What’s your experience with “profound autism”? ❤️‍🩹 #autism #autistic #autismawareness #nonverbal

[KazooPigeon-ge]

Thing is, it's gonna get a name whether it has an official one or not. I much prefer "profound autism" to "real autism", "non-functioning autism", or "r-slur", the terms I hear more often from people who don't know the actual name

[AWood-cp]

With a son who is "profoundly autistic" we find that people can restrict him because of the weight of those words and with a husband who has been described as "much less autistic" his needs are not taken serriously and even mocked for being "immature" or "not manly". In our family, we like to use the terms that our son is high support- low masking and my husband is low supprt-high masking. He feels it starts needed conversation around masking in adults. This is what works for our family and ive learnt from my husband and son that its important to listen to the autistic people in our live and how they individually like to be represented. Theres no right or wrong answer- that old saying of "Once youve met one autistic person, youve met one autistic person!"

[chapteronefrog]

Disability Services: "We're here to help"

Also Disability Services: "We can't help you, you need too much help."

[doublejoywilson]

i find that it’s usually autistics who are able to communicate and don’t need full time care who object to terms like profound autism or functioning labels. and while i understand why that may be, i have run into quite a few people who feel calling themselves high support needs / low functioning / severe / profoundly autistic to be more helpful than it is hurtful to them, and i get nervous that their perspectives get drowned out in advocacy simply because they inherently struggle more with communication.

[thebeardednurse]

I am advanced nurse practitioner with autism. There are many mental health conditions with varying degrees of impact. Autism has a spectrum and it is acceptable that there will be people at either end. A definition such as “profound autism” is useful to colleagues and patients to understand and to allow us to have an understanding of the expected or real needs of that person. Keep up the good work ❤

[LTG-Carol]

I think this is a hard one Kaelynn,
I think the problem is less in the words we use, and more in how our ablest society is weaponizing the terms against us. Too often I hear that my kids or I don't "Look" or "Seem" autistic. I wish our terminology focused more on the way the world impacts US versus our deficits.

I'm a 49 year old Autistic woman who is raising 15 & 17 year old Autistic kids. We are all dx as Level 1. My friend is Level 3 but she was diagnosed as an adult. She has selective mutism & intermittent catatonia.

She and i are both denied services for similar reasons. I'm not autistic enough and she's "Too autistic" I never expected to be living in my Goldilocks era...

[sigasaurusrex]

What some people misunderstand is that humans do communicate through language, which is why we have an ever expanding vocabulary. The points are valid-- we are already seeing countries prevent autistic immigrantion because it is a "burden on the health system", so these terms MAY be harmful. However, much like the terms "fat" or "retard" their weight is socially driven, not medically. When used descriptively, it has value, but when socially warped, it may become a term for discrimination.

*thank you for taking on these difficult topics. I'm sure its uncomfortable, but it's incredibly valuable.

[mikehollywood]

I almost burst into tears from this video. Both my brother and sister have severe and profound autism. So many of the debates around autism completely ignore people like my family who had the help of "Autism Speaks" before anyone thought they were a hate group. They helped us know our rights for my family members because no one would help us. Now seeing the autistic spectrum community actually acknowledging that we exist is pretty profound in itself.

[noor-snj]

Hi I have autism and adhd and seeing you own autism helps me be a better me

[erinrow]

As an autistic adult woman who masks well and has a great support team, I see the value in the labels as an aid to general communication. I think moving on to the more individual needs on a person by person basis it’s important. However it’s also important to be able to communicate some things quickly and clearly once there is an accepted definition, the risk coming from poorly defined labels being used against someone. It’s a very complex discussion and I think you’ve broached it in a very balanced way. ❤

[angelalovell]

I think it's important that we remember that words change their meaning and usage depending on the context in which they appear. We have to be willing to be flexible in our understanding, which can be extremely difficult for neurodivergent and neurotypical people alike.

[Hikaribloo]

My brother fits under the “profound” autism spectrum with the way you explained it, although I do agree with the second school of thought that it focuses too much on the negatives, I wholeheartedly believe my brother would be higher functioning if he received adequate care but I love him to death just the way he is and wouldn’t trade it for the world

[CalmViolince]

I think there should definitely be different terms to describe how someone's autism presents. When meeting someone, when receiving care, when in a public setting, when needing to communicate, it's very helpful to know where the autistic person is at and what things to be mindful about, if needed. The problem isn't necessarily the term, it's how people judge them. People can be prejudiced and judgemental of someone described as having "profound autism" while being annoyed and dismissive of someone described as having "mild autism." There needs to be terms to describe the situation but it seems like a losing battle because of how others (mostly people who aren't autistic) interpret whatever term we choose. I think we wouldn't have this much of an issue if it wasn't for stereotypes and discrimination. To someone who isn't autistic and doesn't know much about it, even "high masking and low support needs" can make them think "oh so it's not that bad then, you're fine, it doesn't really affect you."

