Autism and Merlin RAP

[Perzival]

I think it's fair to say that the amount of people diagnosed with autism has increased by a huge amount compared to the amount of people who were diagnosed with the separate conditions prior to the change in the diagnostic manuals and people with a dx can vary between being a doctor and having a family, mortgage, social life etc to requiring 2:1 24 hour support with very limited communication.

This week Merlin that own Alton Towers, Thorpe park, Chessington and Legoland have decided to not give their ride access pass to people who struggle in crowds. This has caused uproar within the Merlin/ theme park groups as the majority of people who have this struggle have autism.

For those who aren't aware, in order to get a Ride Access Pass (RAP) you have to give evidence of your disabilities to a company called Nimbus who then decide what type of issues you have and give you a card with various icons on that you can them submit to venues for reasonable adjustments.

Throw in the commentary around the SEND white paper and the government review into why so many people are being diagnosed and i'm wondering if this is a more general move and one which is becoming more acceptable.

As the diagnosis has gone from previously representing mainly boy/ men with quite complex needs to representing a vast array of differring presentations and with an ever increasing amount of people being diagnosed, aibu to think that this is just the start and more venues/ places will limit or remove reasonable adjustments for this group of people?

AIBU= No, there isn't a push back against the autism diagnosis and adjustments made for the dx

AINBU= yes, more venues will start to remove or reduce adjustments for those with Autism

To avoid drip feeding I have a ds with profound autism and would imagine he will likely always get various reasonable adjustments (still gets RAP) etc.

To me this reads dangerously as if you think your child's needs are more important than the needs of other disabled children and that you're only worried about the "rise in autism" (banging on about "self diagnosis") in terms of how it could negatively impact support for your son. It's not a competition. All disabled children, with autism in all the forms it can take, as well as other conditions, deserve support. I think it's a sad sign of the dire lack of resources and public support for disabled people that your first thought is protecting your son from all these "piss takers" rather than considering how they could be supported in ADDITION to the support that your son (rightly) gets. No one gets enough support, that doesn't mean people are inventing their diagnoses and that their conditions don't impact them.

Merlin excluded us last year when they changed the booking system for rap, the dates booked out so quickly, and we couldn't always know when would be a good day to go. I didn't renew our annual passes, and now avoid Merlin. I was surprised there wasn't many complaining last year.
The new changes wouldn't affect us as my dc has the symbols needed on their access card, however I won't be renewing their access card this year as it just isn't used so not worth the £15.
The access card used to be so valuable to enabling my dc to access the outside world but sadly it doesn't work the same anymore. I'm not sure if that is because there's so many people eligible, that it has caused the system to fail, perhaps the access card needs to change.

Disability isn't some binary concept though as you seem to imply. It is more of a spectrum in most cases. For example as as referenced upthread, you have people with very few autistic traits, people with some significant autistic traits but not enough to warrant a diagnosis of Autism (BAP) and those with an autistic diagnosis. Within those with a diagnosis is the richest man in the world and someone that will smear feaces on the wall and is completely mute.

Do you really expect the parent of the smearing child to accept that Elon Musk needs the same level of support? Do you expect someone that is the parent of a child that is suffering with an autistic trait but is BAP as opposed to autistic to ignore their suffering because they aren't officially disabled?

It's clear that the ride access queues have become so long that many of the children most severely impacted by their disability can't access the rides. This isn't accessibility in action either. There needs to be some way to limit the ride access queues to ensure that regular customers aren't too impacted , the business can function properly and make money and the more seriously disabled can still access the rides. The current system isn't working. There should obviously never be days where 44% of theme park attendees have these passes at some locations. Something has to give.

Ofcourse my first thought is of my own child, i'm not going to prioritise thinking of others above him am i?

As for the self dx those people don't see how insulting they are being to those with a real dx. You can't just opt in to a disability. The fact that in some areas this is accepted is sad. The rhetoric of "autism iams a superpower" etc is very dangerous and i'm right to be concerned. Trying to manipulate me to be quiet because i'm not concerned for some of the people who are making my ds' life more difficult (self id) isn't going to work.

If you actually read what i've write you'll see i am concerned for those yp/kids who present like mine who only have the autism dx and how it'll impact them.

No i'm not worried about the piss takers and let's be honest there are some (not all). They're not really worried about the impact they have on people who do genuinely need these adjustments, maybe have a word with them instead?

I'm not "trying to manipulate you to be quiet" at all! I'm disagreeing with you and challenging some of your comments which I find concerning. Of course we all care about our own children but that doesn't mean we have to belittle the needs of others.

It can be incredibly difficult to get a diagnosis, especially for autistic children who mask, but even those with more obvious difficulties still face very long NHS waiting lists for assessment.

I do think a formal diagnosis is important and that's why I fought for it for my son (and yes I did have to fight) but I think that we can have some empathy for people who may not want to have that fight for whatever reason.

