Another thing I would recommend to anyone who has a young autistic child but isn't themselves autistic--or is but wants another approach than what their own parents used--is to find a group of autistic adults and pay attention.
By the way, @Heron when you share links, it can be helpful to talk about why you think those links are helpful. I'm not scolding you, but three links at once can be a bit much.
@Caissa : Can I get a British definition? I just scanned that document and didn't get a sense that there was a distinct definition that felt alien to my American sense. Granting, I might've overlooked something.
I don't know a British definition. The reason I ask is in NA "learning disabilities" usually refers to Specific Learning Disabilities, language in the DSM. Ex. Dysgraphia, dyslexia, dyscalculia. Reading the information sheet put out by a British organization it seemed that "learning disabilities" was being used in a different and/or broader sense.
I do not know the Learning Disability Association of America but they aren't obviously evil and they define learning disabilities as
Learning disabilities vary from individual to individual and may present in a variety of ways. Learning disabilities may manifest as difficulty: (1) processing information by visual and auditory, means, which may impact upon reading, spelling, writing, and understanding or using language, (2) prioritizing, organizing, doing mathematics, and following instructions, (3) storing or retrieving information from short or long term memory, (4) using spoken language, and (5) clumsiness or difficulty with handwriting.
Yes, it’s different in the UK. What are called learning disabilities in the US are called specific learning difficulties in the UK. Learning disability in the UK refers specifically to the ICD 10 category F70 (not sure the code in ICD 11) International researchers are now starting to use the term intellectual disability as people often confuse these two terms. It is still labelled “mental retardation” in ICD10 but we don’t use that term in clinical correspondence and conversation nowadays because it has become an insult in everyday speech.
Diagnostically, in the UK learning disability is a condition with onset before age 18 that causes you to have a significant (i.e, first centile) impairment in cognitive AND adaptive functioning (everyday living skills).
The significant cognitive impairment element is usually operationalised as an IQ under 70 on the Wescheler Adult Intelligence Scale 4th Edition (4th). Use a different scale you’d potentially get different numbers, it is really statistically about being two standard deviations away from the centre of a normal distribution.
However, all such tests are based on cultural and other assumptions that need to be met to be valid, they are tool to support - rather than replace - clinical judgement.
This is further complicated in the UK because educational settings only talk in terms of learning difficulties, so someone described as having severe learning difficulties in an educational setting may be described as having a mild learning disability in an adult clinical setting.
By the way, @Heron when you share links, it can be helpful to talk about why you think those links are helpful. I'm not scolding you, but three links at once can be a bit much.
My son was diagnosed aged 11 as having an "Undiagnosed Learning Difficulty" (Or was it "Undiagnosed Learning Issue"?)
That was an actual diagnosis, which entitled him to extra time in exams. As "lack of time in exams" wasn't an problem, it didn't really help much!
Part of the diagnosis was based on the wide gap between his reading age (14) and his spelling age (9.5). However, having a reading age of 14 at the age of 11 was clearly not a problem, and a spelling age of 9.5 at age 11 wasn't significantly bad enough to warrant intervention, beyond extra homework. Hence the diagnosis of an "Undiagnosed" learning issue.
As an adult, he has been diagnosed with ADHD (which came as a surprise to me) and was told that if he pursued it he could probably get a diagnosis of autism as he is probably "nudging into the spectrum" (I think "nudging in" was my son's description.)
My son is convinced that his diagnosis of ADHD means that I would get a diagnosis too, if I sought it, as the traits that led to the diagnosis as definitely ones he's inherited from me! Similarly, if he's "nudging into the spectrum" then so am I (and I have had teacher friends say that if I was a child today, I'd definitely be referred.)
I still think that neither ADHD nor autism explain the brain-wiring which led to my son getting a diagnosis of "Undiagnosed Learning Difficulty."
From my own experience,.I can say that the combination can create a picture very different from just adding the two together, if you see what I mean. They cancel each other out sometimes and at other times intensify each other. Well that's impression anyway. Others dispute this on various grounds.
I can't remember how old your son is, but the concept of the two happening together was not even acknowledged until 2012.
He's 30. He's quite brilliant in many ways. I know I would say that, being his mother, but he is. It's frustrating for me, and a hundred times more frustrating for him, to have issues which mire him down and stop him from letting his light shine.
I can remember something from when he was about 4. His nursery class was going to bake fairy cakes and the nursery teacher was talking to them about baking prior to the activity. She asked the class if they knew something they were going to use that began with "f". The Loon's hand shot up. "Fanilla Essence!" he said.
