[Misc] Autism - Neurodiversity

[BadFish]

I'm sure he will.

A lot of parents will get very defensive about their autistic kids' behaviour.
I've done it myself, several times.
As autism is a spectrum disorder, it is often not easy to establish whether the child has challenges or not.
My son presents as neuro-typical, so was often considered to be a spoilt brat, or me a bad parent when he was having a meltdown in public.

To a certain extent, many of the triggers for an autistic meltdown are similar to spoilt brat behaviour.
However the challenge is, that an autistic meltdown, isn't something which can be managed in the same way as a neuro-typical child.
The sensory overload that occurs to them, is all consuming, it isn't something you can just snap them out of or prevent by being authorative with them.

It took me years to be able to accept that I had to let it just run it's course.
In reality the meltdown had been building for several hours and I was not aware of it.
Charlie became better at being able to tell me that his anxiety was becoming an issue, before the meltdown was triggered.
That was after several years in a special school, where professionals had been working with him and helping him understand his condition.

I agree that Autism can be used as an excuse for poor behaviour/parenting, but I'd be careful about rushing to judgement.

An excellent post and my experiences too.

 

[Easy 10]

I haven't read the thread so apologies if this has already been mentioned, but there's a programme on BBC2 tomorrow at 9pm called "Inside Our Autistic Minds".

- Chris Packham helps an autistic football fan explain why changes can be disastrous, and a rapper who can be hypersensitive to noise reveals how overwhelming life can be.

 

[BadFish]

I think the level of support someone needs is a separate point from whether or not anyone could benefit from a 'cure'. It's not an either/or choice. We should support people with autism. But that doesn't mean we should make no attempt to learn what might cause it. I disagree with the point that we're all on the spectrum and our brains are all equally different. Some people's autism has a much more negative impact on their lives that others. Some people with autism would not be without it (exampled in this thread), but others end their lives because of it (or because society can't meet their needs).

When someone's autism (mixed with society) completely ruins that person's life, I don't see why we would have no interest in researching whether or not it's possible to prevent people being so negatively affected by autism in the future. Of course it might not be possible to find anything useful, but I'd expect us to research it.

I totally agree with what you are saying and this is a debate that is raging across the autism community. Many high functioning autistic people are flying the flag for autism as a difference rather than a disability. However the autistic people you are describing here are not feeling a part of this movement for the reasons you describe.

The challenge is that the spectrum is so wide and varied it is hard to represent everyone. If a way of preventing autism was found many people would be delighted but also many people would be furious (as they already are with organisations that discuss a cure).

 

[Solid at the back]

With regards to all of this, I'm struggling with our 9 year old who has autism and probable adhd and 4 Yr old going for assessment for autism who has also speech and language problems. 9 year is having school refusal and it's such hard work dealing with it all. I have a late diagnosis of autism and adhd also which really affects my sensory world which has now stopped me going to amex(can't stand sitting amongst loads of people also where you cant move around), preferred standing back in the old days. Seems to have got worse as ive got older, I used drink before just to get away from myself and basically used masking to pretend I was someone different than who I really was. So early diagnosis is very useful for school years etc and the pressures of life which will occur more for someone who is autistic. Btw this is not a self pity message.

I can relate to this. Its so tough. How old were you when you were diagnosed? Did that help you? I'm 34 and feel that if there was the awareness like there is now that I would have been diagnosed with ASD. Same as my dad. I see many of my own traits in my son, albeit his are far more complex then mine. I was always called socially awkward, have very funny routines, I hate things being sprung on me, even small things.

 

[Sheebo]

I will do my best to answer them and certainly won't assume anything other than genuine interest. If you prefer you and PM me too

No let’s do it here as I guess ‘education’ is good for everyone, including my me. I said something on nsc on a thread once along the lines of ‘I’m sure we’re all on the spectrum somewhere’ and a poster (can’t remember who) said that was really offensive. They did seem to know a lot on the subject, so naturally I apologised for any offence caused and explained my comment was not meant at all to be nasty / confrontational etc.

So here’s my main questions on autism (and I think one of my kids probably had it etc but have been told it’s so hard to get diagnosed).

The ‘spectrum’ is just an opinion of several doctors right? So we’re all going on a matter of opinion from these spectrum makers? There’s also no medical black and white way to diagnose autism - is that correct? I struggle with illnesses that are diagnosed on opinion and spectrums etc - as surely it’s all subjective? I’m not saying people don’t have it but the level they’re considered is purely down to a doctor or two placing them somewhere on this spectrum? What if they’re wrong?

