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carlos55
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01 Oct 2024, 2:18 am

This is the 2nd severe autism article by the national broadcaster recently so maybe its a trend building?

https://www.bbc.co.uk/programmes/m0023db6

The associated article:-

https://www.bbc.co.uk/news/articles/cx2k749pzdgo



Quote:
'My wife and daughter cannot be alone with our complex needs son'

“I’m supposed to be her protector but I’m also supposed to be his protector and when you’re caught in the middle, what do you do?"

For the dads of children with severe learning disabilities, life can often bring a lot of challenges.

BBC Spotlight has spoken to four dads of boys who all have a diagnosis of autism and a severe learning disability that can lead to upsetting and harmful behaviour to themselves and others.

They become bodyguards and protectors and in many cases face physical harm, and have called for more support and respite.

On Tuesday, a group of mums spoke out in a BBC Spotlight documentary about incredibly hard choices they have had to make when looking after sons with complex needs, often without any respite or support.

I Am Not Okay -

'They can't be on their own with him'

Séamus Flannigan is dad to 16-year-old Eoin.

“I could be out of the room and the next second I’m being called by my daughter or my wife because he’s kicked off again. You have to put yourself physically between him and them and get them out of the road," Mr Flannigan said.

“You think okay, at least I’m able to deal with this and it’s not my wife and it’s not my daughter that are getting hurt. But then you realise that they can't be on their own with him," he said.

“ They can't spend that quality time without someone being there as a bodyguard.”

One of the most touching scenes in the film is when the family are in a hydrotherapy pool with Eoin. The bond between father and son is clear.

“It’s so simple, just splashing about in the water, playing with the waves pushing against you, he just loves that and he loves you to be there with him.”

Those moments are what all four dads call the "small wins".

'He's getting bigger and stronger'
Frank Tipping’s 11-year-old son Theo can have great difficulty controlling his emotions, but there is another side to him.

“He is a gorgeous child. He is affectionate, he is warm. You can see he wants to belong everywhere," Mr Tipping said.

“You can see him struggling to figure things out, but it’s very difficult for him and it’s very difficult for us to understand what exactly it is that he needs.”

And it is those moments of struggle that can often escalate into distressed behaviour.

In the film, Mr Tipping often intervenes between Theo and his wife Julie, shielding her from the more harmful outcomes of Theo’s distress.

“Ultimately, you’re approaching a situation in which you could get hurt, you know, and that’s really hard to contemplate," Mr Tipping said.

“He’s getting bigger and stronger and I’m not sure we’re ready for that.”

Mr Tipping admits he feels very guilty discussing Theo’s difficult episodes.

“It’s not Theo’s fault. Theo is a great kid, he’s a godsend, he’s a blessing," he said.

“ But I feel every time we articulate the problem it feels like betraying him.”

'My hands are still black and blue'

John Bell’s 15-year-old son Rudy is strong and his outbursts have resulted in multiple injuries.

In the film Rudy bites and scratches his father's hands during an outburst as Mr Bell is trying to de-escalate things.

“My hands are still black and blue and that was five or six weeks ago. And it’s hard because you don’t want him to hurt you or other people. Or himself. When Rudy gets you he gets you good, you can really feel it," he said.

Mr Bell said he and his wife Carly felt taking part in the film was a last resort - they wanted to show the reality and how they are struggling.

“When people see this and professionals might see it, they might see what me and my family are going through," he said.

“We’re physically drained, mentally drained. I’m still trying to hold down a job but I’ve had to drop it down to two days.”

Social services have assessed all four boys should be getting regular overnight respite. That is where the children would go to a health trust facility and the families would get a break.

There are no spaces currently available in the Belfast and South Eastern Trust.

Mr Bell said respite was invaluable.

“It made a hell of a difference to everybody in the family. I mean everybody. Because you were getting a bed for the night, you were getting a sleep for the night."

Mr Bell has had medical issues this year including very high blood pressure: “It’s got to the stage where I’m running on empty.”

'There's not really anything I can do'
Danny Miller’s dad Steven has changed jobs to be able to spend more time at home.

“I used to be a mechanic and now I work for the Roads Service and lost almost half my wages," Mr Miller said.

“That’s something I’ve had to do to support my family.”

His wife Claire suffers quite significant injuries on a regular basis.

“I’m watching him attacking her and there’s not really anything I can do," he said.

“I’m supposed to be her protector but I’m also supposed to be his protector and you’re caught in the middle what do you do?

