Jazz Hands to the rescue.

Heartfeltdawn

Chalky said:

@Iamnobody - I got my two diagnosed privately at 2 years old.  It cost thousands but it was worth it, if only for these words of the consultant who listened to us patiently then stood close to me, looked me straight in the eye and said slowly "You cannot fix this".

Her words have stayed with me.  You cannot fix autism. The kids cannot develop out of it.  You certainly cannot overcome it.  Back then someone told me its like a squeezed balloon - suppress it in one place and it pops up elsewhere.  That's true. Coping strategies and mechanisms are good, but they are like crutches - they assist but do not cure, they do nothing to heal, and when they break, which they do at some point, you are back on your arse at square one.

Autism documentaries are really annoying.  They typically show autistic folks at the lighter end of the spectrum or those who with high-functioning Aspergers. Rather like pointing @Heartfeltdawn's example kid in a wheelchair at the Paralympics and saying "Hey you could win a gold medal!", this puts a glossy sheen of TV optimism on a situation that is unrepresentative of the vast majority of sufferers.

The TV documentaries don't visit the homes of those young adults who have been through all the therapies, coping mechanisms, teaching, nurturing, loving care and support and are still never going to be functioning adults.  Like those cancer victims who are diagnosed early and still die within the year, the media doesn't want to show them because ordinary people don't want to think about them. Why? Because its its too hard.  If you get beyond that, they then try to blame someone - surely its the fault of the teachers, carers, therapists, parents, Government, someone!!

No - its the fault of Autism.

Now, I bet some reading this will think "he's being very negative".  That is the last refuge of people.  "If you are positive, it will all work out in the end". And with that those people leave reality behind and move into a world of superstition, where a positive mental attitude beats everything.  Cancer? Just be positive! MND? Just be positive! Autism? Just be positive and it will be alright in the end. No it won't.

I actually disagree with the jazz hands because I don't want to stop other kids making noise - its one of those things that kids do to express emotions.  Its a good thing.  Sure it affects my kids. A ramp for a wheelchair user, braille on signs, the provision of a quieter and darker sideroom for kids who suffer sensory overload, none of these prevent the enjoyment of mainstream kids moving around them.  But its wrong to stop kids doing something as natural as expressing emotion through loud sounds. Electric guitar anyone?

Splendid piece of writing. That's the thing about autism that is the hardest for people to get their head around. Adam's mother still goes through it every now and then over two and a half years after the diagnosis by CAMHS. You can't take pills to stop it, you can't transplant an organ. 

Chalky isn't being negative at all. He is being realistic about the effects of autism on an individual. another thing to consider is the wide range of autism as Chalky says. One child might be fine with loud noises: another completely spooked. Whereas bone cancer is generally consistent between sufferers, autism is one of those diagnoses that is very individual in how it manifests itself. Stuff like hand flapping is common but as you see more, you understand more about that individual. 

You can be positive for everything that child does to the maximum of their ability and still be sad at their limitations. 

And if you're me, be very happy that a two and a half year ordeal with a crappy school SEN co-ordinator has been rectified in four weeks by a new wonderful SENCO this term and we're well on our way to hopefully getting an EHCP in time for secondary school in two years (and yes to those who haven't fought the system, this is how far you have to be ahead of the game). 

Chalky

@Heartfeltdawn - the same consultant said we had to become, and develop a reputation as, "PPP", Pleasantly Persistent Parents.  Whenever we meet someone new in Health or Education, we ensure they know we are PPP, we have objectives, we learn how the system works, and we use that knowledge plus pleasant persistence to get what our girls need.  But equally we have been blessed with great people in the professions helping us and the school is superb.  Some SENCOs struggle to understand Autism - we had one who said "I've had this great idea. I'm going to remove all routine so that when your child comes in each morning they won't know what we are going to do. That will break their dependency on routine!"  Thankfully she is no longer working in education or with children.

Iamnobody

Heartfeltdawn said:

Iamnobody said:

I don’t know much about autism but surely if you keep on accommodating and making allowances it’s not progress? It doesn’t help people overcome their problems and live a ‘normal’ functioning life?

I’m happy to be shot down as I’ve only done a basic awareness course through work.

But I can speak as a parent and I wouldn’t want the world to change for my kids. I’d want them to learn and adopt coping mechanisms.

Then I'll speak as a parent to an autistic 9 year old child called Adam.

"I don’t know much about autism but surely if you keep on accommodating and making allowances it’s not progress? It doesn’t help people overcome their problems and live a ‘normal’ functioning life?"