I mean that in the absolute nicest possible way - I’m intrigued and not poo pooing anything, it’s just always interested me…

 

[Triggaaar]

I totally agree with what you are saying and this is a debate that is raging across the autism community. Many high functioning autistic people are flying the flag for autism as a difference rather than a disability. However the autistic people you are describing here are not feeling a part of this movement for the reasons you describe.

The challenge is that the spectrum is so wide and varied it is hard to represent everyone. If a way of preventing autism was found many people would be delighted but also many people would be furious (as they already are with organisations that discuss a cure).

Yep, that all makes sense. I can understand that some people don't feel disabled and don't want to be labelled as such. It's offensive to them to suggest they have a problem. Society can learn here to better treat people with differences. But someone with autism who is happy should also understand that there are people who are far from happy. If it was possible to reduce the number of people born with autism, they shouldn't see that as an insult to them personally, they should understand that it is a big problem for some other people.

 

[Triggaaar]

So here’s my main questions on autism (and I think one of my kids probably had it etc but have been told it’s so hard to get diagnosed).

The ‘spectrum’ is just an opinion of several doctors right? So we’re all going on a matter of opinion from these spectrum makers? There’s also no medical black and white way to diagnose autism - is that correct? I struggle with illnesses that are diagnosed on opinion and spectrums etc - as surely it’s all subjective? I’m not saying people don’t have it but the level they’re considered is purely down to a doctor or two placing them somewhere on this spectrum? What if they’re wrong?

I mean that in the absolute nicest possible way - I’m intrigued and not poo pooing anything, it’s just always interested me…

I think you are broadly correct. There are people here who know a lot more than me and they will no doubt give their experiences, but here's mine:
They can't do a blood test or brain scan and simply say who does and doesn't have autism. Instead they do cognitive testing, asking questions etc. I believe that they will look at the overall results and determine whether, in their opinion, a client has autism.

You will have cases where there really is no doubt, and all doctors looking at the results would agree that a client does or does not have autism. But I think there will be some people who have several traits associated with autism, but not enough to consider them autistic - or just enough to consider them autistic. So the idea of a spectrum does make sense. But that does not mean we're all on the spectrum. If someone's life is quite negatively impacted by autism, I imagine it can seem quite dismissive of their condition to say 'well we're all on the spectrum'. I'm certainly not suggesting you said that, but giving as example why some people might not like the comment.

My son has quite a few autistic traits and so we were given the option for him to have some tests (I believe it's better to know whether or not you have autism or any other disability, in order to better deal with life's challenges). We were given a list of traits, and going through them it seemed pretty obvious to us that he had autism. He was booked to see the specialist and we were told we'd have an answer fairly quickly. Well we didn't get an answer, he was asked to go for further tests, which he did. Eventually they concluded that he does not have autism, but the fact that they couldn't tell us that straight away does highlight that it's not a simple test and some people may have some traits associated with autism, whilst not being considered autistic.

Back to your question: I don't think it's quite as wishy-washy as we're all on the spectrum and it's all subjective, because some people very clearly do have autism whilst others very clearly do not, and the opinions of experts will all match in those cases. I imagine it's a much smaller number of people who are borderline. And the doctors don't just have a chat and then possibly get it wrong, the cognitive tests are advanced enough to give good diagnoses, rather than just a gut feeling.

 

[Comrade Sam]

Unfortunately funding, as with everything else is a major issue. Whilst CAMHS struggles (along with other bodies) to cope with the ever worsening state of the NHS, the COVID pandemic has greatly exasperated the mental health crises in society and this includes children and teenagers in massive numbers. For many and especially amongst those entering puberty to GCSEs it is only really picked up as mental health deteriorates and anxiety increases. Years can pass before overworked public services and schools come to a diagnosis and even longer before any concrete help is offered. It is heartbreaking to watch helplessly and educating the wider population of the needs of so many around them seems a long way off.
Thanks for raising the subject and at the very least educating the Albion faithful as a start.

 

[Sheebo]

I think you are broadly correct. There are people here who know a lot more than me and they will no doubt give their experiences, but here's mine:
They can't do a blood test or brain scan and simply say who does and doesn't have autism. Instead they do cognitive testing, asking questions etc. I believe that they will look at the overall results and determine whether, in their opinion, a client has autism.

