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Travelling with a disability: I have autism – it takes me days to recover from one Tube journey

AGXStarseed

Well-Known Member
(Not written by me)

Claire-e1489319177465-960x639.jpg

Claire has autism and says: “The world is a very unpredictable and confusing place.” (Image: Transport for All)


This week i will be publishing a series of accounts about difficulties of travelling on public transport, penned by Transport for All members who have an impairment or disability.

Here Claire Lindsey, 38, from Greenwich, tells her story. She regularly travels on the Tube and is autistic.


“I am autistic. It’s an invisible impairment; I don’t look ‘autistic’ or ‘disabled’ and most people would be unaware of my impairment.

“Because of my autism I am hypersensitive to noises. I am completely unable to cut out background noise, lights, movements and odours. I also have balance and vestibular difficulties meaning that I need assistance to travel. Many stations that are accessible to wheelchair users are nevertheless inaccessible to me because of my autism.

“An escalator might be turned off or there might be too many people on that day; I am then forced to terminate the journey and go home. I try to avoid peak times because crowds and noise cause me anxiety. This leads to many cancelled appointments (often booked weeks in advance) and I very rarely go out for social occasions.

“I envy other passengers who just turn up, walk into the station and step onto a train or board a bus without thinking. Travelling on the Underground is like being on an extreme roller coaster for me. I can’t just arrive and use any station. It is an unknown place and is therefore frightening and difficult to deal with.


‘Autistic meltdown’

“I have to take medication to manage the extreme stress and one journey needs several days of recovery. I have to undertake an enormous amount of planning before each trip. Any changes, no matter how small, can cause anxiety and stress.

“The world is a very unpredictable and confusing place. I need to have a fixed daily routine, so that I know what is going to happen. When there are diversions, journey restrictions or cancellations, it doesn’t just irritate me, it can feel like the end of the world and it can cause an ‘autistic meltdown’ – an extreme panic attack which causes me to pass out.

“I always seek assistance from members of staff especially when I am using the Underground but I have also had to ask members of the public, which is extremely difficult for me not only because I find communication stressful but having an invisible impairment means that it isn’t always obvious what assistance I need.

“Other passengers are also unaware of why someone with an invisible impairment might want a priority seat. That is why I am now using the new Transport for London’s Priority Seat Badge and card, but before they came out I wore a badge stating ‘Autistic’ so that people had a visible clue to my impairment.


Lack of awareness of invisible impairments

“This helped in two ways: The first identified me to members of staff and public, so that I was able to get assistance. The second was to reduce the confrontation that I used to face when asking someone if I could sit down; or if I was in a priority seat, other passengers would think I shouldn’t be sitting there and became aggressive and argumentative. This is, I think, because of a general lack of awareness by the public of invisible impairments. This extends to the symbols and posters in the transport network; they only show visible impairments.

“Accessibility for me means something other than ramps and lifts. It also includes reducing noise pollution, making signs and ticket machines easier to understand; making stations easier to navigate and staff more approachable and aware. This shortlist of changes is easy to overlook but they would make a big impact on the way we can access the transport system. Think of the changes that were made to the transport network when we had the Olympics to accommodate tourists, Paralympians and non-English speakers.

It isn’t all bad, however. One of the best things about being autistic is that I notice more detail. I love the art and the design involved with transport, especially the Underground. It would take just a few changes to the Underground system to improve things for everyone.


Source: Using public transport when you have autism - an extreme rollercoaster
 
OMG don't get me started on travel. I saw Rain Man and laughed. No way could I travel across country and not end up dead! I cannot eat or move or sleep. How did he sleep in all the different motels???!! NOT! I had to travel once way up North and it took two days. THen it took about a week to recover and on way home, we had to go all the way, 20 hours, in one day. I was screaming in back seat and crying. My legs hurt so bad and I had not slept for two weeks (I slept some at the vacation place, but not well and peple talkming all night and I got so geared up)

I lost about 8 pounds and when I got home, it took me about a month to even recover from that "vacation" . What hell.

FREAKING NIGHTMARE!!!!! TRAVEL WITH NEURO DIVERSITY SUCKS!!!!!
 

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