Stop Using High / Low Functioning Autism Labels

Stop Using High / Low Functioning Autism Labels | Sheepdog Says

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2 жыл бұрын

This is a ranty video about why we need to stop using high / low functioning autism labels. I don't normally rant like this on Sheepdog Says but I'm gonna keep doing it if people keep feeding me this **** about autism.
Context - Oli is 9 years old and in mainstream school. The local authority consider him High Functioning and therefore have said there are no schools or places that will support his needs, he can only stay in Mainstream with 'support'. That support is a TA, and a regularly reduced timetable. It results in him being forced to stay home half the week, we try to get him in more but then events happen which lead to his exclusion.
Yesterday for example he had a chaotic morning on the way in, the school was doing testing for his class, so his routine was disrupted, people were in his private space, he was rude and said silly things to his TA, struck her, and eventually when the class were told they were having a late break because of the exam, he launched the exams all over the floor and the class had to go outside while the teacher cleaned everything up.
From Oli's point of view everything was a chaotic mess and his class mates were getting a raw deal, so he did something. His classmates carried him around calling him a King, vindicating his actions as the right thing to do. The adults in the situation are obviously more concerned about the thought process that got him to that point and the fallout, which was me coming in to get him (mainly for the lashing out rather than for the exam debacle) but for the nth time I found myself trying to reason with him and 'talk him down' from an awful situation where he was screaming and shouting in misery because he was so overwhelmed and upset that everything is a mess, everyone hates him, he misses his friends, and that they appreciated him for disrupting the test.
This type of situation where I'm called in happens at least once a term now (although this test mess was a new one for all of us). He's on reduced timetables extremely often. I've asked for an alternative Autism focused school and been told they only cater for 'low functioning' autistics and it wouldn't be the right environment for him. That's unacceptable - for many reasons which I cover in this video. The situation is affecting his self esteem, mental health and general development. He's spending most of his time with 1:1 TA or at home with family who are 4-30 years older than him, or his 4 year old brother - so no peers, no one who actually gets what he is going through.
Similarly for me, a 36 year old autistic man - I too am struggling with work and being told I can and should do better/more because in the past I've been able to do X and Y and I'm just tired of people assuming things, or deciding abilities, it is damaging. More so for Oli than Me but it is still frustrating.
These labels need to be done away with. Autism isn't a line you place yourself on at one end or another. It's like a soup with different ingredients in it for each individual autistic person (that description was taken from Cy popps who did a wonderful comic on it here / 1377984520339734531 )
Support needs to be better tailored, Oli needs a calm environment that respects boundaries and structure. He can't learn to cope in a chaotic environment when he's also trying to learn to do everything else education expects of him.
Let me know if you've read this, as I wasnt sure it was worth writing 3500 characters

Пікірлер: 37

@sandwich2473 2 жыл бұрын

I thought you were absolutely spot on with everything that you said here It came through all completely coherently, and was all very reasonable and fairly concise honestly :o I wish everyone could see this because it really does need to be said

@SheepdogSays 2 жыл бұрын

Thank you, that’s a relief! Hopefully YT delivers the goods and boosts me haha.

@burco7626 2 жыл бұрын

Hi there, it's frustrating to say the least we are trying to advocate for our children and at times it seems like a never ending battle. We have to fight for everything and yes this low/high situation is a disgrace and our children are suffering.😡

@SheepdogSays 2 жыл бұрын

They are and it’s a mess.

@nathanboo7649 2 жыл бұрын

I talked to my assistant about this at some point and she, who is working and has worked with disabled individuals in two different jobs, including both "high and low functioning" autistic people, agrees that they're pointless even from a professional perspective. Telling someone you're high or low functioning tells them nothing about your needs, nothing about your strengths and weaknesses, tells nothing about how you best communicate, and tells nothing about who you are and how you act. It sets expectations and stereotypes that are not realistic for you specifically. You say high functioning, people think of savants who are amazing at everything but socially awkward. You say low functioning, people think of people who can't do anything academically or take care of themselves, and can't communicate in any way. It sucks, because 99.99% of the time, it is not like that. Everyone are individuals and I wish that people, instead of asking "how severe?" would take the time and effort to get to know the individual instead of assuming their needs. If you haven't already, I'd recommend checking out "The reason I jump" which is a book and now also a movie that's on Disney+.