You will have cases where there really is no doubt, and all doctors looking at the results would agree that a client does or does not have autism. But I think there will be some people who have several traits associated with autism, but not enough to consider them autistic - or just enough to consider them autistic. So the idea of a spectrum does make sense. But that does not mean we're all on the spectrum. If someone's life is quite negatively impacted by autism, I imagine it can seem quite dismissive of their condition to say 'well we're all on the spectrum'. I'm certainly not suggesting you said that, but giving as example why some people might not like the comment.

My son has quite a few autistic traits and so we were given the option for him to have some tests (I believe it's better to know whether or not you have autism or any other disability, in order to better deal with life's challenges). We were given a list of traits, and going through them it seemed pretty obvious to us that he had autism. He was booked to see the specialist and we were told we'd have an answer fairly quickly. Well we didn't get an answer, he was asked to go for further tests, which he did. Eventually they concluded that he does not have autism, but the fact that they couldn't tell us that straight away does highlight that it's not a simple test and some people may have some traits associated with autism, whilst not being considered autistic.

Back to your question: I don't think it's quite as wishy-washy as we're all on the spectrum and it's all subjective, because some people very clearly do have autism whilst others very clearly do not, and the opinions of experts will all match in those cases. I imagine it's a much smaller number of people who are borderline. And the doctors don't just have a chat and then possibly get it wrong, the cognitive tests are advanced enough to give good diagnoses, rather than just a gut feeling.

Yeh it’s interesting. As I said earlier in the thread, I have experienced parents using any sort of diagnoses as an excuse for poor parenting / poor behaviour which I think is totally wrong and an easy ‘get out’. I’m convinced one of mine has one of these illnesses but wouldn’t dream of blaming poor behaviour on it as it’s clearly mild compared to some people I’ve met. Incidentally, having grown up with a Down syndrome family member, I find these people fascinating. The way they can remember certain things and think is truely liberating. Just never understand the diagnosis or how it’s done etc.

 

[Swansman]

Fantastic thread, very interesting and informative. Very impressive to hear about you guys who are raising kids with these problems. Really. Superheroes the whole lot. Not much experience from autism in my surroundings but I suppose ADHD counts as a neurodiversity as well:

Personally I've been through years of investigations (when I was a kid) where they tried to figure out what the hell was wrong with me as I would get violent outbursts in school every day to the point where I at age 9 had to move to a "rehab school" on the countryside (with a taxi picking up all of the 10 or so students every morning).

Autism was ruled out quickly but they spent a year or so investigating if I had ADHD/ADD before reaching the conclusion that I had too strong patience/attention/focus for something like that to be likely. My ADHD mates at the rehab school would get furious for five minutes, run outside or trash things and then go back to normal. Me on the other hand would go out, rage and walk around angry for hours, often very far meaning people would have to drive and pick me up.

One day it just changed though. I was getting a furious outbreak on breakfast (which we always ate in that school) when one of my teachers said that Hitler was a good leader. I was in no mood to stroll through Björnstorp (the village where the school was) but rather went to the nearby football pitch, walking around it for an hour or two while fuming. The teacher came out, she walked next to me and calmly explained things - namely that she meant Hitler was a good leader in the sense that he was highly capable.

After hearing her calmly talk to me like a grown-up person I found a new way of resolving issues. For four or five years prior to that I had always been furious 3-4 times a day, usually meaning I would angrily run off and be gone for hours, or sometimes coming back to beat someone up or throw a rock into a window (always one in an empty room though as I really didn't want to seriously hurt anyone even when raging). After the intervention on the football pitch, I only raged once or twice every month for a year or two before I quit doing that as well.

My 18 months at this rehab school where everyone else had some diagnosis really taught me a lot about myself and being around kids like that. It taught me that sometimes one good conversation can resolve a lot of issues, even sometimes be life changing. Today some 20+ years later the school no longer exist and today I would have been put on some medication that wouldn't have resolved my issues (because they did not come from neurodiversity, but from a difficult upbringing). It saddens me that there a thousands of people like me who really just needs a few grown up conversations will today be automatically be put on medication that won't solve the core issues. Some people need that stuff but personally I was just taught by words how to control my emotions, almost to the point of turning a wee bit cold and pragmatic.