His teacher spoke to me about it afterwards because she said it encapsulated my son. About half of the class couldn't have answered "flour." She hadn't expected any of them to have known about vanilla essence. The Loon had managed to overlook the obvious answer, had given a far more complex answer than was being looked for - but he'd also got it wrong, as "vanilla" doesn't start with an "f". That's him in a nutshell, she told me.
He was referred to be tested for dyslexia aged 7. His teacher told me that she didn't think he was dyslexic, but she wasn't sure what test she she did want and she thought another diagnosis might be shaken loose whilst testing for dyslexia. It didn't work - he's not dyslexic and nothing else came to light at that point.
I think historians often tend to the monotropic with obvious special interests but that can also co-exist with and complement the ADHD like approach of being drawn to the new, the shiny, the interesting detail and then tunnelling and rabbitholing into it in a more monotropic way. I think ways of thinking like this are so common among historians that it's just not thought odd at all so when it's a key part of one of us or someone else getting a 'diagnosis' it can seem flummoxing. Autistic or AuDHDers are a neurominority elsewhere but quite possibly the neuromajority or close to it in our profession?
I am in many ways like a pea in a pod with one of my academic collaborators but I am the one with the 'diagnosis' and they find it weird because I am just 'normal' to them :-)
I was 'normal' for my old set of fantasy role playing game mates as well - apart from being female.
It's hard to put into words and I know some people won't agree with me at all but I think in the future as awareness grows neurominorities won't normally depend on doctors to diagnose us but will learn to recognise ourselves and others, just as people who are of different sexualities or minority genders do.
For some things people will want to try prescribed medication and will go the doctor route or employers or schools may demand it as a basis for altering their ways to be more inclusive, but I think it will eventually become less common.
(Also tangent - 'fanilla essence' sounds perfectly right for a Doric speaker or person in a Doric speaking area - I would probably even write that if writing in Doric! teaching Scots speaking kids in English is known to be a thing that can make literacy harder than it could be - they've done stuff on this in Dundee schools)
I googled "hyperlexia" and don't think that was it, as his comprehension was generally excellent. The point at which his comprehension fell down was short instructions, which he often seemed to skim over without registering. Things like "Use black ink" "Leave a margin" "Write in capitals." Something like "Use raven-black ink" "Leave a 2.5 cm margin" "Write carefully in block capitals" worked much better.
If he didn't "get" a set of instructions first time, the answer was to make them more complex.
(FWIW, my initial post was to say that "undiagnosed" can be a diagnosis, or at least it could be in 2005, and I didn't check with my son before posting. But it's moved on and I won't post again until he's caught up with the thread and has an input into any future posts.)
Are you sure is was “undiagnosed” rather than “not otherwise specified” ? (The latter being a term used in various diagnostic systems to mean - we recognise something is different and is causing issues for this person, and it falls within domain x but we can not describe it any more accurately).
His school referred him to the Local Authority Educational Psychologist when he was seven, and that report referred to him as a "highly competent child." Then he was referred by the school again at 11, again to the Local Authority E. P. This time the E.P. agreed there was something, but the local authority budget wouldn't let him go further with a child who was, in many respects, excelling. As far as I recall the "diagnosis" of "Undiagnosed Learning Difficulty" allowed him to be in the system for e.g. extra time in exams. (My son, having now read the thread, says that he thought extra time was helpful.)
We were told we could go private to try to get a definite diagnosis, but our son didn't want that and said he would not co-operate. As we had experience (!) of what a refusal to co-operate entailed, we didn't go private. Had he wanted to get a diagnosis at any point thereafter, we would have done so.
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!
I think historians often tend to the monotropic with obvious special interests but that can also co-exist with and complement the ADHD like approach ... Autistic or AuDHDers are a neurominority elsewhere but quite possibly the neuromajority or close to it in our profession?
I don't think your profession is alone in this.
It's hard to put into words and I know some people won't agree with me at all but I think in the future as awareness grows neurominorities won't normally depend on doctors to diagnose us but will learn to recognise ourselves and others, just as people who are of different sexualities or minority genders do.
For some things people will want to try prescribed medication and will go the doctor route or employers or schools may demand it as a basis for altering their ways to be more inclusive, but I think it will eventually become less common.
Thanks for this - I've been musing about it, on and off, and thinking about implications and consequences of self-diagnosis (for example). A big question is whether it would be formally recognised and recorded.
The context that comes to mind whenever I think about this is dealing with the medical profession, and the care sector. Now that the wider medical profession appears to be getting the hang of dealing with neurodivergent# people, there might be more compelling reasons for getting it noted on someone's medical record - and even more so in the case of care sector (up to end-of-life care), when the ability to communicate might be impaired.
