this post was submitted on 30 May 2024
246 points (96.9% liked)

Asklemmy

43755 readers
2118 users here now

A loosely moderated place to ask open-ended questions

Search asklemmy 🔍

If your post meets the following criteria, it's welcome here!

  1. Open-ended question
  2. Not offensive: at this point, we do not have the bandwidth to moderate overtly political discussions. Assume best intent and be excellent to each other.
  3. Not regarding using or support for Lemmy: context, see the list of support communities and tools for finding communities below
  4. Not ad nauseam inducing: please make sure it is a question that would be new to most members
  5. An actual topic of discussion

Looking for support?

Looking for a community?

~Icon~ ~by~ ~@Double_[email protected]~

founded 5 years ago
MODERATORS
 

Should we stop supporting them with our eyes for taking sponsorships from shady companies?

Edit: I took my first step and unsubscribed from the channel and I will continue to withhold my viewership to those that don’t take better care of the viewers.

Likely doesn’t matter, but I’m on a roll of not giving my money to companies that are immoral so why not do the same with my eyes.

you are viewing a single comment's thread
view the rest of the comments
[–] TheFonz 33 points 5 months ago (2 children)

As a parent of a child with Level 1 autism I would never dare speak as an authority on the subject. There's just so much nuance to it. I could give people a surface level introduction but that's it. Being a parent does not make people by default into expert psychotherapists.

[–] shankrabbit 12 points 5 months ago (2 children)

That being said, don't discount your expertise in your lived experience. The importance of theoretical and experiential expertise is equal in my eyes.

Maybe not directly correlated, but I would hire someone with 10 years experience over someone who studied the subject for 10 years.

[–] TheFonz 5 points 5 months ago (2 children)

Thanks. Well, we're in our first year since the diagnosis. There's still a lot I don't understand.

[–] [email protected] 3 points 5 months ago (2 children)

The more you understand the better you can help. You've made the first and most important step. I'm extremely passionate about this and you will find many around you are also passionate. I'm a grown ass dude and 46 and could cry.

Talk to their teachers as they get older. The best thing you can ever do is diagnose. There are so many kids in the school system parents bury their heads and it hurts everyone.

If you ever want to talk I'm almost a decade into my autism journey. Started at 3 and my son is now 11.

[–] TheFonz 2 points 5 months ago (1 children)

Thanks for the kind words stranger! We are fortunate that we moved to Italy (from US) and they have a -relatively- good integration with the schools. He will need an aid next year in the class for some time so the teachers 'get it' (sort of).

Yes, I will save your contact info. I may actually reach out. There are a lot of things I'm still struggling with (he has a loud projection when he expresses himself and it's almost all the time). I think we sort of adjusted to it over time but it gets heavy at times. I'll stop here.

Thanks again!

[–] [email protected] 1 points 5 months ago

Both my boys stim verbally with my youngest being "worse" at is. The balance is teaching them awareness and also time and place.

[–] [email protected] 1 points 5 months ago (1 children)

I disagree. It’s not as simple as that.

I wasn’t diagnosed until age 30, and I am thankful I went through my childhood without the label.

[–] [email protected] 1 points 5 months ago

If you were not diagnosed until 30 and you're here on Lemmy you're validating my challenge with all the people like you being the exception to the rule. The fact that you are here and can communicate puts you ahead of what I would define as the silent majority of those with autism.

[–] [email protected] 1 points 5 months ago

You’ve been gathering experience from before the diagnosis. You don’t have a year of experience you have the age of your child of experience.

[–] [email protected] 2 points 5 months ago

There are different kinds of experience. For instance there’s the experience of having a child with autism. There’s also the experience of being autistic.

[–] [email protected] 5 points 5 months ago (3 children)

As a parent of two kids on the spectrum my messaging has been just this with a resounding "there are legions of autistic people that are NOT represented. Ever."

Every representation of autistic people you see in the media, or chatting with online are the exception and the fact that they collectively shit on the fact that there are many isolated and struggling is goddamn frustrating.

If you're autistic and on Lemmy I'm proud of you. My youngest son can't manage his own diabetes, can't wipe his ass, needs help showering, has worsening anxiety and ADHD. I could go on.

As a parent I'm supposed to defer to that representation in the media or on Lemmy because "they're autistic bro." disgusts me.

My final takeaway. Fuck the DSM V for making Asperger's the same as Autism. It isn't. It hurts both parties but I'd argue it hurts Autistic people far more than Asperger's people.

[–] feedum_sneedson 6 points 5 months ago

Thanks for raising this, I get attacked here if I ever point out autism is a disability. I can only assume these people have literally never met anyone with anything but the mildest of Aspergers cases.

[–] TheFonz 5 points 5 months ago (2 children)

Thanks for sharing your experience. It sounds like you have your hands full and as a parent I can only empathize. I totally hear you about media representation missing the mark. We have some roadway to make. I'm surprised how many parent friends we have that are relatively clueless (even though I must admit, until this January when we got the diagnosis I was too).

My little one started group therapy about two months ago and I'm super grateful even though the journey ahead is still quite long.

On the Asperger's topic: I was under the impression Asperger's is no longer in use as a diagnosis and was folded into the ASD (Autism Spectrum Disorder). At least that's what we learned this year throughout the diagnosis process.

Stay strong brother (or sister)!

[–] [email protected] 2 points 5 months ago (1 children)

From a diagnosis and classification, Autism = Asperger's.

From a lived experience, Autism != Asperger's.

The latter has been validated by every expert I have talked over the years from doctors to therapists to education.

[–] TheFonz 1 points 5 months ago (1 children)

Ok. Interesting. I'll take your word at it.

[–] [email protected] 3 points 5 months ago

Please don't but pay attention to your support group as you move forward. You will learn there are a lot of people that genuinely care about your child and their future. The irony of course is the vast majority of these people make little to no money and are doing what they do because they love it.

[–] [email protected] 1 points 5 months ago (1 children)

As part of your research are you speaking with autistic adults?

[–] TheFonz 1 points 5 months ago

I have not yet. I would like to though

[–] [email protected] 5 points 5 months ago (1 children)

lol all that just to finish with a definitive statement about autism. Asperger's has always been an aspect of autism. Dr. Asperger was a Nazi scientist, responsible for deciding who among the neurodivergent would go to the gas chambers. the patients that he deemed to have "mild enough" autism to be used for labor, were called "Asperger's".

[–] [email protected] 1 points 5 months ago

It ain’t much but I’ll take it