Bumping this up, just briefly. A local engineering firm is working at developing a tool for the early biometric diagnosis of Autism. Story here
What the device will measure is how a baby's eyes will react to a point of light. If this is approved, it will be the first way to give objective verification of autism so that early therapies can be prescribed.
Bumping this up, just briefly. A local engineering firm is working at developing a tool for the early biometric diagnosis of Autism. Story here
What the device will measure is how a baby's eyes will react to a point of light. If this is approved, it will be the first way to give objective verification of autism so that early therapies can be prescribed.
Hope it works.
This is not objective verification of autism. It is objective verification of a symptom linked to autism.
Bumping this up, just briefly. A local engineering firm is working at developing a tool for the early biometric diagnosis of Autism. Story here
What the device will measure is how a baby's eyes will react to a point of light. If this is approved, it will be the first way to give objective verification of autism so that early therapies can be prescribed.
Hope it works.
I'm apprehensive about posting this, but I'll risk it.
As the parent of an autistic young adult, I'm nervous about what the prescribed therapies might look like. There's just so much room for getting it wrong.
Thank you! I remembered that there was such a thread, but couldn't locate it. I've just reread it and feel much refreshed! Refreshed as in "like I just had a lovely cup of fizzy lime water." There's a lot of good reflection on that thread.
Play Therapy: Helps children with autism play and interact.
Occupational Therapy: Focuses on daily living skills and using everyday objects.
Speech Therapy: Aids in communication.
Applied Behavior Analysis (ABA): Addresses behavior and teaches new skills.
Therapeutic Horseback Riding: An alternative approach.
Educational Therapies: Highly structured programs.
Family Therapies: Support for families.
Medications: Used in some cases.
My grandson is on the spectrum (Asperger's Syndrome). He was formally diagnosed when he was six, but we knew he was different almost from the time of his birth--in particular because of his reaction to sound and aversion to spicy foods. He was also uncomfortable being around his peers.
Therapies that have been prescribed to him are
Play therapy
Applied Behavioral Analysis, and
Family Therapies.
He has not had any medications for autism.
While we knew he was different, we did not know why he was different. Had a trained pediatrician been able to use this particular device just like they now test for deafness, he would have had a better chance to make positive changes much earlier than when he started.
He is now 11. He is doing very well. The next challenge will be going into middle school and having to deal with all the changes of puberty. But we are very satisfied with the people and program he works with. We know his people have already started on that stage/
There is something to be said for early diagnosis, in order to ensure people’s needs can be met appropriately. However, there are significant concerns about Lovaas style ABA therapy.
It is unhelpful that applied behavioural analysis is a term in widespread use to refer to Lovaas therapy - as it causes confusion with functional analysis of behaviour (which I will refer to as FA for convenience here.)
If someone is repeatedly headbanging, for example, and they can not tell you why (perhaps they have not developed speech) - then you would use FA to try to understand why. You might find that they find the lights in a particular space difficult to tolerate, or it happens when they are overwhelmed by social demand or they have an ear infection etc etc. Then you would try to meet whatever need you have identified - change the light in a particular room or make things available in a space with a different type of lighting, treat the ear infection and ensure effective pain control or reduce the social demands. Or you might teach additional coping skills for social situations that are unavoidable.
The problem with ABA is it can be an attempt to make people “pass for normal”. So a person may engage in sensory stimming behaviours like rocking when watching their favourite tv show - because they enjoy the sensation or find it soothing. This can end up be chosen as a treatment target, This when stimming is not harmful for the person themselves or anyone around them. Essentially, a coordinated attempt to train the person to mask their autism persistently, which is exhausting for the individual.
Play Therapy: Helps children with autism play and interact.
Occupational Therapy: Focuses on daily living skills and using everyday objects.
Speech Therapy: Aids in communication.
Applied Behavior Analysis (ABA): Addresses behavior and teaches new skills.
Therapeutic Horseback Riding: An alternative approach.
Educational Therapies: Highly structured programs.
Family Therapies: Support for families.
Medications: Used in some cases.
My grandson is on the spectrum (Asperger's Syndrome). He was formally diagnosed when he was six, but we knew he was different almost from the time of his birth--in particular because of his reaction to sound and aversion to spicy foods. He was also uncomfortable being around his peers.
Therapies that have been prescribed to him are
Play therapy
Applied Behavioral Analysis, and
Family Therapies.
He has not had any medications for autism.
While we knew he was different, we did not know why he was different. Had a trained pediatrician been able to use this particular device just like they now test for deafness, he would have had a better chance to make positive changes much earlier than when he started.
He is now 11. He is doing very well. The next challenge will be going into middle school and having to deal with all the changes of puberty. But we are very satisfied with the people and program he works with. We know his people have already started on that stage/
Thanks for that list! My son was diagnosed at the age of 10, by which point we had been doing a lot of intuitive adaptations. We were never prescribed therapies. That's a language that I've not heard anyone in Canada use with respect to autism. However, we did make use of Occupational Therapy (especially with respect to helping him with proprioception, balance, and simply feeling more comfortable in his body).
I don't know what many of the therapies you list would look like in practice, but I do wish that we'd been offered something in the way of Family Therapies. We certainly could have used some support!
The list you provided helps me to see that there are many more options than the ABA of which I've been most aware and which makes me uncomfortable (at least in the abstract!). It sounds like your family has had experience with it, and perhaps more positive experience than I had thought the treatment might allow.
(as an aside - In our family, we stopped calling his age-cohort his peers. They weren't his peers in any recognizable way. His peers were the people who were interested in serious mathematics. It was important to us to allow him to be himself, with all his asynchronous development. The school's insistence on his need to fit in with his peers seemed, to us, a strange priority. Nowhere else in life, other than in age-defined classrooms, do we assume that people in one's age-cohort are one's peers.)
If someone has found some kind of evolution of ABA which avoids the faults of what historically goes under that name then all power to them but trying to rehabilitate the name is unwise. ABA is virtually an obscene word within the autistic community. We get very defensive and worried about it.
We often tend to feel that what we need help with is more bridging the gap between us and the non-autistic, rather than changing the way we are. That gap can be approached from either direction.
Treatment for autism has a pretty grim therapy. For instance, go look up the reason why we don't call it "Asperger's Syndrome" anymore. Historically, Asperger wasn't a very nice person.
With the current administration steering hard against "special needs" of any kind and increasingly treating people like machine parts, one may understand why a lot of "therapy" for autistic people has a similar feel to "conversion therapy" for queer people.
A lot of people regard "Autism Speaks" to be a hate group, even though it's also the most well known "autism organization" in the country. And there's the discomfort that a lot of "care for disabilities" is more for the benefit of the parents/caretakers than it is for the children/taken-care-of. A lot of people with autism have reported that ABA practices amount to a kind of psychological torture, which is even worse when you consider that a lot of people with autism aren't exactly good at communicating, like my son.
I dislike the idea of being alarmist, but I think it's good to keep in mind that this industry is still very Buyer beware.
I thought this was an interesting Open Access article on co produced research on the best approach with young autistic people and their families - and this kind of approach is ideally how research should be - nothing about us without us being involved in the research design.