# I think there are still reasons for using the term, at least for the time being, despite Amandine Catala's comments in the previously linked article.
Quite. "Precise" could be another word. "Leave a margin" is just an incomplete instruction. Something like "use paragraphs", without any further explanation of the rules, is particularly unhelpful.
This past week CBS ran a report on the use of a folic like drug in treating autism spectrum disorder. That I would give a link to it and wonder what reaction you may have. The link.
This past week CBS ran a report on the use of a folic like drug in treating autism spectrum disorder. That I would give a link to it and wonder what reaction you may have. The link.
It looks like a potential treatment for some but not others. (Assuming the some have parents with deep enough pockets to find doctors with that particular skill set and knowledge).
Interestingly one of the autistic speakers and counselors I follow published a piece today about that very drug. He's not happy about the drug, the way autism is treated in that article--it's definitely treated like a problem to fix--or the way one person is treated as a sufficient sample size. Why Leucovorin is Not a “Breakthrough Treatment” For Autism
This past week CBS ran a report on the use of a folic like drug in treating autism spectrum disorder. That I would give a link to it and wonder what reaction you may have. The link.
I'd be extremely careful with anecdotal evidence in medicine. I wouldn't even post something like that until an awful lot of studies were done.
It's entirely possible that the kid was going to start talking anyway and someone is just shilling the story to sell a miracle cure.
And given that our current administration is veering really hard against public research, I'd take any such story with a yuge grain of salt. Bigly.
Seriously. There are an awful lot of quacks who pander to the parents of kids with disabilities, and with the change in political regime and the current veering into eugenics, expect more of the same.
Interestingly one of the autistic speakers and counselors I follow published a piece today about that very drug. He's not happy about the drug, the way autism is treated in that article--it's definitely treated like a problem to fix--or the way one person is treated as a sufficient sample size. Why Leucovorin is Not a “Breakthrough Treatment” For Autism
Apologies. I focused on making sure the link was okay rather than the content.
The problem with this, and similar stories, is that it presents different as bad and implies that any medical issue can be fixed with bit of research and the right doctor. Which is nonsense.
and the people they follow are usually good follows.
I see they were recently reposting Eric Michael Garcia who's an excellent journalist who wrote the book 'We're Not Broken Changing the Autism Conversation'
he's currently working on writing a new book on 'an exploration of autism, manhood and how to create a healthy version of masculinity for #ActuallyAutistic men' which sounds like it will be interesting too.
Hello,
Could people spoiler tag when linking hate sources/ sources of dangerous misinformation for illustrative purposes? And it's good to be clear what they are so people can gauge risk too.
Neither Facebook nor the Daily Mail are suitable sources for Epiphanies in the normal way of things and given how poorly moderated Facebook is we can't guarantee that people won't be exposed to illegal or traumatic material there if they follow the link
Totally understand why you've posted it @KarlLB ! And it may clue some people in to how dangerous this is - I completely support you on that, but it's a problematic link and I'm going to PM you as it also raises privacy concerns.
All parenting is hard, and it is easy to have sympathy with any parent reaching out for something that might help them. That is to say that parents are easily exploited by this kind of irresponsible clickbait from the Mail. And here we are with Vit B9/Calcium Folinate/ Leucovorin. The conversation around nutrition/diet for people with autism has had its snake oil salesmen for many years. (GFCF, feingold, keto)
Within the terms of the OP of this thread, there are responsible conversations to be had.
Parents have a responsibility for the health of their children, and this may well involve analytical work and structured planned support around food.
I've posted upthread about working with young people with severe learning disabilities and autism. Many have restricted diets and significant food anxieties - some seeking out non-food items to eat - this can lead to poor general health. Many have linked difficulties with constipation. Dental health is a linked issue, and a battle ground in many homes - regular teeth cleaning and dentist visits present obvious potential difficulties.
Really not sure where to hang this one. We have a number of threads dealing with Autism. I will put it here and see what happens. Our one grandson is 11 years old. He has been diagnosed on the spectrum disorder since he was four. Usually he gets along well, but he does have some problems dealing with anger.
Last Saturday he went to a community easter egg hunt. There were eggs all over the lawn of the park and into some of the bushes along one side. As usual, the organizers let the younger kids go first by age categories. Since he was among the older kids his group was last. He got really upset, throwing a tantrum in front of everyone saying it was not fair for the younger kids to go first. His father tried to calm him down. It took a lot of effort to get him to settle down, though.
Throughout the weekend his temper would flare. Once his dad offered him a yogurt that I brought. He refused to take it because he said it was mine. I tried to tell him it was for anyone. He still refused to take it.
