Why do you have to have #Autism to advocate?



Why is it that so many people in the Autism Community feel that you have no right to advocate and raise awareness for Autism if you aren’t Autistic yourself?

I’m sorry but this is something I find incredibly frustrating and short sighted.  Not to mention counterproductive.

I would never presume to be a voice for anyone else but my own family.  My number one priority is to advocate for my own kids until they have a voice of their own.  When my children are this young, I feel that it’s my responsibility to help educate the world about my kids, while I work to educate my kids about the world.  When they are ready to speak for themselves, I’ll stand with them in support.

I absolutely agree that the Autistic adult community must be listened to. I don’t know why they aren’t. Perhaps part of the non-autistic advocates mission is to help clear the way and let the Autistic adults speak without being drowned out by all the other noise.



image

Over the past few years, I have learned to listen to what the adult Autistic community has to say,  and very often encourage others to do the same. 

I’m sure that there are neurotypical people out there that presume to know more about Autism than those actually living with it.  Having said that, it’s quite short sighted to assume we are all the same. Not everyone takes that approach.



I do what I feel is right, regardless of how unpopular it makes me. 

The world isn’t a perfect place, especially for those with Autism.  Having said that, don’t you think it’s better to have people who care, trying to raise awareness, even if they aren’t autistic themselves? I would think that most people are only trying to help. Maybe we need to coordinate better so no one feels like we are trying to speak for them.

Of course, it would be great if people would catch on and learn that the adult Autistic community has a great deal to offer.  They are able to provide those of us trying to raise kids on the spectrum, invaluable insight, among countless other things.  I honestly don’t know why they aren’t take more seriously. It’s a big problem and one we should be working together to solve.

I get amazing advice from the many autistic people I’ve had the honor of making friends with along the way.  I have so much respect for them and I hope they know that. 

One of the reasons I don’t venture far from my own site or Facebook page is because of all the turmoil within the Autism Community.  It’s very much like walking through a mine field. No matter what you say or do, someone is going to be offended, angry or upset.

There are way to many lines drawn in the sand.  We have people who vaccinate their kids on one side and those completely opposed to vaccines on the other.  We have those with Autism on one side of the line and parents that advocate on the other.

The list goes on and on. 

Wouldn’t we be better off as a community, if we could all put aside our differences and work together for the common good? 

Everyone can play a role and we can play to our strengths. If it were up to me, I would welcome with open arms, anyone that wanted to help. 

If we want Awareness to be effective, we need to present a united front.  Who’s going to take us seriously, when there is so much fighting amongst ourselves?

Whether you like it or not, we need adult Autistic’s, parents, sibling, neighbors, family, friends, teachers, therapists, doctors, organizations,  businesses, politicians and even perfect strangers to work together to help spread Autism Awareness or Autism Education.

The moment we begin picking and choosing who’s aloud to help advocate and raise awareness, we’ve already failed. 

As far as I’m concerned, my kids are way, way too important to me, to allow our petty differences to get in the way of working together. 

In my reality, I welcome anyone and I mean anyone that either wants to learn more about Autism or wants to help a special needs family. I’m not picky about who helps in my quest to prepare the world for my kids and my kids for the world.  So long as we get results and keep moving forward, together.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. 😉

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. 😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

Take a second and answer the poll

Does being an Autism Parent impact your relationships with family and friends?

Facebook Profile photo

About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

20
Leave a Reply (Login to the site or comment as a guest)

Please Login to comment
avatar
9 Comment threads
11 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
9 Comment authors
Lukesmamashannonrosa1lostandtiredAlicia HendleyKelli Stapleton Recent comment authors

This site uses Akismet to reduce spam. Learn how your comment data is processed.

  Subscribe  
newest oldest most voted
Notify of
KatyMurray
Guest
KatyMurray

Gosh, I didn’t realize there was so much division…I guess I assumed it about the don’t vaccinate/vaccinate debate, but not the rest!  My son has autism as a symptom of his molecular genetic syndrome.  He also deals with mental retardation, growth retardation, bone deformities, the list goes on and on.  I guess my point is that he is NEVER going to be able to speak for himself.  If someone turned me away from trying to raise awareness, I would laugh in their face.  That is just ridiculous!  Of course we should all band together to fight for the rights of… Read more »

lostandtired
Guest

KatyMurray I totally agree.