Yes it is progress. The quote in bold gets me because it's presenting this idea that autism is something a child can just overcome. This is palpably untrue in many cases. You find other ways of getting to the solution/end product but you don't overcome the problem.

When I have to grab Adam because he follows those people ducking across the road when the red man is up, it is making allowances. It isn't measurable progress. He can cross the road safely but he can sometimes forget when he's in a big crowd because he's overloaded in the sensory department (which is one reason why jazz hands works for autistic people. I've seen Adam react to an ambulance go past as if he's been tortured). 

There is no way to totally overcome these barriers. You work around them. 

Which feeds into the next section...

"I’d want them to learn and adopt coping mechanisms." - this is one of the hardest elements of autism. The way Adam sees things, he sees the start of the journey and the end of the journey. Figuring out the bits in the middle is the bit he finds so damn difficult. You may want them to find coping mechanisms but there could be a chance that they simply do not have the ability to develop the mechanisms you can and think they should. 

"But I can speak as a parent and I wouldn’t want the world to change for my kids."

So if you had a kid in a wheelchair and the school didn't have wheelchair ramps, you'd be unhappy if that world then changed to include ramps?  Putting Braille on signs for visually impaired kids is changing the world for them. Greater awareness for people with needs is changing the world for them, and that is as it should be. 

I'm not trying to shoot you down and I hope this doesn't come over as being a shooting gallery. Autism is a fucking hard condition to understand, let alone parent. I'm sure @Chalky and others on this forum who are in a similar position to me would emphasise this point. What can come over as 'making allowances' is actually 'best practice' when looking after an autistic child. 

No it doesn’t come across as a shooting gallery @heartfeltdawn and I appreciate much of what you have set out above. And @chalky.

A bad choice of words by me - of course I’d want the environment to change for my kids or for anyone who needs assistance. We already do that - building regs etc I’ve got light switches that are too low and mains sockets that are too high! I don’t have a problem with that - and any ramps etc other mobility/disability aids.

I guess I really meant that ideally I wouldn’ want the majority to have to sacrifice their enjoyment and behaviours. The physical world/environment I am all for improvements for accessibility.

Whether my feelings would change if I was personally faced with that challenge - I don’t think so - @chalky faces those challenges and shares my view. He also conveys it in the written word better than I can.

Heartfeltdawn

Chalky said:

@Heartfeltdawn - the same consultant said we had to become, and develop a reputation as, "PPP", Pleasantly Persistent Parents.  Whenever we meet someone new in Health or Education, we ensure they know we are PPP, we have objectives, we learn how the system works, and we use that knowledge plus pleasant persistence to get what our girls need.  But equally we have been blessed with great people in the professions helping us and the school is superb.  Some SENCOs struggle to understand Autism - we had one who said "I've had this great idea. I'm going to remove all routine so that when your child comes in each morning they won't know what we are going to do. That will break their dependency on routine!"  Thankfully she is no longer working in education or with children.

The previous SENCO simply lied her tits off, ignored medical advie for the child's doctor, ignored the CAMHS assessment, ad more besides. Once I moved down here last November and started the ball rolling, picking out the failures in procedure was easy. Reporting them to the school and having to wait for them to reply (six weeks minimum) was very painful. Having them fail on the top of previous failures (eg. notifying the local authority of a safeguarding issue regarding Adam (he talked about sex at school and the teachers flapped) without notifying the parents that he was being referred) simply stirred the pot further. In the end I had the Governing Body all convene for a meeting and tore them to bits. It helps having studied SEN provision at uni, worked with school appeals regarding SEN provision at LA level, and having a mother who was SENCO for over two decades until her recent retirement to fall back upon.  

The new SENCO to her credit came in last year and it was quite apparent that she knew how badly the previous one had failed. Now she has been bumped up to full-time SEN manager, she has worked some minor miracles to sort out their SEN issues. 

I've had exactly the same situation regarding someone trying to remove schedule from Adam's life as you describe. Truly maddening, isn't it? 

Heartfeltdawn

Iamnobody said:

I guess I really meant that ideally I wouldn’ want the majority to have to sacrifice their enjoyment and behaviours. The physical world/environment I am all for improvements for accessibility.

Whether my feelings would change if I was personally faced with that challenge - I don’t think so - @chalky faces those challenges and shares my view. He also conveys it in the written word better than I can.

