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First autism friendly railway launched by Northern

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PBarnesHST

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30907 said:
Parallel drawn, but I think you have overlooked DarloRich's later and more nuanced comment.
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DarloRich said:
Will this equipment really have a positive effect on peoples lives and help them to use the train? Or, is it just a way of getting a bit of cheap publicity?
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I disagree. St Pancras and other stations have complimentary wheelchairs available to passengers.

You can just as easily ask if this equipment really has a positive effect on peoples lives and help them use the train? Or if it is just a way of getting a bit of cheap publicity, but yet very few people will ask because it just speaks to the way that we treat physical ailments as if they are all insurmountable, but any mental ailments as if they were the most diminutive thing happening to a person. Tbh statements like "develop proper coping mechanisms" has a sentiment an awful lot like "have you just tried not being depressed" at its heart from my view.
 
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Esker-pades

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DarloRich said:
not sure how I feel about this tbh. I am sure there are people who suffer really badly with this problem and I want them to be supported and helped but would it not be better to equip someone to develop proper coping mechanisms to help them function "normally" in the real world rather than giving them a pair of ear muffs and marking them out as different?

I am not trying to cause an argument btw just not sure this helps anyone beyond a business looking like they care and garnering a bit of free publicity.
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I've emphasised the part I will thoroughly disagree with.

The coping mechanisms that you refer to are the equipment when it comes to the sensory aspects of Autistic Spectrum Disorder. My noise-muffling headphones allow me to function fairly well in the real world. It's why I am going to be able to go to the pub with some friends this evening. If I didn't have them, I would either not go (and continue the spiral into depressed loneliness) or go and risk a meltdown (not the explosive screaming type, but more implosive).

I'll also question the assertion that wearing ear defenders will mark someone out as having a sensory processing disorder.


I am naturally cynical, and I am with this. I really don't know if this will make any difference. But: the equipment will be helpful; and, if the training is good, I'll be happy. It would be a welcome break from the "what's-it-got-to-do-with-me?" attitude that I've got when I've disclosed in the past. But, we simply don't yet know how good it will be.
 
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FGW_DID said:
Which is all well & good if the “timetable” does happen to flow smoothly. Not so good when ‘real life’ happens and things / times change! It’s getting the person to cope / adapt with those situations.
For some it’s big changes that tip them over into ‘meltdown’ mode, for others it may be the most inconsequential change that triggers them!
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There is a section in the booklet that covers what to do when things don't go to plan (lost property, train is late, cancellations). I do think some of the advice could be clearer / in more detail (off the top, there's one that says "if a train is late, you can use your phone to check for updates" without giving any pointers about which website / app you could use to do that). And hopefully the staff training will give them ways to respond that don't further confuse or distress the person in need of help.
 
Peter C

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FelixtheCat said:
I've emphasised the part I will thoroughly disagree with.

The coping mechanisms that you refer to are the equipment when it comes to the sensory aspects of Autistic Spectrum Disorder. My noise-muffling headphones allow me to function fairly well in the real world. It's why I am going to be able to go to the pub with some friends this evening. If I didn't have them, I would either not go (and continue the spiral into depressed loneliness) or go and risk a meltdown (not the explosive screaming type, but more implosive).

I'll also question the assertion that wearing ear defenders will mark someone out as having a sensory processing disorder.


I am naturally cynical, and I am with this. I really don't know if this will make any difference. But: the equipment will be helpful; and, if the training is good, I'll be happy. It would be a welcome break from the "what's-it-got-to-do-with-me?" attitude that I've got when I've disclosed in the past. But, we simply don't yet know how good it will be.
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Personally, I would be happier to see someone who needs headphones using them rather than having some sort of meltdown or being depressed. People without autism wear headphones all the time around towns and cities, so what's the difference, on face value to someone walking past them in the street, between someone who has autism and is using them to help them cope with it and someone who doesn't have autism but likes listening to their AirPod iPhone things?

-Peter
 
Jorge Da Silva

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thenorthern said:
I have an Aspergers Diagnosis so I will be traveling on the line to try this.

I was talking to a friend of mine though and she commented that all trains must be autism friendly as a train fascination is common for people with Aspergers.
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route101 said:
Yeah , its common , same with buses too . Fascinated as to why ?
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Is it really common for those with Aspergers? I mean I am a massive train enthusiast and have been for a while, I was diagnosed with Aspergers Syndrome in June 2019.
 
Highlandspring

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I’m revealing my ignorance here but could someone please explain why a person with autism would want or need to wear ear defenders when on a train?
 
FGW_DID

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Highlandspring said:
I’m revealing my ignorance here but could someone please explain why a person with autism would want or need to wear ear defenders when on a train?
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It’s all to do with sensory overload. Doesn’t just have to be a train, anywhere there is lots of noise, crowds etc.
 