Then there was a time when his four year old sister was sitting beside him. I think they were working on a Lego project together. She must have said something and he slugged her hard, then he acted as if nothing had happened.
I set up this scenario because of something that happened in Moscow, ID in 2022. Four college students, three female, and one male, were allegedly brutally murdered by someone in the graduate program at Washington State University. The thought was the graduate student had been attracted to one of the female students, but she put him off. One of the last conversations witnesses had heard among the females was about a man that had been stalking one of them, and the next day they were dead.
To the alleged perpetrator. It took six weeks before he was charged with the crime. He was a graduate student going for an advanced justice degree. He actually taught a class one of the women attended. The various times I have seen a video of him, he appeared to have a flat affect. People had reportedly said he was difficult to understand, and he did not seem to pick up on social ques very well.
Recently a psychologist hired by the defense has diagnosed him with autism spectrum disorder. His defense wants to use that as a mitigating factor should he be found guilty. He is being tried in Idaho which does have the death penalty. Essentially, the judge as ruled it is not reason enough to take the death penalty off the table, though the defense could bring it up during the sentencing phase should he be found guilty.
This has me concerned for my grandson, given his violent outbursts. Puberty is not that far away for him which will present challenges of its own. At this stage, all I can do is take one day at a time.
I know not all Aspergers/Autism Spectrum Disorders turn out violent. Most lead very productive lives. Some even become heads of their own companies. My grandson was just nominated for an advanced program in middle school which will lead to the STEM program in High School. However, his parents have decided to keep in his current school since he is doing well there. They plan on supplementing his education with alternative options.
Really not sure where to hang this one. We have a number of threads dealing with Autism. I will put it here and see what happens. Our one grandson is 11 years old. He has been diagnosed on the spectrum disorder since he was four. Usually he gets along well, but he does have some problems dealing with anger.
Laying aside the stereotypes...if I wanted to be helpful...what has been tried? What has been advised?
I've known some neurotypical assholes in my life, and some very gentle autistic folks. Also, working with people of various temperaments, if you approach a person thinking that they're a threat, they're likely going to respond as if you threatened them. If you approach a person thinking they're scary, especially if they're scared to begin with, they're likely to get more scared and more likely to act out.
I've been kinda that kid at some points, and I'm raising one now. It is hard, but I don't think catastrophizing with a scare story about a random mass shooter who happened to get an autism diagnosis is necessarily helpful.
Gramps, you sound upset and I sympathize. I would certainly know that how to help the children we love is hard. That said, you are going to find a better way to cope than bringing up random murderers who may or may not be autistic.
Also, if you want to talk about people, do not label them as disorders. Doubly so as no disorder ever turns out violent because people are not disorders, they're people. If you want to talk about autism, call it autism not a disorder.
@Gramps49 positive behavioural support approaches are typically used in the UK to support children in your grandson’s situation.
When someone engages in challenging behaviour (definition - behaviour that challenges our ability to support them, owing to nature/severity/frequency either compromising their access to the community or the safety of themselves or others) it is useful to work out a why. A specialist can help with this.
It is usually not an anger problem. It is often that their needs as a person with autism are not being met.
For example, they have not been adequately prepared for a change of plan (a social story could have been used), their normal routine has been disrupted, the sensory environment has become overwhelming, the communication the person interacting with them was using was confusing or too complicated - they might need less words and some visual support etc etc.
Taking the Easter egg hunt example. Had anyone sat down with your grandson and explained what would happen before he got there ? I am guessing he was told he would go to a place, and then everyone would search for eggs. He was probably not told, you will go somewhere, then you will have to wait for a period of time till your group is called to find eggs. So from his perspective, the event was not happening in the way he was expecting (people with autism usually need things to be predictable).
The weekend as a whole was different from normal - which probably also made the whole weekend unpredictable for him. How well he was prepared for this, and what coping strategies he has, would effect how well he could manage this. If their were visitors to the family it is likely that lots of things were done differently, and the environment may have been more noisy.
So what would you do - perhaps the week before ( if he can cope with being told things that far in advance) you sit down with him and do an Easter weekend timetable with him so that what is happening will be easier for him to get his head round. You might do some social stories for any novel activities happening over the weekend (like the egg hunt). You might think about whether the demands are at a level he can manage - e.g. if you know he can’t tolerate waiting more than 5 minutes and that the egg hunt would involve waiting 20 minutes, you might contact the organisers and explain he has additional needs and ask if he can search with the first group as an accommodation to his needs. If he can’t, you might decide not to take him to that event, and perhaps arrange an egg hunt at home for him. You might also, on a visitor weekend, work out with the person how to indicate they need a break - build in breaks or break out spaces - and build in opportunities to stim without being critiqued and to spend time on special interests that relax them.