I wouldn't want that either so it'd have to be assessed on an individual case by case basis. In my situation, I wouldn't ban clapping but would inform the school beforehand to let Adam know that it will get noisy. Prior preparation and all that.

Excellent discussion topic, this thread  

Chalky

Heartfeltdawn said:

Chalky said:

@Heartfeltdawn - the same consultant said we had to become, and develop a reputation as, "PPP", Pleasantly Persistent Parents.  Whenever we meet someone new in Health or Education, we ensure they know we are PPP, we have objectives, we learn how the system works, and we use that knowledge plus pleasant persistence to get what our girls need.  But equally we have been blessed with great people in the professions helping us and the school is superb.  Some SENCOs struggle to understand Autism - we had one who said "I've had this great idea. I'm going to remove all routine so that when your child comes in each morning they won't know what we are going to do. That will break their dependency on routine!"  Thankfully she is no longer working in education or with children.

The previous SENCO simply lied her tits off, ignored medical advie for the child's doctor, ignored the CAMHS assessment, ad more besides. Once I moved down here last November and started the ball rolling, picking out the failures in procedure was easy. Reporting them to the school and having to wait for them to reply (six weeks minimum) was very painful. Having them fail on the top of previous failures (eg. notifying the local authority of a safeguarding issue regarding Adam (he talked about sex at school and the teachers flapped) without notifying the parents that he was being referred) simply stirred the pot further. In the end I had the Governing Body all convene for a meeting and tore them to bits. It helps having studied SEN provision at uni, worked with school appeals regarding SEN provision at LA level, and having a mother who was SENCO for over two decades until her recent retirement to fall back upon.  

The new SENCO to her credit came in last year and it was quite apparent that she knew how badly the previous one had failed. Now she has been bumped up to full-time SEN manager, she has worked some minor miracles to sort out their SEN issues. 

I've had exactly the same situation regarding someone trying to remove schedule from Adam's life as you describe. Truly maddening, isn't it? 

It is, and it must be a hundred times worse for people who don't have your strong background of experience or who aren't strong characters like you and me.  There is also a postcode lottery aspect around diagnosis and funding that must be incredibly hurtful to the parents and harmful to the children.  Its also a godsend that the right person, e.g. your new SENCO, can suddenly make a huge difference to the quality of the lives of the autistic child and parents.  Like so many things in life, finding the right person to help you can change the horror story into a happy ending, or at least a hopeful one.

Heartfeltdawn

Yes there is. A friend of mine back in Wiltshire has a 10 year old child who was diagnosed this year. Hearing her going against the system there compared to my London area is quite revealing. Then again, areas of London are not equivalent. Goodness knows what things are like in some areas that are oversubscribed and badly underfunded. 

ToneControl

Chalky said:

No - its the fault of Autism.

Now, I bet some reading this will think "he's being very negative".  That is the last refuge of people.  "If you are positive, it will all work out in the end". And with that those people leave reality behind and move into a world of superstition, where a positive mental attitude beats everything.  Cancer? Just be positive! MND? Just be positive! Autism? Just be positive and it will be alright in the end. No it won't.

I actually disagree with the jazz hands because I don't want to stop other kids making noise - its one of those things that kids do to express emotions.  Its a good thing.  Sure it affects my kids. A ramp for a wheelchair user, braille on signs, the provision of a quieter and darker sideroom for kids who suffer sensory overload, none of these prevent the enjoyment of mainstream kids moving around them.  But its wrong to stop kids doing something as natural as expressing emotion through loud sounds. Electric guitar anyone?

Excellent post

Some people think their lives are fine because of their mental strength, and that PMA can fix everything. What a sad vanity, those of us with critical illnesses in our families are well placed to compare some peoples'  "positive mental attitude" against the mental strength of families supporting those with critical illnesses

On a farcical note, I had one idiot asking me if I could just "push through" with my coeliac disease, I said "sure if you don't mind having constant diarrhoea many times every day"

With any illness, some situations need planning ahead - tactics to deal with likely issues, or how to avoid them. Some are best avoided, as we do for some situations for my Mrs, and for my need for GF food: lots of pre-planning, lots of explaining, lots of time wasterd

My problem with the Jazz hands is that trying to suppress normal polite social behaviour in large groups is a negative pressure, likely to reduce the quality of an experience for all, I would guess that many would feel ridiculous. Best to ask people to clap quietly for just a few seconds I would think, like the polite Japanese audiences at rock concerts in the 70s, or to use verbal encouragement like those clowns in Westminster.

