Deeply personal insight on how #Autism families end up isolated and how that impacts relationships 

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  • Post last modified:April 4, 2018

Having been an Autism parent for 15 years and currently being separated from my wife for almost 2 of those years, I’ve gained a great deal of insight that I hope will help other families in the Autism parenting world.

Isolation is something that almost occurs naturally, especially when you first begin the Autism parenting journey.

While it’s true that many times, people just don’t understand our lives and it’s easier to just avoid, it’s also a matter of survival. I know that sounds counterintuitive, especially since isolation is not a good thing but it comes down to not putting our kids into situations that will overstimulate them and lead to more difficult parenting challenges.

Autism parents are taxed to the max on the best of days and desperately try to avoid anything that adds to that extreme level of stress as a matter of survival.

Where things get sticky is pretty much everything relating to our outside relationships with family and friends.

It’s so difficult to help people understand why things are the way they are.  It’s hard to ensure that people get that it has nothing to do with them and everything to do with having to survive the fallout our kids experience when they are put into situations that are stimulating.

Sometimes what happens is that people notice that they no longer see their friend or loved one as often and can assume things like the spouse or partner of their friend or loved one is simply trying to avoid them or that they are unloved, unwanted or unimportant. 

While that may be true for some situations, that’s not the case for everyone.

More often than not, it has nothing to do with anyone and had everything to do with just trying to survive another day in the life of being an Autism parent.

Sometimes people really do take these things very personally and soon rifts develop that can lead to the the destruction of relationships. It’s truly tragic for all involved but it happens all the time and I’ve yet to meet another Autism family who hasn’t experienced this to some degree.

My message to you all is this.

Autism parenting is beyond challenging and when it’s been proven that Autism parents and combat soldiers experience levels of stress that are on par with each other, it’s safe to say that it’s not easy.

As a parent living this every single day, I can honestly tell you that knowing how my kids are going to react to something or what I’m going to have to deal with as a result of participating in a family function or whatever, absolutely impacts my decision making process.

I’d be lying to you if I said that I don’t avoid putting my kids in situations (even positive ones) that will create a level of anxiety, distress or overstimulation that will make our already difficult life, even more difficult.

It’s simply a matter of survival.

There’s only one of me and managing 3 kids that will be freaking out because they’re overstimulated, stressed out or overwhelmed, is not something I can easily handle. I struggle with it and I’m the best equipped to deal with it.

Having said that, maintaining relationships and friendships with friends and family is extremely important.

While isolation occurs for very real reasons, it’s important to remember that in most cases, it’s not the right approach.  Isolation hurts everyone involved.

Isolation by its very nature, eliminates support systems and when relationships fracture, that can introduce a tremendous amount of stress into an already volatile situation.

Only by working together, maintaining open lines of communication, educating ourselves, showing understanding, compassion and devotion to what’s best for the child involved, can we avoid the pitfalls that isolation can cause.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Vitor

Thank you Rob, it’s difficult for “outsiders” to understand why we are so busy with the kid and energy levels so low.
I have a favour to ask (as a researcher). It would be great if you provided sources for some claims, even if they’re just an article online (e.g. that “autism parents and combat soldiers experience levels of stress that are on par with each other”).
Appreciate your work, and I wish you and the boys all the best.

mathewpenny648

I notice that it is easier to keep our loved ones close, and to rely on each other. So the 4 of us are pretty tight, and we all help each other. We are mostly in a balance. But it’s depressing to talk to others about our health or disabilities. So we end up keeping more to ourselves.