Unfortunately, what often happens for people with autism is that everyone knows the person has autism but in holiday situations they don’t adjust their expectations of the person - because it is traditional - they just expect the person to somehow just deal with it.
Unfortunately, what often happens for people with autism is that everyone knows the person has autism but in holiday situations they don’t adjust their expectations of the person - because it is traditional - they just expect the person to somehow just deal with it.
This. Thank you!
Was just hearing about a friend of mine having some bad meltdowns and basically said 'Well of course - she had to go on holiday with her partner- holidays are the worst - absolute nightmares'
Holidays, events, occasions! Nightmares the lot of them, where unexpected things happen, where you lose all your routines or are expected to be in noisy overloading settings or to undergo terrible non- safe sensory stuff without any of your normal safe things because 'tradition' or expectations! And as a kid you have basically zero control over these situations and will be called naughty or selfish if you show your distress! You're supposed to be enjoying yourself! People have gone to a lot of trouble!
And these are not 'tantrums' - they are meltdowns. Meltdowns happen when someone is overloaded either by sensory or unexpected stuff. They're overwhelming panic and anxiety which can come out as anger - and then gets judged as anger when you're actually incredibly distressed and don't have control because you've been overloaded and need to get out of the distressing situation to calm down.
To quote Dr Luke Beardon, autism + environment = outcome
Being an autistic child sucks because you have so little control over your environment and schedule.
To give an example of why having some control is so important- I had to go to a leaving do in a noisy pub at the weekend. Absolute hell as an environment - and breaking my routine- the kind of thing that can bring on a meltdown.
My friend whose leaving do it was had thoughtfully found me a seat and table so I could stay out of the main crowd and set me up with drinks so I didn't have to push through to a noisy bar. I had brought a pair of loops earplugs which damp down noise but still allow conversation and had my spinner rings for anxiety and a cloth with a pleasant and comforting scent on it for stress in my pocket.
It was still stressful and my head felt like it had been rung like a bell afterwards but I was able to leave when I chose - when I couldn't take the noise anymore and had seen everyone, and I was able to work out what to bring to make things bearable and I was accommodated - so I was fine. And I was able to rest and not socialise the next day - which I needed- because as an adult I have a fair bit of control over my schedule.
Children don't have the control over their schedule or environment that I have and may not know about triggers for meltdowns so as to devise their own ways of making them less likely and then they get judged because put in a situation that will cause a meltdown - they have a meltdown.
Comments
I could be wrong but it felt like the use of the term in that pamphlet was different. I could be wrong on that score.
ETA Here is the Learning Disability Association of Canada's official definition: https://www.ldac-acta.ca/official-definition-of-learning-disabilities/
Diagnostically, in the UK learning disability is a condition with onset before age 18 that causes you to have a significant (i.e, first centile) impairment in cognitive AND adaptive functioning (everyday living skills).
The significant cognitive impairment element is usually operationalised as an IQ under 70 on the Wescheler Adult Intelligence Scale 4th Edition (4th). Use a different scale you’d potentially get different numbers, it is really statistically about being two standard deviations away from the centre of a normal distribution.
However, all such tests are based on cultural and other assumptions that need to be met to be valid, they are tool to support - rather than replace - clinical judgement.
Thank you. Noted
That was an actual diagnosis, which entitled him to extra time in exams. As "lack of time in exams" wasn't an problem, it didn't really help much!
Part of the diagnosis was based on the wide gap between his reading age (14) and his spelling age (9.5). However, having a reading age of 14 at the age of 11 was clearly not a problem, and a spelling age of 9.5 at age 11 wasn't significantly bad enough to warrant intervention, beyond extra homework. Hence the diagnosis of an "Undiagnosed" learning issue.
As an adult, he has been diagnosed with ADHD (which came as a surprise to me) and was told that if he pursued it he could probably get a diagnosis of autism as he is probably "nudging into the spectrum" (I think "nudging in" was my son's description.)
My son is convinced that his diagnosis of ADHD means that I would get a diagnosis too, if I sought it, as the traits that led to the diagnosis as definitely ones he's inherited from me! Similarly, if he's "nudging into the spectrum" then so am I (and I have had teacher friends say that if I was a child today, I'd definitely be referred.)
I still think that neither ADHD nor autism explain the brain-wiring which led to my son getting a diagnosis of "Undiagnosed Learning Difficulty."
I can't remember how old your son is, but the concept of the two happening together was not even acknowledged until 2012.
