What’s the “right way” to say “profound autism?”

[Anonymous]

OP try reading up on the Autism wheel:

https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/

[Anonymous]

I still don’t think people really truly understand what “profound autism” really is. For our family member it includes the fact that they will likely never fully potty train, care for themself in any meaningful way or be left alone for any length of time. And this person is already close to being adult age so the likelihood that things will all the sudden turn a corner is highly unlikely. I can assure you, most folks dealing with actual profound autism are not offended by using that term. It seems everyone else is, but not people who are actually dealing with it.

[Anonymous]

Anonymous wrote:I still don’t think people really truly understand what “profound autism” really is. For our family member it includes the fact that they will likely never fully potty train, care for themself in any meaningful way or be left alone for any length of time. And this person is already close to being adult age so the likelihood that things will all the sudden turn a corner is highly unlikely. I can assure you, most folks dealing with actual profound autism are not offended by using that term. It seems everyone else is, but not people who are actually dealing with it.

Exactly. OP clearly is more interested in getting brownie points than actually discussing anything.

[Anonymous]

Anonymous wrote:I still don’t think people really truly understand what “profound autism” really is. For our family member it includes the fact that they will likely never fully potty train, care for themself in any meaningful way or be left alone for any length of time. And this person is already close to being adult age so the likelihood that things will all the sudden turn a corner is highly unlikely. I can assure you, most folks dealing with actual profound autism are not offended by using that term. It seems everyone else is, but not people who are actually dealing with it.

But how would OP's topic -- comparing the school experience of students like your child to autistic kids in gen ed -- remotely helpful or revealing? The specific language the OP uses is the least of her concerns.

[Anonymous]

Anonymous wrote:A parent friend with such a kid says "low functioning autism"

Well that's a pretty terrible way to describe it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I still don’t think people really truly understand what “profound autism” really is. For our family member it includes the fact that they will likely never fully potty train, care for themself in any meaningful way or be left alone for any length of time. And this person is already close to being adult age so the likelihood that things will all the sudden turn a corner is highly unlikely. I can assure you, most folks dealing with actual profound autism are not offended by using that term. It seems everyone else is, but not people who are actually dealing with it.

Exactly. OP clearly is more interested in getting brownie points than actually discussing anything.

it’s actually more offensive to sugar coat needs and make it sound like a child is more functional than what they actually are. It helps no one. I don’t know why people don’t want to deal with reality.

[Anonymous]

Anonymous wrote:

Anonymous wrote:A parent friend with such a kid says "low functioning autism"

Well that's a pretty terrible way to describe it.

But accurate.

[Anonymous]

The way people try to describe the functional level is getting absurd. Using paragraph long round about ways to make it sound clinical and politically correct. And leaving those who read it with little idea of the ACTUAL level of the person. I really just don’t get it? Who is it actually for?

[Anonymous]

Anonymous wrote:The way people try to describe the functional level is getting absurd. Using paragraph long round about ways to make it sound clinical and politically correct. And leaving those who read it with little idea of the ACTUAL level of the person. I really just don’t get it? Who is it actually for?

For most people, a single word descriptor -- "level 2" or "needs moderate support" doesn't actually tell me anything about what the student needs. Yes it's more words, but saying that they need X to engage socially, have Y sensory sensitivities, and Z is how they communicate actually tells me how to provide support.

[Anonymous]

Anonymous wrote:I still don’t think people really truly understand what “profound autism” really is. For our family member it includes the fact that they will likely never fully potty train, care for themself in any meaningful way or be left alone for any length of time. And this person is already close to being adult age so the likelihood that things will all the sudden turn a corner is highly unlikely. I can assure you, most folks dealing with actual profound autism are not offended by using that term. It seems everyone else is, but not people who are actually dealing with it.

Well said.

—pp with DD who checks all those boxes

[Anonymous]

Anonymous wrote:

Anonymous wrote:The way people try to describe the functional level is getting absurd. Using paragraph long round about ways to make it sound clinical and politically correct. And leaving those who read it with little idea of the ACTUAL level of the person. I really just don’t get it? Who is it actually for?

For most people, a single word descriptor -- "level 2" or "needs moderate support" doesn't actually tell me anything about what the student needs. Yes it's more words, but saying that they need X to engage socially, have Y sensory sensitivities, and Z is how they communicate actually tells me how to provide support.

I think you missed my point entirely because i’m actually agreeing with you-I’m saying that saying something like level 2 and using sentences like “Is prone to irritation due to sensory needs” doesn’t tell me what I need to know as someone working with them-I would much rather read “throws themselves on the floor with seemingly no trigger and requires a very specific sensory toy that will be provided to you to calm down”. It’s all too clinical and lacks the actual information people need to help the person.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The way people try to describe the functional level is getting absurd. Using paragraph long round about ways to make it sound clinical and politically correct. And leaving those who read it with little idea of the ACTUAL level of the person. I really just don’t get it? Who is it actually for?

