Autism Advocacy, what’s it like? What should I expect & what should I know?

[Greatshield17]

As was stated in my latest thread in the Religion sub-forum, I plan on becoming an Autism advocate, as odd as it may sound, I actually believe that this is a key part of my own spiritual growth, but I won’t digress into that on here. I want to know, from other advocates on here, what is it like, what should I expect? It does sound like the mainstream media is uninterested, if not hostile, to letting us be heard, and tries to bury and shadow-ban us and the like; what else does one have to deal with on the frontlines?

Of course I’d also like to know any advice you have for a novice like me? I cannot change the philosophy (and even a bit of theology as you can see from my other thread) I plan on employing, but there are other areas where it may be helpful for me to be more flexible, and consider approaching things from a different and novel from how I would otherwise.

 

[Crossbreed]

I want to know, from other advocates on here, what is it like, what should I expect?

What do you mean by "autism advocacy?"
Is that in some kind of professional capacity,
or just when you speak on the subject in your personal life?

 

[Greatshield17]

I’m not sure, I guess what I mean is engaging in a sort of apologetics, where I engage in rational arguments to make the case; that Autism doesn’t need to be cured, that Autistic people shouldn’t be treated the way they have been treated both in the past and now, (which I personally suspect is worse, with seclusion rooms and the like) and that there are better ways to help Autistic people be integrated into society.

Do you understand what I’m getting at here?

 

[Crossbreed]

Even within the autistic community there are differing views about how the "spectrum" should be treated.
One view says that severe [depression/anxiety/et al.] in autism should be treated like it is in NTs; that is, therapeutically.*
Another view says that those things are intrinsic to autism. That they should be left intact, accommodated, even celebrated...!

You need to decide which view you want to perpetuate, and sit at the feet of those advocacy organizations for awhile. (All of my contacts embrace the former.)

*This camp believes that if we could somehow cure/prevent the "bad" parts of autism, the person would still be ASD1, which is just a form of neuro-diversity.

 

[Judge]

It does sound like the mainstream media is uninterested, if not hostile, to letting us be heard, and tries to bury and shadow-ban us and the like; what else does one have to deal with on the frontlines?

Best to keep one thing in perspective. -"The numbers".

It's what makes and breaks most any considerations of understanding autism. For every one of us, allegedly there are 68 of them. That unless autism directly impacts their lives, there's no incentive for them to bother.

Not of malice, but simple indifference. In a world rife with more noticeable and struggling social minorities than ourselves. Making it unlikely that we'll ever be significantly prioritized by a social and neurological majority.

 

[Greatshield17]

Even within the autistic community there are differing views about how the "spectrum" should be treated.
One view says that severe [depression/anxiety/et al.] in autism should be treated like it is in NTs; that is, therapeutically.*
Another view says that those things are intrinsic to autism. That they should be left intact, accommodated, even celebrated...!

You need to decide which view you want to perpetuate, and sit at the feet of those advocacy organizations for awhile. (All of my contacts embrace the former.)

*This camp believes that if we could somehow cure/prevent the "bad" parts of autism, the person would still be ASD1, which is just a form of neuro-diversity.

I see, thanks, I’m definitely with the former camp, I couldn’t be where I am (and thus speak up for us) now if I didn’t struggle to overcome those issues.

 

[Ken]

Don't know if this is along the lines of your interest, but there is an organization called, "Autistic Self Advocacy Network". They are a substantial non-profit organization run by autistics that advocates for autistic and other "disabled" people. You might check out their website to see if that is what you are interested in. I like their motto: "Nothing about us without us".

 

[ForestGumpett]

It sounds very stressful to me. The best I could do for the world was to walk dogs at the shelter and they really appreciated it. It’s nice to be appreciated, when dealing with people that usually is debatable on if it’s going to be appreciated or not.

Is there anything else you would like to do? Maybe help some autistic kids? I had a job where I was working with a few autistic kids and it was making crafts. Hard as heck when they are fully autistic as in wouldn’t make any contact nor notice what we were trying to make, it ended up being time where I just listened to a parent that was really stressed and needed someone to listen. Just me and the parent making the craft while the kid went on about other stuff...I could be a help to that parent right then. They just needed someone to listen. There are a lot of people that just need to be heard and this would possibly make you feel needed and you would be. Won’t cost anything. Oh, and nursing homes when the covid thing is over would be really good - I did that from 9yo up. You can learn so much from old people!

My 2 cents.

 

[Greatshield17]

Even within the autistic community there are differing views about how the "spectrum" should be treated.
One view says that severe [depression/anxiety/et al.] in autism should be treated like it is in NTs; that is, therapeutically.*
Another view says that those things are intrinsic to autism. That they should be left intact, accommodated, even celebrated...!

You need to decide which view you want to perpetuate, and sit at the feet of those advocacy organizations for awhile. (All of my contacts embrace the former.)

*This camp believes that if we could somehow cure/prevent the "bad" parts of autism, the person would still be ASD1, which is just a form of neuro-diversity.

Hey, I just read through some of the stuff you’ve shown me and exploring your site more; it’s all been quite helpful with some of the things I’ve been thinking about and pondering-over; thanks.

 

[VictorR]

Advocacy is what you make of it. Some lead groups. Some participate in groups. Some are vocal on social media. Others may participate in surveys and studies.

Find what you're comfortable with, and that's the advocate you'll be

 

[Greatshield17]

Best to keep one thing in perspective. -"The numbers".

It's what makes and breaks most any considerations of understanding autism. For every one of us, allegedly there are 68 of them. That unless autism directly impacts their lives, there's no incentive for them to bother.

By “us,” you mean so-called “Level 1 Autism,” right? (I’m starting really the ASD -1 re-definition, the more I think about it, and more because of what it actually means than the fact that it’s confusing to NTs)

Can you &/or others provide me references to statistics and the like?

 

[Crossbreed]

Can you &/or others provide me references to statistics and the like?

Both of these are California statistics, but they are proportional to the whole country.

California DDS Autism Cases By Birth Year (2014)

2019-CA DDS Autism Cases By Birth Year

They represent ASD2/3 cases only; no ASD1s.

 

[VictorR]

Incidence rate in BC is currently around 1:40. See Autism and Neurodiversity in the Workplace for some other stats you may find of use (along with references).

 

[Greatshield17]

Both of these are California statistics, but they are proportional to the whole country.

California DDS Autism Cases By Birth Year (2014)

2019-CA DDS Autism Cases By Birth Year

They represent ASD2/3 cases only; no ASD1s.

What stats do you have on the ratio between high-functioning vs low-functioning Autistic people?

 

[Crossbreed]

What stats do you have on the ratio between high-functioning vs low-functioning Autistic people?

I don't have any ratio stats for that. (One of my recommended organizations should.)
ASD1 wasn't recognized/recorded until 1994 (as DSM-4, Aspergers Syndrome) and California's DDS has no responsibility to manage them (during school and transitioning into adult support services). ASD1s are comparatively low-maintenance.

 

[Starfire]

The best I could do for the world was to walk dogs at the shelter and they really appreciated it.

Taking dogs at a shelter for a walk is a very kind, selfless, and worthwhile thing to do. Thank you. I have no doubt the dogs really appreciate it too as they probably get very little personal and individual attention and no doubt crave it to some degree as very social animals. You’re a winner, and doing this alone is a worthwhile contribution to the world and the animals, and sets an example to many selfish self obsessed people about what they could be doing with just a little of their spare time.