“A lot of the time we’re lying on the floor trying to protect him from banging his head on the floor."

Mr Miller says he is devoted to his son and believes regular respite would help the whole family.

The South Eastern Health Trust who look after Danny and Rudy’s care said it would not comment on their cases.

It said it understood the pressure on families but it could not offer respite because beds were being used by children who need long-term placement.

It added that it hoped future funding would be made available.

The Belfast Health Trust who are responsible for Eoin and Theo’s care said it was very sorry that it was unable to offer overnight breaks, but that the Trust was exploring ways of reintroducing them.

Health Minister Mike Nesbitt said the current situation was unsustainable, adding that he was determined to see "urgent improvements".


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Velorum
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01 Oct 2024, 4:13 am

Functional labels and the ongoing conflation between Autistic identity, intellectual disability and various mental health issues are toxic and ultimately dont help anyone.

The problem with many of these programmes is that they seem to cater to an unpleasant appetite for 'disability porn' among the general population.

If people want to educate themselves they should be looking at things like the excellent YouTube videos produced by Dr Luke Beardon.

In my opinion.


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carlos55
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01 Oct 2024, 6:53 am

Velorum wrote:
Functional labels and the ongoing conflation between Autistic identity, intellectual disability and various mental health issues are toxic and ultimately dont help anyone.

The problem with many of these programmes is that they seem to cater to an unpleasant appetite for 'disability porn' among the general population.

If people want to educate themselves they should be looking at things like the excellent YouTube videos produced by Dr Luke Beardon.

In my opinion.


Having watched it the documentary was about lack of services available to the families of children on the severe end of autism spectrum which usually as in this case involved ID and also unfortunately as in this case violence and aggressive behaviour.

So it was a serious subject focusing on lack of help available to these children & families

I watched a YouTube video of Dr Luke Beardon that you mentioned (attached) the video showed his lack of scientific knowledge on autism.

It was mildly amusing when his lack of understanding of how society and gov help works was particularly shown in the proposal in his video at 44:22.

https://www.youtube.com/watch?v=vueAASgTz8s

So autism is not longer classed as a medical disorder or a disorder, problem what so ever, where is the gov help going to come from or any help for that matter? If something is not a problem why do you need help at all?

Does a government give out free money or help to those without a medical disorder :lol:

Many autistic people would simply die out.

Disability welfare, Special needs housing, special schools, Carers, social worker support seems rather absent in this logic.

None of this is surprising since it appears his "Dr" status is from "Doctorate" in a humanities field, not to be confused with a STEM subject or "Medical Doctor".

Don't get me wrong nothing personal against him, I'm sure he worked hard for it but its no where near the calibre required to study the medical aspects of neurology from a scientific perspective.


https://en.wikipedia.org/wiki/Doctorate


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Velorum
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01 Oct 2024, 8:24 am

Dr Beardon was my personal tutor when I completed my Masters degree programme in Autism.

I think that we will have to agree to disagree on his level of academic standing.

As regards the medical / clinical research that you are referring to then again we will need to agree to disagree.

My opinion:

My Autistic identity is just that an identity. It is the way my brain is hard wired. The same way that a significant minority of the general populations is. It is part of of the natural diversity of human beings the same way a number of other minority differences are for example different sexual orientations. Any attempt to prevent it is eugenic in nature and any attempt to change how it manifests is deeply traumatising. Both are unethical. A number of non Autistic people make a comfortable living from the 'business of Autism' and have a vested interest in pathologising our identity.


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01 Oct 2024, 8:50 am

Carlos, this is an excellent link. Thank you.

I'm going to agree with both of you, as far as the positives go. Both the BBC and Dr. Beardon are reputable, accredited sources. The Beeb show highlights the issue from two angles (a) the nature and impact of severe autism, and (b) the politics of public healthcare. In terms of (a) a viewer, encouraged to know more, may be led to Dr. Beardon as the next step.

If the show had been on certain cable channels I'm not going to mention, it'd have been called 'Britain's 100 Scariest Autistics', filmed in the style of 'Jackass' and at the end would have directed 'worried parients' toward Autism Speaks.



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01 Oct 2024, 9:01 am

Velorum wrote:

My opinion:

My Autistic identity is just that an identity. It is the way my brain is hard wired. The same way that a significant minority of the general populations is. It is part of of the natural diversity of human beings the same way a number of other minority differences are for example different sexual orientations. Any attempt to prevent it is eugenic in nature and any attempt to change how it manifests is deeply traumatising. Both are unethical. A number of non Autistic people make a comfortable living from the 'business of Autism' and have a vested interest in pathologising our identity.