guitarfishbay

ToneControl said:

Some people think their lives are fine because of their mental strength, and that PMA can fix everything. What a sad vanity, those of us with critical illnesses in our families are well placed to compare some peoples'  "positive mental attitude" against the mental strength of families supporting those with critical illnesses

On a farcical note, I had one idiot asking me if I could just "push through" with my coeliac disease, I said "sure if you don't mind having constant diarrhoea many times every day"

With any illness, some situations need planning ahead - tactics to deal with likely issues, or how to avoid them. Some are best avoided, as we do for some situations for my Mrs, and for my need for GF food: lots of pre-planning, lots of explaining, lots of time wasterd

My problem with the Jazz hands is that trying to suppress normal polite social behaviour in large groups is a negative pressure, likely to reduce the quality of an experience for all, I would guess that many would feel ridiculous. Best to ask people to clap quietly for just a few seconds I would think, like the polite Japanese audiences at rock concerts in the 70s, or to use verbal encouragement like those clowns in Westminster.

How does Jazz Hands reduce the quality at a Student Union event? We aren’t talking about a gig here, we’re talking about meetings of students.

ToneControl

guitarfishbay said:

ToneControl said:

Some people think their lives are fine because of their mental strength, and that PMA can fix everything. What a sad vanity, those of us with critical illnesses in our families are well placed to compare some peoples'  "positive mental attitude" against the mental strength of families supporting those with critical illnesses

On a farcical note, I had one idiot asking me if I could just "push through" with my coeliac disease, I said "sure if you don't mind having constant diarrhoea many times every day"

With any illness, some situations need planning ahead - tactics to deal with likely issues, or how to avoid them. Some are best avoided, as we do for some situations for my Mrs, and for my need for GF food: lots of pre-planning, lots of explaining, lots of time wasted

My problem with the Jazz hands is that trying to suppress normal polite social behaviour in large groups is a negative pressure, likely to reduce the quality of an experience for all, I would guess that many would feel ridiculous. Best to ask people to clap quietly for just a few seconds I would think, like the polite Japanese audiences at rock concerts in the 70s, or to use verbal encouragement like those clowns in Westminster.

How does Jazz Hands reduce the quality at a Student Union event? We aren’t talking about a gig here, we’re talking about meetings of students.

because it's an obstacle to normal interaction, e.g. those with social anxiety will feel anxious to do something so strange. It's a stupid alternative to loud applause, better alternatives exist.

guitarfishbay

I don’t think you understand.

Sound is the thing that can be overwhelming, more so than the anxiety of doing something ‘stupid’

Octafish

Clarky said:

Nitefly said:

What if you want to boo?

jazz boo??

I'm up for Jazz Bums to show disapproval...

Octafish

Iamnobody said:

In what context is it being proposed? At gigs? Lectures? Presentations?

I don’t know much about autism but surely if you keep on accommodating and making allowances it’s not progress? It doesn’t help people overcome their problems and live a ‘normal’ functioning life?

I’m happy to be shot down as I’ve only done a basic awareness course through work.

But I can speak as a parent and I wouldn’t want the world to change for my kids. I’d want them to learn and adopt coping mechanisms.

Cool, you got the cure for autism

ToneControl

guitarfishbay said:

I don’t think you understand.

Sound is the thing that can be overwhelming, more so than the anxiety of doing something ‘stupid’

So I think you are assuming that no one in the room will have any illness or condition except for autism? 

You're missing my point, which is that if you completely and artificially  change the nature of social interaction to address the problems of one minority, you will then cause many other problems for other people.  It's not really a new perspective:  https://en.wikipedia.org/wiki/Unintended_consequences

guitarfishbay

ToneControl said:

guitarfishbay said:

I don’t think you understand.

Sound is the thing that can be overwhelming, more so than the anxiety of doing something ‘stupid’

So I think you are assuming that no one in the room will have any illness or condition except for autism? 

You're missing my point, which is that if you completely and artificially  change the nature of social interaction to address the problems of one minority, you will then cause many other problems for other people.  It's not really a new perspective:  https://en.wikipedia.org/wiki/Unintended_consequences

Let's try this from a different angle. 

Why should any food establishment take an interest in offering gluten free food?  Not talking about specialist offerings, I mean literally any of them, at all? 

Why should a minority have any impact on the shelf space, or menu space, or kitchen prep space and time for other people who can eat gluten just fine?

Heartfeltdawn

And kind of jumping in with @guitarfishbay above:

How would you respond to a school that issues a blanket ban of nut-based products on the school premises?