Peter C

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Highlandspring said:
I’m revealing my ignorance here but could someone please explain why a person with autism would want or need to wear ear defenders when on a train?
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Some people with autism are sensitive to loud noises and when there are such noises in their vicinity they can risk a "meltdown". Having ear defenders can stop these noises seeming as loud to them and therefore calms them down. A couple of the people with autism I know use ear defenders and they are very good at calming them down so they can have a relatively normal day. Some trains can be very loud, but that's probably not the reason; they carry them around with them, or if they are with someone else, such as a carer, they can carry them around.

-Peter
 
Esker-pades

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Peter C said:
Personally, I would be happier to see someone who needs headphones using them rather than having some sort of meltdown or being depressed. People without autism wear headphones all the time around towns and cities, so what's the difference, on face value to someone walking past them in the street, between someone who has autism and is using them to help them cope with it and someone who doesn't have autism but likes listening to their AirPod iPhone things?

-Peter
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Yep. If everyone in London who wore headphones was also autistic, the prevelance would appear to be about 70% (especially in the peak).
 
Peter C

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FelixtheCat said:
Yep. If everyone in London who wore headphones was also autistic, the prevelance would appear to be about 70% (especially in the peak).
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Exactly.
I hope my explanations were alright; they have come about from spending time with those with autism and learning about it from their friends.

-Peter
 
Islineclear3_1

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And how do you tell (and console) someone on the ASD spectrum sensitively who arrives at the station that their train is cancelled?. They have been looking foward to a day out and may now have to wait an hour for the next train. ASD people generally don't like sudden change or disruption to pre-prepared plans and may not understand/accept that there was a fault with the train or its driver got delayed on an incoming service etc...etc...

Cue a temper tantrum or a meltdown....
 
Peter C

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robert7111a said:
And how do you tell (and console) someone on the ASD spectrum sensitively who arrives at the station that their train is cancelled?. They have been looking foward to a day out and may now have to wait an hour for the next train. ASD people generally don't like sudden change or disruption to pre-prepared plans and may not understand/accept that there was a fault with the train or its driver got delayed on an incoming service etc...etc...

Cue a temper tantrum or a meltdown....
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I don't know first-hand, but I would expect it depends on the person involved. If they are "better" at dealing with this sort of situation, there would be very little risk of a meltdown. It would not be a "temper tantrum". That's something toddlers do.
If someone wasn't the best at dealing with this sort of situation, I would probably go with just going along with whatever their method of dealing with things is, e.g. headphones, and try and find out as much information about the situation as possible. Maybe if they knew a lot about the railway network they may realise that some services sometimes get cancelled, but this may not be enough to stop a potential meltdown.

-Peter
 
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With the noise aspect quite often people with Autism have Sensory Processing Disorder which can mean they get discomfort at certain sensory things that most people would be ok with. I have Sensory Processing Disorder and there are certain sensory things I can't cope with.
 
Islineclear3_1

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thenorthern said:
With the noise aspect quite often people with Autism have Sensory Processing Disorder which can mean they get discomfort at certain sensory things that most people would be ok with. I have Sensory Processing Disorder and there are certain sensory things I can't cope with.
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Being a spectrum condition, some will relish in the noise (especially if it is rhythmic and repetitive) whilst others will cringe. Others won't like the bright lighting or the texture of the seats and we won't get onto smells....

But most people on the spectrum will know their sensory "triggers" and will avoid/compensate accordingly
 
Bayum

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Highlandspring said:
I’m revealing my ignorance here but could someone please explain why a person with autism would want or need to wear ear defenders when on a train?
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There are some really nice videos that talk about and demonstrate sensory ‘overload’. People on the autistic spectrum tend to have hyper or hypo sensory overload. As a result, their senses can be over excited by what’s going on around them or not.



Because of these things happening, the whole experience can be very very difficult for someone with autism to then focus on being ‘present’ at that moment. Ear defenders, tactile ‘toys’, sunglasses and a multitude of other techniques help to reduce this sensory overload to help someone be ‘present’ by reducing that sensory stimulation.
 
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On the spectrum myself. I agree with a lot that's being said here: headphones sounds like a gimmick, those that rely on them will probably have their own pair already that are exactly adjusted to their needs, and in their favourite colour too. Staff training sounds great, especially if it's done well (I'm slightly cynical here in general but I'll give them the benefit of the doubt).

On the other point that's being discussed a lot: the two are not mutually exclusive. Taking a couple of rail trips with ear defenders and a friend or carer along for support is a good way to work towards being able to function normally on trains, if that's within your ability.
 
Bayum

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Sleeperwaking said:
Your comment about rehearsing / preparing in advance is quite illuminating, thanks. I think they've tried to cover this aspect by publishing booklets for the route with details of where / how long tunnels are, information about every station, and a list of things to do if something goes wrong.
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I really like social stories. They can be started really early and help a variety of children, not just children with autism, prepare for upcoming events in my line of work. The booklets sound a little bit like that - they’re a story of what will happen that can be practised and rehearsed, possibly with someone else. ‘First, you’re going to get up at 5am, a little earlier than you might do normally! Next, you will brush your teeth, put on your boxers, trousers etc...’ Right through to ‘When you get to the station, you are going to speak to...’ ‘When the train arrives...’ ‘When the train has left... You will prepare to get off at the next stop...’
 