I second that. At the same time I realize that there are people with a medical disorder that is refered to as "severe autism" that are clearly disabled and need and deserve support and help.


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carlos55
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01 Oct 2024, 9:31 am

Velorum wrote:
Dr Beardon was my personal tutor when I completed my Masters degree programme in Autism.

I think that we will have to agree to disagree on his level of academic standing.

As regards the medical / clinical research that you are referring to then again we will need to agree to disagree.

My opinion:

My Autistic identity is just that an identity. It is the way my brain is hard wired. The same way that a significant minority of the general populations is. It is part of of the natural diversity of human beings the same way a number of other minority differences are for example different sexual orientations. Any attempt to prevent it is eugenic in nature and any attempt to change how it manifests is deeply traumatising. Both are unethical. A number of non Autistic people make a comfortable living from the 'business of Autism' and have a vested interest in pathologising our identity.


Maybe you can clarify Dr Beardon`s STEM credentials regarding the brain?

You are entitled to your opinion on how you view your autism others think very differently about their own neurology and what is officially classed as a disorder by science, diagnosis criteria and the logic of disability in general.

Natural doesn't always mean good either, nothing more natural than cancer which many animals get, or harmful gene mutations causing blindness.

Autism is anchored to disability at the moment because of the way the psychology field has setout the enormous diagnosis spectrum from extremely disabled to mildly impaired . That`s not the fault of us, just the lazy way that everything is thrown into one diagnosis from extremely impaired to those who can survive with minimal help, it suits someone like myself however in that it ensures more attention for and money for medical research.

The bottom line is autism as a medical diagnosis is linked to the help people get from society and their government, no problem no help its just the crude way things work I'm afraid.

I believe pretending autism is not a disorder / disability is just a form of ableism. Those who can successfully mask/cope independently or some parents of autistic kids are ashamed of the "disorder" aspect, pride gets in the way and they invent a form of euphemism associated with parts of the ND movement that they wish to apply to the autism label.

This luxury is not available to everyone, just the few.

Its the same process that once occurred in mental health, there used to be a stigma associated with having a mental health problem like depression or schizophrenia , thinking the person is mad or may be dangerous for example. A lot of gov de-stigmatising info and education has since come out and now many people talk openly about their mental health struggles.

The disorder aspect is still there just the different way people deal with it

Watching an old tv show from the 90`s brought that home I could see the obvious stigma associated with depression that existed then but less so now.

The answer is not denying a disorder exists but rather changing peoples attitudes and stigma associated with this sort of thing, so people can talk openly about their diagnosis at work or to families.


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01 Oct 2024, 10:26 am

I reject the concept of Autism as a disorder, dysfunction or something that is undesirable.

I embrace and celebrate Autism as an identity and naturally occurring neurotype.

Its a sad fact that the stress and pressure of living in a world that is not geared to Autistic identity or needs causes such trauma in some Autistic people that they are then impacted by mental health and physical issues.

A number of us believe that the continuing medicalisation of what is a perfectly normal variation in the human neurotype perpetuates this state of affairs.

It would appear that the conflation between Autistic identity and the mental health issues caused by environmental factors including the attitudes of others remains a real barrier to people understanding and accepting Autistic identity. A paradigm shift in thinking is badly needed here so that we can progress in a more humanistic, inclusive and empowering manner.

I totally disagree with your views but absolutely respect your right to hold them.


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carlos55
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01 Oct 2024, 11:30 am

Velorum wrote:
I reject the concept of Autism as a disorder, dysfunction or something that is undesirable.

I embrace and celebrate Autism as an identity and naturally occurring neurotype.

Its a sad fact that the stress and pressure of living in a world that is not geared to Autistic identity or needs causes such trauma in some Autistic people that they are then impacted by mental health and physical issues.

A number of us believe that the continuing medicalisation of what is a perfectly normal variation in the human neurotype perpetuates this state of affairs.

It would appear that the conflation between Autistic identity and the mental health issues caused by environmental factors including the attitudes of others remains a real barrier to people understanding and accepting Autistic identity. A paradigm shift in thinking is badly needed here so that we can progress in a more humanistic, inclusive and empowering manner.

I totally disagree with your views but absolutely respect your right to hold them.


Something to consider to those having difficulty with the disorder/ difference conundrum.

Leaving aside the scientific evidence of harmful gene mutations associated with autism where genetic causes have been found.