For most people, a single word descriptor -- "level 2" or "needs moderate support" doesn't actually tell me anything about what the student needs. Yes it's more words, but saying that they need X to engage socially, have Y sensory sensitivities, and Z is how they communicate actually tells me how to provide support.

I think you missed my point entirely because i’m actually agreeing with you-I’m saying that saying something like level 2 and using sentences like “Is prone to irritation due to sensory needs” doesn’t tell me what I need to know as someone working with them-I would much rather read “throws themselves on the floor with seemingly no trigger and requires a very specific sensory toy that will be provided to you to calm down”. It’s all too clinical and lacks the actual information people need to help the person.

Nobody should ever write a report that says any of this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The way people try to describe the functional level is getting absurd. Using paragraph long round about ways to make it sound clinical and politically correct. And leaving those who read it with little idea of the ACTUAL level of the person. I really just don’t get it? Who is it actually for?

For most people, a single word descriptor -- "level 2" or "needs moderate support" doesn't actually tell me anything about what the student needs. Yes it's more words, but saying that they need X to engage socially, have Y sensory sensitivities, and Z is how they communicate actually tells me how to provide support.

I think you missed my point entirely because i’m actually agreeing with you-I’m saying that saying something like level 2 and using sentences like “Is prone to irritation due to sensory needs” doesn’t tell me what I need to know as someone working with them-I would much rather read “throws themselves on the floor with seemingly no trigger and requires a very specific sensory toy that will be provided to you to calm down”. It’s all too clinical and lacks the actual information people need to help the person.

Nobody should ever write a report that says any of this.

Certainly an IEP present level should have that level of detail.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The way people try to describe the functional level is getting absurd. Using paragraph long round about ways to make it sound clinical and politically correct. And leaving those who read it with little idea of the ACTUAL level of the person. I really just don’t get it? Who is it actually for?

For most people, a single word descriptor -- "level 2" or "needs moderate support" doesn't actually tell me anything about what the student needs. Yes it's more words, but saying that they need X to engage socially, have Y sensory sensitivities, and Z is how they communicate actually tells me how to provide support.

I think you missed my point entirely because i’m actually agreeing with you-I’m saying that saying something like level 2 and using sentences like “Is prone to irritation due to sensory needs” doesn’t tell me what I need to know as someone working with them-I would much rather read “throws themselves on the floor with seemingly no trigger and requires a very specific sensory toy that will be provided to you to calm down”. It’s all too clinical and lacks the actual information people need to help the person.

Nobody should ever write a report that says any of this.

They absolutely should. Let’s all agree that providing the very best services is everyone’s main goal. The more someone can prepare and be ready to help someone comes from having the clearest information about their functioning level. I cannot tell you how many providers have to constantly change their entire plan for assessment/treatment because they weren’t given accurate information about a child’s level. For example describing a child as “verbal” because they scream (but the child was very clearly nonverbal). Preparation time spent to provide the best services goes out the window when people can’t truly be honest about someone’s level of functioning. All it does is delay/cause frustration for everybody involved.

[Anonymous]

Anonymous wrote:Op here:’groups of people. Trying to give “different presentations of the spectrum” a comparative voice instead of lumping anyone with an ASD diagnosis in one bucket.

In context - it’s about school: How can you Compare the school experience of someone “severely impacted” with high support needs and non verbal in a specialized setting vs the experience of someone with low support needs in a mainstream grade level classes?

It's really problematic when you confuse setting and level of disability. I know nonverbal and minimally verbal kids with autism, and intellectual disability who are well served in general education classes, with alternative learning outcomes and substantial special education support. It's the best place for them, because their highest priority goals are communication, social, and independence and gen ed is the most effective place to practice those skills. It's also the best place for them because nonverbal and minimally verbal kids are safest in places with lots of verbal witnesses who don't have power over them.

I know highly verbal college bound kids with autism who are well served in specialized school with no general education students in the entire building, because they learn best in environments with less stimulation, and because their highest priority goals are developing self regulation, executive functioning, and remediating dyslexia, something that specialized environments often do well. They have the verbal skills to protect themselves, so the safety concerns aren't there.

I also know other kids who aren't well served in their educational environments, in part because the school system decided that kids with certain IQ's or who need certain supports always belong in certain places.

The idea that autism occurs along a linear spectrum, and that your position along that spectrum determines how restrictive the educational environment you receive, is a really dangerous thing. Sadly, as a special educator, I have taught a number of kids who experienced sexual abuse in contained environments where they were placed because of this idea.