CarlBainbridge
Guest
CarlBainbridge

my son is another that is unlikely to ever speak for himself.  he is essentially non verbal (he can speak minimally when pushed) however the major reason why he is unlikely to stand up for himself is because he is uninterested. He has his thing (electronics) and his little world, and realistically he would function perfectly fine if he never had to leave it. He has no interest in leaving that world that is for certain. Why do parent’s of autistic children need to be part of the equation? Because not all autistic children will grow up to be able… Read more »

lostandtired
Guest

CarlBainbridge I totally agree. Well said.

jillsmo
Guest
jillsmo

I agree with you 100% Rob. I think you’ve said really important things here.

lostandtired
Guest

@jillsmo thank you Jill. I really appreciate it. 🙂

autismfather
Guest

Yup, as I said… the wider your audience, the more likely this is bound to happen. Sorry it had to happen to you as well.
Just keep your head up and keep doing great work. Keep moving forward!

lostandtired
Guest

autismfather thanks Stuart. I appreciate your support and friendship. 🙂

Kelli Stapleton
Guest

Apparently I don’t venture far enough either….  But yes, moving forward.  Together.

lostandtired
Guest

Kelli Stapleton join the club. It’s crazy out there. How’s everything going on your end.?

Alicia Hendley
Guest
Alicia Hendley

You said it perfectly. I don’t think I’ll ever understand why some might view it as an either/or. I want to learn from autistic adults and consider their experiences vital, but I also want to learn from parents who’ve walked this path before me, as their experiences are also vital! Just like you I intend to continue advocating/speaking for my small child, as that is what any decent, loving parent would do. How could we not? Anyway, thank you for what you wrote!

lostandtired
Guest

Alicia Hendley I totally agree with you, not just cause you agreed with me ;-). It just seems only natural to speak for you kids until they can for themselves. 🙂

shannonrosa1
Guest
shannonrosa1

Hi Rob, I hope it’s OK if I copy-and-paste your apology from the FB thread that this post refers to in here, so folks can see that you had a change of heart and are doing your best to listen to autistic advocates. With utter sincerity, -Shannon To be perfectly honest. When this whole thing went down, I had no idea why everyone was upset. Having sat here, upset about all of this, I have a better understanding of why what I said was considered dismissive. Please know that was never my intent. I absolutely agree that we need more… Read more »

lostandtired
Guest

shannonrosa1 of course it’s okay. Truthfully, I didn’t have a change of heart. I’ve always felt that we need to listen to the Adult Autistic community. I have been advocating for a very long time about why we need to listen the what adult Autistic’s have to say. In fact, listen to my Autism Awareness Message on YouTube and you’ll hear be speak about that. What happened in the Facebook chat was unfortunate. When I posted this apology, it was because I understood why my original statement was deemed as dismissive and that wasn’t what I had intended. I stand… Read more »

lostandtired
Guest

shannonrosa1 please understand that I do not approve of or support the tactics of your TPGA. I know you do good work but what happens in that chat should never have happened. I do not involve myself with people who condone the bullying of others that don’t share their same opinion. I apologized because I understood why people were upset, not because what I said was wrong. I want to be very clear that I don’t approve of the way you handled that situation and we are not working together. I will apply what I have learned and use that… Read more »

shannonrosa1
Guest
shannonrosa1

lostandtired shannonrosa1 Well, of course you don’t have to be autistic to be an advocate. That’s not what the conversation was about — that’s what *you* made it it about. You came into and derailed a productive conversation between autism parents and Autistics about the need to spotlight more autism blogs by PoC and Autistics, and in doing so dismissed autistic voices. You, yourself, kicked the hornet’s nest. Being told that your abelist actions are unacceptable is not bullying. I am deeply disappointed that someone like you — who professes to champion autism advocacy — lacks the humility to listen and… Read more »

lostandtired
Guest

shannonrosa1 lostandtiredAs I said. This is a dead issue. You keep calling attention to this chat as though you’re looking to continue the discussion. I’m done with this and have moved on. I would encourage you to do the same. I will continue to do what I do and you will as well. You may not consider what happened bullying but it was certainly not tactful, polite or friendly and accomplished nothing. Please let this die. Comments had to be deleted because of how vulgar your followers were towards me with their personal attacks. I’m disappointed as well. If you want… Read more »

shannonrosa1
Guest
shannonrosa1

lostandtired  shannonrosa1 That FB post was written after your first derailing comment on the TPGA FB thread, not recently. And it’s true, unfortunately. Your inability to listen and learn is embarrassing. The way you are spinning this conversation to make it look as though you’ve done no wrong and are being attacked — when in fact the first salvo was yours, and was entirely unsolicited by us — is embarrassing. You are framing this as me seeking attention, and focusing on what I’ve written about you, instead of examining the issues. You want the conversation to end because you don’t… Read more »

lostandtired
Guest

test

Lukesmama
Guest
Lukesmama

So well put. People with Autism and the people who love them are such a small group. We need to stand together!