@SheepdogSays 2 жыл бұрын

Cool will try and check that out on D+ in the week sometime. It does create a lot of assumptions about us.

@JonCarton Жыл бұрын

As a behavioral therapist working with children with ASD, ages 2-22 at skill levels, the term “function” is a useful tool for concise and professional communication between service providers. Although it is a generalization, like any other label, we use the term “high-functioning” or “low-functioning” with confidence that the person we are talking to is another professional who will not assume that this means the individual we are labeling has a high or low skill distribution across all categories. Competent service providers understand that all individuals have unique support needs, as well as potential outstanding skill strengths. It would be highly cumbersome and redundant to overview every nuance in skill profile each time you need to communicate about a client. We write individualized treatment plans based on ongoing and thorough functional analysis of the individual’s behaviors, which can be accessed and reviewed each time the need arises supporting the client. Also, we tend to only use “functioning” in ways that are relative to the individuals general range. For example, when a client engaging in high levels destructive or disruptive behavior (tantrums, aggression, etc.) we would report that we observed decreased functioning, meaning the client performed at a lower level than what an average session with them would look like. Conversely, a client who maintains a steady rate of engagement, without issue, would be considered “stable functioning”. The issue is not in the labels, but in the culture and assumptions. I think it is unwise to remove a label before universally agreeing on an appropriate replacement and provide proper education on the language we are using. We can remove the labels from our language, but unless we remove the harmful assumptions that people (not labels) make as part of a culture, the situation will remain the same.

@JonCarton Жыл бұрын

I also want to add, I’m not opposed to dropping these labels. I only wish to show the perspective of a professional in the science of behavior who provides treatment. I’d only wish that we replace these labels with ones that are not only more socially acceptable, but also higher quality from a scientific standpoint.

@SheepdogSays Жыл бұрын

@@JonCarton thank you for your considered response, it does make sense to have short hand phrases to give professionals a less clunky way to understand things but I assume a more detailed description is required and given somewhere along the way too? Otherwise can someone be receiving personalised care if they’re summed up as low or high? What set me off was more the phrases being used in education to exclude from resources. Socially too. Saying it “to our faces” feels a bit cold. Like being called high functioning when you’re unable to function sometimes feels invalidating. It also doesn’t define what functioning is by each persons capabilities. I get that replacing them is a challenge too.

@JonCarton Жыл бұрын

@@SheepdogSays thanks for your thoughtful reply! And yes, it is crucial that each client has an individualized record of skill distribution based on assessments and analysis. These records and personalized treatment plans are always cited and disseminated to anyone who will be taking responsibility for a client’s treatment. I completely sympathize with what you say about hearing it said to you by the generally uninformed public. I was diagnosed with ADD at 16. Since then, the label “ADD” was dropped and now it’s all considered “ADHD”, which can lead to assumptions that I’m the type of person who is bursting with aimless energy at all times of the day, when the reality is that I’m generally calm and hyper-inquisitive, preferring to stay on one subject of thought until I’m exhausted or satisfied with what I’ve found/completed.

@SheepdogSays Жыл бұрын

@@JonCarton it’s definitely more of a public understanding / stereotype / misunderstanding issue than a medical one isn’t it. I sympathise with professionals trying to do a job and finding people don’t like the words they use etc.