I think the number of people who "self-identify" or "self-diagnose" as autistic without having genuine needs is actually so small as to be pretty irrelevant to this debate. It does detract attention from the people who need it, like your son and mine.

I’m autistic but support this move. I’ve seen Merlin attractions with a bigger RAP queue than the normal queue. I’ve heard overheard multiple times people talking about how they’ve basically blagged a RAP, I’ve seen someone tell a stranger their kids could jump the queue with their kid as they have a RAP. The system was being widely, massively abused.

How about the people who are going private and basically paying for an ADHD diagnosis? Anyone with an ADHD diagnosis can get a RAP.

@NameChange30 you couldn't know the number of people who self id and don't have autism as it would take an autism assessment to make those stats.

Yes, you have been manipulative in your approach and you can find my concerning. I find it concerning that self id into a disability is acceptable. With the exception of adhd and similar I can't think of another disability where it is ok to self declare without that being classed as a mh problem (not autism).

"To me this reads dangerously as if you think your child's needs are more important than the needs of other disabled children and that you're only worried about the "rise in autism" (banging on about "self diagnosis") in terms of how it could negatively impact support for your son"
This is manipulative, to most parent their children's needs are a priority.

No, if you read my posts i'm not "only worried about the rise in autism" (banging on about "self diagnosis"). If you read the thread you"ll see i'm concerned about the wider implications and other adjustments/ acceptance that may become acceptable following this. Merlin is a large organisation, it is possible others will follow. Self id is relevant when discussing access for those with diagnosed disabilities. The fact that people try to self id demishes those dx's and ofcourse that impacts on how they're viewed.

You wrote ". I think it's a sad sign of the dire lack of resources and public support for disabled people that your first thought is protecting your son from all these "piss takers" rather than considering how they could be supported in ADDITION to the support that your son (rightly) gets." I do think some people are taking the piss, why on Earth would I advocate for their suppory when they are part of the problem - see earlier post of people discussing said piss taking in a merlin park queue.

Does this feed back to the wider question of is the ASD diagnosis now too wide and is some form of sub categorisation needed?

I do feel theme parks are in a difficult position of trying to ensure a service which is vital isn't overwhelmed by making access to it too broad.

Unfortunately that will catch families in the middle and I have no idea how you sort that out. It feels like something wider than theme park decisions needs to happen.

There is a problem with queue times at theses places. My daughter went to Alton Towers with school and in the whole day she managed to get on only 3 rides due to queue times. We don't tend to go to Merlin places because of this. Nobody wants to queue for 2+ hours for a 3 minute ride.

I think removing Asperger’s as a diagnosis in the DSM VI has caused issues and muddied the water when it comes to discussions around autism.

For example, I saw a video shared of a child with high needs autism smashing a relative’s birthday cake while attending a birthday party (he was described as so in the description). It’s clear from the video that the child is non-verbal and it was an impulsive sensory seeking action (someone happened to put the cake down on the table near to where the child was stood). The response to this child on social media was shocking really. The discourse revolved around critiquing the behaviour of the child, with many stating that the child should know better despite having high needs autism, that the parents should never have allowed it to happen, and that if the child ‘could not behave’ then the parents should not have brought them to the relative’s birthday party. All of these arguments were supported by individuals claiming to have autism themselves. Comments left by those claiming to be autistic included, “I was raised to know better”, and, “autism is not an excuse”.

The majority of the solutions offered by those commenting centred on chastising the child or excluding the child from future social events completely. There was little empathy towards the child.

My point is there was absolutely no discrimination in the discussion between those who had autism, but had the ability to interpret the video and leave a comment, and the child in the video who (to me) appeared to have no understanding of his own actions (I.e. he did not appear to understand that he had just upset someone by smashing the cake and seemed oblivious to the reactions of others around him). I tried highlighting the child’s lack of awareness in the comments and I was heavily criticised for being insulting towards autistic people, with people insisting the child knew what he was doing and that his autism didn’t excuse his actions.

Now, I don’t know if I’m right or wrong with my interpretation of this video. But what I realised is that you can’t seem to discuss the struggles of people with higher needs without stigmatising those with lower needs. People with a range of different needs seem to get lumped together and those who are verbal and able to work, write, etc. are able to advocate for themselves and so are perhaps more in focus.

Those creating the rules regarding who gets special adjustments at theme parks are obviously ignorant to the sensory struggles people with autism experience (which is inexcusable because they should be basing such decisions on evidence and they should be using experts to help inform), but I think this is partly because a lot of social awareness and discussion on autism now focuses on individuals who are able to function independently within society (albeit with difficulty).

We used to use Chessington a lot and loved the access pass. My daughter is 27 now - each year the numbers using the system grew and grew, to the point it was barely worth it as so many people were using it. We gave up her merlin pass about five years ago as a result.

I can see it's difficult for them to manage the numbers, but a blanket no seems unreasonable too. The nimbus scheme was supposed to stop all this but seems to have made matters worse.

