Many people don't see autism's most difficult challenges

"But it is the reality of many people out there. And unless you are 'part of that club' you don’t even realize it exists."

By Susan Murray | December 16, 2021

Day 614 since March 13th 2020 picking my sweet Owen up from his residence and bringing him home where I knew he’d be safe from COVID. It’s been amazing & the hardest thing by far that myself & our family has ever done. There’s been many incredible moments & I feel so lucky to have been able to have had all those good times with him. But the reality is he needs so much support 24/7 and his issues magnified over this year. Many autism families know exactly what I’m talking about...

It’s not all happy times. He is thankfully on a new medication that is helping him. This makes each day a more normal day without the constant panic that he will elope or run his shoulder through the wall leaving large holes…. Or partake in something no one or their parent ever should experience & that is your child partaking in self injurious behavior. Hitting himself so much he gave himself black eyes and would even look for the edge of the wall or door or metal bed frame to throw his head against. Throwing your body on top of theirs to physically restrain him until this passes is all you can do…

I know this is a lot of negative information... But it is the reality of many people out there.

And unless you are 'part of that club' you don’t even realize it exists. There’s a trend now of calling out parents & autism organizations on social media who say autism is a disability or hard…They will say that autism is a gift. A super power. Good for them that that is their experience.

photo of Susan Murray and her son Own with heads touching

But no one should ever define autism only by what they experience. I can tell you Owen doesn’t want to suffer or cause what most would consider a year in crisis for himself or his loved ones.

I love Owen for Owen no matter what. But the love you have means you don’t want your child to suffer. Ever. And I don’t mean suffer like they didn’t get into the college they wanted.

I mean truly suffer. And that is why I unapologetically want people to know that autism is hard and not 'The Good Doctor' for most. And it takes more than a village just to live your life and you aren’t even living it normally. Thank God for Owen's meds, CBD ( helped him calm through the “storms” ) and family & friends.

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.

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