But to this day, and I suppose this goes for most people who are mainly in drug heavy communities, I mostly spend time with people with some neurological issue or another (but usually of the lighter degree such as ADHD) as I often enjoy their company more than the ones from the normies out there. I see ADHD as a trait and not really any sort of disability. Yes, it does make it difficult for people to manage some aspects of their lives... but hey ho, Martin is a nurse and has a son, Max works in a school while living on a houseboat, Andreas may be a cokehead but lives in nice apartment with his girlfriend, Johannes is a guitar teacher in Gothenburg, Caroline is singing in a world famous band (that I haven't heard), Thomas is my dealer, others are also doing fine... ADHD might delay the growing up part a bit but they get there eventually.

I see it as a trait because the people with ADHD and similar are often more creative, spontaneus and energic. A safe way to tell if someone has ADHD is if they can smoke weed every day and still do funny things and even manage to keep a job. Some superhuman shit. Middle of the night after a bunch of drinks and joints, I'm close to dead. Max says "we should bike to Lomma and take a bath". I can't believe my ears but the energy reaches me and I go along and have a great night.

ADHD is considered a flaw/disability/issue in our world because the majority of us have another trait, which I hereby name MFN (Mundane f***ing Normie). If you are able to sit in front of a computer screen and do administrative shit for 8 hours a day for 40 or 50 years, you're apparently normal... or dead inside as some might call it. I realise that people with ADHD struggle with some things but they are better at other stuff that just aren't equally valued in modern society. Personally I think the core focus should be to create a society where everyone can thrive, rather than trying to reshape people into becoming things they aren't just to make them "fit in" with us MFNs.

 

[BadFish]

No let’s do it here as I guess ‘education’ is good for everyone, including my me. I said something on nsc on a thread once along the lines of ‘I’m sure we’re all on the spectrum somewhere’ and a poster (can’t remember who) said that was really offensive. They did seem to know a lot on the subject, so naturally I apologised for any offence caused and explained my comment was not meant at all to be nasty / confrontational etc.

I am not sure if this was me or not but yeah the autism community get very upset about the whole 'all on the spectrum somewhere' thing. They feel it diminishes their experience and trivialises what they go through. It is usually said as a way of empathizing and trying to be understanding.

While I get this I also feel like neurodiversity should include everyone. If there are neurotypicals and neurodiverse people then surely that diversity should include everyone (including neurotypicals). My instinct here is that the notion has more of a feeling of togetherness which I think is important for creating a world more accessible for autistic people.

So here’s my main questions on autism (and I think one of my kids probably had it etc but have been told it’s so hard to get diagnosed).

The ‘spectrum’ is just an opinion of several doctors right? So we’re all going on a matter of opinion from these spectrum makers? There’s also no medical black and white way to diagnose autism - is that correct? I struggle with illnesses that are diagnosed on opinion and spectrums etc - as surely it’s all subjective? I’m not saying people don’t have it but the level they’re considered is purely down to a doctor or two placing them somewhere on this spectrum? What if they’re wrong?

I mean that in the absolute nicest possible way - I’m intrigued and not poo pooing anything, it’s just always interested me…

I think you have highlighted one of the challenges with diagnosing autism. There is no test that gives a positive or negative so it makes it kind of tricky to diagnose. However, it is a fair bit more complex, scientific and involved than simply a matter of opinion. I'll try my best to explain it without boring the pants off you

Internationally there is a document/book called the Diagnostic and Statistical Manual of Mental Disorders, we are up to edition 5 (autism is being constantly updated as we understand more - this is why we don't talk about Asperger's anymore). Currently, there are two broad categories that someone has to meet to be diagnosed as autistic. 1. Deficit in social communication and social interaction and 2. Restricted, repetitive patterns of behaviour, interests, or activities. there are subcategories for each of this of which the person has to satisfy all three for number 1 and 2 of the three for number 2. More information about this here: https://autismandhealth.org/?a=pv&p=detail&t=pv_asd&s=asd_asd&theme=dk&size=small As you can see there are also some other aspects of when the symptoms should be present an that those symptoms should not be explainable by any other disability or condition.

Once this is satisfied a level (1,2 or 3) is assigned based on how much support and assistance the person needs to live their life. 1 is deemed as mild, 3 is more severe and in need of a lot of assistance. 2 is in the middle obviously. These levels can be adjusted as the person's life changes and they need more assistance. For example, my daughter started at level 1 which didn't qualify her for funding (we are f***ing lucky in Australia by the sounds of it). She was raised to a 2 by her paediatrician a couple of years ago as her skills in masking weren't cutting it anymore (girls with autism is interesting but that's another post).