There are just far too many people with the passes now. It pisses a lot of people off, even other RAP pass holders that they now have to queue for longer than previously. Its not good business for customers to feel like mugs, which rightly or wrongly they do.

This is the problem. Nobody can tolerate these length of queues easily, especially children. I mentioned my 9 year old son upthread who can't tolerate a queue for longer than 10 minutes. If he was autistic then I imagine he would be entitled to a ride access pass and it would be extremely tempting to apply for one as this would allow the whole family to enjoy the parks so much more. Anything with this level of advantage will always encourage piss takers and some will justify to themselves because their child (like almost every young child in the world) hates queuing.

You've put this really beautifully.

I'm not aiming this at anyone on this thread, but the recognition of previously aspergers type presentations and increased diagnosis has changed people's views on what autism is and how disabling it can be.

Advocacy is awesome and accessibility is important, but people with profound autism like my DB often find themselves outside of the conversation and their severe disabilities equated to those of people who will go to university, enter the workforce and live independently.

I feel so glum about this. He's been able to access a RAP in some form for 30 years, it's been such a positive thing for him and now it's gone.

My ASD child cannot cope with crowds so we just don’t go to these places. I don’t think she or her siblings have suffered because of this.

With growing ND diagnosis I’d imagine Merlin have had to tighten the criteria. You wouldn’t be happy if you joined what looked like a short queue only to find there were lots of non-queuers ahead of you. They cannot solely appeal to the ND community.

Their business model is based around queue times. None of their parks are doable in a day in peak times, this means people have to:

• Pay for fast passes
• or pay for a 2 day ticket, ideally with accommodation
• or pay for a Merlin pass

It's cynical. They had already limited RAP to a set number per day so it's not for reasons of crowd control. Merlin are massively in debt and are clearly hoping families with end up spending their DLA on fast passes.

The harsh reality is that the percentage of people with some kind of diagnosis is just too high these days. When the disability access still has a significant queue, then the system isn't working and they've had to make changes.

This isn't a sudden change, restrictions have been becoming tighter and tighter over the last few years and a large part of it is people abusing the system.

I remember a few years back there was a scandal where people were "hiring out" people with disabilities to come to Disney world with them so that they could skip all the queues. I don't think it will be long before we start seeing that type of behavior over here.

Surely it's more of a problem that Nimbus are giving everyone with ASD a' can't cope with crowds' symbol? If Nimbus were able to effectively look at the diagnosis and reports and then only give 'crowd issues' symbols to those who actually need them then there wouldn't be an issue?

FWIW, I won't take my children to Merlin parks anyway. The normal queue just didn't move at all while RAP/fast pass families went on. It was just a very stressful, boring day. I don't have additional needs but I choose to not spend money on standing in a couple of different queues for hours on end!

I think fast passes are by far the greater issue than RAP though. As someone has mentioned, theme parks without work much better.

DS has enjoyed theme parks for 18 years, he doesn't mind crowds but doesn't have the ability to understand time or queues. During this time the use of the passes has exploded and have unfortunately seen abuse first hand. Whilst I hate this it has been an inevitable decision. I am not sure that a system could be implemented that could filter those who need queue assist and those who it's preferable to have queue assist.

People were royally taking the piss though. My friend got a RAP pass due to having ADHD. She queued to see the queen's coffin, queued for a phone release (for 7 hours), and has no issue at all with queueing. She has no issues with crowds, is a regular festival goer (glasto). She did not need a RAP pass.

My son, 7 years old, ADHD and autism, 1:1 at school, cannot work with other children so has his own desk, cannot go on school trips unless his 1:1 or I accompany him, gets high rate care and low rate mobility DLA, etc is now unable to use his RAP, therefore we cannot go anymore.

The issue is that instead of doing what they do at Disneyland (we had to evidence the mobility element of DLA and for my sister her PIP, she is non verbal autistic), they have just put a blanket ban on neurodivergence. So high needs son, and my non-verbal sister are now excluded.

It is discrimination. It's awful.

Also I think it's shocking that they've just placed a 'can't deal with crowds' label on everyone. My sister is fine with crowds. She's non-verbal, with very high needs, but is oblivious to crowds around her. Ask her to wait in a queue for 120 minutes she will start harming herself by hitting her face, because she can't move and 1.5-2 hours is far too long for her. Stick her on a rollercoaster that has ten loop the loops and she's in absolute heaven! Hence why we always take (took) her to Alton towers.

I cannot believe that anyone who genuinely hates crowds would ever choose to go to a theme park. I wouldn't go if you paid me.

Maybe they wouldn't, but maybe they have siblings who love them and really want their crowd-hating sibling to come too? Just like some DC might really struggle with restaurants, and you could say just don't ever take them, but maybe they might have a sibling who would really love to go for pizza with their whole family for once?

Or maybe they don't like crowds but really love the feeling of roller coasters, or really love Lego etc?

I don't think it's unfathomable that you would hate crowds but still have a reason to visit a theme park.