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When Your Family Doesn't Understand Autism

When Your Family
Doesn't Understand Autism

Image: BMcIvr

I have one of those insanely big families, the kind where nobody expects you to remember their birthday and anyone foolish enough to volunteer their house for Christmas lunch has to hire three extra tables. There’s a lot of people, and we all love, support and respect each other.

But I can count on one hand the number of conversations I’ve had with them about autism.

Some days that really hurts, but most of the time it just confuses the hell out of me. Sure they sympathise when things are tough, but don’t they want to understand why? Aren’t they interested in knowing how to build a relationship with my kids? Don’t they get how big a deal autism is?

It feels like there’s this huge part of my life that they’re not a part of. And that’s... weird.

The thing is, I know I’m not the only one. In fact I can consider myself quite lucky, many of you are struggling with families who actively discourage any mention of autism, discredit your parenting skills or in some cases even cut off contact altogether.

Why do the people closest to us find it so hard to talk about?

Let’s run through the list of possible reasons. Since this is your family, we’ll give them the benefit of the doubt and rule out the most obvious ones:

  • They don’t know

  • They don’t care

So here’s what we’re left with:

  • They’re overwhelmed - autism is just too huge that they don’t know where to start

  • They’re protective - they don’t want this to be happening to you

  • They’re unaware - they don’t know that you need support

  • They’re skeptics - they think autism is just a fad

  • They’re in denial - they don’t want to believe your kids are autistic

  • They’re unattached - they haven’t bonded with your kids

  • They’re worried - what if their kids are autistic too?

  • They’re offended - you never call and your kids are unsociable

  • They’re scared - your kids do weird stuff

  • They can’t relate - nothing like this has ever happened to your family before

  • They’re ignorant - they think autism is embarrassing or shameful

  • They’re careful - they don’t know the right way to bring it up so avoid it altogether

The real reason could be a combination of any of these or something else altogether - hell, maybe they think you’ve been saying “my son is artistic” all this time, who knows. The point is, we tend to assume that they don’t care when we really don’t have a clue.

So it’s worth spending the time to try and understand why they’re having trouble understanding autism, because these are people who love and care for you. Given the chance, they can be a source of support instead of hurt (and if they don’t love and care for you, then why are you letting it upset you?)

Be honest

Suck up your courage and talk to them about it.  Get it all out on the table, ask them how they feel and why they’re having a hard time with it. You might be surprised at the answer. Explain that autism is a big part of your life - a life that you’d like to share with them, but you’re having trouble doing that.

Be neutral

Try and leave your emotions at the door.  That’s really hard to do, especially if there’s a lot of hurt there, but it will be ten times harder if everyone’s playing defence.

Be quiet

This is the hardest part - listen to what they have to say. Let them tell you what they think, what they know about autism and how they feel about it all. Focus on understanding exactly what it is that’s preventing them from getting onboard and being involved, so you can figure out whether it’s something you can fix.

Be clear

What does support mean to you? Tell them exactly what you’d like them to do...

  • I’d really appreciate a phone call every now and then to see how I’m doing

  • I’d love you to babysit so we can go out

  • It’d be great if you would come to this training with me

  • I wish we could talk about autism and not just ignore it

  • It would mean a lot to me if you read this book

Be constructive

If they’re receptive to learning more, then teach them what autism is (and isn’t). Explain that a diagnosis isn’t a label, but a means to getting the help and support you need. Point them towards good quality information sources and away from stereotypes, hype and arguments. Correct their misconceptions, and explain why your kids do what they do. Give them a checklist of what to do (or what not to do) around your kids. Explain the reasons behind the way you parent so they can understand that you’re not just being too lenient or lazy. Show the other kids in your family how to play with your kids. Break autism down into smaller manageable bits of information for them to digest.

Be an example

Don’t be scared to use the word autism, and talk about it in a positive way.

Be patient

Give them time to come to terms with it in their own way. Remember how you felt when you first got the diagnosis? It might be even more of a shock to them. Think back to a time when you didn’t know what autism meant or how hard it could be.

Be realistic

Aim for tolerance and support, but don’t expect them to understand your kids the way that you do. That would be impossible - you’re an expert with many many hours of training! Appreciate their interest but don’t forget that they’re busy people too with their own lives and problems, so it may never be as important to them as it is to you (and that’s okay).

Be willing to let it go

As painful as it is, after all the listening and explaining and teaching and waiting there comes a point where you have to accept that they may never get onboard with this. And the bottom line is that you need support - if they’re not willing to give it to you after you’ve tried all of this then you have to give up. You simply don’t have the energy it takes to convince people of things they don’t want to hear. Make friends with people who do get it - they can be your family.

This article was first published in April 2012.

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