I am not sure how it works in the UK but in order to satisfy the categories here in Australia here are many hoops to jump through. Firstly the first category must be apparent in different contexts or settings so there is a long questionnaire called a Vineland test that is completed by both the parents and the teacher at school. This then elicits a score that shows strength in the different areas of both categories. This is then accompanied by a speech therapist's report that shows communication delays or deficits and an occupational therapist's report that describes the repeated patterns of behaviour and sensory challenges in section 2. The last part (unless I have forgotten anything - which I may have) is an interview and observation by a child psychologist to observe behaviour patterns for both categories.* This involves them playing games and telling stories that are designed to show deficits in social interaction and highlight sensory needs and other autistic traits.

The system isn't perfect but it also is a long way from guesswork. I think what is worth remembering here is that autism is a new thing in real terms. As recently as the 70s/80s it was filed under schizophrenia so we are really at the beginning of understanding it.

Its also worth noting that autism diagnoses often come with a co-occurring diagnosis (ADHD, intellectual disability etc etc) which complicates things further of course.

I hope this helps answer your question. Here are some more resources that might help:





*My daughter put on the show of all shows in this part of her diagnosis. She went from grunting with her hair over the face like the girl out of the ring on the ay up to holding f***ing court and entertaining the psychologists, cracking jokes, eye contact, the lot, life and soul of the party - we had never seen anything like it . Hence she got a level 1 diagnosis. So yeah this system is certainly not perfect.

 

[Neville's Breakfast]

I am not sure if this was me or not but yeah the autism community get very upset about the whole 'all on the spectrum somewhere' thing. They feel it diminishes their experience and trivialises what they go through. It is usually said as a way of empathizing and trying to be understanding.

While I get this I also feel like neurodiversity should include everyone. If there are neurotypicals and neurodiverse people then surely that diversity should include everyone (including neurotypicals). My instinct here is that the notion has more of a feeling of togetherness which I think is important for creating a world more accessible for autistic people.


I think you have highlighted one of the challenges with diagnosing autism. There is no test that gives a positive or negative so it makes it kind of tricky to diagnose. However, it is a fair bit more complex, scientific and involved than simply a matter of opinion. I'll try my best to explain it without boring the pants off you

Internationally there is a document/book called the Diagnostic and Statistical Manual of Mental Disorders, we are up to edition 5 (autism is being constantly updated as we understand more - this is why we don't talk about Asperger's anymore). Currently, there are two broad categories that someone has to meet to be diagnosed as autistic. 1. Deficit in social communication and social interaction and 2. Restricted, repetitive patterns of behaviour, interests, or activities. there are subcategories for each of this of which the person has to satisfy all three for number 1 and 2 of the three for number 2. More information about this here: https://autismandhealth.org/?a=pv&p=detail&t=pv_asd&s=asd_asd&theme=dk&size=small As you can see there are also some other aspects of when the symptoms should be present an that those symptoms should not be explainable by any other disability or condition.

Once this is satisfied a level (1,2 or 3) is assigned based on how much support and assistance the person needs to live their life. 1 is deemed as mild, 3 is more severe and in need of a lot of assistance. 2 is in the middle obviously. These levels can be adjusted as the person's life changes and they need more assistance. For example, my daughter started at level 1 which didn't qualify her for funding (we are f***ing lucky in Australia by the sounds of it). She was raised to a 2 by her paediatrician a couple of years ago as her skills in masking weren't cutting it anymore (girls with autism is interesting but that's another post).

I am not sure how it works in the UK but in order to satisfy the categories here in Australia here are many hoops to jump through. Firstly the first category must be apparent in different contexts or settings so there is a long questionnaire called a Vineland test that is completed by both the parents and the teacher at school. This then elicits a score that shows strength in the different areas of both categories. This is then accompanied by a speech therapist's report that shows communication delays or deficits and an occupational therapist's report that describes the repeated patterns of behaviour and sensory challenges in section 2. The last part (unless I have forgotten anything - which I may have) is an interview and observation by a child psychologist to observe behaviour patterns for both categories.* This involves them playing games and telling stories that are designed to show deficits in social interaction and highlight sensory needs and other autistic traits.

The system isn't perfect but it also is a long way from guesswork. I think what is worth remembering here is that autism is a new thing in real terms. As recently as the 70s/80s it was filed under schizophrenia so we are really at the beginning of understanding it.

Its also worth noting that autism diagnoses often come with a co-occurring diagnosis (ADHD, intellectual disability etc etc) which complicates things further of course.