@hippychicken82 2 жыл бұрын

I think they are needed. I have 5 years old daughter who u would class as low functioning, she has limited understanding, is non verbal and still in nappies. she needs 24 hour care cannot be left at all as danger to herself. her special school (SLD) works on independent skills. they don't foucs on academic studies as the children who go there need that more , that needs to be a category for them children. thats not a bad thing for other children , and maybe its true, you child wouldn't suit that school. there needs to be a middle group where in our county there is (MLD) but places are limited for all children so only the 'more severe ' will be able to access. children who struggle with mainstream but think the council stating the low and high functioning is the problem not that their are. there is a clear difference between a child who is non verbal no understanding, in nappies and need one to one at all time and access curruulm that promotes independence and a child who is classed as 'high functioning ' has understanding, toliet trained need some one to one support. (I'm not saying they don't struggle at all) I do understand ur frustration thou and councills are awful and try and give the least, SEN is horrible and goverment cuts are awful and I'm sorry to hear of ur situation, I don't think it's as simple as just doing away with the labels what we actually need is a Adequately funded speical educational needs department and the resources ie special schools that can cater for all children to give them the best opportunities. and unfortunately I don't think that will ever be something we have especially not with current government.

@emilygilbert9892 2 жыл бұрын

Totally agree, it is hard to summarise a child though when talking with professionals, and they do often ask, it does rule you out of loads of stuff, unlawfully so I think, but the whole world of autism, labels, diagnosis etc needs overhaul, probably in 60 years it will be totally different. We had the same issue re schools, and then they get sent to various independent or alternative provisions which often group autistic and SEMH kids together which can be very problematic. I think schools are the problem they need to make mainstream much more inclusive so it can keep the kids in there, maybe in attached units etc I dont know what the answer is but it has affected us hugely in a negative way. My kids school On Track is in your area I think, it has different branches, in Devon there are three sites but there are issues when autistic and SEMH kids mix, but they do try to make it work, it could be worth looking at, they do do GCSEs etc and a lot of the staff are awesome, its the best place we have had so far and it does take kids who dont seem to fit elsewhere, but generally I dont like recommending places cos whenever I do the person usually has bad experiences so I stopped!x

@emilygilbert9892 2 жыл бұрын

On Track Wisbech, looks like they might not yet do science GCSE but hopefully will do, the ones in Devon have expanded hugely and now doing lots of GCSES, but it depends who the kids are, in Devon there are specific sites for autistic kids, the one in Wisbech is smaller and might be mainly SEMH do might not be suitable but definitely visit as many as you can. they prioritise mental health which is the big worry for these kids and there arent many of these schools around.

@SheepdogSays 2 жыл бұрын

Thank you for this I wouldn’t have looked at Wisbech but it could be useful. We’ve been looking at a mainstream school with an SEN team etc and are hopeful they’ll be accommodating enough. I hope the future is much better for autistic children!

@crazycat1166 2 жыл бұрын

I've experienced a very similar thing when trying to access mental health support. Suicidal thoughts trigger warning. In march I self-presented at a mental health hospital telling them I felt unsafe at 2am, I literally begged them to admit me for my own safety..... They refused and told me I "wasn't mentally ill enough"and "I was coping well" and therefore discharged me at 4am. Two weeks later I ended up being admitted to A&E after a serious overdose. Only then was I actually listened to and taken seriously leading to proper support being implemented. Obviously I wouldn't want anyone to follow that path but it really highlighted the huge gaps in the mental health system and showed they will only act and offer support when they are backed into a corner. Anyone that willingly seeks out their help is written off to be "attention seeking". So yeah I feel you, the system sucks!! I know that's not much help but sometimes just realising you're not alone can offer some consolation. I really hope you manage to get the support needed for yourself and Ollie

@SheepdogSays 2 жыл бұрын

That sucks too cat. Sorry to hear they didn’t take you seriously. It is frustrating knowing you have to fight to convince them to believe you before something bad happens. I hope you’re in a better position now!

@crazycat1166 2 жыл бұрын

@@SheepdogSays yes thanks my medication has been adjusted and I now finally have a good support system in place. It's just sad it took me to get to that point for them to listen. It seems the system only puts resources in at crisis point instead of placing them in place to prevent people reaching crisis in the first place! P.S I forgot what my you tube user name was for a minute and was super confused why called me a cat 🐱🤣🙈🙈

@SheepdogSays 2 жыл бұрын

@@crazycat1166 good to hear. Haha sorry for the confusion! Everything seems to be wait until crisis point these days doesn’t it. Not nice. The country needs a rebuild.