[lxix_lxix]

As a special ed teacher, an autistic person, and sibling of someone who is teetering on the edge of that profound category; I've always felt very torn about that term. On the one hand, it's helpful for identifying that someone may need more assistance and allows them access to what they need in order to reach or get as close to complete independence as possible. HOWEVER, I have absolutely seen this term be incredibly limiting for many students, my sister included. I think it's one of those things where there just needs to be a better term for it. What I usually end up doing rather than saying "advanced/profound, " I'll say they're "low/high support" or I'll occasionally use descriptors of what the individual does or needs. So to describe one of my students i could say "They're independent in the bathroom and during mealtimes but they use an assisted communication device and have some difficulties out in the community when they can't control their environment." Which is, of course, a lot more words than just "profound/advanced" but it's certainly better than nothing.

[beacreates]

As a high school teacher, I really appreciate when the level of autism is distinguish on the class rosters. There is a HUGE difference between teaching someone with mild autism vs profound autism. I have quite a few students with mild autism, and they are able to function in my classroom with only a little bit of extra help (sometimes none at all), but my profound autism students NEED extra support in my classroom. Just saying "autism" on the rosters isn't very helpful. There needs to be some kind of differentiation so I can accommodate as needed, as opposed to just blind guessing.

[brencislloyd]

Honestly I think all the concerns are very valid while at the same time the positives are ALSO valid. I dont think this even needs to be an argument or debate but more of a conversation. Because in the end we, aside from anyone who is actively doing ableist harm, are all trying to get to the same point of "different autistic people with different needs levels need to be acknowledged in a way that is helpful without causing them a loss of rights"

I think a big part of the pushback against functioning labels and "profound" vs "regular" or "mild" is also that things like that have been used to deny people with "high function" and "mild" autism the help they need because "oh but you can just keep masking and you can speak unlike Bobert sitting next to you who has "high needs" and doesnt talk. Youre fine"

In theory i think functioning labels and "profound autism" are very helpful because they can also help us within the autistic community advocate for each other with differing needs. Unfortunately a lot of the time these terms end up getting bastardized by ableist allistics and i think THATS when we start having problems.

Tl;dr: imo its less the words used or desire for distinctions themselves that are the problem but how some people end up using them to harm us.

[KANNIXING]

I feel like there’s a better way to word it without making anyone seem or feel like they’re less than. On that same note it’s good to acknowledge people with different, and especially higher, support needs than ourselves.

[PRTTYHMACHINE]

Im autistic (diagnosed at age 3). I also have 1000 hours of tattoos on my body i did without any-one helping me. I am also unable to live by myself do to my struggles with autism and mental conditions and disorders.

Unfortunately, I don't fit what uneducated people think autistic individuals look like (other than the tattoos im very fit and told im conventionally attractive.) and have faced discrimination from boss's and coworkers at all 11 jobs ive had in my 26 years of life. All of whom refuse to acknowledge my struggles and say I'm lying about being autistic, and then those same coworkers harassing and bullying me for any display of autistic traits and struggles.

im not against people with even more language deficits than me getting support they need. But It would be nice to have people not ignore my struggles because i can read and write, because I'm running out of room on my body explaining their ignorance.

Thnk u for coming to my ted talk!!

[crit-c]

The primary issue is not the terms but the lack of knowledge and therefore uninformed response from many parts of our society, including those that are supposed to help people with autism. My feeling is that if other words were used, while initially it might get a less reactionary response, it still won't solve the issue of ignorance and will inevitably devolve back into the same reactionary thinking that hurts so many of us.

What we need is more awareness, primarily directed at organizations that are meant to provide help, and accountability for those organizations when they cross the line. Yes that includes publicly calling them out because a standard needs to be set and for some of these organizations they will not change until their revenue is threatened.

[smawrtygowty]

Also the word profound and these categories makes it that accommodations are applied to “those who needs it most” vs “those who don’t” it’s a short cut to excluding a portion of autistic individuals and denying them accommodations that they need. It’s like the insurance thing what not they use it to “help” know needs but in short they just want to use it as a means of providing support or not. If it wasn’t used as a means of dictating who get to accommodations it wouldn’t be as negative in my opinion but it is which is why a lot of us don’t like the categories of such.