Plain English Summary
Children showing many autistic traits, or who have a close family member on the autism spectrum or having ADHD, are more likely than average to struggle with attention, regulation and thinking skills. This may lead to difficulties with mental health and independent living in later life. We aimed to create a parent-toddler programme that would help children with a connection to autism or ADHD to thrive, without pressuring them to act in a certain way.
To do this we first reviewed the results of previous studies and community consultations, and identified how we could build on an existing parent support programme structure to meet the project goals. Next, we tried out our ideas with 18 families. Then, we asked nine parents with a connection to autism or ADHD (because they are neurodivergent themselves, and/or raising a neurodivergent child), and five professionals to help us improve the materials further.
The end result is a programme called START (Supporting Toddlers with a connection to autism or ADHD to develop strong Attention, Regulation and Thinking skills). This 12-week group-based parent-toddler programme aims to foster children’s development in three ways: (1) Giving children opportunities to practise their skills through play and everyday activities (2) Creating a welcoming, accessible and non-judgemental space for parents to hear about and share ideas (3) Helping parents to identify ways to help their child feel calm, safe and supported
Something that particularly stood out to me from the conclusion was this
Key features of the resultant programme are that it combines play-based, individualised cognitive training for the child, with coaching and peer-support based psycho-education. This aims to promote parenting behaviours linked to strong executive functions, and empower parents to consider how they can improve environmental fit for their child so that executive function stressors and excessive demands are reduced. The programme has been developed within a neurodiversity-affirming perspective which values and recognises what parents are already doing to support their child, meets the child where they are, and encourages them as individuals—with unique strengths, challenges and interests—to thrive.
(Bold mine)
It goes both ways - it's not just the child- it's parents and others around autistic children who need to learn and be educated about things like sensory needs and the importance of the environment and not hurting the child by trying to force a square peg into a round hole with conversion therapy approaches which can suit neurotypical agendas but end up hurting and not helping autistic people
Our son was diagnosed under the DSM IV at the age of 5 with AS and a co-morbid ADHD 18. He has taken medication since about 6 to deal with some of the anxiety and impulsiveness. I do not remember any therapies being prescribed (although I have read a ton of books on ASD). He has successfully completed a degree in Communication Studies and a certificate in social media. He has two part-time jobs where he has developed skills (like all of us much) to interact with the general public.
My daughter takes medication to help with the inattentive aspect of her ADHD. This has been a fully informed decision between her, us and CAMHS. I have had various anxiety meds but while the Autism may give rise to the anxiety, I consider it to be so in the same way that ice skating injuries are a possible symptom of dyspraxia.
My diagnoser didn't consider I needed an additional diagnosis of ADHD, but I do have some understanding of inattentive ADHD. I've had times, under stress, when I can almost hear myself making an utter knob of myself and part of me is screaming "FFS Shut Up you berk! This isn't how humans behave. " Being more in control of that would enable one to be more genuinely oneself. I consider this quite different to the "stop being obviously Autistic" of ABA as I've heard it.
There's a difference between "let's help you learn to read the room" and "stop being interested in linguistics and electronics and fain interest in motor racing and prospects for the 2026 World Cup instead"
There is definitely a thing going on where ABA appears to have cultivated a terrible reputation among many autistic people, which has been broadcast far and wide. And it's hard to tell, at least to me, whether the ABA folks are taking that criticism and adjusting their approach, or taking that criticism and adjusting their rhetoric so they can keep themselves in business.
It is not, I think, unreasonably cynical to expect people to bear fruits of repentance before you let them take care of children, especially vulnerable children who are often not skilled at self advocacy.
It contains an interview with a non speaking autistic person Isaiah Grewal about his own experience.
Non- speaking autistic people or those who cant always rely on their oral speech ) have been part of the neurodiversity movement from its beginnings - some folk can eg. type online rather than audibly talk.
But it's the subject of a lot of stigma because motor control difficulties can be mistaken for a lack of intelligence and understanding when that isn't at all the case.
About a third of people born with autism are non-speakers, says Morgan Barense, a neuroscientist in the department of psychology at the University of Toronto. People assume, she says, that if a person can’t speak, they must be intellectually impaired.
Barense believes that many autistic people who don’t speak may be hindered not by problems of intellect but motor control. She thinks they may have a condition called apraxia, which is the inability of the body to carry out the motor commands of the brain, a problem sometimes seen after injuries like stroke or head trauma. “Speech is the finest of the fine motor skills,” says Barense. “Think about how you have to move your tongue and your lips in order to execute a sentence. It’s exquisitely controlled.”
While the article is about understanding this bit of autistic experience better, it shows the importance of finding the right approach. When he was younger Isaac's parents tried all kind of therapies until
at age 13, Isaiah started working with a communications therapist who taught the family how to use letter boards. These are large boards with the 26 letters of the alphabet printed on them – large enough that even a person with poor motor control can learn, with enormous effort, to point and spell.
And this gave Isaiah access to communication to empower himself much more and make his voice heard.
Our grandson quickly learned sign language. I think it was around two he learned the alphabet. We got some alphabet blocks for him when he was two, but it had a missing letter. He just would not accept them because of that omission.
It contains an interview with a non speaking autistic person Isaiah Grewal about his own experience.
Non- speaking autistic people or those who cant always rely on their oral speech ) have been part of the neurodiversity movement from its beginnings - some folk can eg. type online rather than audibly talk.
But it's the subject of a lot of stigma because motor control difficulties can be mistaken for a lack of intelligence and understanding when that isn't at all the case.
About a third of people born with autism are non-speakers, says Morgan Barense, a neuroscientist in the department of psychology at the University of Toronto. People assume, she says, that if a person can’t speak, they must be intellectually impaired.
Barense believes that many autistic people who don’t speak may be hindered not by problems of intellect but motor control. She thinks they may have a condition called apraxia, which is the inability of the body to carry out the motor commands of the brain, a problem sometimes seen after injuries like stroke or head trauma. “Speech is the finest of the fine motor skills,” says Barense. “Think about how you have to move your tongue and your lips in order to execute a sentence. It’s exquisitely controlled.”
While the article is about understanding this bit of autistic experience better, it shows the importance of finding the right approach. When he was younger Isaac's parents tried all kind of therapies until
at age 13, Isaiah started working with a communications therapist who taught the family how to use letter boards. These are large boards with the 26 letters of the alphabet printed on them – large enough that even a person with poor motor control can learn, with enormous effort, to point and spell.
And this gave Isaiah access to communication to empower himself much more and make his voice heard.
There is a big co-morbidity between speech production difficulties, audio processing difficulties and autism. I wouldn't be in the slightest surprised to learn that one form of that may be not speaking at all.
My daughter takes medication to help with the inattentive aspect of her ADHD. This has been a fully informed decision between her, us and CAMHS. I have had various anxiety meds but while the Autism may give rise to the anxiety, I consider it to be so in the same way that ice skating injuries are a possible symptom of dyspraxia.