I hope this helps answer your question. Here are some more resources that might help:





*My daughter put on the show of all shows in this part of her diagnosis. She went from grunting with her hair over the face like the girl out of the ring on the ay up to holding f***ing court and entertaining the psychologists, cracking jokes, eye contact, the lot, life and soul of the party - we had never seen anything like it . Hence she got a level 1 diagnosis. So yeah this system is certainly not perfect.

There is also ADOS/ADIR testing conducted by a Speech Therapist and Psychologist. This is pretty rigorous analysis that can give a definitive diagnosis but it is expensive.

Diagnostic tools - a guide for all audiences

Information about various tools and techniques used to diagnose people as autistic.

www.autism.org.uk

It is a diagnostic tool conducted by experts to assess autism in much the same way assessments are carried out into other language, communication or behavior difficulties. If people are looking for a DIY Covid type test then they won’t find it in the realm of mental health.

 

[BadFish]

Yeh it’s interesting. As I said earlier in the thread, I have experienced parents using any sort of diagnoses as an excuse for poor parenting / poor behaviour which I think is totally wrong and an easy ‘get out’. I’m convinced one of mine has one of these illnesses but wouldn’t dream of blaming poor behaviour on it as it’s clearly mild compared to some people I’ve met. Incidentally, having grown up with a Down syndrome family member, I find these people fascinating. The way they can remember certain things and think is truely liberating. Just never understand the diagnosis or how it’s done etc.

I don't know the situations that you have been in with parents blaming a diagnosis for poor behaviour so am not arguing with you but I will say that poor behaviour is often a symptom of distress, anxiety and sensory overload caused by autism. Many behaviours are not chosen by kids and are involuntary responses to the stimuli around them, sometime it is purely the best they have to get them though a difficult situation.

As I said on the other thread a diagnosis doesn't excuse poor behaviour but it often does explain it. On the whole autistic kids can learn to control themselves and improve their behaviour patterns, but it can be really difficult and requires a lot of patients time and understanding. The fact is that traditional discipline-based behaviour management practices just do not work for a lot of autistic kids.

I know that I have been judged many times as a poor parent in public situations with my kids. I have had the same at their schools from teachers. Often when people have called me out for my kid's behaviour they require some discipline there and then. With an autistic child this is most often totally inappropriate and only serves to enflame the situation and escalate the situation. No learning can be done in this way and no benefit is gained. Usually the situation needs to be deescalated and the child calmed before any worthwhile discussion and if necessary consequences can be had.

This may come across as a bit new agey but it has stood me in good stead over 15 years of teaching and working with my kids. As soon as you see behaviour as communication you find that you can start to solve the problems causing it and it starts to improve.

 

[Neville's Breakfast]

I don't know the situations that you have been in with parents blaming a diagnosis for poor behaviour so am not arguing with you but I will say that poor behaviour is often a symptom of distress, anxiety and sensory overload caused by autism. Many behaviours are not chosen by kids and are involuntary responses to the stimuli around them, sometime it is purely the best they have to get them though a difficult situation.

As I said on the other thread a diagnosis doesn't excuse poor behaviour but it often does explain it. On the whole autistic kids can learn to control themselves and improve their behaviour patterns, but it can be really difficult and requires a lot of patients time and understanding. The fact is that traditional discipline-based behaviour management practices just do not work for a lot of autistic kids.

I know that I have been judged many times as a poor parent in public situations with my kids. I have had the same at their schools from teachers. Often when people have called me out for my kid's behaviour they require some discipline there and then. With an autistic child this is most often totally inappropriate and only serves to enflame the situation and escalate the situation. No learning can be done in this way and no benefit is gained. Usually the situation needs to be deescalated and the child calmed before any worthwhile discussion and if necessary consequences can be had.

This may come across as a bit new agey but it has stood me in good stead over 15 years of teaching and working with my kids. As soon as you see behaviour as communication you find that you can start to solve the problems causing it and it starts to improve.

I think what you are describing is good parenting. I agree it is essential with autistic children but quite a few parents of neurotypical children would benefit from adopting a similar approach. Our children are not autistic but our parenting was always informed by my wife’s knowledge in that area. There was one occasion when our youngest was around 3 or 4 years old and she had a meltdown whilst my wife was queuing in M and S in Brighton. She was safe but having a tantrum on the floor. My wife ignored her and eventually she stopped and never ever did it again. No reprimand necessary despite the disapproving looks from others in the queue. Of course that doesn’t always work but it did on this occasion.