I can remember something from when he was about 4. His nursery class was going to bake fairy cakes and the nursery teacher was talking to them about baking prior to the activity. She asked the class if they knew something they were going to use that began with "f". The Loon's hand shot up. "Fanilla Essence!" he said.
His teacher spoke to me about it afterwards because she said it encapsulated my son. About half of the class couldn't have answered "flour." She hadn't expected any of them to have known about vanilla essence. The Loon had managed to overlook the obvious answer, had given a far more complex answer than was being looked for - but he'd also got it wrong, as "vanilla" doesn't start with an "f". That's him in a nutshell, she told me.
He was referred to be tested for dyslexia aged 7. His teacher told me that she didn't think he was dyslexic, but she wasn't sure what test she she did want and she thought another diagnosis might be shaken loose whilst testing for dyslexia. It didn't work - he's not dyslexic and nothing else came to light at that point.
I posted much earlier on the thread about monotropism which is a useful concept.
I think historians often tend to the monotropic with obvious special interests but that can also co-exist with and complement the ADHD like approach of being drawn to the new, the shiny, the interesting detail and then tunnelling and rabbitholing into it in a more monotropic way. I think ways of thinking like this are so common among historians that it's just not thought odd at all so when it's a key part of one of us or someone else getting a 'diagnosis' it can seem flummoxing. Autistic or AuDHDers are a neurominority elsewhere but quite possibly the neuromajority or close to it in our profession?
I am in many ways like a pea in a pod with one of my academic collaborators but I am the one with the 'diagnosis' and they find it weird because I am just 'normal' to them :-)
I was 'normal' for my old set of fantasy role playing game mates as well - apart from being female.
It's hard to put into words and I know some people won't agree with me at all but I think in the future as awareness grows neurominorities won't normally depend on doctors to diagnose us but will learn to recognise ourselves and others, just as people who are of different sexualities or minority genders do.
For some things people will want to try prescribed medication and will go the doctor route or employers or schools may demand it as a basis for altering their ways to be more inclusive, but I think it will eventually become less common.
(Also tangent - 'fanilla essence' sounds perfectly right for a Doric speaker or person in a Doric speaking area - I would probably even write that if writing in Doric! teaching Scots speaking kids in English is known to be a thing that can make literacy harder than it could be - they've done stuff on this in Dundee schools)
If he didn't "get" a set of instructions first time, the answer was to make them more complex.
His school referred him to the Local Authority Educational Psychologist when he was seven, and that report referred to him as a "highly competent child." Then he was referred by the school again at 11, again to the Local Authority E. P. This time the E.P. agreed there was something, but the local authority budget wouldn't let him go further with a child who was, in many respects, excelling. As far as I recall the "diagnosis" of "Undiagnosed Learning Difficulty" allowed him to be in the system for e.g. extra time in exams. (My son, having now read the thread, says that he thought extra time was helpful.)
We were told we could go private to try to get a definite diagnosis, but our son didn't want that and said he would not co-operate. As we had experience (!) of what a refusal to co-operate entailed, we didn't go private. Had he wanted to get a diagnosis at any point thereafter, we would have done so.
I don't think your profession is alone in this.
Thanks for this - I've been musing about it, on and off, and thinking about implications and consequences of self-diagnosis (for example). A big question is whether it would be formally recognised and recorded.
The context that comes to mind whenever I think about this is dealing with the medical profession, and the care sector. Now that the wider medical profession appears to be getting the hang of dealing with neurodivergent# people, there might be more compelling reasons for getting it noted on someone's medical record - and even more so in the case of care sector (up to end-of-life care), when the ability to communicate might be impaired.
# I think there are still reasons for using the term, at least for the time being, despite Amandine Catala's comments in the previously linked article.
Quite. "Precise" could be another word. "Leave a margin" is just an incomplete instruction. Something like "use paragraphs", without any further explanation of the rules, is particularly unhelpful.
It looks like a potential treatment for some but not others. (Assuming the some have parents with deep enough pockets to find doctors with that particular skill set and knowledge).
[Link is fine - Tubbs]
I'd be extremely careful with anecdotal evidence in medicine. I wouldn't even post something like that until an awful lot of studies were done.
It's entirely possible that the kid was going to start talking anyway and someone is just shilling the story to sell a miracle cure.
And given that our current administration is veering really hard against public research, I'd take any such story with a yuge grain of salt. Bigly.
Seriously. There are an awful lot of quacks who pander to the parents of kids with disabilities, and with the change in political regime and the current veering into eugenics, expect more of the same.
Apologies. I focused on making sure the link was okay rather than the content.