@oknahh Жыл бұрын

The level is more important to identify now than it was in the past. With the change to the dsm criteria theres an even bigger difference in how they are able to funtion independently. Some may never be able to live independently,potty train,or cross the street without help while others can go off to college cook and bathe themselves both autistic but not the same,they need a distinction between them to meet the persons level of care needs. It's not about low or high value as a person its about how they funtion independently in society.

@SheepdogSays Жыл бұрын

I do appreciate what you’re saying, the issue is that they use it as a barrier to accessing support that is needed. It may be that someone can’t live independently but could go to college in theory with support but they’re not encouraged to. Or in the reverse, can’t get support with living because they’ve shown ability to access education. The issue I had with my son was that he was struggling massively at school and no amount of effort on their part was making a difference but he was being classed as too ‘high functioning’ to get any support from the system despite being unable to cope with the demands of mainstream. It was also disheartening to hear the LA say that I wouldn’t *want* my son to go to *that kind of school* as though it was lesser when the idea is meant to be that these children are receiving an education catered to their needs. When I recorded this I was rather frustrated that there didn’t seem to be a solution that would help him get the level of support he needed because labels seemed to be placing him in a purpose built stalemate. But fortunately this term he has had an amazing turnaround with his new teacher. I need to do an update vlog really!

@oknahh Жыл бұрын

@@SheepdogSays agreed most ppl with disabilities are capable of more than others may be aware of. It's deff a matter of getting them the right support find the best way to reach them so they can learn,be encouraged, be proud of themselves. I'm sure u already did this but an iep can really help the school to better help yr child as an individual, The school they weren't wanting yr son to go to may not of been unable to provide education further than he's already at, it was likely geared toward teaching basic life skills ( dressing,handwashing,dangers,safety,tossing a ball,ect.) so sending him could've held back his potential. I'm glad u found the right type of help. I understand that frustration my sons on the other side of the spectrum and it's difficult to find help that can meet his care needs but luckily at school he has a great group of teachers that really help him to thrive. Great teachers really do make a difference :)!!

@davidbridge2363 2 жыл бұрын

Good evening I am Dave I have autism 40 years old I think the best course of action is if you’re not getting anywhere with the local authority is to go to your MP Sorry if the spelling and certain words haven’t come out well but not that at spelling so I have to speak into the microphone I live in the community in my own flat wasn’t diagnosed to mid 20s so have suffered quite a lot no one thought that I would ever live on my own used to live in supported living but made the decision to go on my own now I have direct payments in my local area of Somerset pay the support workers I like and manage fine sorry if I ranted a bit kind regards Dave

@SheepdogSays 2 жыл бұрын

Hi Dave thanks for messaging, wording was fine and all was clear. You’re welcome to rant as much as you like (though it doesn’t feel like you did here) - you’re right I should escalate to MP level if the LA don’t help. Other peoples expectations aren’t our realities and these labels create far too many restraints on peoples lives.

@matthewbeardsworth1935 2 жыл бұрын

I completed: Developmental Test of Visual Motor Integration (VMI) 6th Edition and scored extremely low. I was wondering what people think of this test?

@killuanatsume Жыл бұрын

I have autism and I still think we should use the terms

@SheepdogSays Жыл бұрын

That’s fine, I knew people would have different feelings on this and it’s all valid. For me, when you ask for help and someone says “you’re so high functioning, you don’t need this” that is harmful to people. Or “they’re low functioning, they won’t appreciate this” etc.

@Peach_VOxo 2 жыл бұрын

❤️

@powderandpaint14 2 жыл бұрын

Maybe what they mean is the difference between someone who only has a diagnosis of autism and someone who has a learning difficulty (or I think it's known as an intellectual disability in the US. So an IQ below 70). There are shools.that are specifically for autistic children, or schools that have an autism unit aren't there? I guess it depends where you live.

@SheepdogSays 2 жыл бұрын

The issue with that is IQ is a very loose and vague way to measure someone’s abilities. It writes someone off for not being able to perform in a specific test designed to work out peoples ability to complete work related logic tasks. It discards people based on a number and prevents others who need support from getting it because the number is higher.

