If the #Autism community wants change, we need to lead by example

Autism Awareness month isn’t just about making the world more Autism Aware, at least it shouldn’t be.  This should also be a time when to take inventory of ourselves as a community as well.

I’ve always said that the Autism community is truly amazing but it’s also very fickle.

There’s a great deal of division based on things that really shouldn’t matter. Rather than working together for a common goal, all too often, we allow things like semantics, stances on vaccines, whether or not we should cure Autism, educational choices, dietary beliefs and general intolerance to create cracks in the foundation of our community.

Over time, those cracks have developed in these great divides that we just can’t seem to get across.

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Whether or not the world will ever be Autism friendly is irrelevant if we can stand unified with our loved ones on the Autism Spectrum.  What’s the point of trying to get the world to be understanding and accepting, when we don’t understand or accept each other first?

I would really like to see people building bridges so we can cross these great divides and reach our fellow Autism community members with open arms.

It’s no secret that everyone has a different opinion on things like vaccines in particular.  Should that be a reason to overlook everything else we have in common? Should we look down on someone for using the word Autism instead of Autistic or visit versa?  Of course not!!!

This Autism Awareness month, I ask that you all take a moment and do a bit of soul searching.  Forget the rest of the world for now because the rest of the world is outside of our control.  We can however, control how we interact with and treat each other.  We can control how treat and relate to the adult Autistics in our community as well.  They are an invaluable resource and in most cases are more than happy to help or share their insights. Are we doing everything we can as a community, to encourage and support the adult Autistics? Probably not but we sure as Hell should be…and that needs to change..

Together, we can make a difference but we need to lead by example and show the world that we stand unified as a community.

We are parents of kids with Autism. We are Adult Autistics.  We are teachers, siblings, family, friends, therapists, counselors and doctors who care for a person or persons with Autism.  We all need to stand together and show the world how our loved ones with Autism and their families should be treated, what kind of support is needed and what the average person can do to help..

If we really truly want to see change, it’s time to lead by example…… ☺

Rob Gorski

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

I know there is always room for improvement, but specifically, what do you think is most lacking?

Since the autism speaks started , autism treatments and diagnosis have increased and more and more insurances cover the necessary therapies.
So outside of what happens to any major awareness campaign (ex. Komen). What do you think they should focus on next or more than they do?

Rob Gorski

That’s a good question. Here’s the problem. If you randomly selected 100 adult Autistics I bet you the majority of them do not like or support Autism Speaks. I’ve not met one adult Autistic that does. That doesn’t mean they don’t exist but whatever.

Autism Speaks started out as a small group of parents in someone’s garage. They’ve grown into the single largest and most profitable Autism organization in the world.

They do great things with research and lobbying. Those are crucial for the community. That being said, they also are the most controversial as well. They bring in so much money and a disproportionate amount goes to salaries and entertainment budgets. There’s very little transparency and absolutely no representation by persons with Autism on their board of directors.

My personal problem stems from the fact that rather than raise Autism Awareness, they’re simply raising money for themselves. The blue light bulb has nothing to do with Autism Awareness and has everything to do with Autism Speaks.

Autism Speaks has become so large, they’re crushing all the other Autism organizations that actually help everyday people.

Everyone fundraiser or celebrity endorsement goes to Autism Speaks. All that money goes straight to them and they get to decide where that money goes. A large part of that money goes to cover the 6 figure salaries of the officers.

They have fallen and no longer represent the best interests of people with Autism.

Perhaps if they presented themselves and strictly a research and lobbying organization things would be different but instead they’ve become the voice of the Autism community. When the people that have Autism do not support an organization that’s supposed to be helping them, it’s time for us to listen…

Braden

I know there is always room for improvement, but specifically, what do you think is most lacking?

Since the autism speaks started , autism treatments and diagnosis have increased and more and more insurances cover the necessary therapies.
So outside of what happens to any major awareness campaign (ex. Komen). What do you think they should focus on next or more than they do?

Rob Gorski

That’s a good question. Here’s the problem. If you randomly selected 100 adult Autistics I bet you the majority of them do not like or support Autism Speaks. I’ve not met one adult Autistic that does. That doesn’t mean they don’t exist but whatever.

Autism Speaks started out as a small group of parents in someone’s garage. They’ve grown into the single largest and most profitable Autism organization in the world.

They do great things with research and lobbying. Those are crucial for the community. That being said, they also are the most controversial as well. They bring in so much money and a disproportionate amount goes to salaries and entertainment budgets. There’s very little transparency and absolutely no representation by persons with Autism on their board of directors.

My personal problem stems from the fact that rather than raise Autism Awareness, they’re simply raising money for themselves. The blue light bulb has nothing to do with Autism Awareness and has everything to do with Autism Speaks.

Autism Speaks has become so large, they’re crushing all the other Autism organizations that actually help everyday people.

Everyone fundraiser or celebrity endorsement goes to Autism Speaks. All that money goes straight to them and they get to decide where that money goes. A large part of that money goes to cover the 6 figure salaries of the officers.

They have fallen and no longer represent the best interests of people with Autism.

Perhaps if they presented themselves and strictly a research and lobbying organization things would be different but instead they’ve become the voice of the Autism community. When the people that have Autism do not support an organization that’s supposed to be helping them, it’s time for us to listen…