 

[rebel51]

I can relate to this. Its so tough. How old were you when you were diagnosed? Did that help you? I'm 34 and feel that if there was the awareness like there is now that I would have been diagnosed with ASD. Same as my dad. I see many of my own traits in my son, albeit his are far more complex then mine. I was always called socially awkward, have very funny routines, I hate things being sprung on me, even small things.

Diagnosed 4 years ago in my late 40s, and yeh glad I got it as it made me understand how I was feeling when I was younger, would definitely been better to have been diagnosed as a child. It helps my wife and close family understand me a bit more

 

[Neville's Breakfast]

Fantastic thread, very interesting and informative. Very impressive to hear about you guys who are raising kids with these problems. Really. Superheroes the whole lot. Not much experience from autism in my surroundings but I suppose ADHD counts as a neurodiversity as well:

Personally I've been through years of investigations (when I was a kid) where they tried to figure out what the hell was wrong with me as I would get violent outbursts in school every day to the point where I at age 9 had to move to a "rehab school" on the countryside (with a taxi picking up all of the 10 or so students every morning).

Autism was ruled out quickly but they spent a year or so investigating if I had ADHD/ADD before reaching the conclusion that I had too strong patience/attention/focus for something like that to be likely. My ADHD mates at the rehab school would get furious for five minutes, run outside or trash things and then go back to normal. Me on the other hand would go out, rage and walk around angry for hours, often very far meaning people would have to drive and pick me up.

One day it just changed though. I was getting a furious outbreak on breakfast (which we always ate in that school) when one of my teachers said that Hitler was a good leader. I was in no mood to stroll through Björnstorp (the village where the school was) but rather went to the nearby football pitch, walking around it for an hour or two while fuming. The teacher came out, she walked next to me and calmly explained things - namely that she meant Hitler was a good leader in the sense that he was highly capable.

After hearing her calmly talk to me like a grown-up person I found a new way of resolving issues. For four or five years prior to that I had always been furious 3-4 times a day, usually meaning I would angrily run off and be gone for hours, or sometimes coming back to beat someone up or throw a rock into a window (always one in an empty room though as I really didn't want to seriously hurt anyone even when raging). After the intervention on the football pitch, I only raged once or twice every month for a year or two before I quit doing that as well.

My 18 months at this rehab school where everyone else had some diagnosis really taught me a lot about myself and being around kids like that. It taught me that sometimes one good conversation can resolve a lot of issues, even sometimes be life changing. Today some 20+ years later the school no longer exist and today I would have been put on some medication that wouldn't have resolved my issues (because they did not come from neurodiversity, but from a difficult upbringing). It saddens me that there a thousands of people like me who really just needs a few grown up conversations will today be automatically be put on medication that won't solve the core issues. Some people need that stuff but personally I was just taught by words how to control my emotions, almost to the point of turning a wee bit cold and pragmatic.

But to this day, and I suppose this goes for most people who are mainly in drug heavy communities, I mostly spend time with people with some neurological issue or another (but usually of the lighter degree such as ADHD) as I often enjoy their company more than the ones from the normies out there. I see ADHD as a trait and not really any sort of disability. Yes, it does make it difficult for people to manage some aspects of their lives... but hey ho, Martin is a nurse and has a son, Max works in a school while living on a houseboat, Andreas may be a cokehead but lives in nice apartment with his girlfriend, Johannes is a guitar teacher in Gothenburg, Caroline is singing in a world famous band (that I haven't heard), Thomas is my dealer, others are also doing fine... ADHD might delay the growing up part a bit but they get there eventually.

I see it as a trait because the people with ADHD and similar are often more creative, spontaneus and energic. A safe way to tell if someone has ADHD is if they can smoke weed every day and still do funny things and even manage to keep a job. Some superhuman shit. Middle of the night after a bunch of drinks and joints, I'm close to dead. Max says "we should bike to Lomma and take a bath". I can't believe my ears but the energy reaches me and I go along and have a great night.

ADHD is considered a flaw/disability/issue in our world because the majority of us have another trait, which I hereby name MFN (Mundane f***ing Normie). If you are able to sit in front of a computer screen and do administrative shit for 8 hours a day for 40 or 50 years, you're apparently normal... or dead inside as some might call it. I realise that people with ADHD struggle with some things but they are better at other stuff that just aren't equally valued in modern society. Personally I think the core focus should be to create a society where everyone can thrive, rather than trying to reshape people into becoming things they aren't just to make them "fit in" with us MFNs.