My diagnoser didn't consider I needed an additional diagnosis of ADHD, but I do have some understanding of inattentive ADHD. I've had times, under stress, when I can almost hear myself making an utter knob of myself and part of me is screaming "FFS Shut Up you berk! This isn't how humans behave. " Being more in control of that would enable one to be more genuinely oneself. I consider this quite different to the "stop being obviously Autistic" of ABA as I've heard it.
There's a difference between "let's help you learn to read the room" and "stop being interested in linguistics and electronics and fain interest in motor racing and prospects for the 2026 World Cup instead"
This - all of this. I was diagnosed in my early 40s with ASD and ADHD and looking back, I’m astonished I lasted as long as I did in the forces. I’d never have been *allowed* to join in the first place had I been diagnosed beforehand. But I can see how I was exactly high functioning enough to ace the interviews and the training, before really struggling with the job…
...My diagnoser didn't consider I needed an additional diagnosis of ADHD, but I do have some understanding of inattentive ADHD. I've had times, under stress, when I can almost hear myself making an utter knob of myself and part of me is screaming "FFS Shut Up you berk! This isn't how humans behave. "
Yup. Neuronormativity is deeply ingrained in all of us - it's the measure by which we evaluate our own behaviour and determine how "normal" we are. And beat ourselves up about it.
Being more in control of that would enable one to be more genuinely oneself.
In relation to our external behaviour, I believe the idea that being more in control enables us to be more genuinely ourselves, is itself an aspect of (neuro)normativity. It's kind of the idea that "we our more genuinely ourselves when we behave as both we and others would prefer us to."
We often tend to feel that what we need help with is more bridging the gap between us and the non-autistic, rather than changing the way we are. That gap can be approached from either direction.
An alternative would be to expand the scope of what is considered socially normal or acceptable, so that it encompasses people on both sides of the gap, and out beyond.
This article suggests that we need to unlearn neuronormativity itself:
Neuronormativity refers to the privileged, so-called neurotypical set of assumptions, norms, and practices that construes so-called neurotypicality as the sole acceptable or superior mode of cognition, and that stigmatizes attitudes, behaviors, or actions that reflect so-called neurodivergent modes of cognition as deviant or inferior. Neuronormative assumptions, norms, and practices uphold standards regarding, for example, what is neurotypically considered appropriate eye contact, facial expressions, prosody, conversational flow, processing, and responsiveness—all of which can be more difficult for so-called neurodivergent individuals to understand, sense, or apply due to naturally occurring variations in their neurocognitive profiles.
That's a really good article by Professor Amandine Catala @pease
I particularly liked what she had to say about power.
In order to emphasize that so-called neurotypical and so-called neurodivergent profiles correspond not to natural categories but rather to different social positions and statuses created by power relations (here, neuroableism and neuronormativity), it would therefore be more appropriate to speak of ‘neuronormalized’ profiles for so-called neurotypical profiles and of ‘neurominoritized’ profiles for so-called neuroatypical or neurodivergent profiles
Terms such as ‘neuronormalized’ and ‘neurominoritized’ have the advantage of signaling the power relations that produce these categories. By contrast, terms such as ‘neurotypical’ or ‘neuroatypical’ conceal these power relations and therefore suggest that these are natural categories that somehow preexist these power relations. Yet, as noted above, while neurocognitive variation within the human species is indeed natural, the status of ‘normal/typical’ or ‘abnormal/atypical’ that is attributed to these different natural variations is not natural but rather the product of power relations.
By drawing attention to power relations, the terms ‘neuronormalized’ or ‘neurominoritized’ thus make it easier to grasp the dimensions of privilege and marginalization that are fundamentally at play here.
I have often wondered if I could have been diagnosed on the spectrum. I was pretty much a loner growing up. I would rather get lost in a book than go out and play with the kids in the neighborhood. Early puberty was rather difficult for me. Really did not catch up until third and fourth year of high school. I know when I get frustrated, I can get quite angry. On the one hand, I crave routine, but then I sometimes rebel against routine.
Anyway, now that I am in the later years of my life, I need to continue to be aware of how I am coming off to other people.
I was originally recognised as autistic because it was caught by a clever consultant who was seeing me for a quite different reason and investigated from there.
I find the monotropic theory of autism - a theory developed by autistic people - good to think with and you might find it interesting.
I have often wondered if I could have been diagnosed on the spectrum. I was pretty much a loner growing up. I would rather get lost in a book than go out and play with the kids in the neighborhood. Early puberty was rather difficult for me. Really did not catch up until third and fourth year of high school. I know when I get frustrated, I can get quite angry. On the one hand, I crave routine, but then I sometimes rebel against routine.
Anyway, now that I am in the later years of my life, I need to continue to be aware of how I am coming off to other people.
I'm pretty sure I am. I stim very quietly. I remember getting teased in high school because I'd mashed a particular button on my calculator until the label wore off. Nobody told me about stimming but...yep. I think that's what it was, and the constant self-talk, and being really tone deaf to social cues.
I think I've become a much more socially reasonable person after I started learning about autism, partly through my son's experience. It's like I start filing away "OK, this is why I do that" and suddenly I just start adapting without thinking about it. Also, while his autism is a lot more pronounced, he kinda reminds me of myself when I was a kid, just less restrained, which gives me a lot of mixed feelings. Early puberty was really hard on me, and it's looking to be really hard on him.
I also strongly relate to the craving/hating routine thing. I feel like I need routines to order my life but I viscerally resent them for intruding.
My quick and dirty explanation for autism, as I understand it, is that the volume dial on reality is either turned up way too loud or way too soft. And so, at least to me, autism is a constant struggle to keep an internal equilibrium state when the whole world is wired to push you off of it.
I read somewhere that this is a theory for why a lot of people with really severe cases are nonverbal. Speech development happens very early in life, and for someone who is really really sensitive, they just can't pick out one noise from the general chaos of reality that's invading their heads.
This is my experience of any crowded social situation, especially when I was younger, and explains why I've long preferred written communication to speech, I think.
None of this being scientific, of course, just my subjective experience as a suspected autistic guy who spends a fair deal of time working around folks with autism.
I work with children with autism and severe learning disabilities, in a UK special school environment.
When they arrive as primary/reception pupils, the SLD is not yet defined, and we think of 'global developmental delay'. It is by puberty that we can begin to think of SLD rather than GDD.
The communication needs of different pupils do not harmonise, and we take a total communication approach, where all communication is delivered through multiple channels, including speech, signing, gestures, symbols, objects of reference. These channels are available for both receptive and expressive language. Each pupil has a programme from a speech and language therapist, and a bespoke communication plan. Resources, reports and training are all shared with parents and carers - take up/engagement varies. IME 'total communication' approaches are very effective.
A key approach we use is of sensory integration therapy. We take time to analyse the sensory profile of each learner, devising programmes and environments to support regulation. Once again, the sensory needs of different pupils do not harmonise. Resources, reports and training are all shared with parents and carers - take up/engagement varies. IME 'sensory integration' approaches are very effective.
In my work with people who will function for their entire life at a very very early development level (PLD), I would not discount behaviourist approaches. For example, with students who do not cooperate with personal care or clothing, whose decency needs maintaining.
I work with children with autism and severe learning disabilities, in a UK special school environment.