The problem with this, and similar stories, is that it presents different as bad and implies that any medical issue can be fixed with bit of research and the right doctor. Which is nonsense.
https://thinkingautismguide.com/
The editors and contributors are great mix of autistic people, people who are parents of autistic people and people who are both
https://thinkingautismguide.com/about
They're on Bluesky as well
https://bsky.app/profile/thinkingautism.bsky.social
and the people they follow are usually good follows.
I see they were recently reposting Eric Michael Garcia who's an excellent journalist who wrote the book 'We're Not Broken Changing the Autism Conversation'
http://www.ericmgarcia.net/
he's currently working on writing a new book on 'an exploration of autism, manhood and how to create a healthy version of masculinity for #ActuallyAutistic men' which sounds like it will be interesting too.
link removed for privacy concerns -was to (1) Facebook (2) Daily Mail video link on Facebook. See hosting - L
Could people spoiler tag when linking hate sources/ sources of dangerous misinformation for illustrative purposes? And it's good to be clear what they are so people can gauge risk too.
Neither Facebook nor the Daily Mail are suitable sources for Epiphanies in the normal way of things and given how poorly moderated Facebook is we can't guarantee that people won't be exposed to illegal or traumatic material there if they follow the link
Totally understand why you've posted it @KarlLB ! And it may clue some people in to how dangerous this is - I completely support you on that, but it's a problematic link and I'm going to PM you as it also raises privacy concerns.
Thanks!
Louise
Epiphanies Host
Within the terms of the OP of this thread, there are responsible conversations to be had.
Parents have a responsibility for the health of their children, and this may well involve analytical work and structured planned support around food.
https://www.autism.org.uk/advice-and-guidance/topics/behaviour/eating/all-audiences
I've posted upthread about working with young people with severe learning disabilities and autism. Many have restricted diets and significant food anxieties - some seeking out non-food items to eat - this can lead to poor general health. Many have linked difficulties with constipation. Dental health is a linked issue, and a battle ground in many homes - regular teeth cleaning and dentist visits present obvious potential difficulties.
Link direct to misinformation source - spoilered because reasons already given
There was a terrifying amount of (TW - violence)
We have so, so far to go.
I have personally resolved to stop using the term ASD. While the "disorder" word is in there we will never be free of this nonsense.
Last Saturday he went to a community easter egg hunt. There were eggs all over the lawn of the park and into some of the bushes along one side. As usual, the organizers let the younger kids go first by age categories. Since he was among the older kids his group was last. He got really upset, throwing a tantrum in front of everyone saying it was not fair for the younger kids to go first. His father tried to calm him down. It took a lot of effort to get him to settle down, though.
Throughout the weekend his temper would flare. Once his dad offered him a yogurt that I brought. He refused to take it because he said it was mine. I tried to tell him it was for anyone. He still refused to take it.
Then there was a time when his four year old sister was sitting beside him. I think they were working on a Lego project together. She must have said something and he slugged her hard, then he acted as if nothing had happened.
I set up this scenario because of something that happened in Moscow, ID in 2022. Four college students, three female, and one male, were allegedly brutally murdered by someone in the graduate program at Washington State University. The thought was the graduate student had been attracted to one of the female students, but she put him off. One of the last conversations witnesses had heard among the females was about a man that had been stalking one of them, and the next day they were dead.
To the alleged perpetrator. It took six weeks before he was charged with the crime. He was a graduate student going for an advanced justice degree. He actually taught a class one of the women attended. The various times I have seen a video of him, he appeared to have a flat affect. People had reportedly said he was difficult to understand, and he did not seem to pick up on social ques very well.
Recently a psychologist hired by the defense has diagnosed him with autism spectrum disorder. His defense wants to use that as a mitigating factor should he be found guilty. He is being tried in Idaho which does have the death penalty. Essentially, the judge as ruled it is not reason enough to take the death penalty off the table, though the defense could bring it up during the sentencing phase should he be found guilty.
This has me concerned for my grandson, given his violent outbursts. Puberty is not that far away for him which will present challenges of its own. At this stage, all I can do is take one day at a time.
I know not all Aspergers/Autism Spectrum Disorders turn out violent. Most lead very productive lives. Some even become heads of their own companies. My grandson was just nominated for an advanced program in middle school which will lead to the STEM program in High School. However, his parents have decided to keep in his current school since he is doing well there. They plan on supplementing his education with alternative options.
Laying aside the stereotypes...if I wanted to be helpful...what has been tried? What has been advised?
I've known some neurotypical assholes in my life, and some very gentle autistic folks. Also, working with people of various temperaments, if you approach a person thinking that they're a threat, they're likely going to respond as if you threatened them. If you approach a person thinking they're scary, especially if they're scared to begin with, they're likely to get more scared and more likely to act out.