Thank you for sharing your experiences Swanny. You have raised a huge issue with medication. I think the amount of it being prescribed is scandalous, particularly where it is used to subdue as a cheaper option than therapy. ADHD drugs have a role but there needs to be debate, particularly about the use in mental health facilities.

 

[Neville's Breakfast]

I haven't read the thread so apologies if this has already been mentioned, but there's a programme on BBC2 tomorrow at 9pm called "Inside Our Autistic Minds".

- Chris Packham helps an autistic football fan explain why changes can be disastrous, and a rapper who can be hypersensitive to noise reveals how overwhelming life can be.

We are watching tonight and apparently there was also an episode last week.

 

[Uh_huh_him]

I don't know the situations that you have been in with parents blaming a diagnosis for poor behaviour so am not arguing with you but I will say that poor behaviour is often a symptom of distress, anxiety and sensory overload caused by autism. Many behaviours are not chosen by kids and are involuntary responses to the stimuli around them, sometime it is purely the best they have to get them though a difficult situation.

As I said on the other thread a diagnosis doesn't excuse poor behaviour but it often does explain it. On the whole autistic kids can learn to control themselves and improve their behaviour patterns, but it can be really difficult and requires a lot of patients time and understanding. The fact is that traditional discipline-based behaviour management practices just do not work for a lot of autistic kids.

I know that I have been judged many times as a poor parent in public situations with my kids. I have had the same at their schools from teachers. Often when people have called me out for my kid's behaviour they require some discipline there and then. With an autistic child this is most often totally inappropriate and only serves to enflame the situation and escalate the situation. No learning can be done in this way and no benefit is gained. Usually the situation needs to be deescalated and the child calmed before any worthwhile discussion and if necessary consequences can be had.

This may come across as a bit new agey but it has stood me in good stead over 15 years of teaching and working with my kids. As soon as you see behaviour as communication you find that you can start to solve the problems causing it and it starts to improve.

Yeah this.
I remember many years ago, I had to take two taxi journeys, to ferry all 5 of us from a hotel to a family meal.
I went in the first journey with Charlie and my Daughter and dropped them off with my mum.
Charlie was agitated about the restaurant we were going to and was behaving unpleasantly.
On the trip back to pick up my missus and our other daughter, the cabbie decided to explain to me everything I was doing wrong and that my son was the most spoilt kid he'd ever seen.

I lost my shit with him. I'm not sure what I said, as it was a bit of a tirade, but my last sentence was, walk a mile in my shoes, before you judge me.
To his credit, once he understood, he apologised profusely and admitted to being a jerk.
My Missus was a bit bemused why I was so frosty during the return trip, whilst the cabbie was being such a gentleman.

 

[Uh_huh_him]

I think what you are describing is good parenting. I agree it is essential with autistic children but quite a few parents of neurotypical children would benefit from adopting a similar approach. Our children are not autistic but our parenting was always informed by my wife’s knowledge in that area. There was one occasion when our youngest was around 3 or 4 years old and she had a meltdown whilst my wife was queuing in M and S in Brighton. She was safe but having a tantrum on the floor. My wife ignored her and eventually she stopped and never ever did it again. No reprimand necessary despite the disapproving looks from others in the queue. Of course that doesn’t always work but it did on this occasion.

I agree, but it's harder to ignore as the child gets older and more capable of damaging themselves and others.
Most parents understand a toddler tantrum and understand why ignoring it is a good method.

Fewer people understand a 13 year old ranting and raving at his parent, who is trying to ignore him, in a sainsbury's queue.
De-escalation is not easy when the comments around you are less than sympathetic.

 

[Uh_huh_him]

Unfortunately funding, as with everything else is a major issue. Whilst CAMHS struggles (along with other bodies) to cope with the ever worsening state of the NHS, the COVID pandemic has greatly exasperated the mental health crises in society and this includes children and teenagers in massive numbers. For many and especially amongst those entering puberty to GCSEs it is only really picked up as mental health deteriorates and anxiety increases. Years can pass before overworked public services and schools come to a diagnosis and even longer before any concrete help is offered. It is heartbreaking to watch helplessly and educating the wider population of the needs of so many around them seems a long way off.
Thanks for raising the subject and at the very least educating the Albion faithful as a start.

Without wishing to get all party political about this, we were very fortunate to have a well funded CAMHS service in our location at the time of diagnosis.
The support and services available to us on the NHS were superb.

The state of the same CAMHS service 20 years later is an absolute travesty.
I have every sympathy for parents going through this now.