The inability to live independently deal with everyday actions and travel the earth many autistic people have, unlike most NT

Leaving aside nearly half of autistic people having IQ deficits just under 50% adults ID.

Lets choose something simple as an obvious example:-

Human beings evolved to have a voice box to be able to converse in language to each other.

That is why it’s there, legs for mobility voice box for talking

All autistic people have this voice box too.

Usually born from parents with use of their voice box.

But many of these kids grow to be non or partially verbal. Even when intelligence is normal, many say they can think the words but they can’t come out.

So we have an obvious disorder present preventing words from being transferred from thought to audible language.

Just some logic to consider


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02 Oct 2024, 3:52 am

I considered those and other points in great depth over decades working as a qualified clinician.

This included leading Autism assessment processed and providing DSM/ICD diagnosis.

Every facet of the human condition is genetic. Autism is present due to generic/generalised and not specific genetic differences - similar to many other states of being.

Until the early 70's homosexuality was considered a disorder and included in the DSM. You could be diagnosed with it. The same arguments were used by the conservative medical establishment and others to keep it as a 'disorder' that are being used now to keep Autism as a 'disorder'.

We continue to let neurotypicals define and control us.

Thats me view and the view of many Autistic people I know.

One facet of our identity is that we often develop strong and immovable opinions on things - which may be linked to Monotropism. So the extent in to which we are polarised on this is quite understandable. However, over 40 or so years of working in clinical services some of it as a qualified diagnostician my views did change - I started out thinking very much as you do and am now in a very different place.

As I said, I think we just need to agree to disagree.

Kind regards
Ian


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02 Oct 2024, 6:22 am

thanks for this post Carlos.


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02 Oct 2024, 1:36 pm

So far a good discussion. A few years back discussions around this topic on WP would have been based on assumptions of harmful intent.

Of course this prospective needs to be publicized. What should not happen and which happens-too often is making this an either or situation. Helping one type of autistic should not mean other types are autistics are less deserving. Putting it another way advocates for more funding for other types of autism should not be seen as advocating for defunding your type of autism. We still have a ways to go. Since this is a British article I would advise advocates on the other side of the pond to not let your politics autism or otherwise further slide into the zero sum game thinking that has taken over America.


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03 Oct 2024, 8:30 am

Velorum wrote:
I considered those and other points in great depth over decades working as a qualified clinician.

This included leading Autism assessment processed and providing DSM/ICD diagnosis.

Every facet of the human condition is genetic. Autism is present due to generic/generalised and not specific genetic differences - similar to many other states of being.

Until the early 70's homosexuality was considered a disorder and included in the DSM. You could be diagnosed with it. The same arguments were used by the conservative medical establishment and others to keep it as a 'disorder' that are being used now to keep Autism as a 'disorder'.

We continue to let neurotypicals define and control us.

Thats me view and the view of many Autistic people I know.

One facet of our identity is that we often develop strong and immovable opinions on things - which may be linked to Monotropism. So the extent in to which we are polarised on this is quite understandable. However, over 40 or so years of working in clinical services some of it as a qualified diagnostician my views did change - I started out thinking very much as you do and am now in a very different place.

As I said, I think we just need to agree to disagree.

Kind regards
Ian


Claiming some autisms are not disabling requires a certain degree of intentional ignorance sometimes called "Nelsonian knowledge".

Fortunately such beliefs remain a fringe view not even shared by most ND advocates including ASAN.

They may disagree regarding cure / treatment for autism but they can at least fortunately identify with their 5 senses and logic, - obvious disability where they see one.

Although i understand the need of some to manage the belief in certain things just to cope with difficult situations.

Personally never works for me, i always try to get to the truth of all things even unpleasant, sometimes to my detriment, if i wilfully ignore things my mind brings them up again & again as an intrusive thought OCD until i can ignore no more and end up confronting the truth.

Sometimes i envy those that can live in such blissful ignorance, i mean i get it, your alive so enjoy life as it is, but on balance i think i would rather know.

The logic of mixing up LGBT progression & autism is always a flawed one

Being gay was never a disability, who you wish to have sex with does not effect your ability to function independently in the world, it certainly meant more stress causing depression / anxiety but general functioning remained unaffected.

It was added as a medical disorder because of the law at the time and it was law because of the Christian church and the Christian church made it so because of passages in the bible alluding to such things.

In the 20th century the church lost much of its power and countries became more secular, resulting in society & laws associated with relationships becoming more liberal, on things such as living together, sex before marriage, single parents, divorce and finally LGBT.