@powderandpaint14 2 жыл бұрын

@@SheepdogSays that's true.

@theac8801 2 жыл бұрын

Oh dear. Take them to court over his ECHP you’ll win the families always win. This is bullshit for him SEN schools CAN get him to where he wants to be. I’ve been through all of this myself. There are schools in the area they just don’t want to pay for it. You seem really stressed, you need a break. I don’t think it’s the high/low functioning labels as the problem it’s just the lack of support for all autistic people and their families. We all struggle but in completely different areas and people who seem to function in a normal way get less because support because our needs are more complex emotionally than someone who struggles with self care. You wouldn’t want to put someone who is incapable of basic things such as washing themselves or interacting with someone who is highly social and shows that they would be able to live without intense basic support as it would be unfair. It’s also kind of rare to have someone with just autism as it is normal to for it to be comorbid with a learning disability or mental health issues which make very different primary needs. Don’t get too stressed about what the label is but try and change the connotation behind it and show what it means for Ollie. Did you get any legal support from Liaise? There’s no point of being in a mainstream school if he can’t attend it. I don’t understand what the LA are going on about they are simply lying to you. There are quite a few schools he could go to around here and he would fit in them too.

@SheepdogSays 2 жыл бұрын

We have spoke to Liase in the past, I probably need to go back to them too. I am trying to work out who the lady we spoke to previously was as she was the one who said about the schools and was more dismissive of our chances due to her perception of his functioning ability. He has a behavior panel meeting on thursday too which is a concern. I wouldn't even really know how to take the LA to court at this point tbh. I feel like they'd say what the hell, we've been working hard etc etc. I understand what you're saying regarding the labels, but this is the problem. We can't be boxing in 'high' people and 'low' people based on random things they can and can't do. The label removes any nuance at all. It doesn't dictate whether any of these people can live alone, work, drive, get married, have kids, create, build, change the world, or not if they'd prefer. Yes there are co-morbidities that may completely dent someone's chances of even being able to breath without a machine, or eat without tubes, and so many extremes, but whether or not they're also autistic should not suddenly label them a low functioning autistic. We wouldn't call them a low functioning allistic if they had these disabilities and weren't autistic and if support is only offered to autistic people with severe comorbidities then they're not really offering any support to autistic people at all. I feel like i'm ranting, sorry if this comes across wrong as its meant calmly. I am pretty stressed though you're right. Unfortunately there's no breaks to be had. I literally had a week off about 8 days ago. I've got Thursday off so fingers crossed I can enjoy it (though I may also have covid would you believe it! ahhh)

@theac8801 2 жыл бұрын

@@SheepdogSays you could call try and call an emergency review then appeal his EHCP if they haven’t moved his provision to SEN? I had a really useful woman named Carrie-Ann and in the end we pushed the council into a corner so they had to do what we wanted. Maybe the school can tell the LA they can’t meet his need. I had a few behaviour panels when I was little and they were basically a fancy name for a meeting where school and my mum agreed that they really wanted me to behave but no one was going to do much about it other than create paperwork for themselves. I get why you are so annoyed about the labels but I don’t think they define you as a person. It’s not the label that is dictating you it’s a combination of your ability and resources. The spectrum is very broad and we kind of need to group people a little so they can get at least some support. No one will ever fit in a box though because we are individual and it annoys me too. When I was little I used to go around telling everyone that I had a yatch and they would think it was some luxurious thing from the world of the rich and famous when in reality it was a small 80s weekend boat on the river Nene. If I were to go into detail about the boat people would get the picture of what it was like but if I didn’t and advertised it just as a yatch Brad Pitt would be extremely disappointed. They have the same label but are different products. (Bad analogy I know). We have to be split up bit while still being united so both ends of the spectrum get the right support. High functioning autistic people are still autistic and need different support, not less support which is what I have found (like my yatch still being a boat but it has a different demographic). If we stop categorising people we will begin to loose more than we will gain from it even though the full nuance is missed as they will go for the one size fit’s approach for autistic people and that won’t work either.