At our school there is one child with a nut allergy. To protect that child that dictates packed lunch policy and it dictates school meal policy for the entire school of 1,000+. That is protecting a minority of one and it is restricting the majority in what they can eat. I doubt you'd say that the school have done the wrong thing with such a ban as nut allergy reactions can be fatal, as has been seen in the press recently. 

Sometimes making a majority change their actions is the right course of action.  

ToneControl

guitarfishbay said:

ToneControl said:

guitarfishbay said:

I don’t think you understand.

Sound is the thing that can be overwhelming, more so than the anxiety of doing something ‘stupid’

So I think you are assuming that no one in the room will have any illness or condition except for autism? 

You're missing my point, which is that if you completely and artificially  change the nature of social interaction to address the problems of one minority, you will then cause many other problems for other people.  It's not really a new perspective:  https://en.wikipedia.org/wiki/Unintended_consequences

Let's try this from a different angle. 

Why should any food establishment take an interest in offering gluten free food?  Not talking about specialist offerings, I mean literally any of them, at all? 

Why should a minority have any impact on the shelf space, or menu space, or kitchen prep space and time for other people who can eat gluten just fine?

many of them didn't until they were compelled by law to declare allergens

Not a useful comparison really, we're talking about the student union compelling everyone to modify their behaviour.
If all Italian restaurants insisted that they would not sell gluten, and that all should eat the less-pleasant GF alternatives, I would say that was not a good idea

ToneControl

Heartfeltdawn said:

Sometimes making a majority change their actions is the right course of action.  

I didn't dispute that, I said the student union had chosen the wrong change, and I predicted unintended negative consequences for other groups

guitarfishbay

ToneControl said:

Not a useful comparison really, we're talking about the student union compelling everyone to modify their behaviour.
If all Italian restaurants insisted that they would not sell gluten, and that all should eat the less-pleasant GF alternatives, I would say that was not a good idea

There is no ban.

It's just a recommendation.  And I maintain it is a reasonable recommendation for where they propose it. 

Your arguments focus on discussion of a ban whereas I and I believe @Heartfeltdawn are discussing the merits of modifying behaviour based on best interests and inclusion.

https://inews.co.uk/news/clapping-ban-manchester-university-students-union-jazz-hands/

- ‘Not banning clapping’ 

• “The policy was proposed in order to encourage the use of British Sign Language (BSL) clapping during our democratic events to make those events more accessible and inclusive for all. 
• We are not banning audible clapping – we understand that some people may be more comfortable to continue using it.” 
• They said the SU is not applying the rule to events held there and is simply “to be encouraged at the Union’s democratic events” which are a relatively small number over the university year. 

ToneControl

Heartfeltdawn said:

And kind of jumping in with @guitarfishbay above:

How would you respond to a school that issues a blanket ban of nut-based products on the school premises?

At our school there is one child with a nut allergy. To protect that child that dictates packed lunch policy and it dictates school meal policy for the entire school of 1,000+. That is protecting a minority of one and it is restricting the majority in what they can eat. I doubt you'd say that the school have done the wrong thing with such a ban as nut allergy reactions can be fatal, as has been seen in the press recently. 

It's a good case to consider, but as always the problem is going to be that you don't have 1000 people with no independent issues or constraints, and then just one person with a nut allergy.  Any policy has to be proportionate and sensible.
In a school of 1000, you could have several children with allergies. You could have very different ethical, religious and medically-prescribed diets. There is no guarantee that all of these are compatible. What would one do? 

On an aircraft, everyone is stuck in a tube full of shared air, it's easy to see why people would worry more about various allergens, and as we've seen - the fact that medical help is hard to get quickly once you're airborne is a big factor.
Nevertheless I just did a quick search on airborne allergens, and found results saying that this is not an issue with peanuts:
http://www.peanut-institute.org/eating-well/allergy/
https://www.allergicliving.com/experts/when-is-there-a-risk-of-an-airborne-food-allergy-reaction/
So I'd say your school's policy is disproportionate to the risk
In fact, for food allergens it seems there is more of a risk to those with a seafood allergy when it is being steamed or fried in the same building

How about if, to protect the 1% of kids with coeliac disease, we banned wheat bread and pasta from school dining rooms?
It would be a mistake of course

I reckon it's all down to bad science, people just panic and over-react because they are not equipped with the knowledge to make a proper decision, and they read too many bad science newspaper headlines