There is some irony in claiming some misguided morality associated with insisting on people remaining how you was born and then quoting LGBT, since such false logic could easily be applied against the trans community by a patriarchy , i.e theoretically those in authority claiming - "if your born with a penis or Y chromo, your declared a man & its therefore forbidden to have gender surgery or to be viewed as any other way."

Thankfully no one in authority in the west including myself views gender in that way or imposes such ideas on the medical sector.


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03 Oct 2024, 11:36 am

Velorum wrote:
I reject the concept of Autism as a disorder, dysfunction or something that is undesirable.

I embrace and celebrate Autism as an identity and naturally occurring neurotype.

Its a sad fact that the stress and pressure of living in a world that is not geared to Autistic identity or needs causes such trauma in some Autistic people that they are then impacted by mental health and physical issues.

A number of us believe that the continuing medicalisation of what is a perfectly normal variation in the human neurotype perpetuates this state of affairs.

It would appear that the conflation between Autistic identity and the mental health issues caused by environmental factors including the attitudes of others remains a real barrier to people understanding and accepting Autistic identity. A paradigm shift in thinking is badly needed here so that we can progress in a more humanistic, inclusive and empowering manner.

I totally disagree with your views but absolutely respect your right to hold them.


Whether or not autism is an actual disability or simply at the very edge of “normal” is a difficult question to answer due to the ridiculous variability of not only the individuals with autism but also of the environments that they live in.

Consider, for instance that level 1 autism, as it’s currently defined, literally did not “exist” as a disability until well in to the industrial era (WW2 to be precise). There’s a good argument to be made that the problem isn’t necessarily the people, but rather the environment - which has now become literally unescapable.

If you put a person with level 1 autism in to the right environment, their “disability” no longer becomes a problem.

So I’m personally inclined to agree that level 1 autism is simply at the edge of “normal”, rather than being a disability. The disability is mostly environmental.

That being said, someone with level 2 or level 3 autism would absolutely have been considered seriously disabled, even before the Industrial Revolution. That is the group that the BBC documentary is talking about.

The conflation you refer to is a result of modern society choosing to put both of these groups in the same category, which IMO is problematic.



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03 Oct 2024, 11:41 am

I certainly think that its a good thing that there are a range of views on this.


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03 Oct 2024, 3:42 pm

bsickler wrote:
Velorum wrote:
I reject the concept of Autism as a disorder, dysfunction or something that is undesirable.

I embrace and celebrate Autism as an identity and naturally occurring neurotype.

Its a sad fact that the stress and pressure of living in a world that is not geared to Autistic identity or needs causes such trauma in some Autistic people that they are then impacted by mental health and physical issues.

A number of us believe that the continuing medicalisation of what is a perfectly normal variation in the human neurotype perpetuates this state of affairs.

It would appear that the conflation between Autistic identity and the mental health issues caused by environmental factors including the attitudes of others remains a real barrier to people understanding and accepting Autistic identity. A paradigm shift in thinking is badly needed here so that we can progress in a more humanistic, inclusive and empowering manner.

I totally disagree with your views but absolutely respect your right to hold them.


Whether or not autism is an actual disability or simply at the very edge of “normal” is a difficult question to answer due to the ridiculous variability of not only the individuals with autism but also of the environments that they live in.

Consider, for instance that level 1 autism, as it’s currently defined, literally did not “exist” as a disability until well in to the industrial era (WW2 to be precise). There’s a good argument to be made that the problem isn’t necessarily the people, but rather the environment - which has now become literally unescapable.

If you put a person with level 1 autism in to the right environment, their “disability” no longer becomes a problem.

So I’m personally inclined to agree that level 1 autism is simply at the edge of “normal”, rather than being a disability. The disability is mostly environmental.

That being said, someone with level 2 or level 3 autism would absolutely have been considered seriously disabled, even before the Industrial Revolution. That is the group that the BBC documentary is talking about.

The conflation you refer to is a result of modern society choosing to put both of these groups in the same category, which IMO is problematic.


I agree with this, level 1 autism or old Asperger's is rarely a disability in the hard sense more a impairment or deficit as the DSM calls it in the various categories of diagnosis.

It is crazy how they lumped everything together and caused this tug of war with both sides of the spectrum trying to claim autism is one or the other. I did touch upon this earlier in the thread.

On the one hand i like the idea of a bigger spectrum causing more funding, accommodations & awareness. The downside is we get this.

Psychiatry has a lot to answer for


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