I've been kinda that kid at some points, and I'm raising one now. It is hard, but I don't think catastrophizing with a scare story about a random mass shooter who happened to get an autism diagnosis is necessarily helpful.
Also, if you want to talk about people, do not label them as disorders. Doubly so as no disorder ever turns out violent because people are not disorders, they're people. If you want to talk about autism, call it autism not a disorder.
Gwai
Epiphanies Host
When someone engages in challenging behaviour (definition - behaviour that challenges our ability to support them, owing to nature/severity/frequency either compromising their access to the community or the safety of themselves or others) it is useful to work out a why. A specialist can help with this.
It is usually not an anger problem. It is often that their needs as a person with autism are not being met.
For example, they have not been adequately prepared for a change of plan (a social story could have been used), their normal routine has been disrupted, the sensory environment has become overwhelming, the communication the person interacting with them was using was confusing or too complicated - they might need less words and some visual support etc etc.
Taking the Easter egg hunt example. Had anyone sat down with your grandson and explained what would happen before he got there ? I am guessing he was told he would go to a place, and then everyone would search for eggs. He was probably not told, you will go somewhere, then you will have to wait for a period of time till your group is called to find eggs. So from his perspective, the event was not happening in the way he was expecting (people with autism usually need things to be predictable).
The weekend as a whole was different from normal - which probably also made the whole weekend unpredictable for him. How well he was prepared for this, and what coping strategies he has, would effect how well he could manage this. If their were visitors to the family it is likely that lots of things were done differently, and the environment may have been more noisy.
So what would you do - perhaps the week before ( if he can cope with being told things that far in advance) you sit down with him and do an Easter weekend timetable with him so that what is happening will be easier for him to get his head round. You might do some social stories for any novel activities happening over the weekend (like the egg hunt). You might think about whether the demands are at a level he can manage - e.g. if you know he can’t tolerate waiting more than 5 minutes and that the egg hunt would involve waiting 20 minutes, you might contact the organisers and explain he has additional needs and ask if he can search with the first group as an accommodation to his needs. If he can’t, you might decide not to take him to that event, and perhaps arrange an egg hunt at home for him. You might also, on a visitor weekend, work out with the person how to indicate they need a break - build in breaks or break out spaces - and build in opportunities to stim without being critiqued and to spend time on special interests that relax them.
Unfortunately, what often happens for people with autism is that everyone knows the person has autism but in holiday situations they don’t adjust their expectations of the person - because it is traditional - they just expect the person to somehow just deal with it.
This. Thank you!
Was just hearing about a friend of mine having some bad meltdowns and basically said 'Well of course - she had to go on holiday with her partner- holidays are the worst - absolute nightmares'
Holidays, events, occasions! Nightmares the lot of them, where unexpected things happen, where you lose all your routines or are expected to be in noisy overloading settings or to undergo terrible non- safe sensory stuff without any of your normal safe things because 'tradition' or expectations! And as a kid you have basically zero control over these situations and will be called naughty or selfish if you show your distress! You're supposed to be enjoying yourself! People have gone to a lot of trouble!
And these are not 'tantrums' - they are meltdowns. Meltdowns happen when someone is overloaded either by sensory or unexpected stuff. They're overwhelming panic and anxiety which can come out as anger - and then gets judged as anger when you're actually incredibly distressed and don't have control because you've been overloaded and need to get out of the distressing situation to calm down.
To quote Dr Luke Beardon, autism + environment = outcome
Being an autistic child sucks because you have so little control over your environment and schedule.
To give an example of why having some control is so important- I had to go to a leaving do in a noisy pub at the weekend. Absolute hell as an environment - and breaking my routine- the kind of thing that can bring on a meltdown.
My friend whose leaving do it was had thoughtfully found me a seat and table so I could stay out of the main crowd and set me up with drinks so I didn't have to push through to a noisy bar. I had brought a pair of loops earplugs which damp down noise but still allow conversation and had my spinner rings for anxiety and a cloth with a pleasant and comforting scent on it for stress in my pocket.
It was still stressful and my head felt like it had been rung like a bell afterwards but I was able to leave when I chose - when I couldn't take the noise anymore and had seen everyone, and I was able to work out what to bring to make things bearable and I was accommodated - so I was fine. And I was able to rest and not socialise the next day - which I needed- because as an adult I have a fair bit of control over my schedule.
Children don't have the control over their schedule or environment that I have and may not know about triggers for meltdowns so as to devise their own ways of making them less likely and then they get judged because put in a situation that will cause a meltdown - they have a meltdown.