When they arrive as primary/reception pupils, the SLD is not yet defined, and we think of 'global developmental delay'. It is by puberty that we can begin to think of SLD rather than GDD.
The communication needs of different pupils do not harmonise, and we take a total communication approach, where all communication is delivered through multiple channels, including speech, signing, gestures, symbols, objects of reference. These channels are available for both receptive and expressive language. Each pupil has a programme from a speech and language therapist, and a bespoke communication plan. Resources, reports and training are all shared with parents and carers - take up/engagement varies. IME 'total communication' approaches are very effective.
A key approach we use is of sensory integration therapy. We take time to analyse the sensory profile of each learner, devising programmes and environments to support regulation. Once again, the sensory needs of different pupils do not harmonise. Resources, reports and training are all shared with parents and carers - take up/engagement varies. IME 'sensory integration' approaches are very effective.
In my work with people who will function for their entire life at a very very early development level (PLD), I would not discount behaviourist approaches. For example, with students who do not cooperate with personal care or clothing, whose decency needs maintaining.
Heron
I think there's no one size fits all and a lot of own voice advocacy by its nature comes from a different place to the needs you're describing.
Where we draw the line between what can be accommodated by challenging neuronormalisation and what actually threatens life chances and health and safety might be somewhat movable.
I was reading a FB thread the other day about some lad who'd worn a frock to his prom and some of the comments really exemplified how there is a body of people who operate with an unchallenged conviction which to them is so obvious they don't even think if it as an actual held position that Different = Wrong = Bad
SLD is Specific Learning Disorder (or is it Severe Learning Difficulties)
GDD is Global Development Delay, and
PLD is Proficiency Level Descriptor
Is that correct?
Apologies, I did use the phrase 'Severe Learning Disabilities' and 'Global Developmental Delay' in full prior to the abbreviations, but did not fully telegraph the use. But I neglected to use the expanded 'Profound Learning Disabilities' for PLD (often used as 'Profound and Multiple Learning Disabilities PMLD in UK_.
I am wondering if we could say behavorist approaches are ethical when they are necessary. For instance, if B flaps to regulate and that makes me uncomfortable? My effing problem. B's regulation is much more important than any desire for no flapping. But if C is trying to strip all their clothes of in 2° weather, then C needs to be protected from hypothermia.
Even there though I hope we can agree that C also deserves some support to figure out why they are trying to strip? Are the clothes giving them uncomfortable sensory issues? Maybe they need different clothes.
...
I think there's no one size fits all and a lot of own voice advocacy by its nature comes from a different place to the needs you're describing.
Where we draw the line between what can be accommodated by challenging neuronormalisation and what actually threatens life chances and health and safety might be somewhat movable.
Thanks. I was thinking along similar lines in relation to Heron's post. (I note that autism isn't a learning disability, but that learning disabilities can co-occur at higher rates in autistic people.)
I wonder if thinking in terms of there being a line helps or hinders - for example, people who at a point of assessment might be one "side" of a line, but whose needs overlap that line, as well as possibly changing as they develop. In other words, that challenging neuronormalisation can potentially extend as far as people are willing to contemplate - ultimately resulting in a continuous graduation of what *all* people need to navigate society. And recognising that society doesn't abruptly end at the boundaries of special schools, or at the walls of a home in which someone with special needs grows up.
In relation to needs, the article to which I previously linked points out that rather than thinking in terms of accommodations, "it is preferable to speak of adaptive measures or inclusive measures".
I was also thinking about the extent to which adaptive measures depend on the society which is being adapted. Different cultures have different social norms. For example, the definition of "decency" varies widely.
discussions surrounding the neurodiversity paradigm(s) have predominantly occurred in Western contexts in the past two decades (e.g. in North America, Europe, and Australia) and are only recently emerging in non-Western contexts. This Western-centric status is reflected in the autism literature and discourses of autism advocacy, where the voices and perspectives of autistic individuals and allies who are White and English-speaking are most visible, which is emblematic of the current state of autism research and psychological science more broadly.
And
The importance of culture goes further than linguistic differences. Cultural contexts that shape social norms and dictate different preferences can also account for the different trajectories of the development of neurodiversity paradigms and movements in non-Western countries. In East Asia, where collectivistic culture is predominant, social harmony and conformity are valued highly. In such cultures, uniqueness can be perceived negatively, as it may threaten relationships and interpersonal harmony within the community, and therefore, movements advocating for individual uniqueness and rights may be suppressed.
I am wondering if we could say behavorist approaches are ethical when they are necessary. For instance, if B flaps to regulate and that makes me uncomfortable? My effing problem. B's regulation is much more important than any desire for no flapping. But if C is trying to strip all their clothes of in 2° weather, then C needs to be protected from hypothermia.
Even there though I hope we can agree that C also deserves some support to figure out why they are trying to strip? Are the clothes giving them uncomfortable sensory issues? Maybe they need different clothes.
I would agree with that, it should always be about finding out one someone needs and meeting those.
I am wondering if we could say behavorist approaches are ethical when they are necessary. For instance, if B flaps to regulate and that makes me uncomfortable? My effing problem. B's regulation is much more important than any desire for no flapping. But if C is trying to strip all their clothes of in 2° weather, then C needs to be protected from hypothermia.
Even there though I hope we can agree that C also deserves some support to figure out why they are trying to strip? Are the clothes giving them uncomfortable sensory issues? Maybe they need different clothes.
The difficulty is when people try to make other people's reactions to B a problem for B to solve, and claim it would be better for B to erase the behaviours that produce negative reactions.
@KarlLB
NAS tells me that there are 700,000 people with autism in the UK.
NHS tells me that 350,000 people in the UK have severe learning disabilities.
NHS tells me that 'about a third' of the people in the UK with severe learning disabilities have a diagnosis of autism. Lets call it 115,000.
The kind of pupils I work with represent (rough and ready) perhaps 16% of the people with autism in the UK.
I understand potential problems with those numbers - but they are what we've got - and as I am using them to foreground a hidden group I hope we can graciously avoid pulling them apart.
The voices of the young people I work with are very hard to hear, and 'own voice' is often impossible. Whilst I follow Epiphany threads, I do not post - but do so briefly here as it seems to me there are missing voices and perspectives on SoF wrt autism. I do not think it is possible for those voices to be heard here, except perhaps via skilled work of others.
Thank you @Gwai . You sum up well part of the approach I take in my teaching.
Going back to the title of the thread - I really recommend total communication and sensory integration models.
@Heron One thing you are implying that I think is very important and I want to emphasize: There are a significant number of people who aren't and will never be able to communicate on forums like this. My husband (@Bullfrog) cares for people at his job who are nonverbal and not able to write. Neither he no you are those people. But if those who know them don't speak for them, who will? It's highly imperfect, but those who can must be the best voice they can be.
Thank you for opening the door to me to post for those I serve, who cannot post here.
As part of the Iona Community, I pray each day that 'hidden things might be revealed to us, and new ways found to touch the lives of all'. For me, this prayer is for my work with young people with SLD and Autism - as, within a strong ethical framework, I strive to support movement towards life in all its fullness.
