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

[Anonymous]

Anonymous wrote:

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.

I never thought of the abuse aspect. I know a mom of a profoundly disabled child (not on autism spectrum) who always wanted him in public general ed with supports (like a self contained class in general ed that pushed into some general ed subjects) because like you say, her goals were socializing and normality for him. That said I don’t think you are necessarily getting the point here which is that trying to shy away from saying “profoundly” or “severely” autistic doesn’t do much for anyone.

[Anonymous]

Anonymous wrote:

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.

I would hope IEP team has someone on it that knows what they’re doing and would never write anything like this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

I would hope IEP team has someone on it that knows what they’re doing and would never write anything like this.

What part of the description of the child's needs do you think shouldn't be in the IEP?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

I never thought of the abuse aspect. I know a mom of a profoundly disabled child (not on autism spectrum) who always wanted him in public general ed with supports (like a self contained class in general ed that pushed into some general ed subjects) because like you say, her goals were socializing and normality for him. That said I don’t think you are necessarily getting the point here which is that trying to shy away from saying “profoundly” or “severely” autistic doesn’t do much for anyone.

If you have never thought of the enormous risk of sexual abuse that nonverbal and minimally verbal people face, you probably aren't someone loving and caring for someone with a significant disability on a day to day basis, either a professional or a parent. At least I hope you aren't.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

I would hope IEP team has someone on it that knows what they’re doing and would never write anything like this.

Why? because it makes you uncomfortable? Because it has actual useful information?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

I would hope IEP team has someone on it that knows what they’re doing and would never write anything like this.

Why? because it makes you uncomfortable? Because it has actual useful information?

DP. Using a one or two word descriptor like “profound”, “classic” or Level 2 is meant to be a shorthand for people in the know. An IEP or other report will fill in the other information required. Trust me, these IEPs are tomes.

[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.

If I read that I’d think oh geez they had the OT write it.

[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.

If I read that I’d think oh geez they had the OT write it.

I would be SUPER annoyed at “seemingly no trigger” and the idea that there is only one sensory toy that ever works. That sounds like something a poorly trained teacher or aid would write, not a professional.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

I never thought of the abuse aspect. I know a mom of a profoundly disabled child (not on autism spectrum) who always wanted him in public general ed with supports (like a self contained class in general ed that pushed into some general ed subjects) because like you say, her goals were socializing and normality for him. That said I don’t think you are necessarily getting the point here which is that trying to shy away from saying “profoundly” or “severely” autistic doesn’t do much for anyone.

If you have never thought of the enormous risk of sexual abuse that nonverbal and minimally verbal people face, you probably aren't someone loving and caring for someone with a significant disability on a day to day basis, either a professional or a parent. At least I hope you aren't.

Ok sure. You’re still missing the point which is that labeling a kid “profoundly autistic” is not some kind of insult to be avoided. Who knows what OP actually wants to write about accomodations and placements. Probably something with little insight since they are more concerned about being PC.

[Anonymous]

Anonymous wrote:

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.

If I read that I’d think oh geez they had the OT write it.

I would be SUPER annoyed at “seemingly no trigger” and the idea that there is only one sensory toy that ever works. That sounds like something a poorly trained teacher or aid would write, not a professional.

Agreed! I’m looking at that description and immediately wondering if the behavior is maintained by access to this special toy. I’m immediately doing a preference and reinforcer assessment, including said toy. Highly likely that toy isn’t reinforcing anything except unwanted behavior.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

If I read that I’d think oh geez they had the OT write it.

I would be SUPER annoyed at “seemingly no trigger” and the idea that there is only one sensory toy that ever works. That sounds like something a poorly trained teacher or aid would write, not a professional.

Agreed! I’m looking at that description and immediately wondering if the behavior is maintained by access to this special toy. I’m immediately doing a preference and reinforcer assessment, including said toy. Highly likely that toy isn’t reinforcing anything except unwanted behavior.

I cannot tell you how many school reports I got telling me “out of the middle of nowhere and with no trigger, Larlo did X!” I ended up so fed up that I actually told them to stop calling me unless they were calling to report how they implemented the BIP including noting the antecedent or whether they just did not see the antecedent.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

If I read that I’d think oh geez they had the OT write it.

I would be SUPER annoyed at “seemingly no trigger” and the idea that there is only one sensory toy that ever works. That sounds like something a poorly trained teacher or aid would write, not a professional.

Agreed! I’m looking at that description and immediately wondering if the behavior is maintained by access to this special toy. I’m immediately doing a preference and reinforcer assessment, including said toy. Highly likely that toy isn’t reinforcing anything except unwanted behavior.

I cannot tell you how many school reports I got telling me “out of the middle of nowhere and with no trigger, Larlo did X!” I ended up so fed up that I actually told them to stop calling me unless they were calling to report how they implemented the BIP including noting the antecedent or whether they just did not see the antecedent.

Haha the ever- elusive antecedent!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

If I read that I’d think oh geez they had the OT write it.

I would be SUPER annoyed at “seemingly no trigger” and the idea that there is only one sensory toy that ever works. That sounds like something a poorly trained teacher or aid would write, not a professional.

Agreed! I’m looking at that description and immediately wondering if the behavior is maintained by access to this special toy. I’m immediately doing a preference and reinforcer assessment, including said toy. Highly likely that toy isn’t reinforcing anything except unwanted behavior.

I cannot tell you how many school reports I got telling me “out of the middle of nowhere and with no trigger, Larlo did X!” I ended up so fed up that I actually told them to stop calling me unless they were calling to report how they implemented the BIP including noting the antecedent or whether they just did not see the antecedent.

Haha the ever- elusive antecedent!

Honestly I totally understood if they didn’t see it. But eventually I couldn’t stand to listen to them say “OMG it was just out of the middle of nowhere unprovoked!” No matter how many BIP meetings and FBA efforts, always the same. I am so so glad not to be in that school anymore.