolerant autism community.

I’m happy that I’m fully onto this person now. Now, I know.

 

More on Kimberly Kaplan:

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