S/O ASD, HFA adults speaking for low functioning children

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Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

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amother

Tue, Jun 06 2023, 10:13 pm

This always bothers me.
I have a cousin. He's 13 years old, extremely low functioning autism. Nonverbal. Not understandable. Not toilet trained. Hits his siblings. Bangs his head. Shmears fecal matter all over his bed.

His parents have spent hours, days, weeks researching everything. Diet change. Therapies. Vitamins. Drs. Floortime. Sensory Diet..

They do ABA because it's the only thing that has some result at all.

What really bothers me is when HFA Adults try to tell his parents to stop the ABA because they didn't appreciate it. Or they tell his mother what she needs to do and what she's doing wrong (everything) because they have the same condition as him so they understand.

Why is it assumed that a HFA adult can relate at all, to speak at all to the understanding of a severely low-functioning autistic child.

It bothers me. Because his mother is (imo) a superhero and she's getting criticized constantly for not embracing his autism, not letting him just live in his own world.

amother

Steel

Tue, Jun 06 2023, 10:17 pm

I mean, by that measure it seems like it’s even less likely a NT person would understand an autistic person who needs more supports than someone on the spectrum who needs less supports.

And in the cases I know, these are autistic moms of autistic children who want to stop the ideal being a “cure”. They seem the best positioned to understand. Not NT parents.

amother

Tue, Jun 06 2023, 11:01 pm

Im talking autistic adults criticizing a mother for using ABA to try to teach her child not to schmear fecal matter, after every other technique has been tried and hasn't worked.
Autistic adults telling this mother that she should appreciate his uniqueness and autism- the head banging until self-harm, the hitting and scratching his siblings. And that she has no right to prevent him from restrain him in anyway.

Stars

Tue, Jun 06 2023, 11:03 pm

It’s a widespread problem. Check out @theautismcafe on instagram

I think it was a dumb move to get rid of the Asperger’s diagnosis but who asked me

Last edited by Stars on Tue, Jun 06 2023, 11:04 pm; edited 1 time in total

amother

Maple

Tue, Jun 06 2023, 11:04 pm

I’ll be the one to say it. It’s because the HF ASD adults lack a certain level of mental capacity that’s why.

imasinger

Tue, Jun 06 2023, 11:07 pm

Mom should learn how to shut down her detractors.

The black and white thinking that is a hallmark of HFA means it's going to be hard to have any real conversation.

"Thank you for sharing your opinion, we're doing what we think is best, and this topic is closed for further discussion" might work.

amother

Steelblue

Tue, Jun 06 2023, 11:08 pm

Because you can't even stop using the term "HFA" when talking about autistic adults who have made it clear that's not an appropriate term, they probably assume you're ignorant about autism in general.

amother

Purple

Tue, Jun 06 2023, 11:12 pm

I see this problem with my special needs students. I work with some low functioning autistic children in the public school setting and some parents hire advocates who are HFA adults to come to the IEP meetings. These advocates can be the students worst enemy. They challenge and fight every service we try to provide.

amother

Steelblue

Tue, Jun 06 2023, 11:14 pm

"HFA" is not a thing, and someone who works in the field should know that.

imasinger

Tue, Jun 06 2023, 11:19 pm

amother Steelblue wrote:

"HFA" is not a thing, and someone who works in the field should know that.

That's another great example of black and white thinking, and focusing in on one's own agenda, rather making the effort to see OP's.

Substitute the word "neurodiverse", will that help you to get past the immediate irritant, and understand the point that's being raised?

amother

Grape

Tue, Jun 06 2023, 11:20 pm

So this is why they’re called autism spectrum disorders. It’s a wide spectrum of support needs. Because while it sounds like these adults have not had good experiences with ABA, doesn’t mean it’s not right for this child. Honestly, I would advise his mom to just tune out the best she can. Everyone has opinions on things, doesn’t make someone right about ABA just because they’re on the spectrum. Im against painting all autistic people with broad brushstrokes but it is possible that the poster who suggested that some of these people giving the mom a hard time may have trouble with black and white thinking is on to something.

amother

Steelblue

Tue, Jun 06 2023, 11:26 pm

imasinger wrote:

No, you're completely missing the point. People's language does reveal their biases. (Also, you don't seem to understand how the word "neurodiverse" is used.)

Nobody gets to speak for anyone else, but autistic adults who have been through ABA and have been traumatized by it should not be expected to stay silent either. And functioning labels do not justify abuse, so why is it relevant?

amother

Steelblue

Tue, Jun 06 2023, 11:27 pm

amother Grape wrote:

You misspelled "abuse."

ftm1234

Tue, Jun 06 2023, 11:31 pm

amother Steelblue wrote:

You misspelled "abuse."

Are you saying ABA is a form of abuse?!

amother

Steelblue

Tue, Jun 06 2023, 11:33 pm

ftm7246 wrote:

Are you saying ABA is a form of abuse?!

Possibly not all ABA, but the popular form of it, yes.

ftm1234

Tue, Jun 06 2023, 11:39 pm

amother Steelblue wrote:

Possibly not all ABA, but the popular form of it, yes.

Can you explain why you see it that way? Genuinely curious… As I’ve mentioned in a different thread, I’ve been working with autistic kids using this method and I don’t see how it’s abusive

ETA I’m working with kids on the level op described, if that matters