And on the thread topic, I meant to mention that Intensive Interaction is an essential approach to autism in early childhood - whether or not there is learning disability evident. It's so good at relationship building it can almost seem magic!
One thing I'll type as someone who suspects he's at the "close to normal" end of the spectrum and sometimes finds these people very relatable...
Something they say at my job is "all behavior is communication." Everything is, even with someone who is complete non verbal and stims with the kind of intensity that it's hard to tell if their attention is anywhere at all for more than a second, you can learn to read moods by the intensity of stims. And someone like that may respond to verbal cues, or a gentle tug on the arm of "please sit down so I can put you socks on." And there's a degree, as with animals (and humans are animals) of "I'm familiar with you, you know me, we're comfortable doing this, right?"
It really is kind of beautiful if you get to know someone, and I've known some of these guys for ten years.
Shaving, I think, can be a real edge case, no pun intended. It's not a medical need. In my experience, very few guys like to do it. But maintaining a proper looking beard is more effort, and can get unhygienic for men who are sloppy eaters. And if someone objects to the experience of "my caretaker is putting this weird thing in my face," does that mean they consent to growing a beard? Is growing a beard an intentional choice? Or being clean shaven? Should society expect a certain "standard" look for men?
I find the ethics of it interesting, though I usually aim for a clean shave for the folks I work with, because I think the lack shows a lack of concern on the professional end. Lacking clear communication, a guy should look nice and it's easier to look nice with a clean shave than with a scruffy beard. But it's an interesting ethical quandary to me.
One thing I'll type as someone who suspects he's at the "close to normal" end of the spectrum and sometimes finds these people very relatable...
Something they say at my job is "all behavior is communication." Everything is, even with someone who is complete non verbal and stims with the kind of intensity that it's hard to tell if their attention is anywhere at all for more than a second, you can learn to read moods by the intensity of stims. And someone like that may respond to verbal cues, or a gentle tug on the arm of "please sit down so I can put you socks on." And there's a degree, as with animals (and humans are animals) of "I'm familiar with you, you know me, we're comfortable doing this, right?"
It really is kind of beautiful if you get to know someone, and I've known some of these guys for ten years.
Shaving, I think, can be a real edge case, no pun intended. It's not a medical need. In my experience, very few guys like to do it. But maintaining a proper looking beard is more effort, and can get unhygienic for men who are sloppy eaters. And if someone objects to the experience of "my caretaker is putting this weird thing in my face," does that mean they consent to growing a beard? Is growing a beard an intentional choice? Or being clean shaven? Should society expect a certain "standard" look for men?
I find the ethics of it interesting, though I usually aim for a clean shave for the folks I work with, because I think the lack shows a lack of concern on the professional end. Lacking clear communication, a guy should look nice and it's easier to look nice with a clean shave than with a scruffy beard. But it's an interesting ethical quandary to me.
On the other side, my father's care home shaved his beard despite him having expressed the desire that they not do so. His Parkinsons limited his processing speed towards the end and by the time the carer said "shall I shave this off?" he's mumbled an agreement before it sunk in (as everything else asked like that was "shall I clean your face"? "Shall we clean those teeth?" etc.) before he'd processed what was being asked.
It felt significant. He'd had that beard 40 years. About the one thing he had left. And it went.
One thing I'll type as someone who suspects he's at the "close to normal" end of the spectrum and sometimes finds these people very relatable...
Something they say at my job is "all behavior is communication." Everything is, even with someone who is complete non verbal and stims with the kind of intensity that it's hard to tell if their attention is anywhere at all for more than a second, you can learn to read moods by the intensity of stims. And someone like that may respond to verbal cues, or a gentle tug on the arm of "please sit down so I can put you socks on." And there's a degree, as with animals (and humans are animals) of "I'm familiar with you, you know me, we're comfortable doing this, right?"
It really is kind of beautiful if you get to know someone, and I've known some of these guys for ten years.
Shaving, I think, can be a real edge case, no pun intended. It's not a medical need. In my experience, very few guys like to do it. But maintaining a proper looking beard is more effort, and can get unhygienic for men who are sloppy eaters. And if someone objects to the experience of "my caretaker is putting this weird thing in my face," does that mean they consent to growing a beard? Is growing a beard an intentional choice? Or being clean shaven? Should society expect a certain "standard" look for men?
I find the ethics of it interesting, though I usually aim for a clean shave for the folks I work with, because I think the lack shows a lack of concern on the professional end. Lacking clear communication, a guy should look nice and it's easier to look nice with a clean shave than with a scruffy beard. But it's an interesting ethical quandary to me.
On the other side, my father's care home shaved his beard despite him having expressed the desire that they not do so. His Parkinsons limited his processing speed towards the end and by the time the carer said "shall I shave this off?" he's mumbled an agreement before it sunk in (as everything else asked like that was "shall I clean your face"? "Shall we clean those teeth?" etc.) before he'd processed what was being asked.
It felt significant. He'd had that beard 40 years. About the one thing he had left. And it went.
Agreed. If there's a clear precedent and even the shade of clearly stated disagreement, that's abuse. Shame on them for, at best, being seriously unprofessional.
One thing I'll type as someone who suspects he's at the "close to normal" end of the spectrum and sometimes finds these people very relatable...
Something they say at my job is "all behavior is communication." Everything is, even with someone who is complete non verbal and stims with the kind of intensity that it's hard to tell if their attention is anywhere at all for more than a second, you can learn to read moods by the intensity of stims. And someone like that may respond to verbal cues, or a gentle tug on the arm of "please sit down so I can put you socks on." And there's a degree, as with animals (and humans are animals) of "I'm familiar with you, you know me, we're comfortable doing this, right?"
It really is kind of beautiful if you get to know someone, and I've known some of these guys for ten years.
Shaving, I think, can be a real edge case, no pun intended. It's not a medical need. In my experience, very few guys like to do it. But maintaining a proper looking beard is more effort, and can get unhygienic for men who are sloppy eaters. And if someone objects to the experience of "my caretaker is putting this weird thing in my face," does that mean they consent to growing a beard? Is growing a beard an intentional choice? Or being clean shaven? Should society expect a certain "standard" look for men?
I find the ethics of it interesting, though I usually aim for a clean shave for the folks I work with, because I think the lack shows a lack of concern on the professional end. Lacking clear communication, a guy should look nice and it's easier to look nice with a clean shave than with a scruffy beard. But it's an interesting ethical quandary to me.
On the other side, my father's care home shaved his beard despite him having expressed the desire that they not do so. His Parkinsons limited his processing speed towards the end and by the time the carer said "shall I shave this off?" he's mumbled an agreement before it sunk in (as everything else asked like that was "shall I clean your face"? "Shall we clean those teeth?" etc.) before he'd processed what was being asked.
It felt significant. He'd had that beard 40 years. About the one thing he had left. And it went.
Agreed. If there's a clear precedent and even the shade of clearly stated disagreement, that's abuse. Shame on them for, at best, being seriously unprofessional.
"Oh, sorry, it's an outside barber. We must have forgotten to tell them"
One thing I'll type as someone who suspects he's at the "close to normal" end of the spectrum and sometimes finds these people very relatable...