DelW

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DarloRich said:
... rather than giving them a pair of ear muffs and marking them out as different?
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Peter C said:
Personally, I would be happier to see someone who needs headphones using them rather than having some sort of meltdown or being depressed. People without autism wear headphones all the time around towns and cities, so what's the difference, on face value to someone walking past them in the street, between someone who has autism and is using them to help them cope with it and someone who doesn't have autism but likes listening to their AirPod iPhone things?
Click to expand...

FelixtheCat said:
Yep. If everyone in London who wore headphones was also autistic, the prevalence would appear to be about 70% (especially in the peak).
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Indeed, so many people wear over-ear Bluetooth headphones these days, to listen to music or podcasts, or even to make phone calls (remember them?), that i don't think over-ear protection would mark anyone out as unusual now.

I have been know to wear Bluetooth headphones on trains without listening to anything, if I prefer to avoid casual conversation (not necessary around London of course, no-one talks to fellow passengers there). I don't do so to deal with any particular condition, in my case I'm just a grumpy old so-and-so who prefers my own company on occasion ;)
 
Peter C

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DelW said:
Indeed, so many people wear over-ear Bluetooth headphones these days, to listen to music or podcasts, or even to make phone calls (remember them?), that i don't think over-ear protection would mark anyone out as unusual now.

I have been know to wear Bluetooth headphones on trains without listening to anything, if I prefer to avoid casual conversation (not necessary around London of course, no-one talks to fellow passengers there). I don't do so to deal with any particular condition, in my case I'm just a grumpy old so-and-so who prefers my own company on occasion ;)
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Definitely.
Furthermore, if someone who has autism is wearing headphones to help them in an unusual/abnormal situation for them, what right does someone else have to make fun/comments on their headphones? Personally, I think people should just let eachother do what they want and not tell other people how to live their lives, especially if the way someone lives their life is the way they like doing it and it is the way they have to do it to ensure they can have a "normal" life.

-Peter
 
DarloRich

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Without wishing to cause further trouble and be accused, again, of being some kind of awful person my point about the ear muffs was that having to be given a special set of ear muffs from the special ear muff storage location is somewhat different to using your own earmuffs and might, just might, mark someone out as being different. I would prefer that didn't happen.
 
Peter C

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DarloRich said:
Without wishing to cause further trouble and be accused, again, of being some kind of awful person my point about the ear muffs was that having to be given a special set of ear muffs from the special ear muff storage location is somewhat different to using your own earmuffs and might, just might, mark someone out as being different. I would prefer that didn't happen.
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Good point - if Northern think that by giving everyone with autism headphones from a cupboard somewhere they are helping, they are very wrong.
I think I'd prefer to go to the station and wear my own headphones, rather than someone else from the railway giving me some - surely people would prefer to have their own so that they know how they work/what they're like?
People being marked out as "different" is just not on - if someone was marked out as different, it could lead to all sorts of bullying, which is never good. I would prefer it if people in the world could just get on with their own lives instead of picking on others.

-Peter
 
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My 7 year old son is diagnosis-pending, but we're pretty sure he is autistic. We take headphones whenever we use trains, simply because of the noise they can generate. Central Line Underground is a particular case in point as the curves west of Shepherd's Bush cause excruciating noise - imagine what that would be like for someone suffering from a sensory overload.

I think having headphones available is a good idea. Yes, you can normally buy them for a few pounds (Tool Station is good for this), but it is handy in case your child's set has been left at home!

Also, having some sort of schedule is a good idea. Taking another of my son's experiences, when SWR guards were on strike, he panicked because the stopping pattern was different to normal. The manager covering realised this, and showed my son his official stopping list which was a brilliant piece of customer service and calmed him down no end.

Another scenario was on one occasion we were away in Manchester. We were awaiting a train from Piccadilly to Hindley (his grandparents live there) - the departure screen was showing delayed then cancelled. He started panicking. Fortunately, I have the NR app and was able to find out that the train had broken down at Stockport. Not only was he worried about how to get home, but he was worried about the train! Fortunately, a Blackpool train wasn't far off, so I explained to him that we could catch that to Salford Crescent, then change onto another train heading towards Wigan. That, coupled with my reassuring that the train would be fixed(!), meant he calmed down quickly - plus got to go on more trains than was planned!
 
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It’s an interesting and welcome development by Northern this. I’ve got a nephew who is on the spectrum and recently done a course to further my understanding of it through my Union. What I will say about this is that it is going to be extremely difficult to do ‘training’ of staff to understand autism as it’s a very difficult thing for medical staff to diagnose, so how a member of staff will be able to interact appropriately may well be very difficult as people have said on here. What I will say is this use of ‘normal’, it really annoys me, in exactly the same manner enthusiasts on here call the general public the same thing.

Think of it as a phone operating system. Many use iOS, others Android, but you’ll have a few using something totally different. Windows Mobile, Symbian, Firefox etc. They’re using a system that ain’t compatible with yours. That’s all.
 
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