Something they say at my job is "all behavior is communication." Everything is, even with someone who is complete non verbal and stims with the kind of intensity that it's hard to tell if their attention is anywhere at all for more than a second, you can learn to read moods by the intensity of stims. And someone like that may respond to verbal cues, or a gentle tug on the arm of "please sit down so I can put you socks on." And there's a degree, as with animals (and humans are animals) of "I'm familiar with you, you know me, we're comfortable doing this, right?"
It really is kind of beautiful if you get to know someone, and I've known some of these guys for ten years.
Shaving, I think, can be a real edge case, no pun intended. It's not a medical need. In my experience, very few guys like to do it. But maintaining a proper looking beard is more effort, and can get unhygienic for men who are sloppy eaters. And if someone objects to the experience of "my caretaker is putting this weird thing in my face," does that mean they consent to growing a beard? Is growing a beard an intentional choice? Or being clean shaven? Should society expect a certain "standard" look for men?
I find the ethics of it interesting, though I usually aim for a clean shave for the folks I work with, because I think the lack shows a lack of concern on the professional end. Lacking clear communication, a guy should look nice and it's easier to look nice with a clean shave than with a scruffy beard. But it's an interesting ethical quandary to me.
On the other side, my father's care home shaved his beard despite him having expressed the desire that they not do so. His Parkinsons limited his processing speed towards the end and by the time the carer said "shall I shave this off?" he's mumbled an agreement before it sunk in (as everything else asked like that was "shall I clean your face"? "Shall we clean those teeth?" etc.) before he'd processed what was being asked.
It felt significant. He'd had that beard 40 years. About the one thing he had left. And it went.
Agreed. If there's a clear precedent and even the shade of clearly stated disagreement, that's abuse. Shame on them for, at best, being seriously unprofessional.
"Oh, sorry, it's an outside barber. We must have forgotten to tell them"
They didn't grasp how it mattered.
Yep, unprofessional. I do understand how those kinds of mistakes get made, and that's also a serious failure.
Unfortunately our care system is staffed by some of the lowest paid people in the economy. Retention is therefore dire once people have a few months work history and discover they can get more scanning shopping at Aldi and never have to clean another arse. So most people there are still in the learning phase. I would say we digress, but is residential care for SEND children any more protected from this sort of thing?
Unfortunately our care system is staffed by some of the lowest paid people in the economy. Retention is therefore dire once people have a few months work history and discover they can get more scanning shopping at Aldi and never have to clean another arse. So most people there are still in the learning phase. I would say we digress, but is residential care for SEND children any more protected from this sort of thing?
That sounds familiar. I'm unusual to have lasted as long as I have at my job, and it's partly because I've been working "relief" for years and don't need the money. It's exhausting and doesn't pay the bills to work full time. An my employer is probably one of the better ones in the industry. I know that retention took a major hit during COVID, and I have the feeling that a national policy of throttling immigration isn't going to help.
To be really specific, I work at an institutional facility for adults with disabilities, but it's all kind of similar. People who can't support themselves take a lot of resources. My employer runs on having a stellar, highly visible reputation for being do-gooders and having had a legendary executive director (retired a few years ago.) But I get the sense it's hard everywhere.
It is important to look at the figures though as research by UCL suggested those figures given above could be out by a huge amount and that the number of autistic people in England alone could be twice as high as previously thought. Underdiagnosis - especially in women is a known phenomenon.
Be careful of Autism Parenting. It promotes ABA, which means it's a fan of modifying behavior not caring for people. I won't say they don't have anything valid to share, but anything that promotes ABA is a source to be careful of.
Someone who is a carer for her high support needs son and an excellent ally to all autistic people who I have read for a long time and can vouch for as an autistic person myself is Shannon Des Roches Rosa - so I'm going to post a few links to her
Comments
What the device will measure is how a baby's eyes will react to a point of light. If this is approved, it will be the first way to give objective verification of autism so that early therapies can be prescribed.
Hope it works.
This is not objective verification of autism. It is objective verification of a symptom linked to autism.
I'm apprehensive about posting this, but I'll risk it.
As the parent of an autistic young adult, I'm nervous about what the prescribed therapies might look like. There's just so much room for getting it wrong.
We've had a thread on what can go wrong before
https://forums.shipoffools.com/discussion/comment/648712
Thank you! I remembered that there was such a thread, but couldn't locate it. I've just reread it and feel much refreshed! Refreshed as in "like I just had a lovely cup of fizzy lime water." There's a lot of good reflection on that thread.
Play Therapy: Helps children with autism play and interact.
Occupational Therapy: Focuses on daily living skills and using everyday objects.
Speech Therapy: Aids in communication.
Applied Behavior Analysis (ABA): Addresses behavior and teaches new skills.
Therapeutic Horseback Riding: An alternative approach.
Educational Therapies: Highly structured programs.
Family Therapies: Support for families.
Medications: Used in some cases.
My grandson is on the spectrum (Asperger's Syndrome). He was formally diagnosed when he was six, but we knew he was different almost from the time of his birth--in particular because of his reaction to sound and aversion to spicy foods. He was also uncomfortable being around his peers.
Therapies that have been prescribed to him are
Play therapy
Applied Behavioral Analysis, and
Family Therapies.
He has not had any medications for autism.
While we knew he was different, we did not know why he was different. Had a trained pediatrician been able to use this particular device just like they now test for deafness, he would have had a better chance to make positive changes much earlier than when he started.
He is now 11. He is doing very well. The next challenge will be going into middle school and having to deal with all the changes of puberty. But we are very satisfied with the people and program he works with. We know his people have already started on that stage/
It is unhelpful that applied behavioural analysis is a term in widespread use to refer to Lovaas therapy - as it causes confusion with functional analysis of behaviour (which I will refer to as FA for convenience here.)
If someone is repeatedly headbanging, for example, and they can not tell you why (perhaps they have not developed speech) - then you would use FA to try to understand why. You might find that they find the lights in a particular space difficult to tolerate, or it happens when they are overwhelmed by social demand or they have an ear infection etc etc. Then you would try to meet whatever need you have identified - change the light in a particular room or make things available in a space with a different type of lighting, treat the ear infection and ensure effective pain control or reduce the social demands. Or you might teach additional coping skills for social situations that are unavoidable.
The problem with ABA is it can be an attempt to make people “pass for normal”. So a person may engage in sensory stimming behaviours like rocking when watching their favourite tv show - because they enjoy the sensation or find it soothing. This can end up be chosen as a treatment target, This when stimming is not harmful for the person themselves or anyone around them. Essentially, a coordinated attempt to train the person to mask their autism persistently, which is exhausting for the individual.
Thanks for that list! My son was diagnosed at the age of 10, by which point we had been doing a lot of intuitive adaptations. We were never prescribed therapies. That's a language that I've not heard anyone in Canada use with respect to autism. However, we did make use of Occupational Therapy (especially with respect to helping him with proprioception, balance, and simply feeling more comfortable in his body).
I don't know what many of the therapies you list would look like in practice, but I do wish that we'd been offered something in the way of Family Therapies. We certainly could have used some support!
The list you provided helps me to see that there are many more options than the ABA of which I've been most aware and which makes me uncomfortable (at least in the abstract!). It sounds like your family has had experience with it, and perhaps more positive experience than I had thought the treatment might allow.
(as an aside - In our family, we stopped calling his age-cohort his peers. They weren't his peers in any recognizable way. His peers were the people who were interested in serious mathematics. It was important to us to allow him to be himself, with all his asynchronous development. The school's insistence on his need to fit in with his peers seemed, to us, a strange priority. Nowhere else in life, other than in age-defined classrooms, do we assume that people in one's age-cohort are one's peers.)
We often tend to feel that what we need help with is more bridging the gap between us and the non-autistic, rather than changing the way we are. That gap can be approached from either direction.
With the current administration steering hard against "special needs" of any kind and increasingly treating people like machine parts, one may understand why a lot of "therapy" for autistic people has a similar feel to "conversion therapy" for queer people.
A lot of people regard "Autism Speaks" to be a hate group, even though it's also the most well known "autism organization" in the country. And there's the discomfort that a lot of "care for disabilities" is more for the benefit of the parents/caretakers than it is for the children/taken-care-of. A lot of people with autism have reported that ABA practices amount to a kind of psychological torture, which is even worse when you consider that a lot of people with autism aren't exactly good at communicating, like my son.
I dislike the idea of being alarmist, but I think it's good to keep in mind that this industry is still very Buyer beware.
Learning from the community: iterative co-production of a programme to support the development of attention, regulation and thinking skills in toddlers at elevated likelihood of autism or ADHD
Something that particularly stood out to me from the conclusion was this
(Bold mine)
It goes both ways - it's not just the child- it's parents and others around autistic children who need to learn and be educated about things like sensory needs and the importance of the environment and not hurting the child by trying to force a square peg into a round hole with conversion therapy approaches which can suit neurotypical agendas but end up hurting and not helping autistic people
The thread on being autistic is now separated from the thread on autism and early diagnosis.
Of course, please remember to consider the opinions of autistic people, as the people in question.
Gwai,
Epiphanies Host
My diagnoser didn't consider I needed an additional diagnosis of ADHD, but I do have some understanding of inattentive ADHD. I've had times, under stress, when I can almost hear myself making an utter knob of myself and part of me is screaming "FFS Shut Up you berk! This isn't how humans behave. " Being more in control of that would enable one to be more genuinely oneself. I consider this quite different to the "stop being obviously Autistic" of ABA as I've heard it.
There's a difference between "let's help you learn to read the room" and "stop being interested in linguistics and electronics and fain interest in motor racing and prospects for the 2026 World Cup instead"
It is not, I think, unreasonably cynical to expect people to bear fruits of repentance before you let them take care of children, especially vulnerable children who are often not skilled at self advocacy.
https://magazine.utoronto.ca/research-ideas/health/when-words-wont-cooperate/
It contains an interview with a non speaking autistic person Isaiah Grewal about his own experience.
Non- speaking autistic people or those who cant always rely on their oral speech ) have been part of the neurodiversity movement from its beginnings - some folk can eg. type online rather than audibly talk.
But it's the subject of a lot of stigma because motor control difficulties can be mistaken for a lack of intelligence and understanding when that isn't at all the case.
While the article is about understanding this bit of autistic experience better, it shows the importance of finding the right approach. When he was younger Isaac's parents tried all kind of therapies until
And this gave Isaiah access to communication to empower himself much more and make his voice heard.
There is a big co-morbidity between speech production difficulties, audio processing difficulties and autism. I wouldn't be in the slightest surprised to learn that one form of that may be not speaking at all.
This - all of this. I was diagnosed in my early 40s with ASD and ADHD and looking back, I’m astonished I lasted as long as I did in the forces. I’d never have been *allowed* to join in the first place had I been diagnosed beforehand. But I can see how I was exactly high functioning enough to ace the interviews and the training, before really struggling with the job…
Yup. Neuronormativity is deeply ingrained in all of us - it's the measure by which we evaluate our own behaviour and determine how "normal" we are. And beat ourselves up about it. In relation to our external behaviour, I believe the idea that being more in control enables us to be more genuinely ourselves, is itself an aspect of (neuro)normativity. It's kind of the idea that "we our more genuinely ourselves when we behave as both we and others would prefer us to." An alternative would be to expand the scope of what is considered socially normal or acceptable, so that it encompasses people on both sides of the gap, and out beyond.
This article suggests that we need to unlearn neuronormativity itself:
The response it provoked is unsurprising.
I particularly liked what she had to say about power.
(I broke up the slab of text a bit)
Anyway, now that I am in the later years of my life, I need to continue to be aware of how I am coming off to other people.
I find the monotropic theory of autism - a theory developed by autistic people - good to think with and you might find it interesting.
There's a good blog on it here
https://oolong.medium.com/starting-points-for-understanding-autism-3573817402f2
And a whole resource site here
https://monotropism.org/explanations/
It's definitely been a lot of food for thought for me.
I'm pretty sure I am. I stim very quietly. I remember getting teased in high school because I'd mashed a particular button on my calculator until the label wore off. Nobody told me about stimming but...yep. I think that's what it was, and the constant self-talk, and being really tone deaf to social cues.
I think I've become a much more socially reasonable person after I started learning about autism, partly through my son's experience. It's like I start filing away "OK, this is why I do that" and suddenly I just start adapting without thinking about it. Also, while his autism is a lot more pronounced, he kinda reminds me of myself when I was a kid, just less restrained, which gives me a lot of mixed feelings. Early puberty was really hard on me, and it's looking to be really hard on him.
I also strongly relate to the craving/hating routine thing. I feel like I need routines to order my life but I viscerally resent them for intruding.
I read somewhere that this is a theory for why a lot of people with really severe cases are nonverbal. Speech development happens very early in life, and for someone who is really really sensitive, they just can't pick out one noise from the general chaos of reality that's invading their heads.
This is my experience of any crowded social situation, especially when I was younger, and explains why I've long preferred written communication to speech, I think.
None of this being scientific, of course, just my subjective experience as a suspected autistic guy who spends a fair deal of time working around folks with autism.
When they arrive as primary/reception pupils, the SLD is not yet defined, and we think of 'global developmental delay'. It is by puberty that we can begin to think of SLD rather than GDD.
The communication needs of different pupils do not harmonise, and we take a total communication approach, where all communication is delivered through multiple channels, including speech, signing, gestures, symbols, objects of reference. These channels are available for both receptive and expressive language. Each pupil has a programme from a speech and language therapist, and a bespoke communication plan. Resources, reports and training are all shared with parents and carers - take up/engagement varies. IME 'total communication' approaches are very effective.
A key approach we use is of sensory integration therapy. We take time to analyse the sensory profile of each learner, devising programmes and environments to support regulation. Once again, the sensory needs of different pupils do not harmonise. Resources, reports and training are all shared with parents and carers - take up/engagement varies. IME 'sensory integration' approaches are very effective.
In my work with people who will function for their entire life at a very very early development level (PLD), I would not discount behaviourist approaches. For example, with students who do not cooperate with personal care or clothing, whose decency needs maintaining.
Heron
I think there's no one size fits all and a lot of own voice advocacy by its nature comes from a different place to the needs you're describing.
Where we draw the line between what can be accommodated by challenging neuronormalisation and what actually threatens life chances and health and safety might be somewhat movable.
I was reading a FB thread the other day about some lad who'd worn a frock to his prom and some of the comments really exemplified how there is a body of people who operate with an unchallenged conviction which to them is so obvious they don't even think if it as an actual held position that Different = Wrong = Bad
That makes this all the more challenging.
- SLD is Specific Learning Disorder (or is it Severe Learning Difficulties)
- GDD is Global Development Delay, and
- PLD is Proficiency Level Descriptor
Is that correct?Apologies, I did use the phrase 'Severe Learning Disabilities' and 'Global Developmental Delay' in full prior to the abbreviations, but did not fully telegraph the use. But I neglected to use the expanded 'Profound Learning Disabilities' for PLD (often used as 'Profound and Multiple Learning Disabilities PMLD in UK_.
Thanks for seeking clarity.
Even there though I hope we can agree that C also deserves some support to figure out why they are trying to strip? Are the clothes giving them uncomfortable sensory issues? Maybe they need different clothes.
I wonder if thinking in terms of there being a line helps or hinders - for example, people who at a point of assessment might be one "side" of a line, but whose needs overlap that line, as well as possibly changing as they develop. In other words, that challenging neuronormalisation can potentially extend as far as people are willing to contemplate - ultimately resulting in a continuous graduation of what *all* people need to navigate society. And recognising that society doesn't abruptly end at the boundaries of special schools, or at the walls of a home in which someone with special needs grows up.
In relation to needs, the article to which I previously linked points out that rather than thinking in terms of accommodations, "it is preferable to speak of adaptive measures or inclusive measures".
I was also thinking about the extent to which adaptive measures depend on the society which is being adapted. Different cultures have different social norms. For example, the definition of "decency" varies widely.
This recent article points out that And
I would agree with that, it should always be about finding out one someone needs and meeting those.
The difficulty is when people try to make other people's reactions to B a problem for B to solve, and claim it would be better for B to erase the behaviours that produce negative reactions.
NAS tells me that there are 700,000 people with autism in the UK.
NHS tells me that 350,000 people in the UK have severe learning disabilities.
NHS tells me that 'about a third' of the people in the UK with severe learning disabilities have a diagnosis of autism. Lets call it 115,000.
The kind of pupils I work with represent (rough and ready) perhaps 16% of the people with autism in the UK.
I understand potential problems with those numbers - but they are what we've got - and as I am using them to foreground a hidden group I hope we can graciously avoid pulling them apart.
The voices of the young people I work with are very hard to hear, and 'own voice' is often impossible. Whilst I follow Epiphany threads, I do not post - but do so briefly here as it seems to me there are missing voices and perspectives on SoF wrt autism. I do not think it is possible for those voices to be heard here, except perhaps via skilled work of others.
Thank you @Gwai . You sum up well part of the approach I take in my teaching.
Going back to the title of the thread - I really recommend total communication and sensory integration models.
As part of the Iona Community, I pray each day that 'hidden things might be revealed to us, and new ways found to touch the lives of all'. For me, this prayer is for my work with young people with SLD and Autism - as, within a strong ethical framework, I strive to support movement towards life in all its fullness.
And on the thread topic, I meant to mention that Intensive Interaction is an essential approach to autism in early childhood - whether or not there is learning disability evident. It's so good at relationship building it can almost seem magic!
Something they say at my job is "all behavior is communication." Everything is, even with someone who is complete non verbal and stims with the kind of intensity that it's hard to tell if their attention is anywhere at all for more than a second, you can learn to read moods by the intensity of stims. And someone like that may respond to verbal cues, or a gentle tug on the arm of "please sit down so I can put you socks on." And there's a degree, as with animals (and humans are animals) of "I'm familiar with you, you know me, we're comfortable doing this, right?"
It really is kind of beautiful if you get to know someone, and I've known some of these guys for ten years.
Shaving, I think, can be a real edge case, no pun intended. It's not a medical need. In my experience, very few guys like to do it. But maintaining a proper looking beard is more effort, and can get unhygienic for men who are sloppy eaters. And if someone objects to the experience of "my caretaker is putting this weird thing in my face," does that mean they consent to growing a beard? Is growing a beard an intentional choice? Or being clean shaven? Should society expect a certain "standard" look for men?
I find the ethics of it interesting, though I usually aim for a clean shave for the folks I work with, because I think the lack shows a lack of concern on the professional end. Lacking clear communication, a guy should look nice and it's easier to look nice with a clean shave than with a scruffy beard. But it's an interesting ethical quandary to me.
On the other side, my father's care home shaved his beard despite him having expressed the desire that they not do so. His Parkinsons limited his processing speed towards the end and by the time the carer said "shall I shave this off?" he's mumbled an agreement before it sunk in (as everything else asked like that was "shall I clean your face"? "Shall we clean those teeth?" etc.) before he'd processed what was being asked.
It felt significant. He'd had that beard 40 years. About the one thing he had left. And it went.
Agreed. If there's a clear precedent and even the shade of clearly stated disagreement, that's abuse. Shame on them for, at best, being seriously unprofessional.
"Oh, sorry, it's an outside barber. We must have forgotten to tell them"
They didn't grasp how it mattered.
Yep, unprofessional. I do understand how those kinds of mistakes get made, and that's also a serious failure.
That sounds familiar. I'm unusual to have lasted as long as I have at my job, and it's partly because I've been working "relief" for years and don't need the money. It's exhausting and doesn't pay the bills to work full time. An my employer is probably one of the better ones in the industry. I know that retention took a major hit during COVID, and I have the feeling that a national policy of throttling immigration isn't going to help.
To be really specific, I work at an institutional facility for adults with disabilities, but it's all kind of similar. People who can't support themselves take a lot of resources. My employer runs on having a stellar, highly visible reputation for being do-gooders and having had a legendary executive director (retired a few years ago.) But I get the sense it's hard everywhere.
https://www.ucl.ac.uk/news/2023/jun/number-autistic-people-england-may-be-twice-high-previously-thought
Link to academic article here
https://pmc.ncbi.nlm.nih.gov/articles/PMC10114511/
Gwai,
Epiphanies Host
https://www.mencap.org.uk/sites/default/files/2016-11/Intensive Interraction 04.pdf
https://www.justonenorfolk.nhs.uk/speech-language/extra-help-for-early-communication/attention-autism/
https://www.fiveacrewood.co.uk/wp-content/uploads/2024/06/A-Total-Communication-Approach.pdf
https://thinkingautismguide.com/2022/07/which-therapies-actually-help-autistic-children.html
https://thekelsey.org/in-conversation-with-shannon-des-roches-rosa-author-thinking-persons-guide-to-autism/
https://www.washingtonpost.com/lifestyle/2019/10/16/how-listening-autistic-adults-helped-me-understand-support-my-son/